National Council on Disability Calls for Health Care Reform for People with Disabilities

Sept. 30, 2009

WASHINGTON—The National Council on Disability (NCD) today released a report entitled The Current State of Health Care for People with Disabilities, calling for immediate health care reform for people with disabilities.

According to NCD Chairperson John R. Vaughn, “NCD undertook this study in 2007 to focus the nation’s attention on the health care disparities experienced by people with disabilities, and to provide information and recommendations that can help to eliminate health care inequities for people with disabilities.”

The report provides a road map for eliminating the pervasive barriers to health care for people with disabilities, which will improve the quality of life, productivity, and well-being of greater numbers of Americans as the population ages.

Some of the recommendations include:

• 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). 
• Congress should establish a technical assistance system through which states, health plans, clinics, hospitals, diagnostic and treatment centers, individual medical practitioners, equipment manufacturers, people with disabilities, and others can easily obtain centralized information on universal standards of care and related practical resources for ensuring full access to culturally competent health care services for people with disabilities.
• The U.S. Department of Justice (DOJ) must step up monitoring and enforcement of the 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.
• 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 pre-existing condition limitations.

According to NCD Health Care Committee Co-Chair Anne M. Rader, “People with disabilities bear a disproportionate burden of poor health compared with the general population and use preventive services at a lower rate than people who do not have disabilities.”

For many, health care in the United States is not always available or affordable, and gaps in coverage can present insurmountable obstacles to obtaining appropriate care and maintaining good health. Lack of health care provider education and disability cultural awareness and competency also creates significant barriers for people with disabilities when they try to access care.

The root causes of these longstanding health and health care inequities involve multiple, complex factors that are embedded in the historical evolution of the nation’s health care structure, and the parallel research and public health emphasis on disability prevention and cure. One especially serious outcome of this evolutionary process is a highly fragmented health care delivery system, which is unable to reconcile the competing interests of cost containment and patient-centered care, which is an important tool for achieving culturally competent care for people with disabilities.

According to NCD Health Care Committee Co-Chair Victoria Ray Carlson, “Immediate action must be taken where existing research reveals the clear need for such strategies as enhanced health care provider education, greater clinical research, enhanced payment systems, and the removal of policy and procedural barriers and other physical barriers to receiving quality health care services.”

There is no simple solution to the complex and entrenched problems people with disabilities experience when they seek health care. Key elements of any move toward reform must include action by Congress, Federal agencies that have a role in health care, professional medical associations, organizations of medical educators, accreditation organizations, the public health community, and the disability community.