The Current State of Health Care for People with Disabilities (PDF, 1685K)
TABLE OF CONTENTSExecutive Summary
- Health Coverage and Benefits
- Health and Health Disparities Research
- Professional Training and Education
- Americans with Disabilities Act(ADA) and Section 504 Monitoring and Enforcement
- Availability and Accuracy of Federal Health Data Concerning People with Disabilities
- Universal Design
- Health Care Accreditation
- Federal Legislation
- Disability Community Advocacy
- Effective Programs
- Need for the Study
- Overview: Disability Prevalence and Key Problems and Barriers to Health and Health Care for People with Disabilities
- Research Questions
- Research Methodology
- Organization of the Report
Chapter 1: Health and Disability
- Self-Assessed Health Status and Access to Care
- Gaps in and Barriers to Health Care for People with Disabilities
- Health Status and Unique Barriers to Care for Women with Disabilities, People Who Are Deaf or Hard of Hearing, People Who Are Blind or Have Vision Impairments, and People with Intellectual and Developmental Disabilities
- Conclusion and Recommendations
Chapter 2: Health Care and Federal Access Requir
Chapter 3: Legal and Administrative Framework for Health Care and Health Disparities Programs and Research
- Social Security Act
- Developmental Disabilties Assistance and Bill of Rights Act of 2000
- Title IX of the Public Health Service Act, As Added by Public Law 106-129
- Minority Health and Health Disparities Research and Education Act of 2000
- Title II of the Rehabilitation Act of 1973 and the National Institute on Disability and Rehabilitation Research
- Entities Created and Authorized Under the Public Health Service Act
- Conclusion and Recommendations
Chapter 4: Assessment of Key Federal Efforts That Promote Health for People with Disabilities
- Overview of Key Federal Efforts That Promote Health for People with Disabilities
- A Summary of Key Federal Health Disparities Initiatives for People with Disabilities
- Summary of Recent and Current Federal Efforts in Health Promotion and Disease Prevention for Women with Disabilities, People Who Are Blind or Have Vision Impairments, People Who Are Deaf or Hard of Hearing, and People with Intellectual and Developmental Disabilities
- Conclusion and Recommendations
Chapter 5: Availability and Accuracy of Federal Health Data Concerning Americans with Disabilities
- Use of Databases by Sponsoring Agencies To Understand the Health Care Experience of People with Disabilities
- Gaps in and Problems with Data Sources' Ability or Utilization for Providing Information About the Health Care Experiences of People with Disabilities
- Conclusion and Recommendations
Chapter 6: Summit on Health Care for People with Disabilities
Chapter 7: Examples of Effective Health Care, Research, and Related Programs for People with Disabilities
- People with Physical Disabilities — An Effective Program
- People with Developmental Disabilities — Effective Programs
- Women with Disabilities — Effective Programs
- People Who Are Blind or Have Vision Impairments — Effective Programs
- People Who Are Deaf or Hard of Hearing — Effective Programs
- Children with Disabilities — A Practice with Potential
- Professional Education — A Practice with Potential
- Conclusion and Recommendations
Chapter 8: Findings and Recommendations
- Findings Responding to the Research Questions
- Required Elements for Access to Health Care for People with Disabilities
- Health and Health Disparities Research
- Federal Agency Political and Structural Issues
- Professional Training and Education
- Federal Legislative Mandates and Funding
- Interagency Collaborations
- List of Recommendations
Appendix A: Key Informant Interviewees and Informational IntervieweesAppendix B: NCD Health Care Summit Participant List, April 2008Appendix C: List of Methods Related to Data Collection Assessment and Matrix of Selected Studies and DatasetsAppendix D: Key Federal Agency Definitions of Health DisparityAppendix E: NCD Health Care Summit Additional Recommendations for Reform and Stakeholder ActionsAppendix F: Additional NCD Health Care Summit Information: Summit Agenda, Summary of Oral Content Presentations, and Summit Planning Committee ListAppendix G: Mission of the National Council on DisabilityAcknowledgementsENDNOTES Executive Summary
Primary barriers to health and health care for the general population are beginning to be well documented, and heightened national awareness of these obstacles has spurred numerous proposals for health care reform. Among the groups that face such barriers are Americans with disabilities. Information remains limited, but recent studies indicate that people with disabilities experience both health disparities and specific problems in gaining access to appropriate health care, including health promotion and disease prevention programs and services. They also frequently lack either health insurance or coverage for necessary services such as specialty care, long-term care, care coordination, prescription medications, durable medical equipment, and assistive technologies.
Although there have been attempts to address some of these barriers, significant problems remain. For example, Federal health care funding agencies such as the Centers for Medicare & Medicaid Services (CMS) neither conduct oversight of Americans with Disabilities Act (ADA) architectural and programmatic accessibility compliance by states, health plans, and medical providers, nor assess health providers' disability cultural competence. Few professional health care training programs address disability issues in their curriculums , and most federally funded health disparities research does not recognize or include people with disabilities as a disparity population. These and related challenges will affect the quality of life, productivity, and well-being of greater numbers of Americans as the population ages, which is projected to lead to an increase in the number of people with disabilities. Given these changes, it is especially important to understand the complex and interrelated factors that contribute to health and health care inequities for people with disabilities, and to identify practical solutions.
According to the U.S. Census Bureau, of the 291.1 million people in the population in 2005, 54.4 million (18.7 percent) had some level of disability, and 35.0 million (12.0 percent) had a severe disability. Rates of disability also increase with age. By 2030, estimates suggest that the number of people aged 65 years and older will rise to 69.4 million from 34.7 million in 2000. People with disabilities comprise the largest and most important health care consumer group in the United States, yet the Institute of Medicine and others have warned that Federal agencies, policymakers, and health care systems have not yet responded to the broad-ranging implications, for individuals and for society, of the demographic increase in disability as the population ages.
People with disabilities tend to be in poorer health and to use health care at a significantly higher rate than people who do not have disabilities. They also experience a higher prevalence of secondary conditions and use preventive services at a lower rate than others. Moreover, people with disabilities are affected disproportionately by barriers to care. These barriers include health care provider stereotypes about disability, lack of appropriate training, and a lack of accessible medical facilities and examination equipment, sign language interpreters, and individualized accommodations.
People with certain disabilities experience specific health disparities and additional unique problems in accessing health care and services. If these problems can be resolved, crosscutting solutions hold the potential to improve health care for the broader disability community. For example:
- Women with significant disabilities are likely to have fewer Pap tests and mammograms than women who do not have disabilities, and they appear to have less knowledge and awareness of risk factors for cardiovascular disease and participate in less preventive screening for this disease compared with women without disabilities.
- Adults who are deaf or who experience significant problems hearing were three times as likely to report fair or poor health compared with those who did not have hearing impairments. American Sign Language (ASL) is the primary language for many people who are deaf, yet interpreters frequently are not provided during medical visits. Consequently, people who are deaf have significant difficulty communicating effectively with their health care providers and receiving health care information and instructions.
- Adults with developmental disabilities are at risk for hearing and vision difficulties, cardiovascular disease, obesity, seizures, mental health and behavioral problems, poor oral health, and poor general fitness. Young adults with developmental disabilities often encounter significant problems when they attempt to make the transition from coordinated childhood medical care to adult services. Problems include primary care physicians who are not trained to provide needed care and insurance schemes that do not adequately compensate health care providers for the time required to provide care and care coordination.
- People who experience significant vision loss are more likely to have heart disease and hypertension, experience a greater prevalence of obesity, and smoke more than the general population. Health care providers rarely supply printed health care instructions, educational materials, and information such as directions for taking prescription medications in accessible formats, and people who are blind or have vision impairments also appear to be excluded systematically from receiving high-quality diabetes education. Access to vision rehabilitation services also can be limited.
Complex historical and structural factors have contributed to the health and health care inequities people with disabilities experience. Research conducted by NCD revealed overarching problems related to the Federal effort to promote health for people with disabilities, identified deficiencies in the roles of certain key non-Federal stakeholders, captured important ideas for reorienting the discussion about future reforms, and identified effective health programs for people with disabilities.
NCD's key findings include the following:
- The health care system in the United States is complex, highly fragmented, and sometimes overly restrictive in terms of program eligibility. This leaves some people with disabilities with no health care coverage and others with cost-sharing obligations and limits on benefits that prevent them from obtaining health-preserving prescription medications, medical equipment, specialty care, dental and vision care, long-term care, and care coordination.
Health and Health Disparities Research
- Dissonance is evident in the research goals and objectives of key agencies of the Department of Health and Human Services (HHS) and the National Institutes of Health (NIH) between the longstanding public health goal of eliminating disability and disease and the emerging view fostered by the U.S. Surgeon General's report "Call to Action To Improve the Health and Wellness of Persons with Disabilities" and Focus Area 6 in "Healthy People 2010," which for the first time in public health parlance, defines disability as a demographic characteristic.
- Much of the Federal research effort remains focused on disability and disease prevention rather than on improving access to, and quality of, health care for people with disabilities, reducing their incidence of secondary health problems, and promoting healthy living.
- People with disabilities experience significant health disparities compared with people who do not have disabilities, yet they are not included in major Federal health disparities research, as mandated by the Minority Health and Health Disparities Research and Education Act of 2000 and undertaken by the National Center on Minority Health and Health Disparities (NCMHD) and other centers and institutes of NIH.
- It is very difficult to determine accurately the extent of the overall current Federal research effort aimed at addressing health disparities and promoting health and wellness for people with disabilities. This problem stems in part from the fact that no single Federal agency collects and catalogues health, health disparities, and health promotion research for people with disabilities conducted across all the agencies that have a role in health.
- Federally conducted or supported disability and health research appears to be poorly integrated into overall health disparities and health promotion research.
- Specific structural problems evident in Federal agency disability research functionally impede the development of a unified, coherent plan for disability and health research and program development. Specifically, (1) the level of funding and research is wholly inadequate to spur a coherent investigative strategy that will inform policy and planning for the growing number of people who will acquire disabilities with age and for the overall future impact of disability on society; and (2) within the Federal research community, commitment to disability health disparities and health promotion research is weak, and coordination mechanisms are lacking.
Professional Training and Education
- The absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers that prevent people with disabilities from receiving appropriate and effective health care.
- Disability competency is not a core curriculum requirement for (1) accreditation or receipt of Federal funding for most medical and dental schools and other professional health care training institutions; or (2) for hospitals to participate in federally funded medical student internship and residency programs. In addition, applicants who seek either a medical or other professional health care license are generally not required to demonstrate disability competency.
- Federal agencies such as the Health Resources and Services Administration (HRSA) have not identified people with disabilities or subgroups of people with disabilities as "underserved health care populations." As a result, recent medical school graduates are not eligible for Federal loan forgiveness programs sponsored by these agencies if they work with programs that serve people with disabilities, and they are not provided with incentives to work in these settings.
- Federal funding is limited for the development of core curriculums on disability competency for medical, dental, and other professional health education institutions.
Americans with Disabilities Act (ADA) and Section 504 Monitoring and Enforcement
- The ADA has had limited impact on how health care is delivered for people with disabilities. Significant architectural and programmatic accessibility barriers remain, and health care providers continue to lack awareness about steps they are required to take to ensure that patients with disabilities have access to appropriate, culturally competent care, and about incentives for implementing such steps.
- Federal agencies such as HHS, CMS, and HRSA do not require that procedures be established to collect information that would reveal the extent of compliance with the ADA and Section 504 of the 1973 Rehabilitation Act by the chain of recipients that administer health care funds and deliver health care. In the absence of such requirements as a condition of receiving funds, states simply pass through their nondiscrimination obligations in contracts with HMOs, health plans, and health provider organizations, which in turn pass on the same obligations to the health providers with whom they contract for services. Thus, Federal agencies, states, HMOs, and health plans take refuge behind the providers, who are subject to the lowest level of ADA and Section 504 obligations. In the end, no one is held responsible for physical and programmatic accessibility in health care facilities and programs.
- The U.S. Department of Justice and the Office for Civil Rights of the U.S. Department of Health and Human Services are charged with responsibility for enforcing the ADA and Section 504 in health care settings, yet they have taken on only a relatively small number of cases involving disability discrimination in health care, particularly when offices of health providers are involved. Without robust enforcement, the disability rights laws are ineffective tools for challenging discriminatory conduct or care that people with disabilities often report experiencing.
Availability and Accuracy of Federal Health Data Concerning People with Disabilities
- There appears to be progress in the development and use of a consistent indicator of disability in Federal health surveys. For example, (1) in a number of recent reports on health, disability is used as a population variable; (2) there has been increased attention to and acknowledgement of the importance of collecting data about the health care experiences of people with disabilities; (3) promising research is underway to develop survey questions that will gather information not previously measured about the health care experiences of people with disabilities; and (4) some surveys are developing and implementing data collection methods that will result in the inclusion of people with disabilities who were previously excluded from surveys.
- No regular sources of data exist to measure participation in wellness programs such as exercise classes, smoking cessation programs, or self-help or AA-type groups for substance abuse, nor do surveys ask people with disabilities about their access experiences with such programs.
- The calculation of long-term benefits for people with disabilities from participation in wellness and prevention programs depends on the presence of studies that have measured outcomes. Currently, few studies measure the outcomes of interventions for smoking cessation, increased mammography screening, exercise, or other programs for people with disabilities. Nor do studies show whether the participation of people with disabilities in programs for broader populations were affected by access issues. A clear understanding of impact will require further research on the outcomes of health and wellness programs that include people with disabilities.
- Key stakeholders from diverse communities highly recommended that principles of universal design be applied in all aspects and venues of health care, ranging from facilities design and construction to the development of quality measures, research design, and delivery of care that embrace everyone, including people with disabilities.
- Leading health care facility accreditation organizations, such as the Joint Commission, do not assess facilities for basic compliance with the ADA's architectural accessibility guidelines as a requirement for accreditation.
- Legislation will be required to address some of the key gaps and barriers to health care that affect people with disabilities, including access to wellness and prevention services, health and health disparities research, development of care models built on principles of patient-centered care, and professional training.
- Long-term health care reform must include the voices of people with disabilities, not only to advocate for improved health care insurance coverage, eligibility, and core benefits, but also to resolve issues of access to critical accommodations that ensure that health care is effective, such as payment coverage for sign language interpreters and requirements that providers demonstrate disability cultural competency.
The following effective health and health care programs for people with disabilities were identified.
- The Deaf Access Program (DAP) of Mt. Sinai Hospital, Chicago, which offers a comprehensive program that provides both medical and mental health services for 1,300 deaf children and adults
- A clinic operating in conjunction with the Sanford School of Medicine at the University of South Dakota, Sioux Falls, which identifies children on the Rosebud Reservation who are at risk for developmental disabilities and provides immediate care through early intervention
- The Center for Women with Disabilities, Magee-Women's Hospital, University of Pittsburgh Medical Center, which offers comprehensive, patient-centered care that integrates accessibility and accommodation for women with physical disabilities
- The LightHouse for the Blind and Visually Impaired, San Francisco Vision Loss Resource Center (VLRC) offers an adaptive technology and health seminar that provides an audio transcript and information handouts of presentations on adaptive equipment, including accessible tools for glucose monitoring, weight management, healthy food preparation, and exercise equipment that aid in maintaining health.
NCD has identified a broad range of recommendations for reforms that are required to address some of the most significant obstacles to health, health care, and disease prevention and health promotion for people with disabilities. Recommendations are directed to key stakeholders, including Congress and the Administration, accreditation and professional medical organizations, states, and non-Federal organizations concerned with disability, health, and health care policy and research.
Recommendations are organized and presented in four categories: (1) research; (2) professional education, training, and technical assistance; (3) monitoring, oversight, and accountability; and (4) improving systemic access to health care services and programs.
Some research is available concerning health and people with disabilities, yet significant problems, gaps, and challenges remain related to research needs. NCD has identified key areas in which additional research is required and recommends that specific actions be taken to ensure that issues of health and disability are included in ongoing research, and that new research is undertaken where it is needed. Research recommendations can be found in chapter 8, section H; they are numbered 1.1 through 1.18.
Professional Education, Training, and Technical Assistance
Information related to disability cultural competency is lacking in most professional medical education programs, and only limited information is available for health care institutions and providers about methods to ensure physical and programmatic access for people with disabilities. Moreover, disability competency is generally not a requirement for medical practitioner licensing, educational institution accreditation, or medical education loan forgiveness. NCD has identified recommendations intended to address these and related issues. Recommendations concerning professional education, training, and technical assistance can be found in chapter 8, section H; they are numbered 2.1 through 2.8.
Monitoring, Oversight, and Accountability
Limited implementation of key disability rights laws by health care systems, managed care organizations, and health care providers directly affects the quality of care available to people with disabilities. Poor Federal agency oversight of health care program and facility compliance with the ADA and Section 504 further exacerbates the problem. Likewise, leading accreditation organizations do not evaluate health care facilities for compliance with ADA architectural accessibility requirements. NCD has identified recommendations intended to increase oversight and spur enhanced compliance, thereby improving access to health care services and programs for people with disabilities. Recommendations concerning monitoring, oversight, and accountability can be found in chapter 8, section H; they are numbered 3.1 through 3.9.
Improving Systemic Access to Health Care Services and Programs
People with disabilities have identified specific gaps and barriers to health care that can only be resolved through changes in current public policy. Recognizing that some of these problems appear to be intractable and significantly affect health outcomes for people with disabilities, NCD has identified specific recommendations aimed at addressing the most immediate gaps and barriers to care. Recommendations for improving systemic access to health care services and programs can be found in chapter 8, section H; they are numbered 4.1 through 4.10.
IntroductionA. Need for the Study
Primary barriers to health and health care for the general population are becoming well documented, and heightened national awareness of these obstacles has spurred numerous proposals for health care reform. Among the groups that face such barriers are Americans with disabilities. Even as information remains limited, recent studies indicate that people with disabilities experience both health disparities and specific problems in gaining access to appropriate health care, including health promotion and disease prevention programs and services. They also frequently lack either health insurance or coverage for necessary services such as specialty care, long-term care, prescription medications, durable medical equipment, and assistive technologies.
Although attempts have been made to address some of these barriers, significant problems remain. For example, Federal health care funding agencies such as the Centers for Medicare & Medicaid Services (CMS) do not conduct oversight of Americans with Disabilities Act (ADA) architectural and programmatic accessibility compliance by states, health plans, and medical providers or assess health providers' disability cultural competence. Few health care training programs address disability issues in their curriculums, and most federally funded health disparities research does not recognize and include people with disabilities as a disparity population. These and related challenges will affect the quality of life, productivity, and well-being of greater numbers of Americans as the population ages and the number of people with disabilities increases. Given these changes, it is especially important to understand the complex and interrelated factors that contribute to health and health care inequities for people with disabilities, and to identify practical solutions.
NCD undertook "The Current State of Health Care for People with Disabilities" study to focus the nation's attention on these concerns and provide information and recommendations that will help guide the development of long-term solutions for Congress, the Administration, and other stakeholders, including health care organizations, insurers, health care providers, the health and disability research community, and people with disabilities.
This chapter sets the stage for the report by introducing key problems and barriers to health and health care, and summarizing health trends for the nation's 54.4 million people with disabilities. It also sets forth the project's research questions and presents a brief overview of the research methodology NCD used to collect and evaluate information. The chapter provides a short discussion of the differences among disability, impairment, and health condition, and why these distinctions are important, especially for health and health care policy and research. The chapter concludes with a short road map, or overview, of the report.
B. Overview: Disability Prevalence and Key Problems and Barriers to Health and Health Care for People with Disabilities
According to the U.S. Census Bureau, in 2005, of the 291.1 million people in the noninstitutionalized population, 54.4 million (18.7 percent) had some level of disability, and 35.0 million (12.0 percent) had a severe disability. Physical disabilities tend to be more common than sensory or mental health disabilities. African Americans and Hispanics typically experience disability at a higher rate than do whites. Rates of disability also increase with age; 41.9 percent of individuals over the age of 65 report disability, compared with 18.6 percent of people who are younger. Further, the numbers of older persons are expected to grow substantially during the next several decades. By 2030, the number of persons aged 65 years and older will rise to 69.4 million, from 34.7 million in 2000. By 2050, the number of individuals aged 85 and older will also increase significantly, to 18.2 million, from 4.3 million in 2000. Death rates from conditions such as heart disease are decreasing, which accounts for both the increase in life expectancies and an increase in the number of people who experience chronic disabilities, including arthritis, which is the leading cause of disability among adults.
Although it has been well documented that this rapidly growing demographic is among the largest and most important health care consumer groups in the United States, the Institute of Medicine (IOM) and others have warned that Federal agencies, policymakers, and health care systems have not yet mobilized their resources to respond to the broad-ranging implications of this increase in disability for individuals and for society.
Responding to the implications of an expanding population of people with disabilities necessitates addressing the disparities they experience. People with disabilities tend to be in poorer health and to use health care at a significantly higher rate than people who do not have disabilities. They also experience a higher prevalence of secondary conditions and use preventive services at lower rates. People with disabilities experience more problems accessing health care than other groups, and these difficulties increase for those with the most significant disabilities and who are in the poorest health. Moreover, lack of access to health care has been associated with increased risk for secondary conditions for people with significant disabilities.
Problems with accessing health care stem from barriers to care. People with disabilities are affected disproportionately by such barriers, including health care provider misinformation, stereotypes about disability, and lack of appropriate provider training; limited medical facility accessibility and lack of examination equipment that can be used by people with diverse disabilities; lack of sign language interpreters; lack of materials in formats that are accessible to people who are blind or have vision impairments; and lack of individualized accommodations. Many people with disabilities report gaps in health care insurance coverage that limit or prevent access to needed prescription drugs, durable medical equipment, specialist care, postacute and physical and vision rehabilitative services, and care coordination that are critical for health, independence, and self-determination. Further, inadequate transportation, limited personal assistance services, and patchwork financial assistance for people with low incomes compound the health problems and affect the overall health status of people with disabilities.
NCD set out to answer the following research questions for this report:
- What are the key Federal efforts that promote health care as it relates to Americans with disabilities, including wellness and prevention services, and how effective are these efforts?
- Are accurate health data available concerning Americans with disabilities?
- What are the access barriers to health care, including barriers to wellness and prevention services, for people with disabilities?
- What are the unique access barriers to health care for women with disabilities, people who are deaf or hard of hearing, people who are blind or have vision impairments, and people with intellectual and developmental disabilities?
- What programs initiated by the public and private sectors have improved access to coverage and care for Americans with disabilities?
- What are key disparities and gaps in third-party coverage of the types of programs and services most needed by Americans with disabilities, particularly women with disabilities, people who are deaf or hard of hearing, people who are blind or have vision impairments, and people with intellectual and developmental disabilities?
- How can the extensive recommendations identified in studies conducted by the Institute of Medicine and others be advanced?
- Are accurate health data available concerning access to wellness and prevention services and their relative long-term costs and benefits for Americans with disabilities?
- How effective are Federal efforts at health promotion and disease prevention (public health) as they affect Americans with disabilities, particularly women with disabilities, and people who are deaf or hard of hearing, people who are blind or have vision impairments, and people with intellectual and developmental disabilities?
- What are the long-term costs and benefits of third-party coverage of programs and services most needed by Americans with disabilities?
NCD undertook the following activities to collect and evaluate information for the report:
1. Conducted a Literature Review
An extensive literature review was undertaken to identify journal articles, studies, commentaries, conference proceedings, and other materials related to health, health care, health disparities, and health outcomes for people with disabilities. NCD consulted primary sources, including electronic databases, Federal agency resources, and specific academic journals, and spoke with key informants who identified specific reports and related documents. NCD also reviewed specific journals concerned with health and health care issues for the broad population of people with disabilities and for women with disabilities, people who are deaf or hard of hearing, people who are blind or have vision impairments, and people with intellectual and developmental disabilities.
2. Conducted Key Informant and Informational Interviews
Semistructured key informant telephone or in-person interviews were conducted with 23 subject matter experts concerned with health, access to health care, health disparities, and health outcomes for people with disabilities. Informants included health care practitioners, researchers, Federal agency officials, and individuals with disabilities. Individuals were specifically identified and interviewed who had expertise not only on health matters of concern to the broad community of people with disabilities but also to women with disabilities, people who are deaf or hard of hearing, people who are blind or have vision impairments, and people with intellectual and developmental disabilities. Data experts were also interviewed.
In addition to the key informant interviews, informational telephone interviews were conducted with an additional 20 Federal agency staff, health care professionals, program managers, researchers, and others to clarify the scope and duration of certain research and programmatic activities or to confirm specific information regarding programs that might be considered effective for increasing access to health care or improving health. (See appendix A for a list of key informants and others with whom interviews were conducted.)
3. Assessed the Role and Impact of Disability Rights Laws in Health and Health Care for People with Disabilities
NCD summarized the applicability, effectiveness, and impact of the Americans with Disabilities Act (ADA) and Section 504 of the 1973 Rehabilitation Act to health care services and facilities for people with disabilities and conducted a review of key cases and their impact under each law.
4. Reviewed the Legal and Administrative Framework for Key Health, Health Care, and Health Disparities Programs and Research
NCD reviewed the Federal legislation that established major health research and health care programs and other health initiatives to determine the extent to which people with disabilities are included, to identify problems and gaps as they relate to the health care needs of people with disabilities, and to identify opportunities for increasing their participation.
5. Reviewed Key Federal Health, Health Care, and Health Disparities Initiatives
NCD identified key Federal agencies, departments, centers, and offices whose missions include health and health care research, health promotion and disease prevention, program development, and health care service delivery. NCD then determined the extent to which health care issues, including health disparities for people with disabilities, had been identified as a topic for research and whether health promotion, public and professional education, program intervention, health care services delivery, and other related activities included people with disabilities and their issues.
6. Convened a Summit on Health Care for People with Disabilities
NCD convened a Summit on Health Care for People with Disabilities to translate current knowledge about the problems people with disabilities experience in health, health care, and health outcomes into a plan for action. Twenty-five key stakeholder/expert participants attended the two-day meeting. Attendees were opinion leaders in their fields, including people with disabilities, policymakers, health care providers, leaders of professional associations and accreditation organizations, and health policy experts.
The specific objectives of the summit were (1) to build on and refine the recommendations for systemic reform that have been identified by such organizations as the IOM, the U.S. Surgeon General, and others; (2) to identify step-by-step strategies for the implementation of key recommendations; and (3) to encourage participants to consider taking action within their spheres of influence. (See appendix B for a list of summit participants.)
7. Assessed Data Availability
NCD carried out a data assessment to determine the availability and accuracy of health data regarding Americans with disabilities. This review focused specifically on the current state of health care delivery for people with disabilities; health and health care disparities and access to wellness services by people with disabilities; and services specifically for women with disabilities, people who are deaf or hard of hearing, people who are blind or have vision impairments, and people with intellectual and developmental disabilities.
The data assessment was focused on the large national datasets that regularly collect information about the health status, health care utilization, and health care delivery experience of Americans. (See appendix C for a list of content, framing, collection, and other methods related to data collection assessment.)
8. Identified Effective Programs That Improve Access to Health Care for People with Disabilities
NCD identified examples of effective models in health care service delivery, professional education and training, disability competency assessment, and policy implementation. NCD also identified specific programs that serve women with disabilities, people who are deaf or hard of hearing, people who are blind or have vision impairments, and people with intellectual and developmental disabilities. Programs are included that meet three general criteria:
- They respond to specific needs that have been defined either by people with disabilities or others who are very familiar with the health and health care needs of people with disabilities.
- They are well established in terms of factors including longevity, funding, and institutional commitment.
- They have conducted customer satisfaction or other evaluations that were available for review to determine their effectiveness and to make improvements.
1. Disability, Impairment, and the Relationship Between Disability and Health
Concepts of disability, impairment, and the relationship between disability and health have been evolving over many decades. Historically, disability was measured solely by the presence of an impairment or health condition. Since the 1970s, spurred by the disability rights movement, there has been a move away from this medical view to an alternative that acknowledges the interplay between levels of impairment and the facilitating or limiting effects of the physical, social, technological, and economic environment. In 2001, the World Health Organization (WHO) adopted the International Classification of Functioning, Disability and Health (ICF), which attempts to provide a coherent, global interpretation of these different perspectives. The ICF is a classification of domains from perspectives of the body, the individual, and society. Since function and disability occur in a context, the ICF also includes a list of environmental factors. The ICF refers to disability as "an umbrella term for impairments, activity limitations, and participation restrictions." Most disability and health researchers and advocates agree that this unified definition reflects a meaningful balance of factors and provides a useful approach to understanding disability in the health research context. Important recent population research reflects the influence of the ICF, yet no survey fully applies the ICF's theoretical conceptualizations of disability. Various other, more traditional definitions of disability and impairment are still in use and appear throughout this report. They reflect the diverse perspectives, influence, and roles of the medical and research communities and of Federal agencies such as the Social Security Administration, as well as the impact of disability rights laws and policies.
2. Health Disparity, Health Inequality, and Health Inequity
The phrase "health disparity" is widely used in the articulation of health care research, funding, and service delivery priorities by both public and private organizations. The exact definition of health disparity varies. In some cases, it includes many population subgroups and indicators; in other cases, it is narrowly restricted to specific populations and health conditions. In broad terms, "health disparity" can be defined as "differences in health outcomes and health care access that occur between specific populations and the general population." Many discussions of the definition of health disparity note that it incorporates two concepts: health inequality and health inequity. Health inequality indicates differences in health outcomes, some of which may be unavoidable and not judged unfair (such as outcomes related to biological variation). Health inequity describes differences in health outcomes or health care services received that are considered avoidable, unfair, and unjust. In most instances in the United States, when the phrase "health disparity" is used, it is understood to describe circumstances in which differences are interpreted to indicate bias or unacceptable disproportion in health outcomes, aspects of health care system access, or differences in health treatment for one group compared with the general population. (See appendix D for several Federal agency definitions of disparity.)
Chapter 1 sets the context for the report by presenting a profile of the population of people with disabilities based on self-assessed health status, health risk factors, and participation in physical activity, and the extent to which they have access to health insurance and basic and preventive care compared with people who do not have disabilities. Next, specific gaps and barriers to care for people with disabilities are presented in more detail. To illustrate some of the specific problems people with disabilities experience, the chapter continues with a discussion of health and health care for four groups within the disability population: women with disabilities, people who are deaf or hard of hearing, people who are blind or have vision impairments, and people with intellectual and developmental disabilities. The chapter ends with recommendations for reform.
Chapter 2 describes how the 1990 Americans with Disabilities Act (ADA) and Section 504 of the 1973 Rehabilitation Act relate to health care services and facilities. It also examines some of the civil actions and settlements brought under these laws that illustrate both the usefulness and the shortcomings of individual and class action lawsuits in the area of health care. The chapter ends with recommendations for reform.
Chapter 3 summarizes key Federal laws that establish major health programs in the United States — such as Medicaid, Medicare, and the State Children's Health Insurance Program (SCHIP)—that serve significant numbers of people with disabilities. Laws are also introduced that relate to the Federal Government's response to the existence of health and health care disparities among specific population groups but that generally exclude people with disabilities. This chapter suggests reasons for fully including people with disabilities in the nation's ongoing effort to combat health and health care disparities. The chapter ends with recommendations for reform.
Chapter 4 examines the extent to which people with disabilities are or are not included in the recent activities of key Federal agencies, departments, and centers as they relate to health, health care, health promotion, disparities research, data collection, professional education, and other activities. The chapter also summarizes the Federal Government's level of effort related to health disparities research and program development for people with disabilities, and ends with recommendations for reform.
Chapter 5 reports on progress toward collecting data that help shape health research goals and health care policy and programs so that the specific needs of people with disabilities are identified and included. The chapter ends with recommendations for reform.
Chapter 6 reports on outcomes of the Summit on Health Care for People with Disabilities. The meeting brought together health care experts, opinion leaders, Federal agency and disability community representatives, researchers, funders, and practitioners to discuss barriers to health and health care for people with disabilities and to create a strategic action plan to begin to address the problems. The chapter ends with recommendations for reform.
Chapter 7 presents examples of effective programs that emphasize health and mental health care, as well as health education and promotion for people with disabilities, including women with disabilities, people who are deaf or hard of hearing, people who are blind or have vision impairments, and people with intellectual and developmental disabilities. Chapter 7 also includes several projects that involve structural innovations holding some promise for improving health care and health outcomes for people with disabilities. The chapter ends with recommendations for reform.
Chapter 8 presents a summary of answers to the research questions and an overall analysis of findings, and lists the recommendations presented earlier.
Appendixes A through F provide additional information that supplement issues presented in the report.
CHAPTER 1. Health and Disability
The health of people with disabilities is gaining national attention, and new research is beginning to sharpen the focus on the health status of people with disabilities, the barriers to care they encounter, and factors that contribute to their health risks, including participation in health promotion and disease prevention programs. Such studies are also revealing in greater detail the extent to which people with disabilities have access to health care insurance, regular sources of care, and appropriate services — including specialty care and assistive technologies—under both publicly funded and private coverage.
The chapter begins with a profile of the population of people with disabilities based on self-assessed health status, health risk factors, and participation in physical activity, and the extent to which they have access to health insurance and basic care and preventive care, compared with people who do not have disabilities. Next, specific gaps and barriers to care for people with disabilities are presented in more detail. To illustrate some of the specific problems people with disabilities experience, the chapter continues with a discussion of health and health care for four groups within the disability population: women with disabilities, people who are deaf or hard of hearing, people who are blind or have vision impairments, and people with intellectual and developmental disabilities. The chapter ends with recommendations for reform.
A. Self-Assessed Health Status and Access to Care
1. Defining Disability
A 2008 special report by the CDC's National Center for Health Statistics (NCHS) tackles the challenging problem of defining disability by relating two levels of activity difficulty and by limitation to health status and other health indicators. The report also acknowledges the interaction of disability with environmental and social factors. Using 5 years of data from the National Health Interview Survey (NHIS), the report provides a comparative analysis across dimensions that include health status, health risk factors, and access to care and clinical services for people with various levels of activity limitations and for people who do not have disabilities.
According to the study, about 62 million (30 percent) of noninstitutionalized people living in the United States experienced either some difficulty with "basic" movement, or cognitive, sensory, or emotional problems. (See exhibit 1-1.) The most common problem reported by more than one-fifth of those surveyed relates to basic physical actions such as walking, bending, and reaching. A little over 13 percent reported problems with vision or hearing, and about 3 percent reported emotional or cognitive difficulties.
About 14 percent of noninstitutionalized people experience "complex activity limitations" in their ability to participate fully in social roles, including maintaining a household, working, pursuing hobbies, visiting friends, and going to the movies or sporting events. In some cases, these activity measures can overlap and describe the same person.
2. Health and Disability
About half of people with complex limitations and one-third of people with basic actions difficulties assessed their health status as fair or poor, compared with the three-fourths of adults who did not have a disability who assessed their health as excellent or very good. Health status declines with age for people with and without disabilities. Across people in all age categories (18-64 years), however, the percentage reporting fair or poor health was greater among those with complex activity limitations than among those with basic actions difficulties. Fair or poor health status was more likely to be reported by people with cognitive problems or self-care limitations.
3. Health Behaviors and Risk Factors
Adults with disabilities are more likely to be overweight or obese than adults without disabilities. According to the NCHS report, almost one-third of people with complex activity limitations and 30 percent of people with basic actions difficulties were obese, compared with 19 percent of adults who did not have disabilities. (See exhibit 1-2.)
About 40 percent of adults aged 18 to 44 with either basic actions difficulty or complex activity limitations reported that they currently smoke, compared with 22 percent of adults in the same group who do not have disabilities. (See exhibit 1-3.) Although smoking declines with age, among adults aged 65 or older in basic and complex activity groups, about 9 percent still smoked. The NCHS study also found that about 40 percent of adults with complex activity limitations and 25 percent of people with basic actions difficulties identified themselves as drinkers. While these percentages suggest significant alcohol use among people with disabilities, they compare with 65 percent of people who do not have disabilities and report that they are drinkers. (See exhibit 1-4.) Further, patterns of heavy drinking (five or more drinks per day on 21 or more days in the past year) were similar for people with basic actions difficulty and complex activity limitations and those who did not have disabilities. Men were more than twice as likely as women to be heavy drinkers in all three groups.
The benefits of physical activity in reducing risks for various conditions-including cardiovascular disease, osteoporosis, and diabetes-are well documented. However, adults with all types of activity limitations were less likely to participate in leisure time physical activity than adults without disabilities. Only about 15 percent of people with complex activity limitations reported that they engaged in regular physical activity, while 21 percent of adults with basic actions difficulties engaged in such activity, compared with 35 percent of adults who do not have disabilities. (See exhibit 1-5.) Various barriers may prevent people with disabilities from engaging in physical activity, barriers including lack of access to fitness facilities, inaccessible exercise equipment, lack of access to adapted sports programs, or physical inability to exercise.
4. Access to Health Care
Insurance coverage tends to determine whether people with disabilities visit a doctor regularly or have access to a usual source of medical care. Adults with disabilities were less likely than those without disabilities to have private health insurance coverage. According to the NCHS study, less than half of people with complex activity limitations and about 61 percent of people with basic actions difficulties had private coverage, compared with about 75 percent of people who did not report having a disability when the study was conducted. (See exhibit 1-6.) Although public insurance programs—including Medicaid and Medicare—cover many people with disabilities, they do not provide coverage for everyone who does not have private insurance. (See exhibit 1-7.) During the period 2001-2005, about 19 percent of adults with a basic actions difficulty and 17 percent of those with a complex activity limitation reported being uninsured. These figures compare with about 19 percent of adults who do not have a disability who were without insurance. Twenty-eight percent of people with emotional disabilities reported being uninsured, the highest rate among people with disabilities, followed by 20 percent of people who are blind or have vision impairments or who are deaf or hard of hearing. Eleven percent of those with self-care limitations reported that they did not have insurance, the lowest uninsured rate of any group.
Having access to a regular source of health care fosters control of chronic conditions and facilitates the acquisition of preventive services. The NCHS study reports that adults aged 18-44 were more likely to lack a regular source of medical care than older adults, regardless of disability status. However, fewer people with basic actions difficulty and complex activity limitations reported lacking access to usual care compared with people with no disabilities. For people aged 18-44, 16 percent of those with a complex activity limitation, 20 percent of those with a basic actions difficulty, and 22 percent of those with no reported disability did not have a usual place of medical care. (See exhibit 1-8.)
5. Use of Certain Preventive Services
Regular Pap tests and mammography studies are used to identify certain breast and cervical cancers and other conditions in women. The NCHS study found that women aged 18 and older with disabilities were less likely to have had a Pap test within the past 3 years than women without disabilities. (See exhibit 1.9.) Seventy-one percent of women in this age group with basic actions difficulties and 65 percent of women with complex activity limitations had had the test, compared with about 83 percent of women without disabilities.
For women aged 65 and older, 53 percent with basic actions difficulties and 46 percent with complex activity limitations had a Pap test in the past 3 years, compared with 67 percent of women who did not have disabilities. (See exhibit 1-10.)
Evidence of the effectiveness of mammography screening is greatest for women between the ages of 50 and 69, and annual exams are recommended for women 40 years and older. The NCHS study reports that mammography rates were higher for women who did not have disabilities than for women with both basic actions difficulties and complex activity limitations. (See exhibit 1-11.) Seventy-four percent of women who did not have disabilities had mammography exams, compared with 67 percent of women with basic actions difficulties and 61 percent of women with complex activity limitations. Women with limitations in their ability to perform certain instrumental and other activities of daily living had mammography exams at the lowest rate (51 percent), followed closely by only 52 percent of women with cognitive disabilities who received the test.
B. Gaps in and Barriers to Health Care for People with Disabilities
1. Health Care Insurance
Health care insurance availability, affordability, and coverage for important benefits—including medications, long-term care, durable medical equipment, mental health, rehabilitative and specialty care, and care coordination — are key issues for people with disabilities. Yet national surveys have reported that people with disabilities commonly experience difficulty navigating the insurance system, finding and obtaining approval to visit specialists, and obtaining durable medical equipment. Estimates suggest that these factors obstruct or delay care for as many as 30 - 50 percent of adults with disabilities. One national survey found that health insurance is inadequate for more than one in three people with disabilities who reported delaying care, skipping medication, or going without needed equipment because of cost. People who do not have health insurance face the greatest challenges.
Publicly financed health insurance provides an important safety net for many people with disabilities. Medicaid provides health and long-term care coverage for 8 million low-income individuals with disabilities and chronic illnesses, and Medicare covers about 7 million people with disabilities who are under age 65. Both Medicare & Medicaid beneficiaries, however, have reported difficulties obtaining the care and services they require. With higher copayments, Medicare beneficiaries with disabilities report significant cost-related problems, including forgoing needed equipment, postponing care, and paying for long-term care. Further, Medicare imposes a 2-year waiting period for coverage for individuals who are under age 65 who become eligible for the program when they receive Social Security Disability Insurance (SSDI). While cost-sharing is lower under Medicaid, people with disabilities who are covered by the program report, among various problems, difficulties finding physicians who will accept Medicaid payments, which compromises access to care for those with low incomes. Seventy-eight percent of Medicaid beneficiaries with disabilities qualify for Medicaid because they meet the income and asset limitations required for receipt of Supplemental Security Income (SSI). For many of these low - income beneficiaries, however, essential health care services — including dental and vision care, medical supplies, and durable ho — may be out of reach financially, even with low cost-sharing under Medicaid.
Further, although many people with disabilities have some type of health insurance, a significant number of individuals with chronic health conditions remain uninsured. According to the NHIS, nearly half of all uninsured, nonelderly adults report having a chronic condition, and almost half of those forgo medical care or prescription drugs because of the cost. Nonelderly adults who lack health insurance include people with hypertension (14 percent uninsured), high cholesterol (11 percent uninsured), heart disease (13 percent uninsured), asthma (18 percent uninsured), diabetes (15 percent uninsured), and arthritis-related conditions (12 percent uninsured).
Private group plan health insurance is usually offered through employers and some trade unions. However, many working-age individuals with disabilities do not qualify for such coverage, because they are not employed; work part time (only 31 percent of workers with part-time jobs qualify for employer group plans, compared with 82 percent of full-time workers); or their employers do not offer health insurance. Employer-sponsored health insurance is also becoming less available as health premiums increase at rates consistently greater than inflation. The average annual group premium for a family of four in 2007 was $12,106, nearly double what it was in 2000.
For those who have employer-sponsored group health insurance, plans often do not provide adequate benefits for people with disabilities, because they are crafted to cover basic care required by average working populations with fewer health care needs. For example, private insurance plans increasingly limit annual payments for durable medical equipment such as wheelchairs, crutches, braces, and ventilators, regardless of medical necessity and at a level that makes the individual's out-of-pocket costs for higher priced items such as motorized wheelchairs prohibitively expensive. Many private insurance plans also limit mental health services and prescription drugs, which are generally restricted to medications on approved lists, or formularies. Private insurance plans also do not reimburse providers for sign language interpreters or cover the cost of vision rehabilitation for people who are blind or who have vision impairments. For families who have a child with intellectual and developmental disabilities and complex medical problems, private insurance does not provide for adequate reimbursement to health care providers for key services such as specialty care and care coordination.
Purchasing individual private insurance is rarely an option for people with disabilities, because it is unaffordable or because they are denied coverage outright on the basis of disability. While group plans may not exclude an individual with a disability from coverage, no such prohibition exists for individual private insurance. For example, a General Accounting Office (GAO) study found that individuals with HIV, heart disease, or leukemia are "virtually always" denied individual private health insurance. People with other disabilities have also been denied full coverage, including those with orthopedic impairments, mental health disabilities, diabetes, asthma, arthritis, nervous system disorders, cancer, mobility disabilities, and vision impairments.
In addition to paying more for an individual plan than a group plan, purchasers are often charged premiums that are higher than those charged to individuals without disabilities. One study examined the availability of individual health insurance coverage for hypothetical individuals with minor and major health problems. The study found that these hypothetical individuals were unable to obtain coverage at the standard rate 90 percent of the time, and benefit restrictions and premium surcharges were imposed on the applications that were accepted.
2. Third-party Coverage of Health Programs and Services Most Needed by Americans with Disabilities
The structure for payment of health care services in the United States is based on third-party payers, either through private insurance or through the public insurance programs including Medicare, Medicaid, SCHIP, and Title V. Health care services are sufficiently costly that it is not feasible to assume that those without a third-party payer can afford to pay out of pocket. For the 45.7 million Americans without health insurance, this means mostly going without care until health problems are urgent. In these circumstances, providers may never be adequately compensated for the care they provide, and individuals may find themselves struggling with large health-care-related debt. For people with disabilities, as for most Americans, assessments about the impact of the third-party payment structure on long-term costs and benefits are wrapped up in the larger national policy debate about how best to finance health care so that it meets the two objectives of enabling everyone to access appropriate quality care and controlling the rapid rise of health care expenditures.
As the discussion in the preceding section on health insurance gaps indicates, people with disabilities rely greatly on health insurance. Those who do not have insurance or are inadequately insured often delay care or go without care. Both circumstances can produce high costs in the long run, to the health care system and to individual patients. While not intrinsic to the concept of third-party payment, the current structure permits the denial of coverage based on health status or prior health events. It also has led to the development of a reimbursement system geared to the expenses of acute medical care. This leaves people with chronic conditions and the costs of chronic care with less coverage. The costs of durable medical equipment and other assistive devices, which often are not considered "medical," sometimes fall outside the insurance coverage umbrella.
For people with disabilities to derive benefits from health insurance coverage that are similar to those for people without disabilities, third-party coverage needs to include some specific services and supports, such as care coordination, access to specialty providers, rehabilitative services, prescription drugs, durable medical equipment and assistive technologies. Third-party reimbursement also should account for the need for longer appointments, assistance with communication (e.g., sign language interpreters), and other modifications in the processes used to deliver care to ensure equitable quality in the health care received by people with disabilities.
Currently, there is no body of research demonstrating with any certainty the long-term costs and benefits of third-party health care coverage that incorporates the services that may be most needed by people with disabilities. The best that can be offered is a hypothesis for future research: Better third-party coverage of people with disabilities and the services they need will result in longer, healthier lives; improved overall health status; greater productivity and community participation; and less high-cost care for conditions for which earlier intervention is effective.
3. Lack of Health Care Provider Training and Awareness
Among barriers that affect the quality of care that people with disabilities receive, lack of disability competency and awareness among health care providers ranks high with focus group participants and in other participatory research. Physicians and other care providers themselves report inadequate training and awareness. In a survey of Connecticut physicians, 91 percent of primary care physicians revealed that they had received no training in intellectual and developmental disabilities, and 71 percent thought they would benefit from such training. Most respondents thought that providing care for people with intellectual and developmental disabilities was likely to be more difficult than caring for other patients.
Lack of disability and knowledge is a leading barrier to care, according to women with disabilities and those with diverse disabilities, including people who are deaf or hard of hearing, people who are blind or have vision impairments, and people with intellectual and developmental disabilities. Without appropriate training and awareness, health care providers hold incorrect assumptions and stereotypes about people with disabilities, which can affect every aspect of care and can result in inadequate and inappropriate care. Research has revealed, for example, that some providers incorrectly assume that people with disabilities do not have a good quality of life; that people with developmental disabilities do not feel pain and, therefore, do not require anesthesia; that people who are deaf have cognitive deficits because they may not be fluent in standard English; and that women with disabilities do not require reproductive counseling and care because they may be incorrectly perceived as sexually inactive. Beyond undermining quality of care, such humiliating and frustrating encounters with health care providers can damage patient-provider trust and deter people with disabilities from seeking care.
4. Structural and Communication Barriers
People with disabilities encounter other structural barriers to health care, including inadequate transportation, lack of architectural accessibility in the facilities and offices of health care providers, and lack of accessible exam and diagnostic equipment. Communication barriers are also frequently cited as problems that prevent access to care or reduce the quality of care that people with disabilities receive.
For many people with mobility disabilities, access to examination and diagnostic equipment such as mammogram machines can be difficult or impossible if the equipment is not height-adjustable. Medical office staff members often are not trained to provide lifting assistance and are unwilling to lift patients onto inaccessible examination tables. Some patients do not wish to be lifted, out of fear that they will be dropped or injured. Health care providers, therefore, frequently conduct examinations or diagnostic tests while patients are seated in their wheelchairs, which can generate inaccurate test results or conceal physical evidence required for appropriate diagnosis and treatment. This fact was made evident by one of the plaintiffs who participated in a landmark lawsuit, brought in 2000 against the largest nonprofit health maintenance organization in the country. This plaintiff was usually "examined" in his wheelchair during his check-ups rather than given needed lift or transfer assistance. He developed a pressure sore that remained undetected, became infected, and eventually required surgery. Recent research reports that about 5,596,000 Americans live with paralysis from causes such as strokes, spinal cord injury, and multiple sclerosis; this is about 40 percent more than previously estimated, thereby adding to the urgency of the need to address structural barriers to care.
For many people with disabilities, poor communication with providers and limited time for office visits reduces the quality of care they receive and may impede diagnosis of new health conditions and prolong or leave untreated chronic health problems. Communications difficulties have long been reported by people who are deaf or hard of hearing. Standard English is not the primary language for many people who become deaf prelingually. People who become deaf prelingually constitute a distinct cultural and linguistic minority, and they do not always communicate effectively in English. Their primary language is likely to be American Sign Language (ASL); yet interpreters frequently are not provided during medical visits. As a consequence, people who are deaf often have significant difficulty communicating effectively with their health care providers and receiving health care information and instructions. Lack of interpreters impedes effective communication, which serves as a disincentive to seeking care. People who are hard of hearing often have difficulty communicating effectively with health care professionals, who may be unaware of appropriate techniques for communication and who rarely provide accommodations, such as conducting an examination in a room with limited ambient noise, offering assistive listening devices, or scheduling additional time to ensure that the patient has understood the information being provided. Other people with disabilities, including people who are blind, report that medical providers sometimes do not speak to them directly and do not make prescription information, return appointment, and other health care instructions available in formats that are accessible. Diabetes care training can be difficult to obtain for people who are blind or have vision disabilities, because some diabetes care professionals are not aware of blood glucose testing equipment that provides an audio output of readings. People with developmental disabilities also report difficulty communicating with some health care providers, because too little time is available during standard office visits for discussion of complex health issues or the appropriate, understandable presentation of information so that people with developmental disabilities can participate in their health care decisions and become informed about wellness and prevention activities.
C. Health Status and Unique Barriers to Care for Women with Disabilities, People Who Are Deaf or Hard of Hearing, People Who Are Blind or Have Vision Impairments, and People with Intellectual and Developmental Disabilities
Research has shown that certain groups within the disability population sometimes experience specific health disparities and, in some cases, unique and ongoing problems accessing health care. Among many such groups, the following discussion examines specific health and health care problems and issues for four groups: women with disabilities, people who are deaf or hard of hearing, people who are blind or have vision impairments, and people with intellectual and developmental disabilities. Elucidating health disparities and barriers to health care for these groups brings into focus the scope and magnitude of difficulties and problems faced by the broader disability community into focus. Moreover, solutions that benefit members of these groups will also have a crosscutting impact on those with multiple impairments and those who belong to specific demographic populations, thereby improving access to care for everyone.
1. Women with Disabilities
Women experience different challenges to health and wellness than men do. Among women living in the United States, as many as one in five experiences some level of disability, a number that is growing as the population ages. However, there is limited research about the health status, barriers to health care, and level of participation in health and wellness programs of this large and important group.
Many of the known health disparities women with disabilities experience are rooted in longstanding structural, financial, and personal barriers to health care access. These include limited access to culturally competent care from primary and specialty providers; negative provider attitudes; lack of insurance, including medical, dental, prescription, and vision insurance; and restrictive coverage under available health plans. Additional barriers include poor access to services and programs dedicated to wellness and prevention; inaccessibility of health facilities, services, and diagnostic and examination equipment; ineffective communication between provider and patient; and inadequate transportation.
Public health research on health disparities experienced by women with disabilities receives only a fraction of overall disparity research funding, which focuses primarily on racial and ethnic minority populations. While these populations also include women with disabilities, and women who are members of racial and ethnic minorities face additional health disparities and risks, research and program development funds that would aid in understanding and responding to the unique needs of women with disabilities are limited. Federal health, wellness and prevention, and literacy programs have not yet fully recognized, acknowledged, or responded to the unique health and health care issues of women with disabilities.
a. Disability Prevalence Among Women
In 2005, according to the U.S. Census Bureau, 20.1 percent of girls and women in the noninstitutionalized civilian population reported disability, compared with 17.3 percent of males. Further, severe disability was more prevalent among girls and women (13.4 percent) than among males (10.6 percent). The number of women living in nursing homes is 1 million—5.3 percent of the population of women over age 65. This statistic does not include girls under age five, women in the military, or women in any type of congregate living situation besides nursing homes, such as dormitories or group homes. It is not clear whether this statistic also excludes women living in nursing homes who are under age 65.
Disability affects women more significantly as they age. Among women aged 16 to 64, a little over 17 percent have one or more disabilities, compared with 43 percent of women who are 65 or older. The incidence of severe disability is higher among African American women (15.4 percent) than among Hispanic women (10.0 percent) and white non-Hispanic women (13.8 percent).
b. Health Status and Health Experiences
Recent research reveals that women with disabilities experience poorer health than women who do not have disabilities, despite the fact that both groups report the same types of health problems. Nearly a third of women with extensive functional limitations rate their overall health as poor compared with less than 1 percent of women with no limitations.
One study of Medicaid beneficiaries concluded that women with disabilities were about 50 percent less likely than women who did not have disabilities to be satisfied with their medical care. These women were 24 percent less likely to have received a Pap test during the previous year than women without disabilities and were nearly three times more likely than women without disabilities to have postponed needed medical care. Outcomes for this group were substantially worse in terms of receiving necessary medical care and being able to obtain prescription drugs. Women with disabilities who received Medicaid were more than twice as likely to have postponed taking medication they needed during the previous 12 months.
As they age, women with disabilities tend to have poorer health than women who do not have disabilities. They are more likely to be overweight, smoke, have high blood pressure, and experience mental health problems. Women with more significant disabilities are more likely to live alone, be unemployed, have less education, be divorced, and live in poverty.
According to the 2008 NCHS study, about 30 percent of women with basic actions difficulties were overweight, and 31 percent were obese. Among those with complex activity limitations, almost 30 percent reported being overweight, and over 34 percent were obese. Slightly over 23 percent of women with complex activity limitations smoke, compared with 22.5 percent of women with basic actions difficulties.
c. Barriers to Health Care
Physical, attitudinal, and policy barriers; lack of information about how disability affects health; limited finances; and inadequate personal assistance limit access to health care services for women with disabilities. Many women with disabilities also face multiple barriers to health care because of racial or ethnic minority membership, sexual orientation, type of disability, or geographic location.
Women report that financial and cost concerns and inadequate health insurance are the primary reasons they cannot obtain needed services. Women with disabilities who had three or more functional limitations were more likely to report being unable to general medical and dental care, prescriptions, or eyeglasses, regardless of age group, compared with women who do not have disabilities. Women with disabilities also report problems with access to prevention services.
- Health Care Coverage
For most noninstitutionalized people in the United States, health insurance coverage determines the extent to which they have access to every aspect of health care. This includes access to inpatient care, prescription drugs, diagnostic procedures, durable medical equipment, and prevention and health promotion services and programs. Most women over age 65 are covered by Medicare. Among women under age 65, women with disabilities are much less likely to have private health insurance than women who do not have disabilities.
Most private insurance is available through employers. Women with disabilities have higher rates of unemployment, underemployment, and poverty, and therefore are less likely to have access to private health insurance. They are also less likely to be married than women who do not have disabilities, and therefore are less likely to be covered by a spouse's policy. Among women who do not have disabilities, slightly over 75 percent have private insurance, compared with almost 62 percent of women with basic actions difficulties and only about 49 percent of women with complex activity limitations.
Women with disabilities are more likely than women without disabilities to be covered by publicly financed health care programs, primarily Medicare and also Medicaid, which provides health coverage for low-income people with disabilities under age 65. Medicaid generally provides a higher level of certain services, assistive technologies, long-term care, and prescription drugs than either most private health plans or Medicare. Nearly 28 percent of women with complex activity limitations are covered by the Medicaid program, while 16 percent of women with less significant disabilities are Medicaid beneficiaries. Depending on the level of disability, 15 and18 percent of women with disabilities who are age 18 to 64 have no health care coverage at all.
Even when a woman with disabilities has health insurance, her plan may not adequately cover required prescriptions, physical or occupational therapy, durable and expendable medical equipment and supplies, assistive devices, or personal assistance services. Limited coverage or lack of coverage means that both women and men with disabilities must often pay higher out-of-pocket expenses than people who do not have disabilities. These out-of-pocket expenses include deductibles and copayments for needed services, prescriptions, and equipment. The more significant a person's disability, the higher the probability that out-of-pocket expenses will be greater.
- Reproductive Care
Women with disabilities require health services related to sexuality, reproductive care, and childbearing, just as women without disabilities do. However, social misperceptions and stereotypes about disability can make it difficult for women with disabilities to obtain information, medical care, and services to ensure that their reproductive needs are met. Such needs include routine gynecological and breast examinations; screening for sexually transmitted diseases (STDs); contraception; consultations about sexuality and sexual function; fertility consultation and support; obstetrical care during pregnancy, labor, and delivery; and information about healthy parenting and about issues related to menopause, including osteoporosis, loss of libido, and insomnia.
Structural barriers to receiving adequate and informed reproductive care include limited professional training and competency of primary care and reproductive care specialists; inadequate or no health insurance coverage for visits to specialists; poor physical access to usable and adapted or specialized examination and diagnostic equipment; and negative or discriminatory provider attitudes.
According to one qualitative study, health care providers sometimes expressed surprise that women with disabilities would be sexually active. As a result, they frequently did not discuss the use of contraceptives or evaluate the women for STDs. Some women with disabilities reported that they avoid regular visits to the gynecologist because services are so difficult to obtain. In a telling example, one study reported that a gynecologist caring for a woman who uses a wheelchair assumed she was not sexually active and, therefore, saw no need to test for STDs. In another example that arose during focus group research, a deaf woman spoke about her doctor's negative attitude toward people who are deaf.
The doctor had a mask on so I could not read his lips, but we had this interpreter with us, and [she interpreted when] the doctor said, "Well, the Deaf woman should tie her tubes so she doesn't get pregnant again."
Among women who received Medicaid, women with disabilities were also more likely to have had emergency room visits, hospital admissions during pregnancy, cesarean deliveries, and readmissions within three months of delivery.
d. Disease Prevention and Health Promotion
Few studies have been conducted that document the use of primary health care and disease prevention services by women with disabilities. The existence of a primary disability can increase the possibility that a woman with a disability will acquire secondary conditions. One national study comparing health care and preventive care among women with and without disabilities concluded that women with disabilities experience worse health care and worse preventive care than women without disabilities. Wellness promotion and health screening tests are essential to avert secondary conditions that can reduce functional capacity, diminish quality of life, and potentially lead to early death. Yet women with disabilities face numerous hurdles to participation in health screening programs. Measures that support wellness, including exercise, can be difficult or impossible for women with certain disabilities, because most exercise equipment is inaccessible and exercise facilities rarely accommodate people with disabilities. For women with disabilities, factors such as having both health insurance and a regular source of health care predicted whether or not they received all types of clinical preventive services.
- Breast and Cervical Cancer Screening and Treatment
Women with disabilities frequently face barriers to health care access that may delay detection and increase poor outcomes from breast cancer. One study that focused on breast cancer screening also noted that financial, architectural, environmental, and attitudinal barriers particularly affected the health care services received by women with physical disabilities. In this study, women with disabilities reported that their health care providers held them in lower regard and were more likely to disregard or overlook symptoms when treating women without disabilities. Outcomes from focus groups conducted in Massachusetts include the following anecdote:
In one particularly troubling instance, a provider's value judgment about a patient with mental retardation led to a year-long delay in treatment for a life-threatening medical condition. The patient suffered from advanced breast cancer that required surgery, but her physician implied that due to her already low quality of life (owing to her disability), she did not merit the intervention, and her guardian did not want to make the decision to go forward without the physician's support. This woman reportedly died within a year, and there was concern that her death may have been precipitated by the delay in surgery.
In a large breast cancer study of more than 100,000 women, those who received Social Security Disability Insurance (SSDI) and who had Medicare coverage had lower rates of breast-conserving surgery than other women (43.2 percent versus 49.2 percent).
Women with SSDI and Medicare who had breast-conserving surgery were also less likely than other women to receive radiotherapy and axillary lymph node dissection. These women had lower survival rates from all causes and specifically from breast cancer. Explanations for such disparities could include lack of early diagnosis, lack of breast health awareness or education on the part of the woman herself, inaccessible or unreliable transportation, and cultural capacity of the treating facility. Inaccessible equipment and other physical barriers could also add to the problem.
Another recent study compared breast cancer treatment for women with disabilities who had Medicare insurance through health maintenance organizations, fee-for-service health care programs, or a combination of both. This study concluded that women with continuous HMO insurance had earlier stage breast cancer diagnosis and were more likely to receive radiation therapy following breast-conserving surgery. Women with continuous HMO insurance had a higher rate of breast cancer survival, primarily resulting from earlier stage diagnosis.
The following example from a national summit on health care for women with disabilities illustrates disparities in breast health care and early breast cancer diagnosis.
A 42-year-old woman with paraplegia notices a lump in her right breast. Her medical provider tells her it is a bulging pectoral muscle from pushing her wheelchair. Later diagnosed with Stage III breast cancer, she dies within three years.
In focus groups with deaf women, some participants in the study expressed limited awareness of the importance of mammography and breast self-examination. During the focus groups, facilitators became aware of several women who clearly required breast care. The following comments from participants underscore their need for access to information about health screening as well as education about the importance of regular examinations:
Participant 1: I've never had a mammogram, not in 15 years, and I don't need one. I feel fine. I don't feel sick at all.
Participant 2: I don't want to have a mammogram—I'm scared of the radiation! Radiation will destroy my breast.
Participant 3 (over 65 years of age): I went every year for a checkup with my family doctor; he never advised me to get a mammogram.
Several studies report that women with disabilities who had significant functional limitations were much less likely to receive Pap tests and mammograms, even when they had health insurance, than women with disabilities who had fewer limitations. Similarly, in a study intended to compare prevention procedure rates of Medicare beneficiaries with disabilities, women with the most significant disabilities reported fewer Pap tests and mammograms compared with those without disabilities. Women with significant disabilities were 57 percent less likely to report receiving Pap tests and 56 percent less likely to report receiving mammograms compared with women who did not have disabilities, regardless of age. The 2008 NCHS study reports that 64.6 percent of women with complex activity limitations and 70.8 percent of women with basic actions difficulty had received a Pap test within the past 3 years, compared with 82.5 percent of women who did not have disabilities.
The following illustrates the indifference of one physician when faced with patients who may be difficult to examine or treat.
A nurse for a woman with mental retardation who had difficulty undergoing gynecological exams reported that the woman's doctor downplayed the importance of such exams for the woman, ostensibly because she was not sexually active.
- Cardiovascular Disease Prevention
Although it is a major cause of death in the United States, cardiovascular disease (CVD) has received little attention in women with disabilities. Recent research suggests that women with disabilities had less awareness of CVD risk factors and have participated in less preventive screening for CVD than women without disabilities. Even when women seek care for potential cardiovascular problems, inadequate diagnostic techniques can result in dire outcomes. This problem was illustrated in a 2007 article published by the Journal of the American Medical Association (JAMA) that highlighted an example of how women with disabilities do not always receive a standard of care afforded women who do not have disabilities.
Susan, who uses a wheelchair, had trouble breathing. She needed an echocardiogram, which was performed while she sat in her wheelchair [rather than lying in the supine position] . The echocardiogram was of poor technical quality and yielded little information.
Research suggests that measurement of weight, electrocardiograms, and inquiries about smoking habits occurred less frequently for women with disabilities than for women of similar age without disabilities. Women with disabilities who are physically inactive and postmenopausal were likely to be at higher risk for CVD. The risk of CVD, therefore, appears to be under-recognized and under-assessed, particularly in women with physical disabilities.
The structural and environmental problems and barriers to health and health care services and programs experienced by women with disabilities call for additional research funding and a heightened public health emphasis on women with disabilities in all programs concerned with women's health. Future public health research, policy, and health program initiatives should fully foster and integrate issues and concerns of women with disabilities. Such initiatives include those in professional medical training institutions, in continuing education of medical professionals, and in Federal intramural and extramural research focused on health and wellness. Future health disparities research must specifically investigate secondary health disparities, such as obesity, and the outcome of programs aimed at reducing these disparities, including disease prevention and health promotion activities for women with disabilities.
2. People Who Are Deaf or Hard of Hearing
People who are deaf or hard of hearing experience extensive, largely unrecognized communication problems when they seek health care services. One researcher eloquently summarized these difficulties.
Deaf or hard of hearing individuals in the U.S. must often cope with extraordinary communication barriers when working with their health care providers; receive health care services that are inadequate, inappropriate for their needs, and unethical due to the interplay of numerous complex individual, interpersonal, and systematic factors; and have a poorer self-reported health status than the general population. Within the subset of the U.S. population that uses English as a second language, Deaf individuals may be at greatest risk for poor physician-patient communication.
a. Prevalence of Deafness and Hearing Loss
Definitions of hearing impairment vary widely, as do estimates of the number of people in the United States who are deaf or hard of hearing. According to a 2008 report published by the National Center for Health Statistics (NCHS), 37,000,000 adults experience some degree of hearing loss, ranging from a little trouble hearing to deafness. About 3.3 percent of adults in the United States who are over age 18 experience deafness or have a lot of trouble hearing. Hearing impairment is the sixth most common chronic condition in the civilian population. Some estimates suggest that more than 4,800,000 people in the United States have hearing impairments severe enough that they cannot hear or understand speech, while other estimates indicate that roughly 1,800,000 people in the United States are deaf.
As with many other disabilities, the prevalence of hearing loss increases dramatically as the population ages. The number of people who experience deafness or who have a lot of trouble hearing increases from 0.9 percent among adults under the age of 45 to 3.1 percent among those aged 45 to 64. Among adults over 65, 11.1 percent report deafness or a lot of trouble hearing. Similarly, the number of people who experience lesser hearing loss also increases with age: 27 percent of people aged 65 and over report a lot of trouble hearing.
b. Health Status and Health Experiences
According to health experts, research about the health status, health behaviors, risk factors, and diseases experienced by people who are deaf or hard of hearing is limited, because research is generally focused on hearing loss itself. Moreover, early studies may be misleading, because they excluded certain important segments of the deaf population. Conflicting research and a relative lack of data, therefore, make it particularly challenging to identify the health care needs of this heterogeneous group. Further, few studies have examined deaf adults' experiences with the health care delivery system. Research has revealed, however, some important preliminary information about the health status of people who are deaf or hard of hearing, as well as some of the pressing problems this community encounters in the health care delivery system.
- A Distinct Cultural and Linguistic Group
Most researchers and most deaf individuals consider the Deaf community a distinct cultural and linguistic group. As a distinct group, the Deaf community is entitled to the same acknowledgment that society affords other groups with their own culture and language. The syntax and grammar of American Sign Language (ASL) is independent of English, and those who use it are a distinct linguistic group. People who use ASL as their primary language share experiences that parallel those of other cultural and linguistic minority groups. For example, the Deaf community shares a cultural heritage that includes similar family and educational experiences, and common social and community interests. Similarities to other minority groups include limited use of English in day-to-day communication; limited access to information from radio, television, and other forms of mass media; lack of access to information that is present in the ambient environment; and dependence on family members, friends, and others as interpreters.
People who use ASL frequently identify their linguistic identity by spelling "Deaf" with an uppercase "D," while "deaf" with a small "d" indicates hearing impairment as a physiological characteristic. However, not all people who are deaf identify with the cultural minority that uses ASL. The U.S. Census and other large population and health surveys do not inquire about ASL use, so the size of this community is not known; estimates range from 100,000 to 1,000,000 people. Among adults who are deaf, about 8 percent acquired their disability prelingually (i.e. before the age of three), and an estimated additional 11 percent became deaf between the ages of 3 and 19.
- Health Disparities
The 2008 NCHS study reports that as hearing loss increases, people experience a higher prevalence of fair or poor health status; problems walking, bending, and reaching; and psychological distress. Adults in the study who were deaf or who experienced significant problems hearing were three times as likely to report fair or poor health compared with those who did not have hearing impairments. Hypertension and diabetes were more prevalent among adults who were deaf or had a lot of trouble hearing than among those who did not; they were highest among adults under age 65. People who were deaf or had a lot of trouble hearing were more likely to smoke (40 percent of those between ages 18 and 44, compared with 24 percent of people who were not deaf or hard of hearing). People who were deaf or had a lot of trouble hearing were also more likely to be overweight and less likely to participate in leisure time physical activity. The NCHS study and other research have also shown that people who are deaf or have a lot of trouble hearing are more likely to drink alcohol at higher rates than adults with no hearing difficulties, and have more difficulty finding appropriate accessible treatment services and programs. More than 40 percent of adults who are deaf, or have a lot of trouble hearing, smoke cigarettes, compared with 24 percent of people who do not have hearing problems. Deaf women of color appear to experience the greatest health disparities and difficulty accessing appropriate health care. They tend to have lower incomes and poorer health, and to be less educated compared with white women. Among women of color, African American deaf women experience the greatest health disadvantages.
- Health Care Experiences
People who are deaf or hard of hearing have a range of experiences with health care professionals, and these experiences may differ according to when they acquired hearing loss or became deaf. However, people who are deaf or hard of hearing have different health care experiences compared with people who do not have hearing loss. One study suggests that people who become deaf prelingually use health care at about the same rate as other minority language groups, while people who become deaf postlingually use health care services at about the same rate as individuals who have chronic illnesses. Medicare beneficiaries over age 65 who experience some hearing loss report lower satisfaction with health care access and quality of care than do other groups.
c. Barriers to Health Care
- Lack of Effective Communication
Communicating effectively in health care settings presents complex challenges for people who are deaf or hard of hearing. Research has revealed that people who are deaf or hard of hearing identify similar communication problems that compromise health care, including the following:
... medication errors and misdiagnoses, problems during surgery and anesthesia, missed and delayed appointments, and less complete and accurate information than other patients receive.
Hearing loss varies from person to person, and communication styles and needs can be unique to the individual. As a result, diverse, individualized strategies are necessary to achieve effective communication. For example, while many people who are deaf communicate using ASL, others who are deaf or hard of hearing use speech-reading, speaking, writing, or a combination of these methods. Some people who are hard of hearing also use hearing aids or other devices, including assistive listening devices that are necessary to communicate effectively during medical visits. For others who are hard of hearing, effective communication may require that their health care provider modify the way he or she speaks. Because most hearing loss occurs in the higher frequencies, the provider's speech may be more accessible if he or she speaks in a lower voice. The patients may also need for the provider to be face to face and avoid turning away or covering his or her face. Some people may benefit if noise distractions are reduced.
Some people with hearing loss, including older people, may not acknowledge their hearing loss and may act as though they understand what is being communicated, while not in fact understanding. These individuals may require additional time and attention during health care provider visits to ensure that information has been communicated clearly and effectively. Also, communications can be especially demanding physically and emotionally for patients who are deaf or hard of hearing, making fatigue a potential factor in determining effective communication. One study concluded that older adults with mild-to-moderate hearing loss may expend so much cognitive energy trying to hear accurately that their ability to remember spoken language suffers as a result. Thus, they may have difficulty retaining information presented during a health care visit.
Most health care practitioners have little understanding of how people with hearing loss communicate or how to communicate effectively with them. This lack of awareness directly affects the quality of health care these practitioners can provide.
Focus group research has revealed widespread problems that affect health outcomes for many people; these problems often begin with provider assumptions about hearing loss. Most providers mistakenly assume that people who are deaf are fluent in both ASL and English. However, ASL is completely independent of English and does not have a written form. Attempts to write ASL using standard English words produces what appears to be broken English. This "broken" English leads some providers to assume that their deaf patients lack intelligence, an assumption they may not make about other people who are not fluent in English. If an immigrant from China with a Ph.D. in physics wrote in broken English, the health care provider would probably assume that the immigrant's communication difficulties stemmed from the language barrier. However, lack of awareness about ASL and assumptions about people who are deaf lead health care providers to incorrectly assume that a patient with limited English skills is cognitively impaired. As evidence of this, deaf patients often report that their physicians do not appear to respect their intelligence and think that they do not want to take responsibility for their health.
People who are deaf or hard of hearing report that health care providers rarely use appropriate and effective methods of communication. Problems begin when an individual attempts to schedule an appointment with a health care provider and continue during office visits, diagnostic procedures, emergency room visits, hospitalizations, and even in hospice care. Health care providers sometimes do not understand that providing appropriate methods of communication is medically necessary to ensure that health care is effective. Rather than asking the person what method of communication would be most effective, physicians and other health care practitioners frequently employ modes of communication that do not take into account specific individual needs. For example, they may rely on family members to interpret for patients who are deaf. Patients who are deaf can find it difficult to request an interpreter, because they are concerned that physicians might question the need or might expect the deaf individual to pay for the interpreter. In addition, some people who are deaf have reported that health care providers have denied requests for interpreters. Others have noted that interpreter services are not reimbursed by insurers, which presents a serious barrier to hiring them.
Many people who are deaf or significantly hard of hearing communicate using Internet technologies, including videophone/video relay interpreting services (VP/VRS), facsimile (FAX), text messaging, and instant messaging. Others use older technologies such as text telephones (TTYs), devices that allow the user to place a telephone call and then type a message to a person who also has such a device. Many people with hearing, speech, and language difficulties use the nationwide relay service established by the 1990 Americans with Disabilities Act (ADA). The relay service allows a caller using an Internet connection or TTY to contact a relay operator, who in turn places a call to the desired person and then "relays" the conversation between the two parties. Most health care practitioners, however, either are unaware that many people who are deaf and significantly hard of hearing people communicate using these technologies or are uncomfortable using them to communicate with patients. Moreover, some health care providers have raised the concern that these modes of communication do not preserve confidentiality and might violate the Health Insurance Portability and Accountability Act (HIPAA), even though they are the modes by which people who are deaf communicate most effectively.
Most practitioners have complex menu-driven voice message systems that make it difficult for relay operators to type the options to the caller before the connection times out. Thus, people who are deaf or hard of hearing are sometimes unable to make appointments with their health care providers or communicate directly with them. Regarding these basic communication barriers, one focus group participant said:
We just go right to the hospital. I wouldn't call my doctor at all. I just go right to the emergency room.
Typically, health care providers expect deaf patients to be able to read their handwriting or to lip-read as they speak. Deaf participants from several focus groups said they had significant problems with writing as a mode of communication, not only because it is slow and inefficient, but also because the vocabulary is unfamiliar and the handwriting often illegible. Because ASL is not English, medical terms are often interpreted using a vision description rather than a single corresponding word. This means that many deaf individuals never have the opportunity to learn medical terms. For example, there is no sign for the word "cholesterol," so a certified interpreter would describe cholesterol as a type of fat build-up in the blood vessels. Another interpreter might simply finger spell the word "cholesterol," but the patient might not know what the word means. Syntax differences between English and ASL can compound the communication problem when unfamiliar medical terms are used. Similarly, speech-reading is ineffective because only about 30 to 40 percent of spoken English can be understood using this technique. One focus group participant illustrated the problems with speech-reading.
I was so shocked when they had five people, doctors and aides.... All these people came towards me.... I wondered what was going on. So I started writing notes to them.... I could see they were talking.... I had no idea why there were five people there looking at me....
Many deaf participants in focus groups said that they frequently relied on family members or friends to interpret for them during medical visits. This practice not only raises serious confidentiality issues for the person who is receiving care but also does not necessarily ensure effective communication between the patient and clinician. Health care providers typically overestimate the sign language skills of friends or family members who are neither trained in medical interpretation nor certified as sign language interpreters. Sometimes young children interpret for parents or family members. However, it can be quite difficult for children to accurately convey medical information. They may not fully understand the information or may find the information distressing. People who are deaf may have difficulty understanding their health care provider's instructions about therapeutic programs, prescription dosages, or side effects, which can lead to new health problems and reinforce stereotypes about the intellectual capacity of the person who is deaf. In one study, a deaf participant talked about having surgery without an interpreter available.
I needed a tonsillectomy. I went to the hospital and I was scared. I was sedated and anesthetized, and I woke up afterwards, scared and crying. I didn't know what to expect or what was going on with the swelling. There was no interpreter there.
Another deaf individual noted that the problems are a deterrent to seeking care.
There are a lot of deaf people who won't go to the doctor. [They think] I'll just bear with it until it goes away.
In several studies, deaf focus group participants indicated that communication is most effective when they have the opportunity to work with medically experienced, certified ASL interpreters. However, often an interpreter is not available. One study revealed that even though physicians acknowledged that communication with deaf patients was most effective when ASL interpreters were available, they did not employ them frequently. This study also revealed that physicians overestimated the accuracy of speech-reading.
When people who are deaf or hard of hearing have access to deaf-friendly medical organizations (i.e., organizations in which methods for effective communication such as ASL interpreters and assistive listening devices are readily available and providers understand cultural aspects of deafness), screening rates for colorectal, cervical, and breast cancer are similar to rates for the general population.
- Mental Health System Concerns
For some people who are deaf or hard of hearing, longstanding concern over the lack of qualified interpreters is greater when seeking mental health services, where inadequate communication has sometimes resulted in inappropriate institutionalization and loss of liberty. Research has shown that some people who are deaf or hard of hearing distrust mental health providers in part because of concerns that communications will be ineffective in mental health settings. Some focus group participants expressed fear that confidentiality might be violated and that the ASL skill levels of interpreters would not be adequate. Others said that in mental health settings people who were deaf were at the mercy of hearing authorities, who were likely to be prejudiced about deafness. Participants in several studies expressed the concern that people who were deaf could mistakenly be committed to mental health facilities solely because of barriers to communication. People who are deaf or hard of hearing have expressed strong concern that mental health professionals have misdiagnosed patients who are deaf and prescribed incorrect medication for them because of stigma, stereotypes, and ineffective communication.
Some health care providers who are deaf or hard of hearing have observed that standard psychological testing can be inappropriate for people who are deaf because testers are rarely fluent in ASL and rarely understand Deaf culture. Deaf patients who were willing to visit a therapist preferred to work with a deaf therapist. If that was not possible, they preferred to work with mental health counselors and therapists who were fluent in sign language.
Perceptions of mental health services can also depend on age. A study of senior, middle-aged, and young adults who were deaf asked the subjects what they would do if they needed mental health services. Those in the senior group said they would seek help from a friend or family member, while younger people said they would probably seek a mental health professional.
- Lack of Insurance Coverage
According to unpublished data from the 2007 National Health Interview Survey, among people in the U.S. civilian population between the ages of 18 and 64 who identify as deaf or hard of hearing, 21.3 percent do not have any health insurance, while 34.2 percent are covered by private insurance, and 55.3 percent are covered by public insurance (30.1 percent by Medicare and 27.9 percent by Medicaid).
d. Disease Prevention and Health Promotion
Studies suggest that people who are deaf or hard of hearing experience specific barriers to participating in prevention programs, may have limited access to appropriate and accessible information about health promotion activities, and may not understand why such programs and activities are important. In particular, adults who are deaf tend to have less health literacy compared with the hearing population.
Lack of access to information in the media limits awareness of health-related information on the part of people who are deaf. Topics such as the latest health studies, and information about prevention and health services, nutrition, alcohol and substance abuse, sex education, and domestic violence prevention, are often discussed in popular media outlets, which are typically presented only in an audible format. It is not surprising, then, that adults who are deaf tend to have less health literacy compared with the hearing population. Some people who are deaf or hard of hearing are unaware of mental health services available in the community and unfamiliar with terminology used by mental health practitioners, suggesting a lack of information about these services as well.
For example, a comprehensive survey of 203 deaf patients in two health care systems that offer programs and services aimed at the Deaf community illustrated the respondents' lack of basic knowledge about health conditions. Forty percent of survey participants could not identify any of the seven most common warning signs of a heart attack, while 62 percent could not identify any of the seven most common warning signs of a stroke. In fact, 32 percent of study participants could not identify any risk factors for a heart attack or stroke, and one in three could not define the word "cancer." In another study, more than 70 percent of deaf participants said that people who were deaf could not get HIV, and more than 50 percent did not know the meaning of "HIV-positive." According to one survey, high school students who are deaf or hard of hearing had some understanding about HIV and AIDS, but there were significant gaps in their awareness of how the infection is prevented and transmitted.
Focus group research has shown that women who are deaf have unique linguistic and cultural issues that affect their health and their health care experiences. Participants were unaware of the need to assess health risks through prevention and diagnostic screening procedures, including those for cardiovascular disease. Some participants also lacked knowledge and information about screening and diagnostic procedures for breast and cervical cancer, and about the purpose and importance of treatments such as surgery.
In general, women reported that they avoided visiting a health care provider because of the lack of effective communication, although they also reported positive experiences with some practitioners who use qualified interpreters. Studies comparing the prenatal health care of women who are deaf and women without hearing impairments reveal significant differences between the two groups. Women who were deaf were less satisfied with their prenatal care than hearing women, and they expressed less satisfaction with the quality of communication with their health care provider. When deaf patients had access to ASL interpreters and to providers who understand cultural aspects of deafness, screening rates for colorectal, cervical, and breast cancer were similar to rates for the general population.
A recent literature survey produced no information specifically aimed at men who are deaf regarding the benefits of early screening, detection, and treatment of prostate cancer. In response to this gap, a prostate cancer education program was adapted and tested on a small sample of men whose baseline knowledge about the disease increased, as shown in followup surveys. While this program evolved into an Internet ASL-accessible video on prostate health, research on the effectiveness of this strategy must still be conducted, and ensuring that all men who are deaf have access to such information remains a challenge.
Similarly, little research has been carried out on tobacco use by youth who are deaf or hard of hearing. However, a recent study reveals that middle and high school students generally smoke less than their hearing peers, and that students who attend integrated educational programs were more likely to have tried smoking than their peers in schools for deaf students. This study also shows that although health care providers are important sources of prevention information, few students reported that they had received anti tobacco messages from their health care providers or in clinical settings—another missed opportunity to convey prevention guidance.
There is a tremendous need for increased attention to issues people who are deaf or hard of hearing have identified as deterrents to their health promotion and health care. The longstanding problems that arise from inequities in communication and poor access to culturally and linguistically appropriate health care and health information have failed to draw the level of institutional response from policymakers that is required to bring about systemic change.
At a minimum, additional public resources must be allocated to encourage and support ASL interpreter training and payment for interpreter services in medical settings. Congress should explicitly direct Medicare & Medicaid to pay for interpreter services, and states should require private health insurers to include payment for interpreters as a reimbursable expense to health care professionals or as an accepted cost to be negotiated in managed care provider payment schemes.
There is also an important role for medical educators, who must train young professionals, including people who are deaf or hard of hearing, about issues of concern to the Deaf community and challenge negative stereotypes that currently influence practitioners' attitudes and methods for providing care. Accreditation organizations must include methods in their survey and monitoring mechanisms to evaluate the extent to which health care facilities have the capacity to provide interpreters for deaf or hard-of-hearing patients in a timely and effective manner. Patient education materials should also be assessed and modified to ensure that they are accessible.
3. People Who Are Blind or Have Vision Impairments
In the United States, vision impairment and blindness rank among the top 10 most common disabilities, and aging is associated with the leading causes of vision loss. While the population of people who are blind or have vision impairments is heterogeneous and generally similar to the general population, the group as a whole tends to be older and poorer, and to include more women. The number of people who are blind in the United States is projected to increase by 70 percent to 1.6 million by 2020, with a similar rise projected for vision impairment. Research has shown that these conditions can be associated with a reduced quality of life and shorter life expectancy.
a. Prevalence of Blindness and Vision Impairment
Approximately 10 percent of the population aged 18 and older experiences vision problems, defined as difficulty seeing even when using glasses or contact lenses. Among these, 0.7 million people (0.3 percent) are blind. Women are more likely to have vision impairments than men, and vision problems increase with age. More than two-thirds of adults who have vision impairments are over age 65, and the leading causes of vision impairment in the United States are age-related. These include cataracts, macular degeneration, glaucoma, and diabetic retinopathy.
Diabetes is the leading cause of blindness among adults aged 20 to 74; between 12,000 and 24,000 new cases of blindness attributed to diabetes are reported annually.
Income, education, and membership in certain racial and ethnic minority groups are significantly associated with vision impairment. For example, 16 percent of adults in poor families had vision difficulties, compared with 9 percent of adults in families that were not poor. People who are Hispanic have higher rates of vision impairment than people who are African American, and both groups have higher rates than those for people who are white. In addition, approximately 27 percent of the 4 million people living in nursing homes have vision impairments. These individuals have not been counted or included in national health surveys until recently.
b. Health Status and Health Experiences
- Health Disparities
Approximately 30 percent of people over age 18 who have vision impairments rate their overall health status as either "fair" or "poor," compared with 8 percent of the population that does not have vision impairments. They also experience a greater prevalence of obesity. Studies suggest that slightly over 26 percent of adults with severe vision impairments are obese, compared with only 15 percent of adults who do not have such vision loss. Numerous medical conditions have been linked to obesity and being overweight, including Type II diabetes, cardiovascular and pulmonary disease, certain cancers, sleep apnea, and liver and gallbladder disease. Adults with vision impairments are also more likely to have heart disease and hypertension than the general population. People with significant vision impairments also smoke more than the general population.
People who experience significant vision loss report higher rates of depression and anxiety than people without vision impairments. One study reports that among the estimated 5.7 million older people who have vision impairments, 3.3 million are at increased risk for mild or moderate depression, and 350,000 may experience severe depression. Recent evidence suggests that young and middle-aged people who develop vision loss, rather than experiencing it from birth, may have depression at even higher rates than older adults. Further, some evidence suggests that adults who have vision impairments and have depression are less likely to seek vision rehabilitation services. When they do participate in these services, they have poorer outcomes than people who have vision impairments and do not have depression.
Among Medicare beneficiaries, 8.1 percent of people with severe vision impairments indicate dissatisfaction with the overall quality of their health care, compared with about 4 percent of the general population. About 11 percent of Medicare users who have vision impairments report that they do not receive adequate information from their providers about their health conditions, compared with 6 percent of people who do not have vision disabilities. Within the population of older people, vision impairment is associated with reduced mobility, falls, increases in hip fractures, depression, and even mortality.
Adults under age 65 who are covered by Medicaid are more likely to have problems with their vision than those who have private insurance or no insurance. Among adults age 65 and over, those covered by Medicaid and Medicare are more likely to have vision problems than those with only Medicare health care coverage or private insurance.
- Health Experiences
National surveys provide new information about the health of people who are blind or have vision impairments, as well as about their general satisfaction with health care. However, few studies inquire in detail about the health care experiences of people who are blind or have vision impairments, or explore their ideas for improving their care.
One cross-disability focus group study revealed that people with diverse disabilities, including people who are blind or who have vision impairments, have encountered disrespect, insensitivity, and lack of disability awareness in health care settings. Distressing encounters with the health care system can lead to distrust and even fear, which in turn leads people to avoid getting health care.
One participant in a focus group of people who are blind or have vision impairments described how he would like to be treated by health care providers.
We are not accepted as a... human being, over and over again. We have got to be seen as persons of worth and people who actually can contribute to our own care.... We should be treated as individuals with intelligence.
Similarly, older persons with vision disabilities may find it difficult to negotiate an unfamiliar health care setting and, as a result, appear confused or hesitant. This demeanor can lead to misunderstandings and even spark impatience on the part of health care professionals, leading to a negative experience for the person who has the vision disability.
c. Barriers to Health Care
- Lack of Health Care Provider Awareness
Participants in one focus group frequently reported that health care providers and their staffs were unaware of how to relate appropriately to people who are blind or have vision impairments. They indicated that some health care providers are uncomfortable communicating with patients who are blind or have vision impairments. For example, providers frequently speak to a companion who is sighted, rather than speaking directly to the person who is seeking medical care. Almost 10 percent of people who have vision impairments indicate that clinicians tend to focus on discrete symptoms rather than on the whole person, compared with 5.1 percent of people who do not have vision impairments. One woman who is blind described her experiences with her health care providers.
They don't really know how to deal with a blind person. They don't know how to treat you. As opposed to coming up and saying, "I'm so-and-so. I'm going to take you in the room now," they grab you. They snatch you. They push you. They'll grab you around the shoulders and push you along.
People who are blind or have vision impairments may also need assistance filling out forms. They report that, while office staff are willing to assist them, the staff frequently do so in the waiting area. Doing this means that patient confidentiality cannot be maintained.
- Lack of Transportation and Facility Accessibility
Focus group participants also identified other barriers to care. Barriers related to public transit included lack of public transportation in suburban and rural areas, difficulty scheduling rides, and difficulty relying on paratransit to get to appointments on time. Barriers in the facilities of health care providers included lack of appropriate, accessible signage using Braille and raised letters. Without such signs, it is difficult to identify destinations within suites of medical offices.
- Poor Diabetes Care and Lack of Information in Accessible Formats
Health care providers rarely supply information in formats that are accessible to people who are blind or have vision impairments. Health care instructions, educational materials, and information about medications are typically provided only in print. Outcomes from one focus group indicate that people who are blind or have vision impairments do not receive diabetes education and care equivalent to people without vision impairments.
Many people who are blind or have vision impairments and who also have diabetes report that diabetes care professionals are poorly equipped to serve them appropriately. Professionals rarely understand their need for information in an accessible format. One informal survey revealed that three of nine diabetes educators recommended that their patients who have vision impairments get help from a sighted person rather than learn self-care for their diabetes. Further, this survey revealed that health care providers are generally unaware of speech-output devices that enable people who have vision impairments to measure their blood sugar and blood pressure independently. Managing diabetes properly requires training and regular monitoring, so individuals who have vision impairments must be able to do so independently. However, these barriers act as a deterrent for many. Recognizing the urgency of this problem, the leading national organizations in the United States that work on behalf of people who are blind and have vision impairments published a consensus statement calling for accessible diabetes education.
In addition to blood glucose and blood pressure information, people who are blind or have vision impairments also require access to prescription information. Conventional medication vials provide information only in printed form, but new technology has been developed that provides independent access to print information required to identify and use prescription medications. Called ScripTalk, the system involves an encoding unit housed at the pharmacy that is attached to the computer that pharmacists use to create print prescription labels. This unit creates a prescription label containing a tiny chip in which information is embedded. The label is read by a battery-powered radio frequency identification reader in the possession of the person who is blind or who has a vision impairment. Thus far, only the Department of Veterans Affairs (VA) is making ScripTalk available to veterans with vision loss. ScripTalk, or other similar technologies as they develop should be made available in pharmacies and to people with vision impairments to meet the critical need for such customers to have full and independent access to prescription medication information. Further, public and private health care insurance plans should include this technology in coverage agreements to ensure that it is readily available to those who need it.
- Lack of Insurance Coverage for Mental Health Services
Although the demand for mental health services is great, funding is inadequate and available services cannot meet the need. Medicare and Medicaid provide some mental health care. However, significant disparities exist between the coverage they provide for physical health services and the coverage they provide for services related to mental health. Insurance reimbursement frequently requires people who need mental health services to pay higher deductibles and copayments for mental health care than for physical care. Insurers often cap benefits and restrict the number of treatment visits as well. Further compounding the problem, primary care and mental health providers sometimes incorrectly assume that an individual's mental health problem relates directly to her or his vision impairment. They may refer the individual to vision rehabilitation services, which do not treat the underlying depression.
- Limited Vision Rehabilitation
Vision rehabilitation provides opportunities for many people who are blind or have vision impairments to regain personal and functional independence. Vision rehabilitation typically includes such services as "low vision evaluations; training in techniques for using one's remaining vision; provision of low vision devices and training in their use; mobility training to enable a person to travel safely indoors and outdoors; and training in adaptive techniques for communication and for home and personal management." However, access to vision rehabilitation services is limited, in part because of eligibility definitions. Even people who are eligible for services may not know that they are available or may find their cost prohibitive. Further, too few vision care specialists, including ophthalmologists and optometrists, refer eligible people who have vision impairments to vision rehabilitation services. This is largely because these services have typically been provided by social service or community organizations rather than through traditional health care service delivery systems.
For working-age people who have vision impairments, public funding for vision rehabilitation services is limited unless they have explicitly employment-related objectives. Medicare and other health insurers also do not cover certain services that help older people who are blind or have vision impairments to live and function independently. Older people make up a large majority of the population experiencing severe vision loss, and more than two-thirds of adults who have vision impairments are over age 65. Among beneficiaries of Medicare, approximately 9 percent (or 3.2 million) are people who are blind or have vision impairments; of these, almost 90 percent (2.9 million) are aged 55 and older. Vision rehabilitation services are particularly critical for older people to help mitigate the negative effects of additional medical problems such as diabetes and cognitive, hearing, or balance problems. Since the late 1990s, some vision rehabilitation services have been available to Medicare beneficiaries in some geographic areas when they are provided by certified occupational, physical, and speech therapists. Such services are available in medical facilities under the supervision of a physician but are not available in the home or community.
In 2003, Congress initiated a Low Vision Rehabilitation Demonstration Project to assess the impact of adding certified low vision therapists, certified vision rehabilitation therapists, and orientation and mobility specialists to the list of those who can receive Medicare payments for services. Such services include those provided in the home and community when they are provided under the supervision of an optometrist or ophthalmologist. If the program succeeds, Congress could permanently recognize the benefit of including these vision rehabilitation professionals as approved Medicare service providers. Although advocates and service providers have worked diligently to overcome financial barriers that deter people of all ages who need these services from obtaining them, these and other barriers remain a significant challenge.
d. Disease Prevention and Health Promotion
Although people who are blind or have vision impairments experience overweight and obesity at a higher rate than the general population, health maintenance programs emphasizing weight management and fitness have not been directed toward or tailored to them. Likewise, diabetes education and care management have not reached people who have vision impairments and diabetes. The public health community may treat people who are blind or have vision impairments as though their vision problems are their only—or their most serious—health issues. Traditionally, public health programs have emphasized preventing vision loss, but they have devoted little attention to preventing secondary diseases and promoting healthy lifestyles for people who are blind or have vision impairments. However, experts in vision rehabilitation and public health officials have begun a dialogue that suggests that the fundamental differences in orientation between the two disciplines may be changing.
- Overweight and Obesity
Research has shown that people with disabilities are significantly more likely to be obese than those without disabilities. For people who are blind or have vision impairments, the odds of being obese are 1.5 times greater than for the general population. People who have vision impairments are less physically active, and are generally in poorer physical condition, than people who do not have vision impairments. Further, studies show that older children who have vision impairments are less physically active than are younger children who have vision impairments. Various factors contribute to inactivity and overweight among people who have vision impairments, including difficulties obtaining and preparing fresh foods, lack of transportation, inaccessible exercise equipment, and the inaccessibility of the pedestrian environment. However, little effort has been made to promote health and weight management for people who are blind or have vision impairments. The lack of tailored programs and accessible exercise equipment prevents people who have vision impairments from participating in exercise programs that could lead to weight loss.
- Access to Fitness Equipment
Most health experts agree that exercise is essential to achieve and maintain good health. However, people who are blind or have vision impairments encounter numerous problems using standard exercise equipment. For example, fitness experts frequently recommend using treadmills or stationary bikes to achieve a cardiovascular workout. However, most of these devices do not feature either tactile markings or speech output on the control panel. Display screens and control labels cannot be easily read by people who have vision impairments. Because information about the speed, heart rate, and duration of the workout is displayed in numbers or graphs, few people who are blind or have vision impairments can benefit fully from technology that is readily available to others. Similarly, elliptical trainers typically have tactile buttons for adjusting the angle of the motion or resistance but also feature display screens that present information only visually rather than both visually and audibly. 
Some new computerized systems attach to existing fitness equipment and provide feedback to users, which helps them achieve better form and exercise more safely. However, these systems typically have a touchscreen interface, which is not accessible to someone who is blind or has vision impairment. Again, this creates a barrier to using equipment that is readily available to others.
Recreation facilities are often not accessible. Features that could make the outdoor recreation environment more usable by people who have vision impairments include benches along trails, tactile maps, and raised character or audible signage. Accessible signage would also help people who are blind or have vision impairments to navigate efficiently and safely around an exercise or fitness facility.
e. Public Health and Vision Rehabilitation
In recent years, researchers concerned with promoting health for people who are blind or have vision impairments have begun building alliances among public health, vision rehabilitation, and aging programs. Such alliances have the potential to leverage public resources to improve the health of the broad population of people who have vision impairments.
Traditionally, the primary goal of public health has been disease and disability prevention. The primary goal of the independent living movement has been economic and social independence for people with disabilities. Progress toward social equality and full community participation for people with disabilities, spurred in part by the 1990 Americans with Disabilities Act (ADA) and advances in medicine and technology, make it possible for these communities to begin reconciling their differences and exploring and adopting complementary goals. A progressive health perspective for people who have vision impairments recognizes the dynamic and interrelated aspects of contemporary community life and places the experience of blindness and vision loss at its center rather than on the periphery.
Some leaders in the public health field, as well as some working in vision-related rehabilitation and access, have begun to acknowledge that their aims are essentially the same.... They may emphasize different intermediate outcomes—improved health on the one hand, improved functioning in daily living on the other—but their common long-range goal is the full participation in society of people with disabilities. That goal, it is worth noting, corresponds to the mission of the Americans with Disabilities Act (ADA, 1990), which states that "the Nation's proper goals regarding individuals with disabilities are to ensure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals." Because the ADA expresses the nation's current disability policy rationale, it further justifies and supports the aim of bridging public health and vision rehabilitation.
In light of the high prevalence of obesity, lack of fitness, diabetes, and depression among the large and growing number of people who have vision impairments, it is imperative that the diverse communities of public health and vision rehabilitation professionals join forces to identify solutions that address these and other systemic gaps in health promotion. As the philosophical divisions between these groups blur, they will identify and successfully implement long-term solutions to improve overall health for the community of people who are blind or have vision impairments.
Diabetes is the leading cause of blindness among adults, yet information about diabetes management and care is rarely available in accessible formats. People with vision impairments also do not have ready access to blood glucose and blood pressure testing equipment with audio functions or devices that provide prescription information in an audible format, so they have difficulty managing their diabetes and other care independently. In general, people with vision impairments are not included in preventive care and health promotion, and they experience significant barriers to health care. These barriers include inaccurate provider attitudes about blindness and vision impairment; physical barriers such as inadequate or lack of transportation and physically inaccessible health care facilities and fitness equipment and programs; limited educational and instructional materials in accessible formats; inadequate access to vision rehabilitation services, programs, and related accessible technologies; and inadequate access to prescription drugs and specialty care.
Action must be taken where existing research reveals the clear need for such strategies as enhanced health care provider education, enhanced payment systems, and the removal of structural and other physical barriers to providing and receiving quality health care services.
4. People with Intellectual and Developmental Disabilities
Historically, society has isolated people with intellectual and developmental disabilities in large institutions. These institutions were often characterized by inhumane living conditions and inadequate care. The deinstitutionalization movement of the 1960s and 1970s established the right of people with intellectual and developmental disabilities to live and participate in their communities and created programs that provide support and assistance to ensure that these goals are met. The movement both enabled and encouraged parents and families to provide care at home for their relatives. It also created opportunities for independent living for adults. Community-based services and supports, advancements in medical care, and assistive technology have led to improvements in quality of life for people with intellectual and developmental disabilities.
While people with developmental disabilities have better health and are living longer as a direct result of these fundamental reforms, they continue to experience significant health disparities compared with the general population.
a. Prevalence of Intellectual and Developmental Disabilities
For the purpose of establishing eligibility for community services, the Federal Developmental Disabilities Assistance and Bill of Rights Act of 2000 defines developmental disability as chronic physical or mental impairments or a combination of impairments that appear before age 22 and that create substantial functional limitations in at least three or more of the following areas of major life activity: self-care, language, learning, mobility, self-direction, capacity for independent living, and potential for economic self-sufficiency during adulthood. The term "developmental disability" may include people who have intellectual disabilities (formerly referred to as mental retardation); sensory impairments involving hearing, vision, and speech; orthopedic impairments; and other disabilities such as cerebral palsy, autism, and pervasive developmental disorder. People with developmental disabilities sometimes require individualized services and supports (for example, housing, employment, education, civil and human rights protections, and health care) to live in the community.
Approximately 4.5 million people with developmental disabilities live in the United States. About half of the estimated 2.3 million people with intellectual disabilities are also considered people with developmental disabilities, because they experience the required functional limitations. While people with disabilities such as cerebral palsy and autism do not necessarily have intellectual disabilities, both groups share the experience of disability stigma and discrimination. Both encounter barriers to participating fully in their community, including barriers to obtaining adequate health care. For the purpose of this report, the term "developmental disability" includes cognitive, intellectual, and developmental disabilities.
b. Health Status and Health Experiences
Many of the health needs of people with intellectual and developmental disabilities are similar to those of the general population. These health needs include access to primary health care, wellness and prevention services, dental services, mental health care, care coordination, accessible facilities and services, culturally competent care, personal assistance and caregiving, and nutrition. However, compared with people without disabilities, people with intellectual and developmental disabilities are more likely to have poor health, be susceptible to illness, have limited access to care, and be excluded from health promotion opportunities.
Health programs based on research evidence about the general population have excluded or ignored the needs of people with disabilities, including those with intellectual and developmental disabilities. People with intellectual and developmental disabilities experience a constellation of health and health care disparities, including inadequate health and wellness promotion and inconsistent access to high-quality health care services. As a result, they are in poorer health and have shorter life spans than people who do not have these disabilities. A recent study summed up the "cascade of disparities that result in poor health status of people with intellectual and developmental disabilities."
The effects of differences in prevalence rates of adverse health conditions and behavior disorders are compounded by disparities in attention to care needs, which are further impacted by disparities in preventive care and health promotion practices, and all are finally impacted by disparities in equitable access to health care.
Studies report that adults with developmental disabilities are at risk for multiple health and behavioral problems, including hearing and vision difficulties, cardiovascular disease, obesity, seizures, mental health and behavior problems, poor oral health, and poor general fitness.
Some studies suggest that people with intellectual and developmental disabilities are at higher risk for behavioral and emotional difficulties than the general population, and that more people experience psychiatric disabilities than are actually diagnosed. There are several possible explanations for this gap. One is that this group lacks mental health services. Another is that disorders go unrecognized because clinicians wrongly attribute mental health symptoms to the individual's disability rather than to a separate condition. Another study reviewed records of people with intellectual and developmental disabilities, and discovered that one-third to one-half of them had been prescribed medications for mental health conditions despite not having any psychiatric diagnosis.
Two common secondary conditions found among people with intellectual and developmental disabilities are lack of physical fitness and obesity. While rates of obesity are high in the general population, the overall prevalence of obesity for adults with intellectual and developmental disabilities is significantly higher (35 percent) compared with adults who do not have these disabilities (21 percent).
- Poor Dental Health
While most people who live in community-based residential settings or with friends or family had access to dentists, they had poor dental health because of lack of preventive care and inadequate dental hygiene. Access to care can also pose significant problems. Case managers have indicated that dental services are more difficult to find than any other type of service for individuals with intellectual and developmental disabilities who live in the community. Families and support personnel also indicate that quality of care is lower than it should be, because dentists lack the skills required to work or communicate with people with intellectual and developmental disabilities.
c. Barriers to Health Care
Studies have shown that people with intellectual and developmental disabilities—as well as the families, caregivers, and advocates who help them to get care—face extraordinary barriers to preserving health and getting health care when they need it:
They feel excluded from public campaigns to promote wellness. They describe shortages of health care professionals who are willing to accept them as patients and who know how to meet their specialized needs. They struggle with unwieldy payment structures that were designed decades ago when people with [intellectual and developmental disabilities] often died in childhood or lived out their lives in residential institutions.
- Lack of Needed Health Care Services
Approximately 480,000 people with intellectual and developmental disabilities receive Medicare, while Medicaid covers 1.5 million adults living in the community and 246,000 people with intellectual and developmental disabilities living in institutions. About 70 percent of Medicare beneficiaries with intellectual and developmental disabilities are also enrolled in Medicaid, the largest source of funding for health care for people with disabilities, providing both acute and some long-term care benefits. About 7 percent have insurance through their employers. Although some children with intellectual and developmental disabilities are insured through their parents' health plan, private insurance often has gaps in coverage, high premiums and copayments, and no mandate to provide needed benefits.
Because Medicaid includes both mandatory and optional services, certain critical services may not be available to people with intellectual and developmental disabilities. These services include dental care and certain prescription drug coverage. To reduce health costs, many states have developed managed care programs and either require or encourage the enrollment of people with disabilities who participate in the program. These programs have potential benefits, but they can also present certain drawbacks for people with intellectual and developmental disabilities. In some cases Medicaid managed care programs are poorly equipped to meet the needs of people with disabilities, including people with intellectual and developmental disabilities. Problem areas include inadequate care coordination, limited access to specialists, limited consumer choice, and inadequate risk adjustment for capitation rates. One study revealed that in a managed care system, one-third of children with autism had difficulty gaining access to specialists, and one-fifth of children with intellectual disabilities experienced difficulty getting referrals to specialty services.
Even with its limitations, Medicaid can be a better option than commercial plans. One study compared the experiences of parents with Medicaid and parents with private insurance. Parents with Medicaid had difficulties accessing specialty care three-fifths as often as parents with private health insurance. Similarly, when Medicaid provided secondary coverage, fewer problems were reported with access to care at the plan and provider level. However, annual budget cuts to publicly financed health care and regular reduction of services under these plans continue to threaten access to comprehensive, coordinated care for people with intellectual and developmental disabilities.
- Lack of Adequate Health Care Provider Awareness and Communication
Medical providers lack training and experience in treating individuals with intellectual and developmental disabilities. Some providers are uncomfortable providing care or are unwilling to serve patients with these disabilities. For their part, people with intellectual and developmental disabilities have indicated that some health care providers may not understand the extent to which people with these disabilities can contribute to their communities as well as to their own health. One self-advocate expressed her frustration with the negative attitudes of some health care providers this way:
I am who I am, and I can be the best of who I am. All I'm trying to do is make a living, and the only way I can do that is to have good health care. Whenever I go into the doctor's office... they talk to the people that bring me. But it's my life and it's my illness.... Can you respect me enough to talk to me?
Communication between health care providers and patients with developmental disabilities can prove difficult, as can communication between providers and caregivers. This communication difficulty can hinder continuity of care and make providing care more difficult. Lack of financial incentives and burdensome administrative paperwork add to the problem. Often, providers are concerned about how long it might take to treat a person with an intellectual or developmental disability. Focus group research revealed the difficulty that one mother experienced obtaining dental care for her son.
[We] can't really get full care. It's hard to find people with the patience to work with him, because he has to be given general anesthesia. When he was a child, he had to get caps put on his teeth, and this was a two-hour process.... Dentists don't want to deal with the hassle.
People with intellectual and developmental disabilities can find it difficult to communicate their health care needs to medical providers, and can also have difficulty following recommended treatments. Patient education materials are often written in ways that people with intellectual disabilities cannot understand, making follow-through less likely. Incorrect assumptions and stereotypes about people with intellectual and developmental disabilities, coupled with limited scientific knowledge about appropriate standards of care, further contribute to health disparities. Negative experiences with health care providers also deter people with intellectual and developmental disabilities, and their families and caregivers from seeking care. Focus group research showed that providers' misconceptions sometimes created dangerous situations for patients.
One nurse reported that some emergency room doctors believe that patients with mental retardation do not feel pain and therefore do not need anesthesia.
Participants sometimes got the message from providers that individuals with disabilities were not worthy of receiving a high standard of care, particularly as the patients grew older. A woman with a sister in her 50s with developmental disabilities noted that her sister's doctor suggested reducing the frequency of visits from every few months to once a year. When challenged, the doctor replied, "She's lived a good life—once a year is fine."
Further, language and cultural barriers can complicate communications between health care providers and people with intellectual and developmental disabilities and their families. Intellectual and developmental disabilities occur disproportionately in low-income communities, where disparities in health and health care stem from economic, social, and environmental causes.
- Inadequate Health Care Transition from Childhood to Adult Care
Serious problems arise most often as individuals make the transition from child health programs to services for adults. Nearly half a million young people with special health care needs make the transition into adulthood and adult health care services annually. Many children with intellectual and developmental disabilities receive medical care that is managed through an interdependent and complicated system that can include medical, educational, vocational, and social services. The transition from this multilayered system to adult health care can be fraught with difficulties. At a minimum, people with intellectual and developmental disabilities require a primary care physician who can focus on providing adult care. Health systems may fail to support the transition process, and young adults and their families can find themselves without appropriate care. Problems include primary care physicians who are not trained to provide needed care and insurance schemes that do not adequately compensate health care providers for the time required to provide care and care coordination. Further, insurance plans can limit access to the few specialty providers who are familiar with the care needs of young adults with intellectual and developmental disabilities. Because these problems are widespread, the boards of the American Academy of Pediatrics, the American Academy of Family Physicians, the American College of Physicians, and American Society of Internal Medicine have adopted a policy statement that represents
... a consensus on the critical first steps that the medical profession needs to take to realize the vision of a family-centered, continuous, comprehensive, coordinated, compassionate, culturally competent health care system that is as developmentally appropriate as it is technically sophisticated.
Finally, environmental factors such as poverty, inadequate and inaccessible housing, unemployment, and poor transportation contribute to the poor health status of people with intellectual and developmental disabilities and limit access to necessary medical care and mental health services for them and their families.
- Barriers to Dental Care
A number of studies have identified major barriers associated with poorer dental care for people with intellectual and developmental disabilities. Many lack insurance coverage for dental care and lack alternative funding for dental services. Case managers in smaller urban and rural areas report more difficulty finding dental services than those in large urban areas or rural communities. Architectural barriers in dental offices, including small examination rooms, also present obstacles to care. Some research reveals that characteristics such as severity of disability, challenging behaviors, and even wheelchair use may deter dentists from providing effective dental care. Families and caregivers also report that some dentists were "ineffective in dealing with extraordinary needs such as sedation, were not flexible in making unexpected accommodations, and had poor knowledge about people with ID."
d. Disease Prevention and Health Promotion
Adults with intellectual and developmental disabilities are more likely to lead sedentary lives, and more often report being in fair or poor health than adults without disabilities, according to a study conducted in North Carolina. However, research on issues related to health promotion for people with intellectual and developmental disabilities relies primarily on case studies. Little research has been conducted about secondary conditions they may experience. In one national study, family practice and internal medicine physicians indicated that they conducted fewer health promotion activities for patients with physical disabilities than for patients who did not have disabilities. Thus, it is particularly difficult for people with intellectual and developmental disabilities who also have physical disabilities to gain access to health promotion services. Women with intellectual and developmental disabilities receive fewer breast and cervical cancer screening examinations than women in the general population and are, therefore, at higher risk for these diseases. Similarly, men living on their own or with family members rarely have prostate exams.
Disease prevention and health promotion for people with intellectual disabilities appear not only to vary depending on their living situation but also to be inconsistent within the same type of living arrangement. For example, one study showed that people either living alone or with family or friends lacked preventive health care screening and services such as flu shots, TB tests, and Pap tests. Also, people living with friends or family appear to be at increased risk for obesity compared with people who live in residential settings. Another study revealed that, while most people with intellectual and developmental disabilities living in community-based settings had primary care physicians, only half had received tetanus inoculations, less than half had received protection against hepatitis B, and fewer than three-quarters had received the flu vaccinations during the previous year.
Family satisfaction with the quality of care provided by primary care physicians reflects broad, system-level problems. For example, in a study of 121 families in Massachusetts, parents who had children with intellectual and developmental disabilities gave low ratings to their children's primary care physicians on their ability to put the parents in touch with other parents, their understanding of the impact of the child's condition on the family, their ability to answer questions about the child's condition, and their ability to provide information and guidance on prevention.
Current data on the lives of people with intellectual and developmental disabilities confirm that an initial diagnosis of an intellectual or developmental disability results in greater susceptibility to physical and mental health issues, poorer health status, limited inclusion in preventive care and health promotion, and unequal access to health care. These unequal health outcomes are not all attributable to the functional limitations or impairments that arise from disability. Children and adults with intellectual and developmental disabilities encounter various economic, social, and environmental health disparities. They also are affected by limitations on commercial and public insurance and a highly fragmented health care system that lacks any systematic way to coordinate care across medical disciplines, type of health coverage, and age progression. As with any other identifiable minority group whose basic health care needs are not being met, people with intellectual and developmental disabilities are also affected by physical, financial, cultural, socioeconomic, and other environmental barriers. Immediate action must be taken where existing research reveals the clear need for such strategies as enhanced health care provider education, increased clinical and health disparities research, enhanced payment systems, and the removal of structural and other physical barriers that impede access to quality health care services.
D. Conclusion and Recommendations
The available research that describes the health status and health care experience of people with disabilities—especially women with disabilities, people who are deaf or hard of hearing, people who are blind or have vision impairments, and people with intellectual and developmental disabilities—presents a stark picture of health and health care disparities, preventable secondary disease, and diminished quality of life for many. While additional research is required to inform effective long-term public policy responses, immediate action should be taken in response to what is already known. Specifically, the structural and environmental problems and barriers to health and health care services and programs that people with disabilities experience every day demand targeted actions and reforms that will have an immediate impact, as well as long-term, comprehensive reform.
Congress should direct the Centers for Medicare & Medicaid Services (CMS) to establish a mechanism to pay for American Sign Language (ASL) interpreters when they are required for deaf or hard-of-hearing beneficiaries of Medicare, Medicaid, the State Children's Health Insurance Program (SCHIP), and other federally funded health care to ensure that people who are deaf or hard of hearing who use sign language receive effective services from health care providers, including mental health providers, clinics, hospitals, diagnostic centers, and laboratories, and in other health care settings.
Congress should direct the Centers for Medicare & Medicaid Services (CMS) to identify and implement mechanisms to pay for vision rehabilitation services and assistive devices for people who are blind or have vision impairments who are beneficiaries of the Medicaid and Medicare programs or other federally subsidized health care.
The Centers for Medicare & Medicaid Services (CMS) should identify and implement mechanisms to pay for vision rehabilitation services and assistive devices for people who are blind or have vision impairments who are beneficiaries of the Medicaid and Medicare programs.
The Centers for Medicare & Medicaid Services (CMS) should identify and implement mechanisms to pay for vision rehabilitation services and assistive devices for people who are blind or have vision impairments who are beneficiaries of the Medicaid and Medicare programs.
The Centers for Medicare & Medicaid Services (CMS) should update their current definitions of durable medical equipment and medical necessity, which are outdated and give little consideration to increasing an individual's functional status. The current patchwork of both Federal and state health care and private insurance coverage contains barriers and gaps that leave many people with disabilities unable to obtain needed assistive technology. As a starting point, more consistent and coherent Federal eligibility and reimbursement policies are needed. New definitions of medical necessity are needed to ensure that effective assistive technology will be deemed eligible for coverage and reimbursement.
Agencies of the Federal Government, including the institutes and centers of the National Institutes of Health (NIH) that are involved in providing Federal grants and Federal loans, including loan forgiveness programs for medical education, should require that medical training institutions whose students receive support include in their training curriculums material that ensures that graduates will possess disability knowledge, cultural competency, and a basic capacity to work effectively with people with disabilities.
The U.S. Department of Health and Human Services (HHS) should direct key Federal agencies charged with health promotion and disease prevention to collaborate and implement methods that ensure that people with disabilities are fully included in health promotion and disease prevention research, program development, public education, and development of best practices.
States should enact legislation that requires health insurers either to pay for sign language interpreters through employer-based group health insurance plans or to pay directly into a state fund or another mechanism established specifically to cover ASL interpreter expenses for people who are deaf who receive health care services through a private insurance plan.
Congress should ensure that reform of the health care system in the United States responds to the basic needs of people with disabilities by making certain that health care coverage is available and affordable to all people with disabilities without preexisting condition limitations. Benefits made available through either private or public coverage, or a combination, must include access to appropriate prescription medications, specialty care, care coordination, durable medical equipment and assistive devices, and long-term care services. Any coinsurance payments must be affordable, and annual or lifetime limits on these key benefits must not be permitted. Health care reform efforts must take into account the fact that achieving health care equity for people with disabilities includes the additional dimensions of physical and programmatic accessibility and health provider disability cultural competency. Some key elements of these additional dimensions include the need for more time for medical visits for some people with disabilities; methods that ensure effective communication, including provision of sign language interpreters and educational and instructional materials in accessible formats; and accessible diagnostic and other common medical office equipment, such as height-adjustable exam tables and wheelchair-accessible weight scales. To the extent possible, methods must be established to ensure that these essential elements are readily available when health care is delivered. These methods might include reimbursement for sign language interpreters by public and private insurers, new tax credits or other tax benefits that help offset costs, equipment sharing, and other schemes that create incentives for health care providers to acquire necessary equipment and services that are needed by patients with disabilities.
CHAPTER 2. Health Care and Federal Access Requirements
Federal disability rights laws have explicitly mandated the removal of physical and programmatic access barriers in health care for many years; yet as this report clearly documents, myriad access problems remain. This chapter describes how these laws relate to health care services and facilities, and examines some of the civil actions and settlements brought under them that illustrate both the usefulness and the shortcomings of individual and class action lawsuits in the area of health care.
Two key Federal civil rights laws address discrimination against people with disabilities in the provision of health care services. Section 504 of the Rehabilitation Act of 1973 (Section 504) prohibits programs that receive Federal financial assistance, as well as federally conducted programs and activities, from discriminating against individuals with disabilities. Titles II and III of the Americans with Disabilities Act of 1990 (ADA) also prohibit disability discrimination and require health care providers to be physically and programmatically accessible to people with disabilities.
A. The Americans with Disabilities Act and Section 504
Title II of the ADA applies to state and local government entities, while Title III applies to "public accommodations." Title III states that "private entities are considered public accommodations for purposes of this title, if the operations of such entities affect commerce" in 12 listed categories, one of which is a "professional office of a health care provider, hospital, or other service establishment."
Title II and Title III place somewhat different accessibility obligations on the entities that fall within their respective provisions, particularly in the area of removing architectural barriers in existing facilities. While no single entity can, by definition, fall within both Title II and III, as it will either be a Government entity or privately owned, private entities can be contractually bound to follow nondiscrimination laws that are applicable to state and local government entities. Similarly, a private entity can be obligated to follow Section 504's nondiscrimination obligations as a recipient of Federal funds. For example, a private nonprofit hospital that serves Medicaid patients is both in a contractual relationship with the state Medicaid agency as a Medicaid provider and a recipient of Federal Medicaid funds. That hospital's contract with the state doubtless includes language that requires it to comply with any state nondiscrimination laws and the state's own ADA Title II and Section 504 nondiscrimination obligations. Such a hospital is also a recipient of Federal funds and is therefore independently subject to Section 504. Another example is a private clinic that receives Federal monies under a Maternal and Child Health Services Block Grant to provide services such as newborn screening and immunizations. As a recipient of Federal funds, the clinic would be subject to Section 504 in addition to its own Title III obligations as a private health care service establishment.
Title III prohibits "any person who owns, leases (or leases to), or operates a place of public accommodation" from discriminating against individuals "on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation." The law and its regulations are directly applicable to all the natural or corporate "persons" that own, lease to or lease, or operate the offices of individual health care providers. Larger nonprofit or for-profit private hospitals and health maintenance organizations (HMOs) are also subject to Title III. It is "discriminatory to subject an individual or class of individuals on the basis of a disability or disabilities of such individual or class, directly, or through contractual, licensing, or other arrangements, to a denial of the opportunity of the individual or class to participate in or benefit from the goods, services, facilities, privileges, advantages, or accommodations of an entity." It is equally discriminatory to provide an opportunity to participate in or benefit "that is not equal to that afforded to other individuals" or one "that is different or separate from that provided to other individuals" unless such action is necessary for equal effectiveness."
Under Title III, discrimination includes the failure to make reasonable modifications, provide auxiliary aids and services, or remove architectural barriers, because such failures effectively prevent people with disabilities from enjoying the goods and services offered by a public accommodation. In the health care context, this means that a health care entity must modify its policies, practices, and procedures when necessary to enable people with disabilities to gain full and equal access to its services, unless a requested modification constitutes a fundamental alteration of the health care service itself. For example, an office would have to modify a policy of providing no assistance to patients who needed help with undressing or transfers if someone with a mobility impairment required such assistance to receive a proper examination. Health care entities must also provide auxiliary aids and services such as sign language interpreters, assistive listening devices, and written medical information in such alternative formats as Braille and large-font print unless the provider can establish that doing so would fundamentally alter the nature of the health care service or constitute an undue burden. Finally, health care entities are required to remove architectural barriers such as steps, narrow doorways, and inaccessible toilets in existing facilities if doing so is "readily achievable." Health care facilities that operate in new construction or that undertake alterations to existing facilities must ensure that the new construction or alteration meets the higher standard of being readily accessible.
Section 504 prohibits discrimination against otherwise qualified people with disabilities under any program or activity that receives Federal financial assistance; it directly applies to state Medicaid agencies and the many corporate health care entities and providers that receive Federal monies through Medicaid, Medicare, or Federal block grants. State Medicaid agencies also fall under Title II of the ADA, which states that "no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity." Section 504 regulations prohibit Federal financial recipients from providing directly—or through contractual, licensing, or other arrangements—"any aid, benefit, or service that denies people with disabilities the opportunity to participate in or benefit from Medicaid, affords people with disabilities an opportunity to participate in or benefit from health care services that are not equal to that afforded others, or provides people with disabilities an aid, benefit or service that is not as effective as that provided to others." Regulations enacted under Title II require state agencies to "make reasonable modification in policies, practices, or procedures, unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the program service or activity." State agencies and other Federal financial recipients such as city or county governments or HMOs are bound to these fundamental Section 504 and Title II obligations, regardless of whether they enter subcontracts with additional third-party organizations or individual providers.
If these legal requirements were effectively implemented at the various levels of our health care system—from individual providers to HMOs to state Medicaid agencies—it would significantly decrease the health and health care disparities experienced by people with various disabilities, even if financial, coverage, and other barriers remained. Federal laws have explicitly mandated the removal of physical and programmatic access barriers in health care for many years; yet as this report clearly documents, myriad access problems remain. A closer look at some of the civil actions and settlements brought under these laws can illustrate both the usefulness and the shortcomings of individual and class action lawsuits in the area of health care. Title III applies to privately owned health care entities regardless of size, and lawsuits under the ADA have been brought against solo practitioners as well as large hospital complexes and multistate corporate HMOs that employ hundreds of providers and operate hospitals, clinics, and laboratories.
Legal actions brought by individual plaintiffs against providers under Title III have achieved mixed results. ADA plaintiffs generally seek change in a defendant's behavior, and are asking a court to either prevent the provider from engaging in discrimination or provide reasonable structural or programmatic modifications in the future. One initial hurdle for Title III plaintiffs has been the procedural requirement that a plaintiff must have standing to initiate a lawsuit and request injunctive relief. Among other factors, a plaintiff must have suffered "an injury in fact" (one that is actual or imminent and not merely a matter of conjecture) and must establish a very significant possibility of future harm to achieve injunctive relief. When a couple, one of whom was a wheelchair user, initiated a lawsuit against a local hospital to have its birthing center made wheelchair-accessible in anticipation of future pregnancies, the court ruled that the couple was only asserting a speculative future harm that they could not prove. If a medical injury has already occurred, an individual plaintiff's lawsuit can be successful and could garner the level of publicity needed to generate greater awareness of ADA requirements among medical professionals. Focusing on lawsuits brought by individual plaintiffs also highlights the simple reality that it is very difficult for most patients to initiate a legal action against their treating physician, a difficulty that is exacerbated when the patient is likely to encounter access barriers that makes finding an alternative provider difficult. As the deaf plaintiff in a recent New Jersey case testified, she continued to see a provider despite his refusal to supply an interpreter, because she had been specifically referred by her primary care physician, was unsure of the nature of her illness, was fearful about worsening symptoms, and was unable to simply pick up the phone and easily find another doctor.
The U.S. Department of Justice (DOJ) is not subject to the same restrictive standing requirements as private individuals and has achieved more consistently positive results through administrative and legal actions brought under Title III against health care providers and hospitals. However, DOJ has limited human and financial resources and a mandate that requires a determination of "a pattern or practice" of discrimination or "an issue of general public importance" before commencing a civil action. The department has tended to focus on large, high-profile health care providers and issues when commencing action under Title III and has emphasized settlements and consent decrees over litigation.
Nonetheless, some very significant results have been obtained through a few important lawsuits initiated against larger hospital complexes and HMOs, many with DOJ involvement. In 2000, three wheelchair users represented by Disability Rights Advocates (DRA) sued Kaiser Permanente, the largest nonprofit HMO in the country. The suit was brought in California Superior Court under state access laws, alleging that Kaiser failed to provide equal and adequate care for patients with physical disabilities because of inaccessible examination equipment and pervasive barriers. A landmark settlement was reached in March 2001 in which Kaiser agreed to review and maintain its physical accessibility under state and Federal access laws; identify, procure, and install accessible medical equipment; and develop access policies and procedures over the settlement's 7-year term. Given Kaiser's size, one of the most far-reaching consequences of the lawsuit was that it prompted medical equipment manufacturers to develop such equipment as height-adjustable exam tables that have subsequently become more widely known, available, and affordable to other providers. The Kaiser settlement helped pave the way for a Federal action brought in November 2003 against the Washington Hospital Center, the largest private hospital in the District of Columbia, by DOJ and the Disability Rights Project of the Washington Lawyers' Committee on behalf of four former patients of the hospital and one organizational plaintiff. This action also focused on architectural and equipment barriers for patients with mobility and other disabilities. In the settlement achieved 2 years later, Washington Hospital agreed that all exam tables and chairs purchased after the date of the agreement would be accessible and committed to providing staff training to ensure implementation and use of its new equipment and programmatic access policies.
Some new accessibility issues raised by technological developments are also being addressed with respect to larger Title III entities. For example, the adequacy of video interpreting services (VIS—the provision of an remote interpreter through video conference technology over high-speed Internet lines), which are becoming more commonly used in medical settings, was part of the 2006 Consent Decree negotiated by DOJ, the Disability Rights Project of the Washington Lawyers' Committee, and the private firm of Sutherland Asbill & Brennan LLP on behalf of seven deaf individuals. Laurel Regional Hospital had refused the individuals' specific and repeated requests for in-person qualified sign language interpreters but had made available in some instances VIS. However, VIS alone is inadequate without performance standards or when used with patients with medical conditions or injuries that compromise their ability to see the video screen or be seen by the video camera. The decree is the first ADA case resolution to include appropriate criteria for VIS use and monitoring, as well as requiring a communication assessment of each patient, appropriate auxiliary aids and services, DOJ-approved VIS equipment, notice to patients of their rights under the decree, and staff training.
Actions against and settlements with hospitals and HMOs can play an important role in reducing access barriers for the population of people with disabilities who live in the geographic area serviced by a specific Title III entity. Even with these larger entities, however, it is hard to gauge the wider influence of these individual lawsuits in the context of all the hospitals operating in the country. Similarly, HMOs—especially those that are harder to characterize as direct providers of health care services and those outside of California—do not appear particularly motivated to grapple with their physical and programmatic responsibilities under Title III, or even to be aware of those responsibilities. People with disabilities and disability rights attorneys and advocates cannot be expected to change the health care system hospital by hospital, and the problem is exacerbated a thousand-fold when considering the degree to which provider practices and clinics outnumber hospitals.
Ensuring that individual providers and clinics become and remain accessible is especially important because of the role outpatient health care services and nonhospital settings play in our health system. A 2006 summary of the National Ambulatory Medical Care Survey found that "[a]mbulatory medical care in physician offices is the largest and most widely used segment of the American health care system." An estimated 902 million visits were made to office-based physicians in 2006; over 50 percent of these visits were made by patients with one or more chronic condition such as hypertension, arthritis, or depression. "Physician offices comprised about four-fifths of all ambulatory medical care delivered in 2006, and physician consultation services included everything from primary care to highly specialized surgical and medical care." These figures reflect visits to private practices, urgent care centers, public health clinics, family clinics, mental health centers, community health centers, and family practice plans but not hospital emergency or outpatient departments, VA medical offices, or industrial, occupational, or institutional clinics. Overall, 83.4 percent of the visits surveyed were to practices "that were either owned by a physician or a group of physicians." Over half of the office visits "were made to physicians who were part of a group practice, defined as having three or more physicians," while "[s]olo practitioners accounted for 31.8 percent of the remaining identified office visits." It is critical that offices involved in delivering ambulatory care be physically and programmatically accessible, given the wide-ranging types and amounts of services delivered in those offices and clinics. If they remain physically or programmatically inaccessible, or are allowed to set arbitrary policies that require patients to be "ambulatory" in the narrow sense of being able to walk, people with disabilities will inevitably experience inferior health care choice and quality.
While Title III lawsuits and settlements are important and must continue to be brought, they cannot take the place of a commitment to systemic implementation of access principles that exist under Federal law. Public entities should develop health-care-specific standards of physical, programmatic, and clinical accessibility for providers, hospitals, and HMOs. These standards must be robustly monitored and enforced from top funding entities on down, through such intermediate organizations as HMOs and accreditation organizations, so that individual providers with the fewest resources—and consequently the greatest defenses to a Title III action—are not left to achieve accessibility on their own. Where the public entity is a state Medicaid agency, it is subject to Section 504 and Title II of the ADA and should take on a greater burden of ensuring health care accessibility at the provider level than simply passing on a contractual obligation. HMOs are also subject to Section 504 when they receive Medicaid and Medicare funding. While no case has actually argued that such an approach is mandated under 504 or the ADA, there are cases that provide some foundation to this legal theory of "kicking up" access responsibility from providers to HMOs to state Medicaid agencies.
A Federal court in Pennsylvania has acknowledged that a state Medicaid agency can bear responsibility for ensuring that HMO managed care providers meet the accessibility requirements of Federal law. In Anderson v. Department of Public Welfare, the Pennsylvania Medicaid agency mandated Medicaid recipients in five counties to receive health care services through HealthChoice, an HMO network. The plaintiff class had initiated the action because they encountered physically inaccessible HealthChoice provider offices. The state agency had not considered or looked for accessibility when it initiated the HMO bidding process or when it conducted "readiness reviews" of the HMOs that were awarded the contracts. The court found the Health Choice program inaccessible because it "does not comply with the minimum program accessibility regulations promulgated under Title II and Section 504" for new and existing construction. As a result, the court partially granted the plaintiffs' Motion for Summary Judgment and issued an order that required the state to ensure that every participating HealthChoice provider met the accessibility requirements of Title II of the ADA.
In Zamora-Quezada v. HealthTexas, a group of HMOs and one of the provider medical groups in the HMO provider network were sued by two physicians employed by the medical group and a number of HMO enrollees with disabilities. The HMOs and its provider groups had entered contractual arrangements that divided the risk of service provision so that the network providers assumed greater risk for patients who had a higher cost per month. The plaintiffs charged that this financial and contractual arrangement gave network providers an incentive to delay or deny professional treatment services to higher cost enrollees with disabilities and resulted in discrimination under Section 504  and Title III. The two physicians also alleged that they had been retaliated against and dismissed by the defendant provider medical group when they advocated for their patients with disabilities. The court denied defendants' motion to dismiss and found that plaintiffs had stated a viable claim under Section 504 and the ADA. In doing so, the court at least implicitly acknowledge that an HMO's contractual relationships with its provider network can both influence how those providers deliver health care and result in discrimination when people with disabilities are forced to seek the health care they need elsewhere.
These cases help set the stage for the argument that state Medicaid agencies and HMOs that receive Medicaid and Medicare payments have their own independent obligation under Section 504 to ensure that Medicaid and Medicare enrollees with disabilities are not excluded from participation in, denied the benefits of, or discriminated against in the receipt of health care services solely by reason of their disability. When HMOs enter a contract with state Medicaid agencies, they receive Federal funds to recruit and enter contracts with health care providers, design health care products for enrollee members, and act as an ongoing intermediary between providers and members. This is generally the case even if the HMO does not also directly operate hospitals and clinics and employ providers. HMOs purport to offer certain levels of health care services and provider choice to their members. If any enrollee cannot actually receive those services or choices because an HMO's provider network is riddled with architectural or programmatic barriers, then the HMO is in violation of Section 504. As recipients of Federal funding, state Medicaid agencies and HMOs have a responsibility under Section 504 to notify enrollees with disabilities of their Federal accessibility rights, as well as the right to auxiliary aids where necessary for effective notice or to provide equal benefit from the service in question. Neither state Medicaid agencies nor HMOs that receive Federal financial assistance should be allowed to disregard their own, generally greater, financial and administrative capacity to set policies and procedures that will inform, provide incentives, monitor, and enforce accessibility requirements among the providers that deliver health care services.
B. Conclusion and Recommendations
Lawsuits are limited in their impact and can cost plaintiffs time, effort, and peace of mind to a degree that can affect their own health. In addition, they need attorneys conversant with disability nondiscrimination law, but far more negligence legal expertise is commonly available than disability nondiscrimination expertise. Also, most medical providers are far more aware of their obligations and the potential for liability under negligence and tort law than under Section 504 or the ADA.
Ultimately ADA and Section 504 lawsuits and settlements are an important component of the systemic health care reform to achieve accessibility, and disability rights advocates and attorneys must continue to bring high-impact litigation that will bring about change in the greatest numbers of providers at the ground level. These efforts must be supported through additional legislative, policy, and institutional reform. This is particularly true in such forward-looking areas of policy as investigations into health disparities, evidence-based health care quality standard setting, and the linkages between health and various environmental factors, such as socioeconomic status and the built environment. Discoveries made through innovative cross-disciplinary research and public health and policy discussion are leading the way, rather than lawsuits. This is why disability as a demographic factor, and people with disabilities as an affected population, must be included in the discussion.
Congress should direct the Department of Health and Human Services (HHS) to identify performance standards that must be included as a condition of receiving Federal financial assistance to ensure that states, health plans, managed care organizations, and health care providers who receive Federal health care funds under Medicaid, the State Children's Health Insurance Program (SCHIP), and other Federal programs that pay for health care for people with disabilities meet the minimum requirements of the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act, and that they possess sufficient cultural competency to provide effective health care to people with disabilities.
The Department of Health and Human Services (HHS), the U.S. Department of Justice (DOJ), the Centers for Medicare & Medicaid Services (CMS), and the U.S. Access Board should enter into an interagency agreement to identify and adopt performance standards to ensure that states, health plans, managed care organizations, and health care providers who receive Federal health care funds under Medicaid, the State Children's Health Insurance Program (SCHIP), and other federally funded health care programs meet the minimum requirements of the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act, and that they possess sufficient cultural competency to provide effective health care for people with disabilities. Such methods could include a Federal contractual requirement that states, health plans, and providers collect and submit data concerning architectural and programmatic accessibility, capacity to accommodate patients with disabilities, and a showing of cultural competency and disability awareness. Such a contractual obligation should also include regular monitoring mechanisms.
States should develop mechanisms whereby health insurers, managed care organizations, and other health plans provide assurances that the health care providers (for example, hospitals, clinics, diagnostic centers, provider offices, and laboratories) with whom they contract for Medicaid and other federally funded health care services provide physical and programmatic access for people with disabilities. Such mechanisms could include annual physical and programmatic access surveys of providers and adherence to other performance standards that would be required in order to renew health service delivery contracts. Failure to provide the required information to appropriate state agencies should result in contract termination.
The Department of Justice (DOJ) must step up monitoring and enforcement of the Americans with Disabilities Act (ADA) and Section 504 of the 1973 Rehabilitation Act for health care facilities and programs. DOJ must focus additional resources on compliance monitoring and investigation of Title III complaints concerning programmatic access violations of the ADA and Section 504 by health care providers.
CHAPTER 3. Legal and Administrative Framework for Health Care and Health Disparities Programs and Research
This chapter summarizes key Federal laws that govern, or are relevant to, the health care provided to people with disabilities in the United States. Some of the legislation outlined below is included because it enacts programs such as Medicaid and Medicare that serve significant numbers of people with disabilities or people with such specific disabilities as developmental disabilities. Other laws are included because they relate to the Federal Government's relatively recent and ongoing research on, and response to, the existence of health and health care disparities among specified population groups. Health disparities legislation currently includes people with disabilities as a health disparity population to only a limited extent. This chapter suggests reasons for fully including people with disabilities in the nation's ongoing effort to combat health and health care disparities. The chapter concludes with recommendations for reform.
Medicaid is a Federal initiative that was created through the Social Security Amendments Act of 1965  to provide acute and long-term health coverage to low-income Americans of any age. Medicaid's authorizing and controlling legislation comprises Title XIX of the Social Security Act and is overseen federally by the Centers for Medicare & Medicaid Services (CMS), an agency in the U.S. Department of Health and Human Services (HHS). The program began as a collaborative venture between the Federal and state governments (including the District of Columbia and U.S. territories) to jointly fund health care for individuals and families with low incomes and resources. In 1972, Congress linked Medicaid to the creation of the Federal Supplemental Security Income (SSI) program. Thereafter, SSI coverage (at approximately 74 percent of the Federal poverty level, or FPL) became the minimum national income floor for Medicaid eligibility. Before this, many states had set lower income levels for Medicaid eligibility.
The Medicaid program offers states the flexibility to expand their Medicaid coverage beyond the Federal minimum eligibility levels, and all states have extended Medicaid coverage through "medically needy" or "special low income" options to the elderly and people with disabilities beyond minimum program levels. Medicaid has now grown to encompass over 58 million Americans, including 8 million persons with disabilities who generally lack any other source of health insurance or care, and 6 million low-income frail, elderly, and disabled Medicare beneficiaries who depend on Medicaid to fill in the gaps left by Medicare coverage. The program has become the "largest single source of health insurance and long-term care and the largest source of public financial support for people with disabilities."
To receive matching Federal funds, states must provide certain mandatory services under Medicaid, such as physician and hospital services, laboratory and diagnostic testing, and nursing facility services. Other services, such as prescription drugs, personal care, and home and community-based long-term care, are optional, and individual states vary considerably in the degree to which they will cover such services and how eligibility is established. The category of "medical supplies, equipment and appliances suitable for use in the home" is a mandatory home health service benefit, but a state can establish reasonable standards under the Medicaid statute and set limits on coverage based on such factors as "medical necessity" or "utilization control." The distinction between mandatory and optional services can be particularly important for people with disabilities, because many optional services can be critical to maintaining health and the ability to function in the community. Significant variance in what states cover, their scope of coverage, and their eligibility standards for coverage create gaps and complications in service for people with disabilities across the country.
Medicaid's importance to a critical core population of low-income individuals with the most complicated chronic health needs cannot be overstated. Seniors and people with disabilities comprise 24 percent of all Medicaid enrollees, but account for 70 percent of program spending. Eleven percent of all enrollees with disabilities incur annual costs over $25,000 and account for 61 percent of all expenditures on people with disabilities. The 1.2 million Medicaid enrollees who use long-term services and supports account for 58 percent of all Medicaid spending on people with disabilities. One-quarter of this group used institutional care and averaged total per person spending of $76,331, while three-quarters of the group averaged total per person spending of $35,930 for community-based services. These figures can be compared with total per person spending of $6,277 on enrollees who received little or no long-term care services. For the 7 million low-income Medicare recipients with chronic health needs who are "dual eligible" for Medicaid coverage, the latter program "is the only source of financial assistance with long-term care within the community and in institutional settings."
The majority of Medicaid enrollees with disabilities live in the community and require access to Medicaid providers, clinics, and hospitals through either fee-for-service arrangements or managed care. For these enrollees, structural inaccessibility and programmatic barriers have as detrimental an impact on health care quality as coverage gaps and financial barriers. Regulations enacted under Title XIX place ultimate responsibility for access to health care with the states. Each state is required to have a state Medicaid plan that "must ensure that all services covered under the State plan are available and accessible to enrollees of MCOs [managed care organizations] , PIHPs [prepaid inpatient health plans] , and PAHPs [prepaid ambulatory health plans] ." While the regulations do not go into detail about what access requires, it is arguable that state Medicaid agencies receive matching Federal monies under an obligation to ensure that all Medicaid enrollees, including enrollees with disabilities, receive equal access to all aspects of the health care delivery system. A state's tolerance of structural and programmatic barriers in the multiple levels of its health care system is an ongoing violation of the Medicaid program and greatly contributes to the health care disparities endured by people with disabilities. These levels range from Medicaid enrollment to the making of appointments to the actual examination, including the failure to monitor or gather information about the extent of these problems.
The Social Security Amendments Act of 1965 also established Medicare, a Federal health insurance program intended to provide for the medical needs of Americans aged 65 and older, regardless of their income/asset levels and medical history. In 1972, Medicare was expanded to include coverage of people with permanent disabilities under the age of 65 who received Social Security Disability Insurance (SSDI). CMS is the Federal agency that now administers Medicare. The Medicare program is legislated as Title XVIII of the Social Security Act; in 2007, the program included 7 million people with disabilities under age 65—about 15 percent of the total of almost 44 million Medicaid enrollees. This subgroup of 7 million younger people with disabilities tends to have relatively high rates of health problems and lower incomes than other enrollees: almost two-thirds live on incomes below twice the FPL, and 40 percent are dual eligible for both Medicare and Medicaid. Among all Medicaid beneficiaries, 36 percent live with three or more chronic health conditions such as hypertension or arthritis, 29 percent have a cognitive or mental impairment that limits their ability to function independently, and 16 percent have functional limitations in activities of daily living such as eating or bathing.
The Medicare program is structured in four parts. Part A is known as the Hospital Insurance program and covers inpatient hospital services and care at skilled nursing facilities, home health care, and hospice care. Part B, known as "Supplementary Medical Insurance," is voluntary, requires payment of beneficiary premiums, and covers physician, outpatient, home health, and preventive services, including diagnostic screenings and imaging such as mammography and durable medical equipment such as wheelchairs and ventilators.
Part C, the "Medicare Advantage Program," was created in the 1970s; it enables Medicare enrollees to sign up with and receive Medicare-covered benefits through private health plans. These plans can take a variety of forms, are paid by the Federal Government, and are obligated to use any gains between the amount received and their costs to reduce premiums or improve the benefits they offer. If these private plans offer such supplemental benefits as vision or dental care beyond Medicare benefits, they are allowed to charge enrollees a supplemental premium. In recent years, the number of both enrollees and private plans in Part C has rapidly increased, with enrollees growing from 5.3 million in 2003 to 8.3 million in January 2007. However, this growth has been uneven across the states. In 2006, the four states of Alaska, Maine, New Hampshire, and Vermont had less than 1 percent of their Medicare beneficiaries enrolled in Part C, while half of all Medicare Advantage enrollees nationally live in the five states of Arizona, California, Florida, New York, and Pennsylvania. Medicare enrollees are eligible for coverage under Part C if they are entitled to benefits under Part A and are also enrolled in Part B.
Part D, known as the Outpatient Prescription Drug Benefit of Medicare, was initiated in 2006 under the Medicare Modernization Act of 2003. In return for premium payments, Part D provides enrollees with a "standard benefit" through either a Part C Medicare Advantage drug plan or a stand-alone prescription drug plan. Medicare enrollees are eligible for coverage under Part D if they are either entitled to benefits under Part A or are enrolled in Part B.
Many people with disabilities, both older and younger than 65 years of age, rely on Medicare. However, the program contains significant gaps in coverage benefits for items or services that can be both expensive and particularly important for maintaining function and independence. For instance, Medicare does not pay for long-term care services at home or in an institution, routine dental care or dentures, routine vision care or eyeglasses, or hearing exams hearing aids. These notable gaps in coverage may result in significant out-of-pocket expenses to meet medical, equipment, and long-term care needs for some people with disabilities. Another serious gap involves people who become disabled before age 65. They must wait 2 years after they establish eligibility for SSDI before they can receive Medicare coverage, a period during which many do not have any insurance coverage.
Part D enrollees also face gaps in terms of both coverage and payments. The private plans that participate in Part D vary widely in terms of their formularies (list of covered drugs), placement of drugs on certain tiers within the formulary, monthly premium charges, cost-sharing requirements, and cost-management tools (for example, the imposition of prior authorization requirements). In addition, Part D's "standard benefit" provides an initial coverage limit of $2,400 in total drug costs, followed by a coverage gap until total drug costs reach $5,451. This means that enrollees with over $2,400 in total prescription drug costs must spend $3,850 out of pocket (not counting premiums) until they reach the point at which Medicare again kicks in, at which time the enrollee pays either 5 percent of the drug cost or a copayment. In 2006, an estimated 4 million Medicare beneficiaries were forced to pay for their prescription drugs when they reached this coverage gap.
Just as for Medicaid enrollees with disabilities, Medicare enrollees with disabilities face structural and programmatic barriers in addition to the administrative and financial barriers that confront all Medicare enrollees. Because CMS and the Federal Government bear direct responsibility for the Medicare program, and CMS is part of HHS, Medicare is undeniably a federally conducted program or activity that is subject to Section 504 of the Rehabilitation Act of 1973. Both Section 504's prohibition against disability discrimination and the detailed HHS regulations enacted under Section 504 require that no qualified person with a disability be excluded from participation in or denied the benefits of Medicare services, programs, or activities. CMS and HHS retain control over Medicare, and these agencies should ultimately be responsible for ensuring that all components of Medicare—from enrollment to architectural access to practices, policies, and procedures in hospitals, provider offices, and pharmacies—are accessible for enrollees with disabilities.
3. State Children's Health Insurance Program (SCHIP)
SCHIP was enacted through the Balanced Budget Act of 1997 as Title XXI of the Social Security Act; it was the largest single expansion of public health insurance coverage since the creation of Medicaid and Medicare in 1965. Like Medicaid, SCHIP is a collaborative partnership between the Federal Government and all 50 states, five territories, and the District of Columbia. CMS has Federal oversight authority over all SCHIP programs, activities, and expenditures. When first enacted, SCHIP was aimed specifically at providing health insurance coverage for more than 10 million uninsured low-income children under age 19 who were not eligible for Medicaid, primarily because their family incomes were above Medicaid eligibility limits. Most of these children lived in families with incomes that were below twice the FPL, in which at least one parent worked full or part time but for whom employee health insurance was either unavailable or unaffordable. While much smaller in scale than either Medicaid or Medicare, SCHIP's enactment was accompanied by substantial state outreach efforts that resulted in significant enrollment of eligible children in Medicaid. SCHIP served 6.6 million children in 2006.
Title XXI was meant to give individual states flexibility to design a program that would effectively reach and provide health insurance for uninsured children. It therefore gave states three options for using their SCHIP funds. States could expand their existing Medicaid programs by covering SCHIP children, create a separate child health insurance program with a benefit package that differed from Medicaid, or combine those two options. States that choose to expand Medicaid must offer the full Medicaid benefit package and are required to follow Medicaid's cost-sharing rules. States that choose to offer a separate SCHIP program are generally required to cover primary and preventive health benefits such as immunizations, well-baby and well-child care, and emergency services. Separate SCHIP programs generally can impose limited cost-sharing and no more than $5 copayments for provider visits for families that are below 150 percent of FPL. For families with incomes above 150 percent FPL, these separate programs may not exceed 5 percent of the family's annual income for any cost-sharing charge.
Each state laid out its plans for SCHIP funds, including information on the benefit package, cost-sharing, and eligibility standards, in the initial applications and must receive CMS approval before amending its plan. Unlike Medicaid, SCHIP is a finite block grant. The Federal funds set aside for SCHIP were capped at 40 billion from 1997 through 2007. Thus, the states can cap enrollment when they run out of funds, even if they are not covering children who otherwise meet all program eligibility requirements. In 2007, the matching Federal fund rate for SCHIP program costs ranged from 65 percent to 83 percent.
It is difficult to say how many children with disabilities are covered under SCHIP, because there is no requirement on state programs to collect or maintain this information. In comparing the relative importance of Medicaid and SCHIP to children with disabilities, the National Association of Children's Hospitals stated:
SCHIP children generally have higher incomes and less serious health care needs than children on Medicaid. Medicaid is the primary source of health coverage for low-income children with disabilities; 7 of 10 children with severe disabilities below the Federal poverty level receive Medicaid benefits.
Nonetheless, SCHIP clearly provides critical assistance to eligible families that include children with disabilities, even if the benefit package is less than that provided under Medicaid or enrolled children have less complex health needs. These are families that essentially have no other source of health insurance, and this assistance is arguably more precarious than a Medicaid entitlement because of SCHIP's block grant status.
SCHIP's reauthorization was required in 2007, but Congress and the Administration failed to reach agreement on a reauthorization. President Bush vetoed a compromise bipartisan bill that would have expanded SCHIP coverage to 3.8 uninsured children. In December 2007, Congress passed S. 2499, which extended SCHIP authorization through March 2009 and appropriated sufficient funds to maintain the program at current levels. The bill did not address CMS's August 2007 directive against states' expansion of SCHIP coverage for families above 250 percent of FPL ($43,000 for a family of three in 2007) without proof that 95 percent of children in families with income below 200 percent of FPL were already enrolled. This is particularly significant in light of findings such as those of the 2008 University of North Carolina study, in which researchers found "chilling" rates of hardship among poor, middle-class, and even upper-income families with disabled children as they struggled "to keep food on the table, a roof over their heads, and to pay for needed health and dental care." The study found that 40 percent of the families surveyed who earned between $36,200 and $54,300 for a family of four and had a child with a disability experienced at least one food hardship, including concerns that food would run out or missed meals because of a lack of money.
4. Maternal and Child Health Block Grant
Title V of the Social Security Act, which provides the basis for federally funded public health programs, was first enacted as a Federal-state partnership in 1935, when the Social Security Act was initially passed. In 1981, Congress converted the Title V program to a block grant and consolidated seven categorical programs into the Maternal and Child Health Services Block Grant (MCH Block Grant), as Title V is now known. Further amendments enacted in 1989 imposed stricter state planning and reporting requirements and funding criteria. The MCH Block Grant is federally administered by the Maternal and Child Health Bureau (MCHB) under the Health Resources and Services Administration (HRSA) within HHS.
Title V continues to be a Federal and state matching program—every $4 provided by the Federal Government for the program must be matched by $3 of state funds. Most of the Federal appropriations for the MCH Block Grant (approximately 85 percent) are awarded to state health agencies, mainly on the basis of the number of children in poverty in the state relative to the total number of children in poverty nationally. The remaining 15 percent supports discretionary grants awarded by MCHB for Special Projects of Regional and National Significance (SPRANS). SPRANS grants generally support the continuation of certain categorical programs in such areas as genetic disease testing, counseling and information dissemination, and MCH research and training.
Title V is intended to provide comprehensive services for mothers and children. MCHB describes Title V as the only Federal program that consistently provides all four possible levels of services: (1) direct health care; (2) enabling services such as transportation, translation, and health education; (3) preventive services such as newborn screening, immunization, and oral health; and (4) infrastructure-building services such as needs assessment, policy development, and information systems support. One national grassroots organization of families of children with disabilities reports that Title V state programs operated a clinic-based system of care that has recently been turning more toward care coordination services, though some state programs still provide direct clinical services, usually in collaboration with Medicaid and private insurance.
Title V allows billing of patients for services on a sliding scale on the basis of income. Many services are provided free of charge, unless the patient has Medicaid or private insurance. States may set the types of services that they provide and set eligibility, resulting in a wide variety of benefits and eligibility criteria across states in MCH Block Grant programs. States that receive Title V funds are subject to detailed annual reporting requirements. States must document how many children in the state have special health needs and how services will be received, along with infant mortality and child and maternal health statistics according to such categories as county, race, and ethnic group. The Secretary of HHS is to compile this information nationally and by state, for annual transmission to Senate and House of Representatives committees.
Like enrollees in Medicaid and the other federally funded programs described above, children with disabilities who receive services under Title V encounter a variety of structural and programmatic barriers to health care access and are entitled to coverage under Section 504 of the Rehabilitation Act. Title V also contains a specific reference to nondiscrimination that expressly incorporates Section 504 and states that "programs and activities funded in whole or in part with funds made available under this title are considered to be programs and activities receiving Federal financial assistance." The Secretary of HHS is authorized to request compliance with Title V's nondiscrimination provision from any state's chief executive officer and to refer the matter to the U.S. Attorney General for a civil action. The logical next step is to link a state's responsibility for ensuring nondiscrimination in its Title V programs with the state's existing reporting requirements. For example, currently required information on the number of maternal and child-health-related providers licensed in the state in a year could incorporate information on the degree to which those providers have received training in the accessibility needs of children with disabilities. Currently required information on the proportion of women who did not receive prenatal care during the first trimester of pregnancy could include information on whether the mother had a disability, as well as on her racial and ethnic origin. Indicators specific to the structural and programmatic accessibility of maternal and child care providers in Title V programs could be systematically incorporated in annual audits.
B. Developmental Disabilities Assistance and Bill of Rights Act of 2000
The Developmental Disabilities Assistance and Bill of Rights Act (DD Act) has its genesis in the much older Mental Retardation Facilities and Community Health Centers Construction Act of 1963, the first legislation to address the recognized needs of a group of people with disabilities designated as developmentally disabled. Currently, the act is administered by the Administration on Developmental Disabilities (ADD), which is part of the HHS Administration for Children and Families. The law today remains the main route by which grant monies are used to improve the lives of people with developmental disabilities, but a series of amendments over the past four decades reflects a modified focus from service delivery and demonstration to public policy advocacy, mirroring the social and political changes that prompted the development and enactment of more recent Federal disability rights laws such as the Americans with Disabilities Act (ADA). In 1999, Congress made a number of findings under the DD Act that are significant for health care delivery.
- People with developmental disabilities often encounter discrimination in the provision of critical services and are at greater risk than the general population for abuse, neglect, financial and sexual exploitation, and legal and human rights violations.
- Many service delivery systems and communities are unprepared to meet the needs of the 479,862 adults with developmental disabilities living at home, for whom the primary caregiver is a parent (or parents) who are 60 years or older.
- Eighty-eight percent of persons with developmental disabilities live with their families or in their own households, and there is a critical need for a well-trained workforce that can provide appropriate services, supports, and other forms of direct assistance to enable people with developmental disabilities to continue living, learning, working, and participating in their communities.
- Many people with developmental disabilities and their families do not have access to appropriate support and services such as access to assistive technology, and so are either underserved or not served at all.
- Services, supports, and other assistance should be provided in a culturally competent manner that fully includes individuals from racial and ethnic minority backgrounds in the activities provided under the law.
The DD Act's four distinct grant programs are intended to ensure that "individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life, through culturally competent programs." Grantees are required to work with state governments, local communities, and the private sector, and grants are used to fund activities in one of eight areas of emphasis: quality assurance, education and early intervention, child care, health, employment, housing, transportation, and recreation activities. The four grant programs currently consist of the State Councils on Developmental Disabilities (SCDDs), the state Protection and Advocacy (P&A) systems, the University Centers for Excellence in Developmental Disabilities (UCEDDs), and Projects of National Significance (PNSs).
These four programs overlap to some extent and are intended to support one another, but the P&A systems and the UCEDDs are most likely to provide direct services to people with developmental disabilities and their families. The P&A systems provide administrative and legal information, referral, investigation, and representation to people with developmental disabilities on their civil and human rights. The UCEDDs provide community services such as training or technical assistance to people with disabilities, their families, professional and paraprofessional service providers, students, and other community members, and may provide services, supports, and assistance through demonstration and model activities. The UCEDDs also have a broad research mandate to conduct basic or applied research, evaluation, and public policy analyses in "areas that affect or could affect . . . individuals with developmental disabilities and their families," and to disseminate information about their activities and any areas of substantive expertise. The UCEDDs also provide coordinated and multidisciplinary direct health care.
The UCEDDs were formerly known as University Affiliated Programs (UAPs) but were renamed in the 2000 DD Act. A few specific subsections in the existing regulations are worth nothing, as they relate to health care accessibility for people with developmental disabilities and disabilities in general. The ADA is mentioned twice in the regulation on governance and administration of the UAPs. First, "UAP faculty and staff must represent the broad range of disciplines and backgrounds necessary to implement the full inclusion of individuals with developmental disabilities in all aspects of society, consonant with the Americans with Disabilities Act." Second, and more significantly, "[t] he UAP physical facility and all program initiatives conducted by the UAP must be accessible to individuals with disabilities as provided for by section 504 of the Rehabilitation Act and Titles II and III of the Americans with Disabilities Act." Because the UAPs/UCEDDs are federally funded, as well as associated with universities that are either Title II or Title III entities under the ADA, they are already subject to Section 504's mandate of nondiscrimination and either Title II or III. Nevertheless, the regulations' mandate to comply with Section 504 and ADA accessibility requirements strengthens any kind of self-advocacy action or complaint brought directly against a UAP with inaccessible facilities or program initiatives. Additional measures of accountability for UAP accessibility result from the UAP's obligation to maintain collaborative relations with the state P&A agency and SCDD and to solicit the active participation of consumers of UAP services and programs to evaluate its programs.
UAPs are explicitly directed to make a difference in their university homes, to consider the needs of the developmental disabilities community, and to work with the community, agencies, and advocacy organizations. UAPs are to "influence University curriculums to prepare personnel who, in their future career in a broad range of social and community roles, will contribute to the accommodation and inclusion of individuals with developmental disabilities, as mandated in the Americans with Disabilities Act." The UAP system interventions must be collaboratively planned with people with developmental disabilities and their families and, where direct services are offered, "must integrate direct services and projects into community settings," "include adult and elderly individuals with developmental disabilities" as appropriate, "maintain cooperative relationships with other community service providers," and "interact with and involve community members, agencies, and organizations." Finally, UAPs are to "produce a variety of products to promote public awareness and visibility of the UAP, and facilitate replication of best practices," use the input of people with developmental disabilities and their families, and make materials "available in formats accessible to individuals with a wide range of disabilities."
The UAPs/UCEDDs serve as models because they have been consistently funded for more than four decades and were thoughtfully embedded within a network of grant programs that address technical assistance, community and provider training, diversity in higher education, administrative and legal enforcement, and builds in collaboration among all the programs. Accessible health care is recognized as one of the key elements through which people with developmental disabilities will achieve "increased independence, productivity, inclusion, and community integration." It could be argued that UCEDDs and the DD Act are directed toward a specific population of people with developmental disabilities and therefore need to be physically and programmatically accessible to this population. The UCEDDs should place special emphasis on accessibility because they serve a population with specialized needs.
On the other hand, accessible health care is necessary not only to the numerous people with a variety of disabilities—and seniors, who often develop disabilities as they age—but to every person, because one's health is always in flux. The directives, institutional programs, and accountability measures in the DD Act illustrate much of what needs to be in place to achieve universally designed and accessible health care.
C. Title IX of the Public Health Service Act, As Added by Public Law 106-129
Title IX of the Public Health Service Act establishes the Agency for Healthcare Research and Quality (AHRQ) and its mission and duties. Essentially, AHRQ is "the lead Federal agency charged with improving the quality, safety, efficiency, and effectiveness of health care for all Americans," primarily through supporting health services research. Approximately 80 percent of the AHRQ annual budget is invested in grants and contracts with research institutions and organizations focused on improving some aspect of health care delivery or evidence-based decision making. Title XI authorizes the AHRQ Director to gather information on the quality and cost of health care, primarily in the form of a nationally representative survey on the cost, utilization, and quality of health care, including the following:
their access to health care services, frequency of use, how much is paid for the services used, the source of those payments, the types and costs of private health insurance, access, satisfaction, and quality of care for the general population, including rural residents and also for populations identified [as "priority populations"] .
Other than this admittedly important task of statistical information gathering, Title XI does not address in any way the monitoring of individual access to health care or the enforcement of nondiscrimination rights; even systemic standard setting is outside the AHRQ mandate. The agency's legislative authorization explicitly states that AHRQ "shall not mandate national standards of clinical practice or quality health care standards. Recommendations resulting from projects funded and published by the Agency shall include a corresponding disclaimer." Moreover, nothing in AHRQ's responsibilities "shall be construed to imply that the Agency's role is to mandate a national standard or specific approach to quality measurement and reporting." In common parlance, Title XI does not take a carrot-and-stick approach to systemic improvement; it simply encourages research that is intended to lead to systemic improvement.
AHRQ's very limited ability to implement or enforce necessary change or establish binding standards for improving health care quality is somewhat dismaying given that, among the 12 HHS agencies, AHRQ has the broadest and most systemic mandate with regard to people with disabilities. The AHRQ Director is specifically charged to conduct and support research and develop evaluations, including demonstration projects, with respect to "health care for priority populations, which shall include (1) low-income groups; (2) minority groups; (3) women; (4) children; (5) the elderly; and (6) individuals with special health care needs, including individuals with disabilities and individuals who need chronic care or end-of-life health care." People with disabilities fall squarely within the AHRQ mandate because they are explicitly recognized as a priority population.
AHRQ is further charged with establishing an Office of Priority Populations to help conduct and support research to gather scientific evidence regarding "all aspects of health care," including the enhancement of patient participation, cost-effectiveness, innovative technologies, access, quality measurement, best practice dissemination, and how health care organization and financing affects the quality of patient care. Many of these aspects of health care quality are vitally important to people with disabilities. For example, people with a variety of disabilities find themselves unable to gain access to innovative diagnostic and imaging technologies because they are not universally designed. Many people with disabilities rely on items of durable medical equipment or communication technologies that are increasingly out of reach because of narrow public insurance interpretations of what is "medically necessary" and private insurance coverage limitations.
The AHRQ mandate includes the promotion of innovation in evidence-based health care practices and technologies by "conducting and supporting research on the development, diffusion, and use of health care technology" and "developing, evaluating, and disseminating methodologies for assessments of health care practices and technologies." The agency is also authorized to conduct and support specific assessments of existing and new health care practices and technologies. Such a broad mandate should be able to encompass research and assessment of the kinds of on-the-ground concerns with access to durable medical equipment and new and developing technologies that have a tremendous practical impact on access to health care for people with disabilities. Once again, however, there is the significant limitation that AHRQ's discoveries are to be disseminated and potentially influential, but cannot mandate change.
Overall, AHRQ is given an important role in assessing health care quality for people with disabilities, but it is a role that forms only a small part of an extremely broad mandate to research health care quality for all Americans. The agency is further charged with coordinating "all research, evaluations, and demonstrations related to health services research quality measurement and quality improvement activities undertaken and support by the Federal Government." As a result, the agency must deal with an extremely fragmented Federal network of specialized services, research, and funding related to adults and children with disabilities. Finally, AHRQ has no authority to set binding standards or establish monitoring systems in relation to its research findings, no matter how clearly those findings signal a need for such standards or monitoring. Since AHRQ-conducted and -supported research findings and quality assessments do not place any kind of mandate on Federal or private entities, it would be difficult for any individual or group to use such findings to show that a standard of care has been established, much less violated. Nevertheless, if AHRQ promoted research that clearly identified the various barriers encountered by people with disabilities as a priority population when seeking health care, it could help advocates document a statistically accurate record of, for example, the extent to which health care technologies, facilities, and equipment remain inaccessible to people with disabilities and bolster efforts to effect change.
AHRQ was originally required to submit an annual report to Congress, beginning in 2003, regarding "prevailing disparities in health care delivery as it relates to racial factors and socioeconomic factors in priority populations." Even when Title IX was first enacted, the language and reference of health and health care disparities linked to racial and socioeconomic factors did not acknowledge the presence of disability itself as a demographic characteristic that could be linked to health and health care disparities. In any event, this requirement was struck a year later with the enactment of the Minority Health and Health Disparities Research and Education Act of 2000 (MHDREA). MHDREA added health care disparities generally to the AHRQ research and dissemination mandate, and simultaneously centralized a more specific and greater authority to research and address biomedical and behavioral factors relating to health disparities in a different Federal entity, the National Center on Minority Health and Health Disparities (NCMHD). The following section assesses the impact of this division.
D. Minority Health and Health Disparities Research and Education Act of 2000
The Minority Health and Health Disparities Research and Education Act of 2000 (MHDREA) amends the Public Health Service Act (PHSA) to establish the National Center on Minority Health and Health Disparities (NCMHD) and expand the AHRQ research mandate to include the issue of health disparities. The new national center has its roots in the Office of Research on Minority Health (ORMH), created in 1990 by the NIH Director and formally established in the Office of the Director by the Health Revitalization Act of 1993. ORMH is the predecessor of NCHMD, and the 2000 law was prompted by the same underlying concern with "continuing disparities in the burden of illness and death experienced by African Americans, Hispanics, Native Americans, Alaska Natives, and Asian Pacific Islanders, compared with the United States population as a whole." Under the act, NCMHD has two main purposes. First, it is to develop and support a national research agenda at NIH with respect to minority health conditions and other populations experiencing health disparities. Second, it is to promote and fund increased research capacity on health disparities in minority and medically underserved communities, and to train students from minority and other health disparity groups in biomedical and bio-behavioral research careers.
Under the act, a population is a "health disparity population" if "there is a significant disparity in the overall rate of disease incidence, prevalence, morbidity, mortality, or survival rates in the population as compared to the health status of the general population." The NCHMD Director is to determine, after consultation with the AHRQ Director, whether a population fits these criteria; the Director is specifically required to give "priority consideration" to whether minority groups qualify as health disparity populations. This definition of a health disparity population poses something of a barrier to the inclusion of persons with disabilities, as it seems easiest for researchers to assume a common "healthy" or "zero disease" starting point for comparing a particular population group and the general population, even though people with disabilities could experience the described disparities in a way that is not directly attributable to the mere presence of disability. That is, a population group consisting of people who have disabilities or a particular disability could well have a higher overall incidence rate of secondary disease (for example, coronary heart disease or cancer), higher morbidity rates, or lower survival rates on diagnosis. These differences could be due to such factors as inappropriate clinical treatment, lack of preventive knowledge, adoption of risk behaviors, or systemic physical, programmatic, or cultural barriers that impede access to health care. These are among the factors that NCHMD could target when coordinating, planning, and budgeting NIH"s health disparities research on "the causes of such disparities and methods to prevent, diagnose, and treat such disparities."
Research is needed for people with disabilities, just as it is for other demographically identifiable groups such as minorities. Unfortunately, however, a disability is often incorrectly assumed to determine a person's general health status. NCMHD has rarely undertaken even basic research on the existence of health disparities in disease prevalence, morbidity, mortality, and survival rates for people with disabilities. The lack of such research may stem from the center's need to establish the most straightforward connection between a demographic characteristic, such as race, and evidence of significant health disparities.
The definition of a health disparity population used by NCMHD contrasts distinctly with the expanded definition available to the AHRQ Director; the latter definition may include "populations for which there is a significant disparity in the quality, outcomes, cost, or use of health care services or access to, and satisfaction with, such services, as compared to the general population." The AHRQ Director need not compare two groups that have the same overall starting health condition to establish a significant difference in the fact of disease, morbidity, or survival. Instead, the additional focus on health care quality, outcomes, and utilization, including access, provides an objective means for establishing a significant disparity that is not so tied to the amorphous concept of community or individual health status. However, even if the AHRQ Director included people with disabilities or specific disabilities in the definition of a health disparity population, the expansion would only hold true for AHRQ's own mandate on health disparities research. The heart of the AHRQ mission is to conduct and support research and evaluate and disseminate research findings. AHRQ cannot require other agencies to investigate, prioritize, or budget for disparities research. The agency is required to support the development of quality health care measures for health disparity populations that will "assess the experience of such populations with health care systems" and "assess the access of such populations to health care," but the agency cannot mandate the creation of such measures of their adoption once developed.
These limitations on AHRQ's mandate and authority mean that, even if people with disabilities are explicitly acknowledged as a health disparity population by the agency, this particular population group can continue to be excluded from NCMHD and NIH's attention and research agenda. This agenda includes such tangible incentives for changing the status quo as awarding grants or contracts of up to 5 years to Centers of Excellence in biomedical and behavioral research training for members of health disparity populations and loan forgiveness programs of up to $35,000 a year for health professionals who agree to engage in health disparities research. If people with disabilities as a group are seen as falling outside the ambit of NCMHD's jurisdiction, they would also forgo the benefit of potential future congressional actions that could expand or build on the act's capacity to require systemic health care monitoring and civil rights enforcement.
One author who applauded the MHDREA as a first step toward reducing the institutionalized use of unscientific race-based research in clinical decision making for African Americans suggests that, in addition, "[i] f we are serious about invigorating Title VI enforcement, the cornerstone is the systemic collection of data from each health care provider that receives Federal funds on racial disparities in the use of services and the choices of diagnostic and therapeutic alternatives." A 2007 proposed amendment to the MHDREA elaborates on this suggestion and requires the HHS Secretary to collaborate with the HHS Office of Civil Rights to (1) review cases filed with the Office of Civil Rights against health care providers that have been closed without a finding of discrimination to ensure that there is in fact no pattern or practice of activities that could lead to discrimination; (2) provide technical assistance or education to providers in particular geographic areas where such patterns or practices are identified; and (3) biannually publish the name and location of any entity that has had a finding of discrimination made against it by the Office of Civil Rights, including the office's findings and any agreement entered into with the entity. This collaboration between the Secretary and the Office of Civil Rights is, however, tightly focused on discrimination and technical assistance related to racial and ethnic minority groups. No congressional proposal yet appears to suggest enforcement and monitoring for disability discrimination as well as racial or ethnic discrimination under MHDREA. While such information gathering about the structural and programmatic accessibility of provider offices and the enforcement of Section 504 of the Rehabilitation Act would not in itself turn the tide of pervasive health care inaccessibility, it could provide critical additional support for such a systemic sea change.
Another notable feature of the MHDREA is that health disparities research is defined as "basic, clinical, and behavioral research on health disparity populations (including individual members and communities of such populations) that relates to health disparities... including the causes of such disparities and methods to prevent, diagnose, and treat such disparities." This concept of health disparities research is quite broadly worded, which is in accord with the congressional finding listed at the beginning of the act: "[b] ehavioral and social sciences research has increased awareness and understanding of factors associated with health care utilization and access, patient attitudes toward services, and risk and protective behaviors that affect health and illness. These factors have the potential to then be modified to help close the health disparities gap among ethnic minority populations." Despite the potential breadth of NCHMD's research under the act, the center's online vision and mission statement clearly gives the impression that disparities caused by access issues fall outside NCHMD's authority.
Although some of the causes of disparate health outcomes such as differences in access to care, are beyond the scope of biomedical and bio-behavioral research, the National Institutes of Health (NIH) can play a vital role in addressing and easing health disparities involving cancer, diabetes, infant mortality, AIDS, cardiovascular illnesses, and many other diseases. Accordingly, the NIH has made health disparities a priority.
The clear sense is that NCMHD is concerned only with health disparities linked to the initial acquisition of a disease, and much less with if and how health and function can be maintained when a disease or health condition has been acquired. Presumably AHRQ, with its far more limited authority, is left to investigate social and environmental factors relevant to health care disparities and health access, including those involving minority health disparity populations.
Ultimately, these distinctions among health and health care disparities and the factors that contribute to disparities serve neither minority health disparity populations nor other populations. Scholars have noted and raised objections to the decontextualized "race-only lens" of the MHDREA as one that offers only narrow explanations for racial disparities in health such as biological race, socioeconomic status, and personal responsibility, in effect foreclosing the analysis and addressing of issues of racism in health care policy development. For people with disabilities, the traditional medical emphasis on genetic and biological determinism has always overshadowed investigation into issues of socio-economic status and behavioral factors. While specific environmental issues related to physical and communication access barriers experienced by people with disabilities have increasingly risen to the surface in scholarly research, the MHDREA essentially confines the issue to AHRQ's domain of health care quality assessment.
There does not appear to be any Federal coordination or means of investigating how numerous factors such as socioeconomic status; environmental, financial, structural, and programmatic barriers; institutionalized prejudice; cultural and other communication issues; and biological and clinical factors interact together to create and maintain health disparities. The initiation of such an approach, across Federal agencies and sustained over time in terms of funding, would undoubtedly help establish the fact that people with disabilities experience health and health care disparities, and would better enable all demographic groups that experience such disparities, including minority populations, to unearth the causes of disparity and develop better health outcomes.
E. Title II of the Rehabilitation Act of 1973 and the National Institute on Disability and Rehabilitation Research
Unlike many agencies and organizations that have a disability-related research mandate, the National Institute on Disability and Rehabilitation Research (NIDRR) is authorized under the Rehabilitation Act of 1973, Title II, rather than the Public Health Service Act. NIDRR is not part of HHS but is located in the Office of Special Education and Rehabilitative Services (OSERS) in the U.S. Department of Education (ED). NIDRR's mission is to conduct and coordinate research and related activities that will enable people with disabilities of all ages to maximize full inclusion, social integration, employment, and independent living, and to maximize society's capacity to provide accommodations and equal opportunities for its citizens with disabilities. To that end, NIDRR's research and development mandate includes health and function and also more broadly encompasses other key areas such as employment, participation and community living, and assistive technology. NIDRR's statutory authority requires dissemination of its research findings to people with disabilities and their families, private researchers, rehabilitation service providers, and all levels of Government and public entities; the promotion of technology transfer; increased opportunities for minority institutions and research with disabilities or from minority groups; and the provision of advanced training in disability and rehabilitation research. NIDRR has formed numerous partnerships with other Federal agencies, research institutions, and consumer organizations through its funding of various research projects,[352/] and the agency holds designated responsibility for chairing the Interagency Committee on Disability Research (ICDR). The ICDR is required to meet at least four times a year and has the goal of coordinating Federal rehabilitation and disability research, including research relating to assistive technology and the principles of universal design.
F. Entities Created and Authorized Under the Public Health Service Act
1. Health Centers
The Health Resources and Services Administration (HRSA) is part of the Public Health Service and is authorized under the Public Health Service Act (PHSA). HRSA "is responsible for general health services, and it acts as a resource center with respect to issues of access, equity, quality, and cost of care." In particular, HRSA supports states and communities in organizing and delivering preventive and primary health care services to underserved residents and specific groups, such as migrant workers and the homeless, by approving grants or contracts that fund health centers. Four different health center programs (two of which were initiated in the 1960s) were legislatively combined through the Health Centers Consolidation Act of 1996, although each health center continued to maintain its own distinct resource stream. The four programs originally served migrant farm workers, medically underserved populations living in urban and rural communities, homeless persons, and residents of public housing. These target populations have been maintained in the current definition of "health center" as "an entity that serves a population that is medically-underserved, or a special medically underserved population comprised of migratory and seasonal agricultural workers, the homeless, and residents of public housing." Health centers must provide, either directly or through contracts or cooperative arrangements, primary health services as defined in the PHSA and additional health services as appropriate for particular centers and necessary for the adequate support of the primary health services. In addition, community health centers must provide these services to all residents of the area served by the center.
Health centers are addressed here because substantial numbers of people with various disabilities are included in the four population groups served by these entities. This raises the issues of architectural and programmatic accessibility, and the question of whether people with disabilities could in fact be designated as a medically underserved population that receives health care services through new or existing health centers.
On the first issue, the PHSA contains a specific provision that states that "programs and activities funded in whole or in part with funds made available under [preventive health and health services block grants] are considered to be programs and activities receiving Federal financial assistance" under nondiscrimination laws. Assuming that the health center funding grants constitute a preventive health or health service block grant, this means that Section 504 applies to the health centers, which are required to undertake reasonable architectural and programmatic modifications to ensure access for people with disabilities. Moreover, the PHSA's own requirement that community health centers that serve medically underserved populations must provide health care services to "all residents of the area" also argues for barrier removal as a priority in these clinics. This is especially the case in rural areas that have few health care service options for residents with various disabilities.
With regard to the second issue, PHSA has a relatively broad definition of "medically underserved population" as "the population of an urban or rural area designated by the Secretary as an area with a shortage of personal health services or a population group designated by the Secretary as having a shortage of such services." In addition, the Secretary is to prescribe criteria for determining what it means to have specific shortages of personal health services and "include factors indicative of the health status of a population group or residents of an area, the ability of the residents of an area or of a population group to pay for health services and their accessibility to them, and the availability of health professionals to residents of an area or to a population group." While, as a group, people with disabilities experience lower health status, difficulty paying for health services, and shortages of available health professionals because of inaccessibility, these experiences are not necessarily linked to geography in the way that PHSA seems to contemplate. Nonetheless, pursuing the inclusion of people with disabilities as a medically underserved population is an idea worth further exploration.
2. Substance Abuse and Mental Health Services Administration
Section 290aa of the Public Health Service Act (PHSA) established SAMHSA as an agency of the Public Health Service. SAMHSA is made up of three centers that deal respectively with substance abuse treatment, substance abuse prevention, and mental health services. A presidentially appointed SAMHSA administrator supervises and appropriately supports the implementation of each center's programs, which are primarily carried out through grants, cooperative agreements, and contracts with appropriated funds. Through the centers, SAMHSA is required to establish and implement "a comprehensive program to improve the provision of treatment and related services to individuals with respect to substance abuse and mental illness, and to improve prevention services, promote mental health, and protect the legal rights of individuals with mental illnesses and individuals who are substance abusers." SAMHSA's specific tasks include conducting and coordinating demonstration projects, evaluations, and other activities to improve the availability and quality of treatment, prevention, and related services; disseminating knowledge and public information related to substance abuse and mental health; and coordinating with other Federal agencies, including NIH, CDC, and AHRQ concerning HIV and tuberculosis prevention and the community impact of treatment and prevention services. The administrator of SAMHSA is required to report biennially report to House and Senate committees concerning the agency's activities.
Beyond the fact that SAMHSA's programs are meant to serve specific groups that can be characterized as having disabilities, the agency's enabling legislation says nothing about the need for or provision of substance abuse or mental health services among people with disabilities in general. For instance, there is a specific provision that calls on the administrator to ensure "that services provided with amounts appropriated under this subchapter are provided bilingually, if appropriate" but no similar direction regarding sign language, alternative communication formats, or physical accessibility. Such access requirements could nevertheless be implied if SAMHSA grants are considered Federal financial aid under Section 504. There is also a specific directive to work with the National Institutes on Aging, Drug Abuse, Alcohol Abuse and Alcoholism, and Mental Health to "promote and evaluate substance abuse services for older Americans in need of such services, and mental health services for older Americans who are seriously mentally ill."[369/] Such a directive concerning people with disabilities would help to highlight the substance abuse treatment and mental health needs of people with various disabilities.
The SAMHSA legislation's silence on disability status or access can be contrasted with subsections devoted to the establishment of an associate administrator and an Advisory Committee for Women's Services. One duty of the associate administrator and the committee is to ensure "that the unique needs of minority women, including Native American, Hispanic, African American and Asian women, are recognized and addressed" in SAMHSA's activities. For the purposes of these subsections, "women's substance abuse and mental health conditions, with respect to women of all age, ethnic, and racial groups," means all aspects of substance abuse and mental illness that are (a) unique to or more prevalent among women or (b) characterized by insufficient services or data involving women. This report has noted elsewhere the prevalence of substance abuse and mental illness, and the difficulty of obtaining treatment, experienced by women with disabilities and people with communication difficulties. Women with disabilities could benefit from explicit inclusion in the work of the associate administrator and the Advisory Committee for Women's Services, which essentially reports on disparities of data collection, diagnosis, treatment, and employment experienced by women in the areas of substance abuse and mental illness. People with disabilities could also benefit from the establishment of a parallel to the associate administrator and the Advisory Committee for Women's Services that would focus on the state of substance abuse and mental health services among people with disabilities.
3. National Center on Birth Defects and Developmental Disabilities Within the Centers for Disease Control and Prevention
The National Center on Birth Defects and Developmental Disabilities (NCBDDD) was established and authorized as a center within the Centers for Disease Control and Prevention (CDC) by section 247b-4 of the Public Health Service Act.[374,] Many of NCBDDD's duties involve operating programs to collect and analyze data, conduct research, and promote and provide public education and information dissemination on the prevention of birth defects and developmental disabilities. These duties are generally carried out through grants and contracts with public and nonprofit private entities. NCBDDD is also responsible for reporting on the incidence and prevalence of birth defects, developmental disabilities, and the health status of individuals with disabilities. In its biennial report to House and Senate committees, NCBDDD is to include information on the impact of these conditions on quality of life and among various racial and ethnic groups, the effectiveness of various approaches to preventing secondary health conditions among people with disabilities, and health disparities experienced by people with disabilities. This reporting mandate includes development of "recommendations for improving the health and wellness and quality of life" of people with disabilities. This mandate enables NCBDDD to be a source of potentially important research funding and data concerning the health status of people with disabilities. (See chapter 4 for a discussion of NCBDDD's disability-related programs and for recommendations aimed at CDC and NCBDDD.)
4. National Institutes of Health
The National Institutes of Health (NIH) is an agency of the Public Health Service; its overall organization is established in section 281 of the Public Health Service Act, although references to specific authorization, duties, and funding for NIH and its component national research institutes and centers are made throughout the act. Each institute "conducts and supports research, training, health information and other programs with respect to a particular disease or group of diseases or any other aspect of human health"; this is also the criterion by which the Secretary of HHS would establish the need for any additional national research institute. Most of the current institutes focus on specific disabilities or on human conditions such as aging. The National Center on Minority Health and Health Disparities profiled earlier in this chapter. In addition, the Office of the Director of NIH contains a Division of Program Coordination, Planning, and Strategic Initiatives, which consists, in turn, of specific offices such as the Office of AIDS Research and the Office of Research on Women's Health. There may be a total of no more than 27 national research institutes and national centers. Section 281 also establishes an advisory council within NIH known as the Scientific Management Review Board, which has such significant responsibilities as periodically reviewing and evaluating the research portfolios of the institutes, recommending organizational changes to the institutes, and submitting reports on organizational issues to significant House and Senate committees. However, the NIH Director retains the authority to override organizational changes recommended by the board, which otherwise are to be implemented, and to unilaterally initiate functional reorganization, establishment, and termination of institutes and offices within the Office of the Director. NIH's annual appropriations are authorized under section 282a. (See chapter 4 for a discussion of NIH programs that have engaged in research on disability health disparities or other disability and health issues.)
G. Conclusion and Recommendations
Numerous opportunities exist within the current legal framework of key Federal laws that establish health, health care, health research, and other programs to incorporate a focus on people with disabilities and include disability surveillance in key areas where data are already being collected for other demographic groups. The following recommendations identify these and other opportunities.
Congress should amend the Public Health Service Act that established the Substance Abuse and Mental Health Services Administration (SAMHSA) to include an emphasis on people with disabilities through the following changes:
- Add a directive that identifies people with disabilities. Such a directive could be modeled after the existing directive to work with the National Institutes on Aging, Drug Abuse, Alcohol Abuse and Alcoholism, and Mental Health to "promote and evaluate substance abuse services for older Americans in need of such services, and mental health services for older Americans who are seriously mentally ill."
- Amend the specific provision that ensures "that services provided with amounts appropriated under this subchapter are provided bilingually, if appropriate" to include provision of effective methods of communication for people who are deaf or hard of hearing, including sign language interpreters.
- Include mental health and substance abuse issues of concern to women with disabilities among the identified duties of the associate administrator and the Advisory Committee for Women's Services, which ensure that "the unique needs of minority women, including Native American, Hispanic, African American and Asian women, are recognized and addressed" in SAMHSA's activities. This should include aspects of substance abuse and mental illness that are (a) unique to or more prevalent among women or (b) characterized by insufficient services or data involving women.
The Director of the National Institutes of Health (NIH) should require that institutes and centers within NIH that conduct health disparities research include people with disabilities as a demographic population for the purpose of such research. The Director should also request that the Scientific Management Review Board determine how best to integrate disability and health disparity research into the portfolios of the institutes and centers, and recommend any organizational changes that might be required to achieve this goal.
The Agency for Healthcare Research and Quality (AHRQ), within its mandate to undertake research on priority populations, should promote research that clearly identifies the various barriers encountered by people with disabilities when seeking health care. Such research would help disability health policy researchers and other stakeholders to assemble an accurate picture of, for example, the extent to which health care technologies, facilities, and equipment remain inaccessible to people with various disabilities, and bolster efforts to effect change.
The Secretary of the U.S. Department of Health and Human Services (HHS) should require substantive evidence of compliance with Title V of the Social Security Act's Section 504 nondiscrimination provision from every state that receives funding under the Maternal and Child Services (MCH) Block Grant program.
States that receive MCH Block Grant funding should link their responsibility for ensuring disability nondiscrimination in Title V programs, as expressly incorporated in the statute, with their existing reporting requirements. For example, currently required information on the number of maternal and child-health-related providers licensed in the state in a year should incorporate information on the degree to which those providers have received training in the accessibility needs of children with disabilities. Currently required information on the proportion of women who did not receive prenatal care during the first trimester of pregnancy should include information on whether the mother had a disability along with currently collected information about her racial and ethnic group. Moreover, indicators specific to the structural and programmatic accessibility of maternal and child care providers in Title V programs should be systematically incorporated in the annual audits.
State Medicaid agencies and health maintenance organizations (HMOs) should notify enrollees with disabilities of their Federal accessibility rights, as well as the right to auxiliary aids where necessary, either for effective notice or to provide equal benefit from the service in question, as established in Section 504. State Medicaid agencies and HMOs that receive Federal financial assistance must acknowledge and act on their own generally greater financial and administrative capacity (compared with individual health care providers) to set policies and procedures that will inform, provide incentives, monitor, and enforce accessibility requirements among the providers that deliver health care services.
State Medicaid agencies that accept matching Federal monies must ensure that all Medicaid enrollees, including enrollees with disabilities, receive equal access to all aspects of the health care delivery system. Regulations enacted under Title XIX of the Social Security Act place ultimate responsibility for access to health care with the states. Each state is required to have a state Medicaid plan that "must ensure that all services covered under the State plan are available and accessible to enrollees of MCOs [managed care organizations] , PIHPs [prepaid inpatient health plans] , and PAHPs [prepaid ambulatory health plans] ." The plans must include mechanisms to monitor and collect information about the extent of structural and programmatic access problems.
The continuing presence of structural and programmatic barriers within the multiple levels of state Medicaid health care systems is an ongoing violation of the Medicaid program regulations and greatly contributes to the health care disparities experienced by people with disabilities. A state system may begin with Medicaid enrollment and extend to making health care appointments, as well as to actual health care examinations and treatment.
CHAPTER 4. Assessment of Key Federal Efforts That Promote Health for People with DisabilitiesA. Introduction
The Federal Government undertakes and supports significant public health, biomedical, and social science research, and provides funding for health care services and other activities, such as public education and professional training, through a complex array of programs. Various Federal agencies lead and support interagency collaborations that define the future direction of health, health care, and health disparities research. Chapter 3 of this report outlines the legal framework for the key Government agencies, departments, and centers that engage in these activities, and presents recommendations for including or increasing attention to people with disabilities based on the legislative scheme.
This chapter examines the extent to which people with disabilities are included in the recent activities of these key agencies, departments, and centers as they relate to health, health care, health promotion, disparities research, data collection, professional education, and other related activities. This chapter also presents a brief summary of the Federal Government's level of effort related to health disparities research and program development for people with disabilities. The chapter concludes with recommendations for guiding reform that will improve and promote health, access to health care and health promotion programs and activities, professional education, and necessary research such as data collection.
The following is a discussion of the key Federal agencies concerned with health and disability: the Department of Health and Human Services (HHS), the National Institutes of Health (NIH), other relevant Federal and allied agencies, and lead agencies for identifying future health policy research.
1. Department of Health and Human Services
The Federal Government devotes approximately 20 percent of the annual Federal budget to health care and is the largest insurer of people with disabilities. The HHS is the lead Federal agency for health care, health research, professional training, and health promotion and disease prevention. Within HHS, the Centers for Medicare & Medicaid Services (CMS), with a 2008 budget of $606.9 billion, oversee the two largest programs that provide health care insurance for people with disabilities, as well as the State Children's Health Insurance Program (SCHIP), which also serves certain children with disabilities. Six additional HHS agencies engage in activities such as research, public education, program development, and interagency collaboration related to health, health care, health disparities, and outcomes of concern either to the broad population of people with disabilities or to subsets of that population. These agencies are the Administration for Children and Families (ACF) (2008 budget of $47.4 billion); the National Institutes of Health (NIH) (2008 budget $29.5 billion); the Health Resources and Services Administration (HRSA) (2008 budget of $6.9 billion); the Centers for Disease Control and Prevention (CDC) (2008 budget of $6.5 billion); the Substance Abuse and Mental Health Services Administration (SAMHSA) (2008 budget of $3.4 billion); and the Agency for Healthcare Research and Quality (AHRQ) (2008 budget of $335 million).
2. National Institutes of Health
NIH, composed of 27 institutes and centers, is the primary Federal agency for conducting and supporting medical research. Among its centers and institutes, at least 12 have supported one or more research, education, health promotion, or other projects that relate to health issues and problems experienced by certain subgroups of people with disabilities. Some agencies have specifically included in their mission statement, strategic plan, or both a reference to disability as a population demographic whose members experience health disparities. However, while these agencies have undertaken important projects, the overall effort is quite limited when compared with agency funding levels and other research commitments.
3. Other Relevant Agencies and Offices
Also included within HHS are the Office on Disability and the Office of the Surgeon General, which report directly to the Secretary of HHS.
The National Institute on Disability and Rehabilitation Research (NIDRR) (2008 budget of $106.7 million), in the U.S. Department of Education (ED), also includes a programmatic focus on the health concerns of people with disabilities and has provided funding for research and program development in this area.
The Institute of Medicine (IOM) of the National Academy of Sciences, an independent agency, has also undertaken significant research on topics including health and disability, technology and rehabilitation, and aging and long-term care. In collaboration with and supported by various Federal agencies, IOM carries out research that informs health care policy development. The activities of IOM are included in this report because the agency serves a crucial advisory role to Federal agencies concerned with matters of health and health policy.
4. Lead Agencies for Identifying Future Health Policy Research
In addition to undertaking and sponsoring research, several Federal agencies, including CDC and the Interagency Committee on Disability Research (ICDR), have taken the lead in identifying future public health research needs and initiating Federal collaboration on health disparities research.
B. Overview of Key Federal Efforts That Promote Health for People with Disabilities
The overview and discussion of key Federal efforts to promote health for people with disabilities includes a description of each agency or initiative's overarching mission and goals, and a brief summary of its primary activities related to people with disabilities. (The Medicare, Medicaid, and SCHIP programs, along with related recommendations, are discussed in detail in chapter 3.)
1. Administration for Children and Families
The Administration for Children and Families (ACF) is responsible for Federal programs that promote the economic and social well-being of families, children, individuals, and communities. The Administration on Developmental Disabilities (ADD), within the ACF, is responsible for implementing the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act) (discussed in chapter 3). The DD Act requires ADD to ensure that people with developmental disabilities and their families receive the services and supports they need and are able to participate in planning and designing those services. The DD Act identifies eight areas of emphasis for ADD programs, including health, and specifically mandates that University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDDs) be established. As discussed in chapter 3, UCEDDs undertake interdisciplinary training, community service, and research and information dissemination activities. Currently, ADD funds 68 UCEDDs—at least one in every state and territory—with a total budget of approximately $33 million.
Preservice and continuing education training programs may include family support; personal assistance services; clinical, health, and prevention services; and other direct services. During 2006, for example, 4,279 people were trained in interdisciplinary settings across a variety of disciplines, including pediatrics, special and regular education, psychology, nutrition, and nursing. UCEDD staff also offer expertise and services to individuals with developmental disabilities, family members of these individuals, professionals, and others. According to a 2006 report of UCEDD program activities, more than 524,000 individuals in the community gained knowledge and skills related to the health care needs of people with disabilities, and more than 665,000 people with disabilities benefited from health-related activities supported by UCEDDs.
2. Health Resources and Services Administration
The Health Resources and Services Administration (HRSA) is the primary Federal agency for improving access to health care services for people who are uninsured, underserved, isolated, or medically vulnerable. Its program goals include improving access to health care, health outcomes and the quality of health care; eliminating health disparities; improving the public health and health care systems; and enhancing the ability of the health care system to respond to public health emergencies. HRSA grantees provide health care to uninsured people, people living with HIV/AIDS, pregnant women, mothers, and children. They also train health professionals and improve systems of care in rural communities. HRSA distributed approximately 90 percent of its FY 2007 $6.4 billion budget in grants to states and territories, public and private health care providers, health professions training programs, and other organizations. The following are HRSA's primary areas of activity.
- Providing support to nearly 3,600 health center sites serving about 12.5 million people
- Funding care and treatment services for an estimated 533,000 people living with HIV/AIDS
- Assisting health care organizations, states, and communities, including rural and border areas, in improving services to women and children
- Overseeing the national system that allocates organs, tissue, and blood stem cells for transplant.
- Working with academic health centers and other training programs to enhance the diversity and distribution of the nation's health care workforce
- Implementing comprehensive systems of services in communities to meet the many needs of children and youth with special health care needs and their families
- Participating in global health initiatives such as the President's Emergency Plan for AIDS Relief
Within HRSA, bureaus and divisions whose programs and activities specifically concern people with disabilities include the Maternal and Child Health Bureau (MCHB), the Division of Services for Children with Special Health Needs (DSCSHN), and the Division of Research, Training and Education. In addition, HRSA operates the Health Center Program, which provides comprehensive, culturally competent primary health care services to medically underserved communities and vulnerable populations.
a. Maternal and Child Health Bureau
The Maternal and Child Health Bureau (MCHB) is charged with promoting and improving the health of pregnant women, infants, children, adolescents, and their families. This work includes women of reproductive age, fathers, and children with special health care needs. MCHB administered seven major programs in FY 2007, with a total budget of $838.2 million. MCHB undertakes programs mandated for children with special health care needs established under Title V of the Social Security Act, one of the largest Federal block grant programs. Approximately a million children with special health care needs receive care through Title V programs; this represents about half of American children with severe disabilities and 20 percent of those with chronic health conditions. MCHB also makes discretionary grants to more than 900 maternal and child health programs.
b. Division of Services for Children with Special Health Needs
The Division of Services for Children with Special Health Needs (DSCSHN) supports the development and implementation of comprehensive, culturally competent, coordinated systems of care for the estimated 18 million American children who have or are at risk for chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally. The division works to achieve the systems outcomes set forth in "Healthy People 2010," outcomes intended to break down barriers to community inclusion for people with disabilities. The following programmatic areas are included.
- Family Professional Partnerships/Cultural Competence—supports grants to implement Family to Family Health Care Information and Education Centers for Families of Children with Special Health Care Needs in every state, in keeping with the Family Opportunity Act of 2005.
- Medical Home—promotes access to care for children and youth with special health care needs and their families, improves continuity and quality of care, and ensures comprehensive, coordinated care.
- Health Insurance and Financing—focuses on strategies to improve access to adequate health insurance. Nearly 1 in 10 children with special health care needs have no health insurance, while others are underinsured and experience gaps in coverage for key services, including mental health, ancillary therapies, home health care, and durable medical equipment.
- Early and Continuous Screening—has the goal of placing all infants identified with hearing loss in early intervention programs by the age of 6 months.
- Community Integrated Services—facilitates the development of community-based systems of service for children and youth with special health care needs and their families, and promotes the goal of breaking down barriers to community inclusion for people with disabilities and special health care needs.
- Transition to Adult Health Care—supports statewide grants and a National Resource Center that provides information and resources to prepare youth to make the transition to adulthood, including moving from the pediatric to the adult health care system.
In addition, the Division of Services for Children with Special Health Care Needs supports initiatives on certain special populations and issues, including improving and advancing state-based service systems for traumatic brain injury (TBI) survivors and their families, and improving access to care for children and youth with epilepsy, especially those living in medically underserved and rural areas, and those who belong to racial and ethnic minority populations.
MCHB is also charged with establishing a program for genetic disease testing, counseling, information development and dissemination, and grants related to hemophilia, sickle cell disease, and other genetic disorders. In February 2008, MCHB published the "National Survey of Children with Special Health Care Needs Chart Book 2005-2006."
c. Division of Research, Training and Education
The Division of Research, Training and Education is one of five divisions of HRSA's Maternal and Child Health Bureau. Within the division, the Maternal and Child Health Leadership Education in Neurodevelopmental Disabilities (LEND) program trains individuals from a wide variety of professional disciplines to improve the health of children who have, or are at risk of developing, neurodevelopmental or other related disabilities, such as intellectual and developmental disabilities. Interdisciplinary faculty and trainees include audiologists, dentists, family members, health administrators, nurses, nutritionists, occupational therapists, physical therapists, physicians, psychologists, social workers, special education professionals, and speech and language pathologists.
d. Primary Health Care: The Health Center Program
HRSA-supported health centers provide comprehensive health care services to medically underserved communities and vulnerable populations, including low-income populations, people who are uninsured, those with limited English proficiency, migrant and seasonal farm workers, individuals and families experiencing homelessness, and those living in public housing. Approximately 40 percent of patients served in 2006 were uninsured. Nearly 829,000 individuals served that year experienced homelessness, and more than 129,000 were residents of public housing. Twenty-three percent of patients who received health care from the centers were African American, and 36 percent were Hispanic/Latino. HRSA also funds programs and services provided by designated health centers that are operated by tribal organizations.
While HRSA does not explicitly target people with disabilities for health care services through designated health centers, the groups identified as the intended beneficiaries are likely to experience a greater level of disability than does the general population. Therefore, while HRSA's Health Center Program neither targets individuals with disabilities for health care services nor collects disability status data on those it serves, it is reasonable to assume that a proportion of the individuals who receive services from health centers experience disability.
3. Centers for Disease Control and Prevention
The Centers for Disease Control and Prevention (CDC) promotes health and quality of life by preventing and controlling disease, injury, and disability. CDC works with partners to monitor health, detect and investigate health problems, conduct research, develop public policies, and promote healthy behaviors. Several centers within CDC either sponsor or conduct research concerning health, health care, health status, and health disparities for people with disabilities. These include the National Center for Health Statistics (NCHS), the National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP), the National Center on Birth Defects and Developmental Disabilities (NCBDDD), and the Office on Disability and Health within NCBDDD.
a. National Center for Health Statistics
The National Center for Health Statistics (NCHS) is the principal Federal health statistics agency. (See chapter 5 for a discussion of health data collection.)
b. National Center for Chronic Disease Prevention and Health Promotion
The National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) conducts and supports research on chronic diseases and health promotion programs, and monitors population health through surveys, including the Behavioral Risk Factor Surveillance System (BRFSS), which has tracked health conditions and risk behaviors in the United States annually since 1984. (See chapter 5 for a discussion of the BRFSS and people with disabilities.)
NCCDPHP has provided funding for an important research undertaking for people with disabilities: the Rochester Prevention Research Center (RPRC) at the University of Rochester, which is developing a national center of excellence for health promotion and disease prevention research in people who are deaf or hard of hearing. The RPRC works to promote health and prevent disease in the deaf or hard-of-hearing population primarily through community-participatory research. Specific activities include identification and prioritization of the deaf or hard-of-hearing community's health needs, development of effective and inclusive interventions, accessible communication and dissemination of the center's findings, and evaluation of the center to ensure meaningful contributions to the health of local, state, national, and international deaf or hard-of-hearing populations.
c. Office of Disability and Health—National Center on Birth Defects and Developmental Disabilities
The National Center on Birth Defects and Developmental Disabilities (NCBDDD) promotes the health of babies, children, and adults. NCBDDD's activities include identifying the causes of and preventing birth defects and disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities. The Disability and Health Team, within the center's Division of Human Development and Disability, focuses on promoting the health of people with disabilities through projects and programs that build the capacity of organizations to improve health and prevent morbidity. In recent years, the team has moved away from focusing on disability prevention and toward promoting secondary illness and disease prevention for people with disabilities, consistent with the goals of "Healthy People 2010" and the Surgeon General's "Call to Action." Currently, the Disability and Health Team is funding 16 state projects aimed at integrating awareness of disability health disparities into public health programs and activities. Core activities of these projects include analyzing BRFSS data for their respective states, creating and implementing strategic plans, and establishing and maintaining an advisory committee. The Disability and Health Team has also recently undertaken eight research projects that include a major emphasis on health promotion and disease prevention for women with disabilities.
The following are examples of projects of CDC and the Office of Health and Disability.
- Promoting Health & Functioning in Persons with Serious Mental Illness (SMI)—a project funded by CDC and undertaken by Dartmouth College to evaluate a novel program that may offer a practical approach to improving health, independent functioning, and longevity in persons with SMI.
- Telehealth: Automated Phone Followup for People with Mobility Impairments—a project funded by CDC and undertaken by the Boston Medical Center to develop and evaluate an automated, telephone-based screening, referral, and educational behavioral intervention system with the long-term objective of promoting health by preventing secondary conditions and decreasing their severity among older patients with mobility impairments who are wheelchair users.
- A qualitative study to explore the barriers to breast cancer screening for women with physical disabilities. As a result of the study, CDC developed and tested the Right to Know Campaign—a family of health promotion materials (posters, MP3 recordings, flyers, ads, and a tip sheet) designed to increase awareness of breast cancer among women with physical disabilities and to encourage these women to be screened.
The Disability and Health Team also supports the American Association for Disability and Health, the National Resource Center on Spina Bifida housed within the Spina Bifida Association of America, and the National Center on Physical Activity and Disability (NCPAD), which is operated jointly by the University of Illinois at Chicago's Department of Disability and Human Development, the Rehabilitation Institute of Chicago, and the National Center on Accessibility at Indiana University. Established through a CDC award in 1999, the Indiana University center is a national clearing-house to gather, organize, and consolidate existing information; to synthesize resources on physical activity for people with disabilities; and to facilitate dissemination to consumers, practitioners, and disability and service organizations.
In addition to core programs, the team is responsible for nearly $18 million to support several congressionally mandated programs, including the Amputee Coalition of America, the Special Olympics, and the Christopher and Dana Reeve Paralysis Resource Center. The team has also hosted training opportunities for developing a cadre of public health professionals who will ultimately work in the field of disability and health. In addition, the team is working to integrate the needs of people with disabilities into emergency planning and preparedness activities to ensure that they will not be excluded from shelters and that they are included in evacuation planning and procedures.
d. National Center for Environmental Health
The National Center for Environmental Health (NCEH) is responsible for a national program to maintain and improve health and promote a healthy environment by preventing premature death and avoidable illness and disability caused by noninfectious, nonoccupational environmental and related factors. The center recognizes that health issues are related to land use, and therefore, a major initiative of the NCEH is designing and building healthy places. NCEH stipulates that health relates to land use and includes accessibility for people with disabilities and older persons as well as aspects of the community environment that influence residents' level of physical activity. NCEH has funded the University of Michigan at Ann Arbor to study the effects of the built environment and the progression of disability among older adults.
4. Substance Abuse and Mental Health Services Administration
This mission of the Substance Abuse and Mental Health Services Administration (SAMHSA) is to build resilience and facilitate recovery for people with or at risk for substance abuse and mental illness. SAMHSA envisions "A Life in the Community for Everyone." This vision is based on the premise that people of all ages who have, or are at risk for, mental or substance use disorders should have the opportunity for a fulfilling life that includes a job, an education, a home, and meaningful personal relationships with friends and family. The agency administers competitive and block grant programs, and undertakes data collection, evaluation, and technical assistance activities. With a fiscal year 2007 budget of nearly $3.3 billion, SAMHSA funds and administers grant programs and contracts that support state and community efforts to expand and enhance prevention and early intervention programs, and to improve the quality, availability, and range of substance abuse treatment, mental health, and recovery support services in local communities, where people can be served most effectively. Programs are carried out by the Center for Mental Health Services (CMHS), the Center for Substance Abuse Prevention (CSAP), the Center for Substance Abuse Treatment (CSAT), and the Office of Applied Studies.
a. Center for Mental Health Services
The Center for Mental Health Services (CMHS) applies scientifically established findings and practice-based knowledge in the prevention and treatment of mental disorders; improves access, reduces barriers, and promotes high-quality effective programs and services for people who have or are at risk for these disorders, and for their families and communities; and promotes an improved state of mental health in the nation, as well as the rehabilitation of people with mental disorders.
b. Center for Substance Abuse Prevention
The Center for Substance Abuse Prevention (CSAP) provides national leadership in the development of policies, programs, and services to prevent the onset of illegal drug, underage alcohol, and tobacco use; disseminates substance abuse prevention practices; and builds the capacity of states, communities, and other organizations to apply prevention knowledge effectively.
c. Center for Substance Abuse Treatment
The mission of the Center for Substance Abuse Treatment (CSAT) is to bring effective alcohol and drug treatment to every community. CSAT provides national leadership to expand the availability of effective treatment and recovery services for alcohol and drug problems; and to improve access, reduce barriers, and promote high-quality effective treatment and recovery services for people with alcohol and drug problems, abuse, or addiction, and for their families and communities.
d. Office of Applied Studies
The Office of Applied Studies (OAS) collects, analyzes, and disseminates national data on behavioral health practices and issues. OAS is responsible for the annual National Survey on Drug Use and Health, the Drug Abuse Warning Network, and the Drug and Alcohol Services Information System, among other studies.
OAS also provides access to the National Registry of Evidence-based Programs and Practices (NREPP), a searchable online registry of mental health and substance abuse interventions that have been rated by independent reviewers. The purpose of this registry is to help the public find approaches to preventing and treating mental and substance use disorders that have been scientifically tested and that can be readily disseminated to the field.
5. Agency for Healthcare Research and Quality
The Agency for Healthcare Research and Quality (AHRQ) is the health services research arm of HHS. The agency supports research in major areas of health care, including quality improvement and patient safety, outcomes and effectiveness of care, clinical practice and technology assessment, health care organization and delivery systems, primary care, including preventive services), and health care costs and sources of payment.
AHRQ conducts and supports health services research, both within the agency and in academic institutions, hospitals, physicians' offices, health care systems, and other settings across the country. The agency is also a major source of funding and technical assistance for health services research and research training at U.S. universities and other institutions.
a. Priority Populations
AHRQ is also charged with carrying out research, evaluations, and demonstration projects with respect to health care for "priority populations," including low-income groups, minority groups, women, children, the elderly and "individuals with special health care needs, including individuals with disabilities and individuals who need chronic care or end-of-life health care." The AHRQ Office for Priority Populations Research coordinates, supports, manages, and conducts health services research on these populations. AHRQ describes its disability-related research as follows:
AHRQ-supported research brings evidence on what works—and what does not work—in health care delivery to people impaired by disabling illness or injury. Findings from AHRQ research can help public policymakers, program administrators, and other health care leaders develop policies and programs to improve health services for people with disabilities as well as determine eligibility for benefits under Medicare, Social Security, and other publicly financed programs and private health plans.
b. National Healthcare Disparities Report
In 2003, AHRQ began publishing an annual "National Healthcare Disparities Report" (NHDR), describes the quality of and access to care for multiple subgroups across the United States; the NHDR is a source of information for tracking progress over time. The first report, released in 2003, included a chapter entitled "Disparities in Health and Health Care," which recognized that disability and chronic disease are not synonymous and that people with disabilities typically confront two generic problems in health care: access to care and coordination of care. The use of the word "access" in the context of this chapter refers to physical, cognitive, communication, or other barriers. In subsequent NHDRs, information about people with disabilities is included in a chapter entitled "Priority Populations" under the heading "Individuals with Special Health Care Needs," which includes people with disabilities, people who need chronic or end-of-life care, and children with special health care needs. The 2004 NHDR highlights children with special health care needs, while the 2005 and 2006 reports present data on quality and access for younger and elderly Medicare beneficiaries with disabilities, as well as for children with special health care needs.
In the 2007 NHDR, AHRQ broadened the definition of disability and focused on the impact on individuals with disabilities of delayed care; inappropriate medication use by older people; and exercise and weight management for obese adults with disabilities.
c. Related Research
The following are recent and current disability-related research topics supported by AHRQ.
- Use of risky or ineffective medicines by seniors with disabilities
- Depression among people with diabetes
- The relationship of age, ethnicity, and living arrangements on the use of assistive devices by people with mobility disabilities
- Increasing chronic disability care management programs in Medicaid managed care plans
- Health disparities experienced by women with disabilities
- The impact of lack of health care in rural areas for people with disabilities
- Ways to improve the health care experiences of people who are blind or have vision impairments
- Creating an evidence base for vision rehabilitation
- How health insurance status affects people with disabilities
- Translating and adapting the Consumer Assessment Healthcare Providers and Systems (CAHPS) survey to collect information in American Sign Language (ASL) from deaf people about their health care experiences
- Measuring the business case for disability care coordination from the perspective of Medicaid by showing that the additional expenses of paying for care coordination are offset in the form of reduced total program expenditures
AHRQ also oversees the Medical Expenditure Panel Survey (MEPS), a set of large-scale surveys of families and individuals, their medical providers, and employers across the United States. MEPS is the most complete source of data on the cost and use of health care and health insurance coverage. (See chapter 5for a discussion of MEPS.)
6. Office on Disability
The HHS Office on Disability was created in October 2002 in response to the New Freedom Initiative, which established seven areas of emphasis for people with disabilities, including community integration, education, employment, health, housing, technology, and transportation. The Office on Disability focuses its efforts on these seven domains. The Director of the Office reports to the Secretary of HHS and serves as an advisor on HHS activities related to disabilities.
The Office on Disability is charged with serving as the focal point within HHS for the implementation and coordination of policies, programs, and special initiatives related to disability, both within the department and with other Federal agencies. The office is also responsible for increasing interactions among programs within HHS and with Federal, state, community, and private sector partners, and for supporting initiatives that remove barriers that prevent people with disabilities from participating in their communities. Activity highlights for 2008 included the following:
- Collaboration with the Surgeon General to develop and publish a document concerning closing the gaps in services for infants and young children with hearing loss
- Management of the "I Can Do It; You Can Do It" program, which promotes physical fitness and healthy diets among children and youth with disabilities
- Promotion of the Surgeon General's "Call to Action To Improve the Health and Wellness of Persons with Disabilities" through management of four working groups that are increasing attention to disability in the media, entertainment industries, medical trade organizations, health care providers, and employers
- Distribution of the "Call to Action" at numerous conferences and meetings
- Ensuring that people with disabilities are included in the development of electronic and personal health records planning activities
- Ensuring that emergency preparedness plans include the needs of people with disabilities
To further implement the goals of the "Call to Action," the Office on Disability convened a meeting of leading experts in health care, education, and Government to address the need to include training programs in medical, nursing, and dental curriculums that are directly related to persons with disabilities and to forge an action plan to ensure that all health programs offer consistent health care access for people with disabilities. Participants identified actions for moving forward, including incorporating disability into core competencies using universal design; developing methods for electronic information exchange and dissemination; and identifying opportunities for accreditation support.
Through partnerships with the U.S. Department of Education, the Administration on Developmental Disabilities, the Social Security Administration, the Substance Abuse and Mental Health Services Administration, and the Georgetown University Center for Child and Human Development, the Office on Disability is working toward an integrated approach to address the needs of people with co-occurring disabilities.
7. Office of the Surgeon General
The Surgeon General serves as the nation's chief health educator by providing the public with scientific information on how to improve health and reduce the risk of illness and injury. The Surgeon General reports to the Assistant Secretary for Health, who is the principal advisor to the Secretary of HHS on public health and scientific issues. The Office of the Surgeon General oversees the operations of the 6,000-member Commissioned Corps of the U.S. Public Health Service.
The Surgeon General is charged with various duties, including protecting and advancing health by educating the public and advocating for effective disease prevention and health promotion programs and activities. He or she is also charged with providing leadership in promoting special health initiatives, such as tobacco- and HIV-prevention efforts, with other Government and non-Government entities, and elevating the quality of public health practice in the professional disciplines through the advancement of appropriate standards and research priorities. Public health priorities of the Office of the Surgeon General include disease prevention, limiting health disparities, public health preparedness, and improving health literacy.
Reports issued by the Surgeon General focus attention on important public health issues such as the adverse health consequences of smoking; the report on the smoking issue triggered nation-wide efforts to prevent tobacco use and generated major public health initiatives. The Surgeon General has produced several critical reports that focus attention on health and health care disparities experienced by people with disabilities, including people with intellectual and developmental disabilities, and that emphasized the centrality of health to the quality of life. Included are the 2005 "Call to Action," the 2002 report entitled "Closing the Gap: A National Blueprint To Improve the Health of Persons with Mental Retardation," "Report of the Surgeon General's Conference on Health Disparities and Mental Retardation," and "Oral Health in America: A Report of the Surgeon General," which underscores the many oral and systemic diseases and conditions that impair health in older adults and the role of oral health in the quality of life and life expectancy of individuals with disabilities. These reports describe the particular challenges to health and well-being faced by persons of all ages with disabilities and place their health among the public health issues that should be at the forefront of research, service delivery, financing, training and education, and health care policy. The reports also establish the principle that good health is necessary for people with disabilities to work, learn, and engage with their families and communities.
"Call to Action," "Closing the Gap," and "Oral Health in America" firmly establish that the health and wellness of people with disabilities is a matter of public health concern. Further, they call for better approaches to identifying, acquiring, and utilizing new knowledge, new technologies, and new systems of services that emphasize a team approach and partnerships with people with disabilities. These publications identify the need for "health care providers who see and treat the whole person, educators willing to teach about disability, a public that sees beyond the disability to the whole person, and a community that provides accessible health and wellness services for persons with disabilities." "Call to Action" specifically identifies challenges that must be overcome to realize the principle that, with good health, people with disabilities have the freedom to work, learn, and engage actively with their families and their communities. Challenges are present in all aspects of health care and service delivery for persons with disabilities. They include such concerns as an inadequately trained and educated health care and services workforce and a health care and health promotion service system that is limited in accessibility or availability to persons with disabilities.
8. "Healthy People 2010"
"Healthy People 2010" is the Federal Government's statement of national health objectives, designed to identify the most significant preventable threats to health, and to establish national goals for reducing these threats. This report is designed to increase the quality and years of healthy life, and to eliminate disparities in the burden of disease. People with disabilities are represented in 207 of the 467 objectives that span 21 of the 28 "Healthy People 2010" focus areas. However, when "Healthy People 2010" was implemented, data on people with disabilities were available for only 88 of the 207 objectives.
The statement's Focus Area 6, Disability and Secondary Conditions, contains 13 objectives to promote the health and well-being of children and adults with disabilities across their lifespan. It introduces the concept of "healthy people with disabilities." For the first time in national public health parlance, disability is considered in relation fitness and health, rather than solely as an outcome of illness or disease. The stated goal of Focus Area 6 is to "Promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities in the U.S. population." Within Focus Area 6, Objective 6-1 states that "Disability is a demographic descriptor rather than a health outcome" and that
[d] isability can be viewed as a universal phenomenon everyone experiences at some time. Disability also can be viewed as representing a minority of the population, in that people with disabilities may be less visible, undercounted, and underserved. As a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population. People with disabilities may experience lack of access to health services and medical care, and may be considered at increased risk for various conditions.
"Healthy People 2010" also contains 10 vision objectives. While most of these objectives are concerned with prevention and treatment of vision impairments, Focus Area 28, Objective 10, addresses the need for vision rehabilitation. This objective aims to "increase the use of vision rehabilitation services and adaptive devices by people with vision impairments."
The objectives for disability and secondary conditions seek to eliminate disparities between people with and without disabilities by addressing health disparities among specific populations of people with disabilities. "Healthy People 2010" undertook a midcourse review that revealed some preliminary information on the extent to which objectives are being met. For example, for Focus Area 6, the midcourse review provides new data comparing populations within the disability community that address both quality of life and health disparities. Disparities are documented between people who have disabilities and those who do not, as well as among subgroups based on education, income, gender, and ethnicity. Improvements are shown in several areas, including an increase in inclusion of people with disabilities in national and state surveillance, a reduction of the number of adults with disabilities living in congregate care facilities, and an increase in the number of children with disabilities included in regular education programs. However, according to the midcourse review, this improvement cannot be attributed to any particular programmatic intervention. Implementation and enforcement of Federal disability rights laws, improved public awareness of disability generally, and an increase in accessibility, including to public transportation, may be contributing factors.
9. National Institute on Disability and Rehabilitation Research
The National Institute on Disability and Rehabilitation Research (NIDRR), operating in concert with the Rehabilitation Services Administration (RSA) and the Office of Special Education Programs (OSEP), conducts research and related activities that foster full inclusion, social integration, employment, and independent living among individuals with disabilities. With a fiscal year 2007 budget of $106.7 million, NIDRR supports disability research, demonstration projects, and related activities. NIDRR undertakes core research in areas such as employment, health and function, technology for access and function, knowledge dissemination and utilization, independent living and community integration, and other related areas. Most of NIDRR's research related to health, health care, and health disparities for people with disabilities is conducted within the health and function core priority area.
NIDRR's 2005-2009 strategic plan spells out the agency's mission for that period regarding health and function. Recognizing that functional ability reflects the complex interaction between individuals and the environment in which they live, NIDRR supports research at both the individual and systems levels. Individual-level research focuses on development and testing of new interventions that improve functional and health outcomes for people with disabilities. At the systems level, NIDRR-supported research focuses on the organization and delivery of health care and medical rehabilitation services.
a. Health and Function
NIDRR's research focus for health and function emphasizes the challenges people with disabilities encounter in obtaining individual health care, services, and supports. Research topics include medical rehabilitation, health and wellness programs, service delivery, short- and long-term interventions, systems research, and new and emerging disabilities. NIDRR has specifically emphasized support for projects concerned with health and health care disparities among individuals with disabilities.
Recent past and current multiyear research grants specifically address health disparities and people with disabilities. For example, the Health Disparities Project, a 5-year initiative launched by the Oregon Health and Science University (OHSU) in 2008, will include review and synthesis of existing health and health care access information for people with disabilities. The initiative will use Medical Expenditure Survey data to analyze systemic, environmental, and individual factors that relate to health care access among people with certain disabilities, and to identify models of health outcomes. An earlier project undertaken by OHSU is identifying strategies to overcome barriers that impede access by people with disabilities to routine health care, such as exercise, nutrition, pain management, and complementary and alternative therapies that promote health and wellness. The same project is developing improved measurement tools to assess the health and well-being of people with disabilities regardless of functional ability. A third OHSU project is developing a group therapy intervention to address the specific needs of women with physical disabilities who experience depressive symptoms.
Additional projects relate to health, function, fitness, and independent living for individuals with disabilities. The following projects relate to prevention and health promotion.
- The University of Illinois, Chicago, has undertaken a 5-year project concerning access to recreational opportunities, physical fitness, and endurance of people with disabilities. The university's other projects include one that aims to reduce obesity and obesity-related secondary conditions among adolescents with disabilities.
- George Mason University has undertaken a 4-year project to develop and validate health service quality indicators for people with disabilities enrolled in managed Medicaid programs.
- Marquette University and partners undertook a 5-year research project to evaluate accessible medical instrumentation.
- Georgia Institute of Technology conducted research on the way wheeled mobility is conceptualized and understood.
- Northwestern University undertook a 5-year project to address the need to improve the delivery of health services for people with disabilities by evaluating the impact of Medicare's inpatient rehabilitation facilities prospective payment system and by identifying the impact of comorbidity on patients' classification and reimbursement.
NIDRR also enters into interagency agreements with various agencies, including HRSA, to promote certain aspects of health care delivery, and it supports substantial research in the area of traumatic brain injury, and burn and stroke treatment and recovery.
NIDRR-supported research has resulted in published articles on topics including the following:
- Recognizing and responding to the health disparities of people with disabilities
- Health and health care access for people with intellectual disabilities
- Access barriers to substance abuse treatment for persons with disabilities
- Translating policy principles into practice to improve health care access for adults with intellectual disabilities
- Understanding health outcomes for people with spinal cord injury
- Physical and social environmental factors that influence health and participation outcomes for chronically ill adults
b. Interagency Committee on Disability Research
The Director of NIDRR chairs the Interagency Committee on Disability Research (ICDR), which facilitates the exchange of information on disability and rehabilitation research activities among its member Federal agencies on topics including assistive technology and universal design; medical rehabilitation; data and statistics; employment; and community participation. The ICDR identifies emerging research areas; assesses gaps and duplications in existing research; and makes recommendations to strengthen the Federal research agenda.
10. National Institutes of Health
With its 27 institutes and centers, NIH is the primary Federal agency for conducting and supporting medical research. The National Center on Minority Health and Health Disparities (NCMHD) is the primary center in NIH that promotes minority health and that leads, coordinates, and supports activities intended to eliminate health disparities for racial and ethnic minority groups. NCMHD's mission does not include health disparities experienced by people with disabilities. (See chapter 3 for a discussion of the legislation that established NCMHD.) However, at least 12 other institutes and centers within NIH are engaged in various levels of research that promotes health and reduces health disparities for certain groups of people with disabilities. (Agencies are presented alphabetically.)
a. National Cancer Institute
The National Cancer Institute (NCI) is the Federal Government's primary agency for cancer research and training. NCI coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs concerning the cause, diagnosis, prevention, and treatment of cancer. It also supports education and training in fundamental sciences and clinical disciplines, and research projects on cancer control, a national network of cancer centers, and the collection and dissemination of information on cancer.
NCI oversees the Center to Reduce Cancer Health Disparities (CRCHD), which engages in collaborative research studies with NCI and other NIH institutes and centers to promote research and training in cancer health disparities and to identify new and innovative scientific opportunities to improve cancer outcomes. While health disparities for people with disabilities do not appear to be a focus of the CRCHD, there is modest indication that NCI and CRCHD recognize that the disability community experiences health disparities. For example, in his opening remarks during a 2007 Cancer Health Disparities Summit, NCI's Director, Dr. John Niederhuber, said, "Health disparities are about unacceptable inequalities in health outcomes that are experienced by certain groups. Racial and ethnic minorities, residents of rural areas, women, children, the elderly, and people with disabilities all experience disproportionate burdens of disease, including cancer." NCI has supported several research projects on health disparities that affect certain subpopulations of the disability community, including the following:
- A research grant awarded to the Susan G. Komen Breast Cancer Foundation for a pilot study to develop and test a method to identify women of screening age with physical and sensory disabilities, and a questionnaire to identify amenable-to-change barriers in screening mammography for these women
- A research grant on the effects of disability on the diagnosis of breast cancer; awarded to the University of Texas Medical Center, Galveston
- A program to expand the number of cancer education training videos available to people who are deaf in San Diego, California, and to test dissemination strategies designed to take the program nationwide, including developing national partnerships with deaf ministries; awarded to the University of California, San Diego.
- An immersion project to train 10 medical students from the University of California, San Diego, in basic American Sign Language (ASL), Deaf culture awareness, and medical terminology in ASL, with a focus on cancer-related issues; awarded to the University of California, San Diego
b. National Eye Institute
The National Eye Institute (NEI) conducts and supports research and helps prevent and treat eye diseases and other vision disorders. NEI supports vision research through research grants and training awards to universities, medical centers, and other institutions, and conducts laboratory and patient-oriented research. NEI is the lead Federal agency for the vision chapter in "Healthy People 2010," and it recognizes the importance of access to vision rehabilitation services for people who are blind or have vision impairments. NEI's 1999–2003 strategic plan includes a national plan for low-vision and blindness rehabilitation, with program goals such as developing devices, environmental modifications, and rehabilitation strategies to minimize the impact of vision impairment in everyday life and reduce societal limitations for individuals with vision impairments. The plan states
. . . NEI is working on a project to educate eye health care professionals about the issues of vision rehabilitation. The NEI is developing a pilot program to enhance referrals of individuals with low vision to vision rehabilitation services. The primary purpose of the program is to increase patient referrals from eye care professionals to qualified vision rehabilitation services. 
NEI's commitment to establishing sound scientific evidence about the effectiveness of vision rehabilitation is particularly important because of the high prevalence of vision impairments in the United States, as well as the role vision rehabilitation plays in supporting the health and independence of people who are blind or have vision impairments. Acting on this commitment, the Institute supported various projects including the following:
- University of Alabama at Birmingham—a project to lead randomized clinical trials on the effectiveness of low-vision rehabilitation services for adults with vision impairments who seek them. One goal of the project was to provide information that could assist the Centers for Medicare & Medicaid Services (CMS) in formulating policy on coverage of these services.
- University of Minnesota, Twin Cities—a project to develop a computer-based design tool in which environments could be simulated with sufficient accuracy to predict the visibility of key landmarks and obstacles, such as steps or benches, under differing lighting conditions. The long-term goal was to create tools to enable the design of safe environments for people with vision impairments.
c. National Human Genome Research Institute
The National Human Genome Research Institute (NHGRI) began as the National Center for Human Genome Research (NCHGR), which was established in 1989 to carry out the role of the National Institutes of Health (NIH) in the International Human Genome Project (HGP).
NHGRI has funded a 3-year project at the University of Illinois at Chicago designed to explore the areas in which medical genetic advising is, or is not, informed by the lived experience of persons with genetic or prenatally diagnosable disabilities.
d. National Institute on Aging
The National Institute on Aging (NIA) researches the biomedical, social, and behavioral aspects of the aging process; the prevention of age-related diseases; and the promotion of a better quality of life for older people. NIA funds research and training at universities, medical centers, and other institutions, and conducts basic and clinical intramural research. NIA recognizes that older adults experience health disparities and that research is needed to understand the causes of these disparities and how they relate to social, economic, and health system factors. While one of NIA's goals is to reduce the incidence of disease and disability among older people, the work of the agency also relates to health, health care, and health disparities experienced by people with disabilities generally because many older people have acquired various chronic, long-term hearing, vision, and mobility impairments and, therefore, are likely to experience disparities in secondary health conditions. NIA is exploring important interrelationships among socioeconomic status, race-ethnicity, and health, as well as biodemographic approaches to aging and health. Outcomes of these research endeavors may be generalizable to the broader disability community over time.
e. National Institute on Alcohol Abuse and Alcoholism
The National Institute on Alcohol Abuse and Alcoholism (NIAAA) conducts research focused on improving the treatment and prevention of alcoholism and alcohol problems to reduce health, social, and economic consequences that may include, for example, personal health costs, the cost of medical care and treatment, and loss of productivity. The institute's vision includes increasing the understanding of normal and abnormal biological functions and behavior relating to alcohol use, and improving the diagnosis, prevention, and treatment of alcohol use disorders. Enhancing quality health care is also a key aspect of the institute's vision. NIAAA apparently does not specifically investigate alcohol use among people with disabilities, but the institute does have an initiative related to alcohol use among people who are aging. This group will likely include a high percentage of individuals who have other limiting impairments. Further, overuse of alcohol can increase the probability of developing diabetes, heart disease, and other conditions that can lead to disability. Thus, NIAAA is included among the NIH institutes that engage in activities related to health and disability.
f. National Institute of Child Health and Human Development
The National Institute of Child Health and Human Development (NICHHD) conducts and supports research on all stages of human development, from preconception to adulthood, to better understand the health of children, adults, families, and communities. The institute has supported research projects such as the following:
- University of California, San Francisco—a project to study a diverse sample of families raising youth who are both medically fragile and developmentally disabled, to describe the challenges in the transition to adulthood and to discover how services, programs, and resources available through schools affect family planning and decision making for the transition, including the health care transition
- Oregon Health and Science University—a project to test the efficacy of a health promotion intervention for people with intellectual disabilities
g. National Institute of Dental and Craniofacial Research
The National Institute of Dental and Craniofacial Research (NIDCR) leads a national research program designed to understand, treat, and ultimately prevent infectious and inherited craniofacial-oral-dental diseases and disorders. NIDCR performs and supports basic and clinical research, conducts and funds research training and career development programs, coordinates and assists relevant research and research-related activities among other sectors of the research community, and promotes the transfer of knowledge. The institute has developed a strategic plan to eliminate oral, dental, and craniofacial health disparities; this plan is the foundation for addressing persistent national inequalities in oral health. NIDCR broadly defines "health disparities" and the factors with which they are associated.
The complex nature of American society is mirrored in the complex meaning of health disparities. We are interpreting the term to refer to the diminished health status of population subgroups defined by demographic factors such as age and socioeconomic status (SES), geography, disability status, and behavioral lifestyles. Health disparities associated with any one or more of these factors reflect the diversity of the U.S. population by gender and age, racial or ethnic identity, educational attainment, income (measured by money and other forms of wealth), location of residence (regional and metropolitan area), disability status, and sexual orientation.
NIDCR has developed and published a series of important booklets on providing dental care for people with developmental disabilities. A document entitled "An Introduction to Practical Oral Care for People with Developmental Disabilities" is available on the NIDCR Web site, and other documents in the series can be accessed or ordered there, including the following: "Practical Oral Care for People with Autism," "Practical Oral Care for People with Cerebral Palsy," "Practical Oral Care for People with Down Syndrome," and "Practical Oral Care for People with Mental Retardation. " The institute also has a caregiver's guide to everyday dental care for people with disabilities that can be accessed online, and it offers continuing education credit and certification for the completion of an examination concerning health challenges and strategies for practical oral health care for people with developmental disabilities. NIDCR also makes available online a health care provider's guide to wheelchair transfer and an extensive list of additional resources for providing oral care for people with developmental disabilities. 
In 2008, NIDCR launched a clinical research initiative to improve the oral health of special needs populations, which could include epidemiologic and behavioral studies and patient-oriented research. The institute has funded the University of California, San Francisco, to investigate oral health disparities in children with disabilities.
h. National Institute of Diabetes and Digestive and Kidney Diseases
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDKD) conducts and supports research on the diseases of internal medicine and related subspecialty fields, as well as many basic science disciplines. NIDDKD has funded the University of Montana to undertake several projects intended to test the reliability and validity of various methods to assess the dietary intake of adults with significant cognitive impairments living in the community.
i. National Institute on Deafness and Other Communication Disorders
The National Institute on Deafness and Other Communication Disorders (NIDOCD) conducts and supports biomedical and behavioral research and research training about the processes of hearing, balance, smell, taste, voice, speech, and language. NIDOCD has funded a project at the Virginia Commonwealth University, which identifies, analyzes, and addresses the ethical and social implications from advances due to the Human Genome Project.
j. National Institute of Environmental Health Sciences
The National Institute of Environmental Health Sciences (NIEHS) undertakes activities to reduce illness and disability by understanding how the environment influences the development and progression of human disease. NIEHS emphasizes basic science, disease-oriented research, global environmental health, and multidisciplinary training for researchers. NIEHS also makes available information on major health topics that are related to or affected by environmental exposures, uses research outcomes to influence public health interventions and policies, and helps health professionals diagnose and treat people with conditions and diseases influenced by environmental agents. The institute supports research centers that address health issues such as breast cancer and the environment, children's environmental health, population health, and health disparities.
NIEHS has funded a longitudinal study using community-based participatory research to improve access to the built environment for persons with mobility disabilities. The project involves partnerships between the University of Illinois at Chicago, the Illinois Americans with Disabilities Act Project, the Chicago-based American Planning Association, and the Urban Transportation Planning Center at the University of Illinois at Chicago. The study involves the development of a health empowerment zone that includes training initiatives with fitness and recreation facilities, grocery stores, the regional transportation authority, and local planning and zoning boards. Interventions include disability awareness and accessibility training for fitness facility, grocery store, and mass transit staff; recommending barrier removal options to store and facility owners; recommending strategies for improving community accessibility; and a health marketing incentive campaign. The primary outcome is a model program for improving access to the built environment, resulting in improved health and reduction of secondary conditions among people with mobility disabilities.
k. National Institute of Mental Health
The National Institute of Mental Health (NIMH) is the lead Federal agency for research on the mind, brain, and related behavior. NIMH's strategic plan calls for deepening and expanding personalized intervention research, specifically calling for a comprehensive health care perspective through studies that take into account illnesses that co-occur with mental disorders (for example, heart disease and substance abuse) or that address the effects of taking multiple prescribed medications. NIMH has funded Johns Hopkins University and partners to test the effectiveness of an intervention to help people with serious mental illness who are overweight or obese to lose weight and keep it off. The institute has also funded the Technical Assistance Institute for Intellectual Disabilities in Dexter, Oregon, to develop an interactive computer-based CD-ROM HIV/AIDS prevention curriculum for adult women with mild intellectual disabilities.
l. National Institute of Nursing Research
The National Institute of Nursing Research (NINR) supports clinical and basic research to establish a scientific basis for the care of individuals across their lifespan. Research focuses on health promotion and disease prevention, quality of life, health disparities, and end-of-life care.
NINR supports research that will, among other things, "elucidate mechanisms underlying disparities and design interventions to eliminate them, with particular attention to issues of geography—-rural and remote settings—minority status, underserved populations, and persons whose chronic or temporary disabilities limit their access to care. " The institute recently awarded a grant to the University of Texas at Austin to examine how white and Hispanic women between the ages of 55 and 75 developed mobility impairments, and to study the impact of their disabilities on their lives. The goal of the research is to help prepare the health care system to address the age-related issues faced by people with disabilities and to understand the reasons for health disparities within the study group.
11. Allied Initiatives That Promote Health, Health Care, and Wellness for People with Disabilities
a. Institute of Medicine
The Institute of Medicine (IOM), established in 1970 under the charter of the National Academy of Sciences, provides independent, objective, evidence-based advice to policy makers, health professionals, the private sector, and the public. A nonprofit organization, IOM works outside the framework of Government to ensure scientifically informed analysis and independent guidance.
The overarching critique of the health care system that emanated from the IOM's 1996 Quality Initiative bears directly on the health and health care experiences of people with disabilities. The initiative, which aimed to assess and improve the quality of health care provided in the United States, documented the depth and breadth of problems in the system. In its first phase, it reported that "the burden of harm conveyed by the collective impact of all of our health care quality problems is staggering. " It defined the scope and nature of the problem as one of overuse, misuse, and underuse of health care services. In the second phase of the initiative, IOM set forth a vision for the way in which the health care system and related public policy must undergo a radical transformation to close the chasm between high-quality care and the care that is generally provided in practice. Reports released during this phase, including "To Err Is Human: Building a Safer Health System" in 1999 and "Crossing the Quality Chasm: A New Health System for the 21st Century" in 2001, "stressed that reform around the margins is inadequate to address system ills."
In response, IOM set forth six goals for improvement that are widely accepted by the health care community and that have specific resonance for people with disabilities.
- Safety—avoiding injuries to patients from care that is intended to help them
- Effectiveness—providing services based on scientific knowledge to all who could benefit and refraining from providing services to those not likely to benefit
- Patient-centered care—providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions
- Timeliness—reducing waits and sometimes harmful delays for those who receive and those who give care
- Efficiency—avoiding waste, including waste of equipment, supplies, ideas, and energy
- Equitable care—providing care that does not vary in quality because of personal characteristics such as geographical location or socioeconomic status
IOM has published other important reports that relate to health and health care for people with disabilities, including "Disability in America: Toward a National Agenda for Prevention" (1991); "Enabling America: Assessing the Role of Rehabilitation Science and Engineering" (1997); "Improving the Quality of Long-Term Care" (2000); "The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs" (2002); "Workshop on Disability in America—An Update" (2005); "A New Look—Summary and Background Papers" (2006); and "The Future of Disability in America" (2007). In "The Future of Disability in America," IOM firmly establishes disability as a demographic indicator rather than just the outcome of disease processes; this is a sea change in how the agency understands the relationship of disability to health.
IOM has also devoted significant resources to investigating health disparities among racial and ethnic minorities, poor people, and other disadvantaged groups in the United States. In a 2006 report, "Examining the Health Disparities Research Plan of the National Institutes of Health: Unfinished Business," IOM examined the extent to which NIH has achieved a primary goal of the Minority Health and Health Disparities Research and Education Act of 2000 (P.L. 106-525)—-"to ensure that NIH health disparities research is conducted as an integrated and inclusive field of study, rather than as an aggregate of independent research activities occurring in separate research domains. " The report assesses how well the "NIH Strategic Plan and Budget To Reduce and Ultimately Eliminate Health Disparities" provides necessary guidance and recommends ways to improve oversight and coordination of these research efforts. IOM reports:
In Examining the Health Disparities Research Plan of the National Institutes of Health: Unfinished Business, the Institute of Medicine assesses NIH's response to the 2000 law, focusing on the development and implementation of the Strategic Plan across NIH Institutes and Centers. The report examines the Strategic Plan for fiscal years 2002–2006 and the Plan for 2004–2008. Twenty-seven Institutes and Centers (ICs), along with two NIH Offices, developed individual plans as part of the 2002–2006 NIH-wide Strategic Plan. These units are conducting and planning valuable health disparities research. At the same time, the impact of this work is being mitigated by a lack of coordination and limited strategic planning. In short, when it comes to addressing health disparities and fulfilling the promise of the 2000 law, NIH's business is unfinished.
While the Minority Health and Health Disparities Research and Education Act aims primarily to address health disparities among racial and ethnic minorities-and indeed that is the interpretation of the act by most NIH institutes, centers, and offices-IOM makes the following recommendation in response to NIH's implementation plan.
National Center on Minority Health and Health Disparities [NCMHD] should consider the designation of additional health disparity groups based on an informed process and developed criteria. It should promote development of, and access to, a registry of diseases and conditions for which disparities exist with regard to race, ethnicity, socioeconomic status, geographic locale, and other designated health disparity populations. 
By recommending that NCMHD consider designating additional health disparity groups for study, IOM recognizes that health disparities affect other groups in addition to racial and ethnic minorities, and makes the case for including research on health disparities experienced by people with disabilities.
12. Examples of Federal Agency Leadership in Identifying Health Disparities Research Needs for People with Disabilities
Against this complex backdrop, some interagency collaboration holds promise for increasing Federal agency attention to health disparities research for people with disabilities. For example, CDC produced a 2006 report entitled "Advancing the Nation's Health: A Guide to Public Health Research Needs, 2006–2015," which identifies research areas that should be addressed during the next decade by CDC and its partners, including a chapter on health disparities experienced by people with disabilities. The Federal Collaboration on Health Disparities Research (FCHDR), a collaboration of Federal agencies working to find solutions to eliminate health disparities through research, began operations in 2006 to explore, coordinate, and support innovative health disparities research and identify priorities for cross-agency collaboration. The Interagency Committee on Disability Research (ICDR) co-leads the FCHDR. The ICDR, led by the National Institute on Disability Research Rehabilitation, is charged with promoting coordination and cooperation among Federal departments and agencies conducting rehabilitation research programs.
A number of agencies have undertaken important and even groundbreaking research, which underscores the need for further investigation into the reasons why people with disabilities experience health and health care disparities, problems accessing health care, and health inequalities, and why people with disabilities participate less than others in prevention programs.
C. A Summary of Key Federal Health Disparities Initiatives for People with Disabilities
A 2006 ICDR study identified 119 Federal research projects or programs dealing with health disparities. In nearly all the projects and programs, the concept of people with disabilities as a group was either absent or unstated. Further, the leading Federal center on health disparities research–the National Center on Minority Health and Health Disparities–focuses primarily on health disparities within racial and ethnic minority populations, and only to a lesser extent on the other demographic groups. Thus far, people with disabilities have not been included in the work of the NCMHD.
While research is indeed quite limited on health disparities for people with disabilities, several Federal agencies have supported such research and related initiatives, including CDC, the Agency for Healthcare Research and Quality (AHRQ), the National Institute on Disability Rehabilitation Research (NIDRR), and the National Institute of Dental and Craniofacial Research (NIDCR). The National Institute of Mental Health (NIMH) and the National Institute on Nursing Research (NINR) also have undertaken several projects. For example, CDC's National Center for Chronic Disease Prevention and Health Promotion (NCCDHP) has supported the Rochester Prevention Research Center (RPRC) at the University of Rochester, which is developing a national center of excellence for health promotion and disease prevention research in people who are deaf or hard of hearing. The Disability and Health Team at the National Center on Birth Defects and Developmental Disabilities (NCBDDD) has asserted significant leadership by funding programs in 16 states to increase recognition within the public health community of health disparities experienced by people with disabilities. NCBDDD team also has undertaken eight research projects with a major emphasis on health promotion and disease prevention for women with disabilities. In addition, the team supports the National Center on Physical Activity and Disability (NCPAD) at the University of Illinois, Chicago, which serves as a national clearinghouse on physical activity for people with disabilities.
AHRQ carries out research under its "priority populations" program, which includes people with disabilities and individuals with special health care needs. The agency produces the "National Healthcare Disparities Report," which includes a section on people with disabilities. Some examples of recent AHRQ health and health care disparities research include health disparities experienced by women with disabilities, depression among people with diabetes, ways to improve the health care experiences of people who are blind or have vision impairments, and translating and adapting the Consumer Assessment of Healthcare Providers and Systems (CAHPS) ambulatory care survey to collect information in American Sign Language (ASL) about the health care experiences of people who are deaf.
In recent years, NIDRR has conducted substantial research related to health, health care, and health disparities for people with disabilities within its health and function core priority area. For example, the Health Disparities Project, a 5-year initiative launched by the Oregon Health and Science University (OHSU) in 2008, will review and synthesize health and health care access information for people with disabilities and will use NCBDDD Medical Expenditure Panel Survey (MEPS) data to analyze systemic, environmental, and individual factors that relate to health care access among people with certain disabilities and to determine models of health outcomes. An earlier project undertaken by OHSU is identifying strategies to overcome barriers that impede access by people with disabilities to routine health care, such as exercise, nutrition, pain management, and complementary and alternative therapies that promote health and wellness. The same project is developing improved measurement tools to assess the health and well-being of people with disabilities regardless of functional ability. A third OHSU project is developing a group therapy intervention to address the specific needs of women with physical disabilities who experience symptoms of depression.
Several NIH institutes and centers include people with disabilities as a unique disparity population and undertake related research. Specifically, the National Institute of Dental and Craniofacial Research (NIDCR) broadly defines health disparities to include disability status and has developed and published a series of booklets on providing dental care for people with developmental disabilities. In 2008, NIDCR launched a clinical research initiative to improve the oral health of special needs populations, and the institute has funded the University of California, San Francisco, to investigate oral health disparities in children with disabilities.
The National Institute of Nursing Research (NINR), which supports clinical and basic research, focuses on health promotion, disease prevention, and health disparities, and identifies people with disabilities as a health disparity population. In 2008, NINR awarded a grant to the University of Texas at Austin to examine how white and Hispanic women between the ages of 55 and 75 developed mobility impairments and the impact of their disabilities on their lives. The goal of the research is to help prepare the health care system to address the age-related issues faced by people with disabilities and to understand the reasons for health disparities within the study group.
D. Summary of Recent and Current Federal Efforts in Health Promotion and Disease Prevention for Women with Disabilities, People Who Are Blind or Have Vision Impairments, People Who Are Deaf or Hard of Hearing, and People with Intellectual and Developmental Disabilities
1. Women with Disabilities
AHRQ, CDC, NIDRR, the National Cancer Institute (NCI), and the National Institute of Mental Health (NIMH) have undertaken or supported recent research related to health disparities experienced by women with disabilities. CDC has undertaken a qualitative study to explore the barriers to breast cancer screening for women with disabilities and has developed and is testing the Right to Know campaign. NIDRR has supported research to develop group therapy interventions for women with physical disabilities who experience symptoms of depression. NCI supported research for a pilot study to develop and test methods of identifying women of screening age with physical and sensory disabilities, as well as a questionnaire to identify barriers in screening mammography for these women. NCI also funded a study on the effects of disability on the diagnosis of breast cancer. NIMH has funded HIV/AIDS prevention curriculums for women with intellectual disabilities.
2. People Who Are Blind or Have Vision Impairments
AHRQ has supported research on methods to improve the health care experiences of people who are blind or have vision impairments and on creating an evidence base for vision rehabilitation. The National Eye Institute (NEI) supported a randomized clinical trial on the effectiveness of low vision rehabilitation services for adults with vision impairments. One goal of the project was to provide information that could assist the Centers for Medicare & Medicaid Services (CMS) in formulating policy on coverage of these services.
3. People Who Are Deaf or Hard of Hearing
AHRQ, NCI, and CDC have supported research projects related to people who are deaf or hard of hearing. AHRQ has supported research on translating and adapting the Consumer Assessment of Healthcare Providers and Systems (CAHPS) ambulatory care survey to collect information in ASL about health care experiences from people who are deaf. NCI has funded a program to expand the number of cancer education training videos available to the Deaf community in San Diego, California, and an immersion project to train 10 medical students from the University of California, San Diego, in basic ASL, Deaf culture awareness, and medical terminology in ASL, with a focus on cancer-related issues. CDC has provided funding for the Rochester Prevention Research Center (RPRC) at the University of Rochester, which is developing a national center of excellence for health promotion and disease prevention research in persons who are deaf or hard of hearing.
4. People with Intellectual and Developmental Disabilities
In addition to programs of the Administration for Children and Families and the Health Resources and Services Administration (HRSA)–University Centers for Excellence in Developmental Disabilities (UCEDDs) and Leadership Education in Neurodevelopmental Disabilities (LEND)–the following Federal initiatives also promote health for people with intellectual and developmental disabilities. The National Institute of Mental and Craniofacial Research (NIDCR) has identified people with disabilities as a disparities population, has developed and published a series of important booklets on providing dental care for people with developmental disabilities, and has funded an oral health disparities research project at the University of California, San Francisco. The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDKD) has funded projects intended to test the reliability and validity of various methods to assess the dietary intake of adults with significant cognitive impairments living in the community. The National Institute of Child Health and Human Development (NICHHD) has supported the University of California, San Francisco, in its exploration of transition in a diverse sample of families raising youth who are both medically fragile and developmentally disabled. The research investigates how services, programs, and resources available through schools affect family planning and decision making. NICHHD has also supported Oregon Health and Science University to test the efficacy of a health promotion intervention for people with intellectual disabilities.
5. Effectiveness of Federal Efforts at Health Promotion and Disease Prevention for People with Disabilities
Although it is difficult to determine with any certainty the effectiveness of Federal efforts at disease prevention and health promotion for people with disabilities, particularly in terms of reduced health disparities or improved health status, the midcourse review for "Healthy People 2010" reported some related progress. At that time, new data had become available on several key indicators since "Healthy People 2010" was launched in 2000. People with disabilities are currently represented in 207 of the 467 objectives that span 21 of 28 "Healthy People 2010" focus areas. However, when "Healthy People 2010" was implemented, data on people with disabilities were available for only 88 of those 207 objectives. "Healthy People 2010" undertook a midcourse review that revealed some preliminary information on the extent to which objectives are being met. For example, in Focus Area 6, "Promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities in the US population," the midcourse review provides new data comparing populations within the disability community that address both quality of life and health disparities. Disparities are documented between people who have disabilities and those who do not, as well as among subgroups based on education, income, gender, and ethnicity. Improvements are shown in several areas, including an increase in inclusion of people with disabilities in national and state surveillance, a reduction of the number of adults with disabilities living in congregate care facilities, and an increase in the number of children with disabilities included in regular education programs. However, according to the midcourse review, the explanation for this improvement cannot be attributed to any particular programmatic intervention. The review suggests that implementation and enforcement of Federal disability rights laws, improved public awareness of disability, and increased accessibility, including public transportation, may be contributing factors.
While data may be limited on the effectiveness of the Federal effort at health promotion and disease prevention for people with disabilities, it would be important not to overlook other influences that have effectively increased attention to these issues in recent years. In addition to the redefinition of disability that appears in "Healthy People 2010," reports issued by the Surgeon General–including "Closing the Gap" and "Call to Action"–as well as the 2007 IOM report "The Future of Disability in America," have helped to sound a clarion call for attention to disability status as a bona fide demographic indicator and on the specific health and health care needs of people with disabilities
E. Conclusion and Recommendations
The extensive network of Federal programs that provide health care and prevention services to people with disabilities (e.g., Medicare, Medicaid, SCHIP, Title V) serves as a critically important safety net for many, including children and adults with disabilities. Some other HHS agencies and programs, such as MCHD's LEND program, have established unique health delivery models for certain people with disabilities. However, health disparities research has been limited.
The Federal biomedical research effort has historic roots in a philosophy of disability and disease prevention, and most current biomedical research still aims to achieve these goals. However, a recent shift has taken place that acknowledges the fact that some people living with disabilities experience poorer health than the general population and that research is required to understand the causes of these health disparities. While this shift is in evidence in Focus Area 6 of "Healthy People 2010" and in seminal reports by the Surgeon General and the IOM, people with disabilities are still largely excluded from the major Federal health disparities research initiatives. As a result, there has been limited investigation that illuminates the reasons for health disparities in this population. Moreover, almost no resources have been devoted to exploring the extent to which barriers in the built environment and the lack of accommodation in health care delivery settings (e.g., sign language interpreters, accessible examination equipment, additional time for examinations, and consultations for complex health matters) contributes to health disparities experienced by people with disabilities.
Against this backdrop, a few Federal agencies have supported and undertaken groundbreaking and innovative research and projects aimed at understanding the causes of health disparities among people with disabilities. These projects promote health and wellness within specific populations, and acknowledge and explore the role that environmental factors play in health and health outcomes for people with disabilities. While it is too soon for these programs to report improved health outcomes for people with disabilities, they are an important, although modest, beginning. Further, several Federal interagency collaborations hold some promise for increasing the visibility of health issues for people with disabilities in future Federal research initiatives, provided they receive adequate funding.
Congress should amend the Minority Health and Health Disparities Research and Education Act to broaden the definition of "health disparity population" found in 42 U.S.C. § 287c-31(d) to encompass "populations for which there is a significant disparity in the quality, outcomes, cost, or use of health care services or access to or satisfaction with such services as compared to the general population," as specified in 42 U.S.C. § 299a-1(d). This will enable people with disabilities to be included in the health and health care disparities research, program development, professional training, health promotion, and clinical interventions conducted and supported by the National Center on Minority Health and Health Disparities, as well as other Federal agencies that are currently engaged in health disparities research and activities on behalf of racial and ethnic minorities and other geographic and population groups.
Congress should create and fund an Office of Disability and Health in the Office of the Director at the Centers for Disease Control and Prevention to mandate and oversee integration of disability issues into all CDC programs.
Congress should increase funding for the Interagency Committee on Disability Research of the National Institute on Disability and Rehabilitation Research in order to (1) vest it with sufficient resources and authority to fulfill its mandated research coordination role and (2) expand its role to include collaboration with other agencies, including Centers for Disease Control and Prevention (CDC), Agency for Healthcare Research and Quality (AHRQ), and the Department of Health and Human Services (HHS) Office on Disability, to identify research areas related to health, health care, and health disparities that lend themselves to interagency collaboration.
Federal agencies concerned with disability and health—including the Department of Health and Human Services (HHS), the Agency for Healthcare Research and Quality (AHRQ), the Centers for Disease Control and Prevention (CDC), the National Institute for Disability and Rehabilitation Research (NIDRR), and the Access Board—should develop mechanisms to undertake research that investigates the economic and systemic implications, as well as the impact of barriers to health care access, on people with disabilities, and the potential for enhanced efficiency and cost savings through improved access.
The Health Resources and Services Administration (HRSA) should designate people with disabilities or subgroups of the population as medically underserved populations. Such a designation will open opportunities for physicians, physician assistants, and dentists who choose to provide health care services for a significant number of patients with disabilities in their practices to apply for Federal student loan forgiveness.
The Institute of Medicine (IOM) of the National Academies of Science should include the topic of health disparities experienced by people with disabilities in its workshops and roundtables on health disparities. IOM should expand on recommendations presented in its 2006 report critiquing the National Institutes of Health (NIH) interagency disparity activities to include a recommendation that disability health disparities be acknowledged as a national problem. The IOM should also urge the development programs and strategies to reduce health disparities for people with disabilities.
The U.S. Surgeon General should lead an effort with other Federal agencies concerned with health care quality for people with disabilities—including the Department of Health and Human Services (HHS) Office of Disability, the Centers for Medicare & Medicaid Services (CMS), the National Institute on Disability and Rehabilitation Research (NIDRR), the Agency for Healthcare Research and Quality (AHRQ), the Access Board, and the Administration for Children and Families (ACF)—in a joint project that will establish principles of universal design for health care facilities and programs. Goals and objectives should be established and key stakeholder actions identified. Drawing on the well-established principles of universal design for the built environment, this collaboration should bring together Federal agency experts, disability and health policy researchers, leading disability and health practitioners (e.g., physicians who specialize in caring for women with disabilities, people who are deaf or hard of hearing, and people with intellectual and developmental disabilities, as well as vision rehabilitation experts), and people with disabilities to participate in the process. The Surgeon General should publish a report of findings that builds on previous publications, such as "Call to Action To Improve the Health and Wellness of Persons with Disabilities," "Closing the Gap: A National Blueprint To Improve the Health of Persons with Mental Retardation," and "Report of the Surgeon General's Conference on Health Disparities and Mental Retardation."