December 7, 2021
Eliseo J. Pérez-Stable, M.D., Director
National Institute on Minority Health and Health Disparities
National Institutes of Health
6707 Democracy Boulevard, Suite 800
Bethesda, MD 20892-5465
David Meyers, M.D., Director
Agency for Healthcare Research and Quality
5600 Fishers Lane
Rockville, MD 20857
RE: Meeting Request - Designation of People with Disabilities as a Health Disparity Population
Dear Dr. Perez-Stáble and Dr. Meyers :
The National Council on Disability (NCD) is an independent, nonpartisan federal agency charged with providing advice to the President, Congress and federal agencies on matters affecting the lives of people with disabilities. As part of our statutory mandate, NCD is required to “review and evaluate on a continuing basis - policies, programs, practices, and procedures concerning individuals with disabilities conducted or assisted by Federal departments and agencies…in order to assess the effectiveness of such policies, programs, practices, procedures…in meeting the needs of individuals with disabilities.” More specifically, NCD must “review and evaluate on a continuing basis new and emerging disability policy issues affecting individuals with disabilities at the Federal, State, and local levels,…including access to health care.”
I write on behalf of NCD to provide you with information in support of the designation of people with disabilities as a “health disparity population” as the National Institute on Minority Health and Health Disparities (the Institute) is authorized to do under 42 U.S.C. Section 285t(d)(1), which provides:
A population is a health disparity population if, as determined by the Director of the Institute after consultation with the Director of the Agency for Healthcare Research and Quality, 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.
While the Institute is required to give “priority consideration to determining whether minority groups qualify as health disparity populations,” the designation is available to any population determined to have significant health disparities.
This designation is necessary and appropriate to improve both research and equitable healthcare for people with disabilities. It would also further the goal of Executive Order 13985, which requires the Federal government to address barriers to equity for underserved and marginalized groups, including people with disabilities.
Background and Supporting Information
For a number of years, NCD has embarked on an appraisal of healthcare access, treatment, and outcomes for patients with disabilities. In 2009, NCD’s comprehensive report, The Current State of Health Care for People with Disabilities, concluded that the then 54 million people in the U.S. with disabilities experienced both health disparities and specific problems in gaining access to appropriate healthcare. NCD found that people with disabilities tended to be in poorer health and used health care at a significantly higher rate than people who did not have disabilities. They also experienced a higher prevalence of secondary conditions and used preventive health services, such as disease screenings, at a lower rate than their non-disabled peers. They were also affected disproportionately by barriers to receiving appropriate healthcare. These barriers included healthcare provider stereotypes about disability, lack of appropriate provider training, lack of accessible medical facilities and accessible examination equipment, such as exam tables and weight scales, and a lack of sign language interpreters and individualized accommodations.
NCD also found that:
- Dissonance was 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, defined disability as a demographic characteristic.
- Much of the Federal research effort remained 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 experienced significant health disparities compared with people who did not have disabilities, yet they were 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 (now the Institute) and other centers and institutes of NIH.
Unlike the limited literature available documenting the health disparities affecting persons with disabilities when NCD published this report in 2009, there is now a well-developed body of studies and reports that document the continuing prevalence of health disparities between the now over 64 million people with disabilities and their nondisabled counterparts. For example:
- A November 2020 paper published in the Journal of General Internal Medicine, Perspectives of Patients with Pre-existing Mobility Disability and the Process of Diagnosing Their Cancer, highlighted that cancer prevalence is higher among people with mobility disabilities – the most common disability among adult Americans – compared with the general population, and examined the role of inaccessible medical diagnostic equipment, attitudes of clinical staff about accommodating disability, providers’ dismissal of signs and symptoms as emotional responses to chronic health conditions, and misattribution of cancer signs and symptoms to underlying disability as significant contributors to the lower cancer screening rates among people with mobility disabilities.
- A 2019 report published in Inclusion, a peer-reviewed journal of the American Association on Intellectual and Developmental Disabilities, finding that people with disabilities were more likely than their nondisabled counterparts to have diabetes (16.3% versus 7.2%); heart disease (11.5% versus 3.8%); and to be obese (30.2% versus 26.2%). It also found that as between persons with intellectual and developmental disabilities (IDD), including persons with autism spectrum disorder (ASD), and their counterparts with other disabilities, persons with persons with IDD and ASD were significantly more likely to report having additional co-occurring disabilities including mental illness (30.1% of those with IDD and or ASD); chronic illness (30%); neurological condition (22%); physical disability (11.9%); and sensory disability (5.9%).
- A 2019 paper published in the American Journal of Public Health explored the effect of the Affordable Care Act (ACA) on disparities in access to health care based on disability status, as well as age, income, race, and ethnicity found that over the period when the ACA was implemented concluded that the ACA improved overall access to health care and reduced some disparities, but substantial disparities persist. Disability status remains associated with much greater risk of delayed or forgone care, and mental health disability is associated with greater likelihood of uninsurance.
- An April 2018 paper published by the National Academies of Sciences, Engineering, Medicine, Compounded Disparities: Health Equity at the Intersection of Disability, Race, and Ethnicity, highlights that people with disabilities have much poorer preventable health outcomes. Specifically, obesity rates are 58% and 38% higher among adults and youth with disabilities than their nondisabled peers; the annual number of new cases of diabetes is almost three times as high among adults with disabilities relative to adults without disabilities (19.1 per 1,000 vs 6.8 per 1,000); disability status is a high risk factor for early onset cardiovascular disease (rates of 12% vs 3.4% among 18 to 44 year olds with and without disabilities); adults with disabilities are much more likely to experience cardiovascular disease during young adulthood as well as older years.
- A 2017 study published in the Disability and Health Journal explored the disparity in maternity care access and quality experienced by women with disabilities from the healthcare practitioners' perspective. The findings identified, clinical-practice limitations, like the absence of accessible office equipment, e.g., examination tables, among the barriers contributing to maternity care disparity.
- A 2017 study published in the Disability and Health Journal described healthcare utilization among wheelchair users and characterized barriers encountered when attempting to obtain access to health care. 432 wheelchair users responded to the survey. Nearly all respondents (97.2%) had a primary care appointment within the past year and most encountered physical barriers when accessing care (73.8% primary, 68.5% specialty). Most participants remained clothed for their primary care evaluation (76.1%) and were examined seated in their wheelchair (69.7%).
- A 2015 study published in the Disability and Health Journal concluded that individuals with physical disabilities have 75%, 57%, and 85% higher odds of having unmet medical, dental, and prescription medication needs, respectively. That study examined the effect of physical disability on access to care in a nationally representative sample of working-age adults with and without physical disabilities in the United States over a period of ten years (2002 - 2011). In all three areas, adults with physical disabilities were significantly more likely to report unmet access to care.
- A 2015 study published in the Disability and Health Journal concluded that significant disparities in health were found for adults with disabilities relative to adults without disabilities. Adults with disabilities are 12.7 times more likely to report poor overall health status compared to adults without disabilities.
- In Healthy People 2020, which set decennial national health priorities for 2010 to 2020, the U.S. Department of Health and Human Services (HHS), Office of Disease Prevention and Health Promotion, documented that people with disabilities were more likely than those without disabilities to experience difficulties or delays in getting healthcare they needed, had not had a mammogram in the past 2 years, had not had a Pap test within the past 3 years, had not had an annual dental visit, had not engaged in fitness activities, used tobacco, were overweight or obese, had high blood pressure, and experienced symptoms of psychological distress.
- According to the Centers for Disease Control and Prevention 2015 Key Findings, among other disparities in health risks and behaviors, adults with disabilities are 9.4% more likely to experience cardiovascular disease, are 10.4% more likely to be obese, and significantly more likely to smoke (10.8%) or have a sedentary lifestyle (22%) than adults without disabilities.
- A 2014 study published in the Disability and Health Journal, revealed that pregnant women with chronic physical disabilities are 2.9 times more likely than other women to have hypertension; 6.6 times more likely to have coronary heart disease; 6.5 times more likely to have kidney and liver conditions; 5.1 times more likely to have chronic obstructive pulmonary disease; and 3.6 times more likely to have diabetes; among other higher health condition ratios.
- According to the 2013 National Healthcare Disparities Report from the Agency for Healthcare Research and Quality, while more than 60% of quality indicators, such as measures of patient-centered care and access to care, had improved for people without any activity limitations (one measure of disability), only 20 to 35% had improved for people with such limitations.
- A September 2012 study in the Global Journal of Health Science that compared utilization of preventive services, chronic disease rates, and engagement in health risk behaviors of participants with differing severities of disabilities to those without disabilities, found that participants with disabilities had significantly higher odds ratios for all chronic diseases, for physical inactivity, obesity, and smoking. While they were significantly more likely to participate in some preventive services (flu/pneumonia vaccination, HIV test), they were significantly less likely to participate in other preventive services (mammogram, Pap test).
- An October 2011 study in the Disability and Health Journal comparing health disparities between persons in the U.S. with no disabilities and those with cognitive limitations and physical disabilities, revealed that individuals with physical disabilities or cognitive limitations had higher prevalence rates for 7 chronic diseases than those with no disability when adjusted for age.  Compared to adults without disability, those with physical disabilities and those with cognitive limitations experienced more cardiac disease, diabetes, stroke, arthritis and asthma, as well as higher blood pressure and cholesterol levels. The study also noted that persons with disabilities are far less likely to receive preventive screenings. 
- A 2011 report by the Center for Disease Control and Prevention, finding that for U.S. adults with disabilities, smoking rates are 47% higher, the prevalence of hypertension is 13% higher ]than for non-disabled adults, and people with disabilities of all ages have more than twice the incidence of diabetes. In addition, rates of cardiovascular disease - the leading cause of death in the U.S. - are three times higher among adults with disabilities.
- The Agency for Healthcare Research and Quality’s 2009 & 2010 National Healthcare Disparities Report (which examined disparities in health and dental care for persons with disabilities, among other populations that experience disabilities).
- A growing number of research publications (19 in total) documenting physical access barriers involving MDE, including reports concerning: individual patients; findings from focus groups, in-depth individual interviews, or surveys of relatively small numbers of patients or practitioners; and several larger studies.
The mountain of empirical evidence gives voice to the continuous struggles that persons with disabilities are experiencing in receiving even basic healthcare and shows the significant health disparities between persons with disabilities and those without. It is a fact that if you are a person with a disability, and a person with a physical disability, you will likely not receive the same level of care as someone who is not disabled.
Finally, framed in the context of reducing healthcare disparities and achieving health equity for patients with disabilities, NCD’s 2021 report, Enforceable Accessible Medical Equipment Standards: A Necessary Means to Address the Health Care Needs of People with Mobility Disabilities, again reviews literature that acknowledges and confirms the statistically significant sub-optimal treatment of people with disabilities in the receipt of healthcare, and their poorer health outcomes from sources including the U.S. Surgeon General, the Center for Disease Control and Prevention, the National Institutes of Health, the National Academies of Science, Engineering and Medicine, and leading healthcare institutions and researchers, including AHRQ.
The report focuses on the widespread lack of accessible medical diagnostic equipment (accessible MDE) in healthcare settings that creates a physical access barrier to the receipt of healthcare for over 20 million individuals with mobility limitations in the U.S. This number is expected to grow given population health trends, such as increasing rates of chronic medical conditions, obesity, and the aging population.
Among the findings highlighted in the report:
- Adults with mobility impairments are at higher risk of foregoing or delaying necessary healthcare and having unmet medical, dental, and prescription needs compared to adults without disabilities.
- Lack of timely access to primary and preventive care can result in the development of chronic and secondary conditions as well as the exacerbation of the original disabling condition itself, resulting in poorer health outcomes.
- The lack of accessible MDE remains widespread despite federal laws which require healthcare providers to ensure full and equal access to their healthcare services and facilities.
- Inaccessible MDE is a major barrier to receiving necessary healthcare, compromises quality of care, and has resulted in delayed care, incomplete care, and missed diagnoses, and perpetuates the significant health disparities of people with mobility impairments.
- Without widespread availability of height adjustable examination tables, accessible mammography equipment, accessible weight scales and lift equipment to facilitate transfers, among other accessible medical and diagnostic equipment, people with mobility impairments will remain less likely to receive recommended preventive healthcare services—like cervical cancer screening; colorectal cancer screening; obesity screening; and breast cancer screening.
Bolstering the research in this report is a recently released national survey that explores the extent to which physicians nationwide use accessible weight scales and exam tables when caring for patients with significant mobility limitations. A survey was developed and administered to 714 physicians in family medicine, general internal medicine, rheumatology, neurology, ophthalmology, orthopedic surgery, and obstetrics-gynecology. The survey revealed that only 22.6% used accessible weight scales, and only 40.3% used accessible exam tables/chairs.
Finally, NCD is currently finalizing a health equity framework developed with the assistance of a group of nationally recognized experts in disability and healthcare. Its four core tenets are: (1) the adoption and implementation of disability cultural competency curricula in all medical schools; (2) the adoption of the US Access Board’s 2017 accessible medical diagnostic equipment standards into binding regulations; (3) enhanced and deliberate data collection regarding healthcare encounters by people with disabilities; and (4) the designation of all people with disabilities as a special medically underserved population. The Institute’s designation of people with disabilities as a health disparities population will fulfill the fourth tenet.
Based on the overwhelming and compelling vast amount of research described above, it is both necessary and appropriate for the Institute to make this designation in order to improve research and equitable healthcare for people with disabilities. Furthermore, we reiterate that this would further the goal of Executive Order 13985, by addressing barriers to equity for underserved and marginalized groups, including people with disabilities.
I would appreciate a meeting with you in the immediate future to discuss this letter. Ana Torres-Davis, NCD Senior Attorney Advisor, is available to assist your staff in arranging a meeting. Ms. Torres-Davis can be reached at firstname.lastname@example.org.
Andrés J. Gallegos
 29 U.S.C. § 781(a)(5), (a)(6).
 29 U.S.C. § 781(a)(10).
 42 U.S.C. 285t(d)(2).
 There is no other limitation on the Institute’s designation of a health disparities population in the statute. Indeed, Congress made clear that the purpose of the Institute “is the conduct and support of research, training, dissemination of information, and other programs with respect to minority health conditions and other populations with health disparities. (emphasis added). 42 U.S.C. 285t(a),
 Executive Order On Advancing Racial Equity and Support for Underserved Communities Through the Federal Government. January 20, 2021. https://www.whitehouse.gov/briefing-room/presidential-actions/2021/01/20/executive-order-advancing-racial-equity-and-support-for-underserved-communities-through-the-federal-government/
 Agaronnik, N.D., El-Jawahri, A. & Iezzoni, L.I. Perspectives of Patients with Pre-existing Mobility Disability on the Process of Diagnosing Their Cancer. J GEN INTERN MED 36, 1250–1257 (2021). https://doi.org/10.1007/s11606-020-06327-7
 Jean P. Hall, Noelle K. Kurth; A Comparison of Health Disparities Among Americans With Intellectual Disability and/or Autism Spectrum Disorder and Americans With Other Disabilities. Inclusion 1 September 2019; 7 (3): 160–168. doi: https://doi.org/10.1352/2326-6988-7.3.160
 H. Stephen Kaye, 2019: Disability-Related Disparities in Access to Health Care Before (2008–2010) and After (2015–2017) the Affordable Care Act. American Journal of Public Health 109, 1015 – 1021, https://doi.org/10.2105/AJPH.2019.305056
 Yee, Breslin, et al., Compounded Disparities: Health Equity at the Intersection of Disability, Race, and Ethnicity, National Academies of Sciences, Engineering, Medicine, published April 13, 2018. http://nationalacademies.org/hmd/Activities/SelectPops/HealthDisparities/Commissioned-Papers/Compounded-Disparities.aspx. Citing Centers for Disease Control and Prevention. Disability and Obesity. http://www.cdc.gov/ncbddd/disabilityandhealth/obesity.html. Accessed August 17, 2016; Krahn GL., et al., Persons with disabilities as an unrecognized health disparity population. Am J Public Health. 2015; 105:S198-206. doi:10.2105/AJPH.2014.302182.
 Mitra M., et al., Barriers to providing maternity care to women with physical disabilities: Perspectives from health care practitioners, Disability and Health Journal 10 (2017) 445-450. Available at https://www.disabilityandhealthjnl.com/article/S1936-6574(16)30196-0/fulltext
 Healthcare utilization and associated barriers experienced by wheelchair users: A pilot study Stillman MD, et al., Healthcare utilization and associated barriers experienced by wheelchair users: A pilot study, Disability and Health Journal (2017), http://dx.doi.org/10.1016/j.dhjo.2017.02.003
 See Elham Mahmoudi, Ph.D., M.S., et al., Disparities in access to health care among adults with physical disabilities: Analysis of a representative national sample for a ten-year period, Disability and Health Journal 8 (2015) 182-190, www.disabilityandhealthjnl.com
 Havercamp, S. M., & Scott, H. M. (2015). National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities. Disability and Health Journal, 8(2), 165–172.
 Healthy People 2020: disability and health. Washington, DC: Office of Disease Prevention and Health Promotion (http://www .healthypeople.gov/2020/topics-objectives/ topic/disability-and-health). It’s important to note HHS has been attempting to address this identical problem for decades. In 2000 when it released its Healthy People 2010 from the U.S. Department of Health and Human Services, cautioned that "as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population." See HHS U.S. Healthy People 2010. Second Edition, Understanding and Improving Health and Objectives for Improving Health. Second Edition ed. Washington, D.C.: U.S. Government Printing Office; 2000.
 Key Findings: Persons with Disabilities as an Unrecognized Health Disparity Population. Centers for Disease Control and Prevention. March 31, 2015. http://medbox.iiab.me/modules/en-cdc/www.cdc.gov////ncbddd/disabilityandhealth/features/unrecognizedpopulation.html
 Iezzoni LI, Yu J, Wint AJ, Smeltzer SC, Ecker JL. General health, health conditions, and current pregnancy among U.S. women with and without chronic physical disabilities. Disabil Health J. 2014;7(2):181-188. doi:10.1016/j.dhjo.2013.12.002
 2013 National Healthcare Disparities Report. AHRQ publication no. 14-0006. Rockville, MD: Agency for Healthcare Research and Quality, May 2014 (http://www .ahrq.gov/research/findings/nhqrdr/nhdr13/ 2013nhdr.pdf ).
 Pharr, J. R., Bungum, T. J. (2012). Health Disparities Experienced by People with Disabilities in the US: A Behavioral Risk Factor Surveillance System Study. Global Journal of Health Science, 4(6), 99-108.
 See A. Reichard, Ph.D. et al., Health Disparities among Adults with Physical Disabilities or Cognitive Limitations Compared to Individuals with No Disabilities in the United States. Disability and Health Journal, Vol. 4, Issue 4, October 2011, pp. 59-67. Available at http://www.disabilityandhealthjnl.com/.
 Id., at p. 65. “Not only were the screening rates worse than the ‘‘no disability’’ group, the rates at which each group received preventive cancer screenings and dental care was far below accepted standards of care suggested by the U.S. Preventive Services Task Force and the American Dental Association (even though most people with disabilities have a primary care source).
 Centers for Disease Control and Prevention (CDC). Current Cigarette Smoking among Adults—United States, 2011. Morb. Mortal. Wkly. Rep. 2012, 61, 889–894.
 Centers for Disease Control and Prevention (CDC). People with Disabilities and High Blood Pressure. February 2015. Available online: https://www.cdc.gov/ncbddd/disabilityandhealth/features/high-blood- pressure.html.
 Agency for Healthcare Research and Quality. 2009 & 2010 National Healthcare Disparities Report. Vol AHRQ Publication No. 10-0004 & 10-0005 Rockville, MD: U.S. Department of Health and Human Services; 2010, 2011.
 The research publications and studies reviewed included: Andriacchi R., Primary care for persons with disabilities: the internal medicine perspective. Am J Phys Med Rehabil. 1997;76(3 Suppl):S17-20; Iezzoni L, Blocked. Health Aff (Millwood). 2008;27(1):203-209. doi: 10.1377/hlthaff.27.1.203; Kirschner K, et al., Structural impairments that limit access to health care for patients with disabilities. JAMA. 2007;297(10):1121-1125; Altman B, Bernstein A. Disability and Health in the United States, 2001-2005. Hyattsville, MD: National Center for Health Statistics; 2008. Available at https://www.cdc.gov/nchs/data/misc/disability2001-2005.pdf; Drainoni M, et al., Cross-Disability experience of barriers to health-care access: Consumer perspectives. Journal of Disability Policy Studies. 2006;17(2):101-115; Iezzoni L, et al., Physical access barriers to care for diagnosis and treatment of breast cancer among women with mobility impairments. Oncology Nursing Forum. 2010;37(6):711-717; Iezzoni L, et al., Rural residents with disabilities confront substantial barriers to obtaining primary care. Health Serv Res. 2006;41(4 Pt 1):1258-1275; Iezzoni L, et al., More than Ramps. A Guide to Improving Health Care Quality and Access for People with Disabilities. New York: Oxford University Press; 2006; Iezzoni L, et al., Implications of mobility impairment on the diagnosis and treatment of breast cancer. Journal of Women's Health. 2011;20(1):45-52; Kroll T, et al., Barriers and strategies affecting the utilisation of primary preventive services for people with physical disabilities: A qualitative inquiry. Health Soc Care Community. 2006;14(4):284-293; Lishner DM, et al., Access to primary health care among persons with disabilities in rural areas: A summary of the literature. J Rural Health. 1996;12(1):45-5; Mele N, et al., Access to breast cancer screening services for women with disabilities. J Obstet Gynecol Neonatal Nurs. 2005;34(4):453-464; Morrison EH, et al., Primary care for adults with physical disabilities: Perceptions from consumer and provider focus groups. Fam Med. 2008;40(9):645-651; Scheer JM, et al., Access barriers for persons with disabilities: The consumer's perspective. J Disabil Policy Stud. 2003;14(4):221-230; Smeltzer SC, et al., Perspectives of women with disabilities on reaching those who are hard to reach. J Neurosci Nurs. 2007;39(3):163-171; Story MF, et al., Perspectives of patients with disabilities on the accessibility of medical equipment: Examination tables, imaging equipment, medical chairs, and weight scales. Disabil Health J. 2009;2(4):169-179.e1.; Bachman SS, et al., Provider perceptions of their capacity to offer accessible health care for people with disabilities. J Disabil Policy Stud. 2006;17(3):130-136; Centers for Disease Control and Prevention. Environmental barriers to health care among persons with disabilities, Los Angeles county, California, 2002-2003. Morbidity and Mortality Weekly Report. 2006;55(48):1300-1303; Mudrick N, et al., Physical accessibility in primary health care settings: Results from California on-site reviews. Disabil Health J. 2012;5(3):159-167; Lagu T, et al., Access to subspecialty care for patients with mobility impairment: A survey. Ann Intern Med. 2013;158(6):441-446; Iezzoni LI, Ngo LH, Li D, Roetzheim RG, Drews RE, McCarthy EP. Early stage breast cancer treatments for younger Medicare beneficiaries with different disabilities. Health Serv Res. 2008 Oct;43(5 Pt 1):1752-67. doi: 10.1111/j.1475-6773.2008.00853.x. Epub 2008 May 12. PMID: 18479411; PMCID: PMC2653883.
 National Council on Disability (June 2021). Available online at https://ncd.gov/publications/2021/enforceable-accessible-medical-equipment-standards.
 Lisa I. Iezzoni MD, MSc , Sowmya R. Rao PhD , Julie Ressalam MPH, Dragana Bolcic-Jankovic PhD , Karen Donelan ScD, EdM , Nicole Agaronnik, Tara Lagu MD, MPH, Eric G. Campbell PhD, Use of Accessible Weight Scales and Examination Tables/Chairs for Patients with Significant Mobility Limitations by Physicians Nationwide, The Joint Commission Journal on Quality and Patient Safety (2021), doi: https://doi.org/10.1016/j.jcjq.2021.06.005
 Id. at footnote 5.