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NCD Letter to U.S. Attorney General Sessions Regarding Necessity & Appropriateness of Accessible Medical Equipment Regulations

Monday, August 13, 2018

August 13, 2018

The Hon. U.S. Attorney General Jeffrey B. Sessions
U.S. Department of Justice
950 Pennsylvania Avenue, NW
Washington, D.C. 20530-0001

Re: Necessity & Appropriateness of Accessible Medical Equipment Regulations

Dear Attorney General Sessions:

In the wake of the 28th anniversary of the Americans with Disabilities Act (“ADA”), the landmark civil rights legislation for millions of persons with disabilities in the United States, I write on behalf of the National Council on Disability (NCD) - 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 – to assist the Department of Justice (DOJ), in its reevaluation of the necessity and appropriateness of the regulation of the accessibility of non-fixed (medical) equipment and furniture under titles II and III of the ADA (the “Accessible Medical Equipment Regulation”), which the Department withdrew on December 26, 2017.1 In furtherance of striving to fulfill the overarching promise of the ADA – the full inclusion in all aspects of American life for millions of people with disabilities – and for the other reasons set forth herein, we urge the Department to issue the Accessible Medical Equipment Regulation.

Background

In 2005, the Rehabilitation Engineering Research Center on Accessible Medical Instrumentation (“RERC-AMI”), released the results of a national study about the types of medical equipment that were most difficult for patients with disabilities to use and the causes for such difficulties.2 The survey results revealed that exam tables, X-ray equipment, weight scales and exam chairs were the four most reported categories of inaccessible medical equipment.

Prompted by the RERC-AMI’s study results, in 2007 identical companion bills, S. 1050 and H.R. 3294, “Promoting Wellness for Individuals with Disabilities Act,”3 were introduced. The proposed legislation aimed to establish, inter alia, that the U.S. Access Board (“Access Board”), issue and periodically review standards for medical diagnostic equipment – exam tables and chairs, weight scales, mammography equipment, X-ray equipment and other diagnostic equipment - accessible to, and usable by, people with disabilities, and that allow independent entry to, use of, and exit from such equipment by persons with disabilities.

In 2009, NCD issued its comprehensive report, The Current State of Health Care for People with Disabilities (NCD Report)4. We concluded therein 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. In collecting and evaluating information for NCD Report, we reviewed the limited number of studies that then existed documenting the health disparities and specific problems people with disabilities were having in gaining access to appropriate healthcare. We supplemented our literature review, inter alia, by conducting semi-structured key informant telephone or in-person interviews with 23 subject matter experts (healthcare practitioners, researchers, Federal agency officials and persons with disabilities), concerned with health, access to healthcare, health disparities, and health outcomes for people with disabilities, and convened a national Summit on Healthcare for People with Disabilities. 

The NCD Report, while addressing the barriers confronted by all persons with disabilities, detailed the significant barriers many people with physical disabilities were having obtaining access to examination and diagnostic equipment such as mammogram machines, which can be difficult or impossible to access if the equipment is not height-adjustable. We noted the absence of lift equipment and the lack of safe patient handling training for medical staff to lift patients onto inaccessible examination tables, resulting in healthcare providers frequently conducting 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. We also underscored the need to gather better data about health disparities affecting persons with disabilities.

On March 23, 2010, Section 4203 of the Patient Protection and Affordable Care Act,5 amended Title V of the Rehabilitation Act of 19736 by adding Section 510 (incorporating provisions of S. 1050 and H.R. 3294). This new section required the Access Board, in consultation with the Food and Drug Administration, to issue accessibility standards for medical diagnostic equipment (“MDE Standards”). The Access Board’s MDE Standards Advisory Committee’s December 2013 Final Report7 (“Final Report”), identified “inaccessible medical equipment” among the reasons for the susceptibility of persons with disabilities to “experiencing substandard care.”8

The Final Report cited the growing number of studies documenting the access barriers involving medical diagnostic equipment, and health disparities experienced by the then approximately 57 million persons with disabilities, and their healthcare experiences as important contextual considerations that shaped the committee’s view of the need for, and the potential nature of, the MDE Standards Report.9 In addition to the NCD Report, the committee cited:

  • The U.S. Department of Health and Human Service’s Healthy People 2010,10 (which 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);
  • The U.S. Surgeon General’s July 26, 2005 Call to Action,11 (which warned that people with disabilities can lack equal access to health care and urging their inclusion in studies of healthcare disparities);
  • The Agency for Healthcare Research and Quality’s 2009 & 2010 National Healthcare Disparities Reports12 (which examined disparities in health and dental care for persons with disabilities, among other populations that experience disabilities);
  • The U.S. Department of Health and Human Services’ Healthy People 202013 (which continued to note healthcare disparities for persons with disabilities, and among its various objectives for this population included decreasing barriers within healthcare facilities);
  • The U.S. Department of Health and Human Services’ 2008 National Health Interview Survey14 (highlighting that women with self-reported disabilities of different types are substantially less likely than other women to receive critical mammography screening and Pap screening tests, and among women who self-report mobility difficulties, screening rates fall linearly as the severity of mobility limitations increases); and
  • 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.15

The mountain of empirical evidence reviewed gave voice to the struggles that persons with physical disabilities, particularly women with physical disabilities, were experiencing in receiving even basic care, and the existence of health disparities between persons with disabilities and those without.  It was clear, 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 given the absence of accessible medical diagnostic equipment.

The MDE Standards were published in the Federal Register on January 9, 2017.16 The Access Board divided the MDE Standards into separate technical criteria based on how the diagnostic equipment is used by the patient: (1) supine, prone, or side lying position; (2) seated position; (3) while seated in a wheelchair; and (4) standing position. For each category the Access Board provided technical criteria to allow independent access to and ensure the diagnostic equipment was usable by patients with disabilities to the maximum extent possible. The technical requirements for diagnostic equipment used by patients in the supine, prone, or side-lying position and diagnostic equipment used by patients in the seated position focus on ensuring the patient can transfer from a mobility device onto the

diagnostic equipment. The other category of requirements focus on the necessary technical requirements to allow the patient to use the diagnostic equipment while seated in their wheeled mobility device, or while standing, respectively.17 As the Access Board noted, given the many barriers to healthcare that patients with mobility and communication disabilities encounter due to inaccessible medical diagnostic equipment, if the MDE Standards are adopted by DOJ, individuals with disabilities will benefit from access to and use of diagnostic equipment meeting the MDE Standards, facilitating their ability to “. . . receive health care comparable to that received by their non-disabled counterparts . . .”18

Discriminatory Barriers to Access to Healthcare and Health Disparities Persist as the Population of Persons with Disabilities Grows

13 years after the RECR-AMI study, the equipment used for basic healthcare services – exam tables and chairs, weight scales, X-ray equipment - remains inaccessible to a large percentage of persons with physical disabilities. Moreover, nearly 5 years after the Access Board’s Advisory Committee’s Final Report, the health disparities and access barriers that framed the Access Board’s Advisory Committee’s development of the MDE Standards remain. Discrimination against persons with disabilities in the access and delivery of healthcare services persists, evidenced, in part, by the significant and alarming health disparities that remain between persons with disabilities, particularly persons with physical disabilities, and those without.

Unlike the limited literature available documenting the health disparities affecting persons with disabilities when we published the NCD Report in 2009, today a great number of (recent) studies and reports well-document the continued prevalence of health disparities,19 to wit:

  • 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,20 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.21 The findings identified, inter alia, clinical-practice limitations, like the absence of accessible office equipment, e.g., examination tables, among the barriers contributing to the 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.22 432 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.23 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.24
  • In Healthy People 2020, which sets 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 need, not have had a mammogram in the past 2 years, not have had a Pap test within the past 3 years, not have had an annual dental visit, not engage in fitness activities, use tobacco, be overweight or obese, have high blood pressure, and experience symptoms of psychological distress.25
  • 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.26
  • 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.27
  • An October 2011 published 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, it was 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.28 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.29
  • For U.S. adults with disabilities, smoking rates are 47% higher;30 the prevalence of hypertension is 13% higher31 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.32

There are many factors contributing to these staggering disparities. Physical barriers to care, however, in the form of inaccessible medical diagnostic equipment, such as examination tables, weight scales, and imaging technologies – all of which are addressed in the MDE Standards - contribute greatly to these disparities as evidenced by a number of published studies and reports, like:33

  • Our Fall 2017 Issues Brief, Neglected for Too Long: Dental Care for People with Intellectual and Developmental Disabilities, NCD reiterated that dental care is a frequently forgotten area within the overall health care equation; and dental offices are often inaccessible, and their equipment may not accommodate many disabilities.34
  • A 2017 pilot study published in the Journal of Rehabilitation Research and Development to assess ADA compliance within 30 primary care and specialty care clinics affiliated with a statewide healthcare network.35  The study found 70% of clinical managers reported not owning a height-adjustable examination table or wheelchair accessible weight scale. Furthermore, patients were examined in their wheelchairs (70%–87%), asked to bring someone to assist with transfers (30%), or referred elsewhere due to an inaccessible clinic (6%).
  • A 2015 study published in the Journal of Rehabilitation Research & Development assessed ADA compliance of 30 primary care and specialty care clinics affiliated with a statewide healthcare network within a 15-mile radius of Louisville, Kentucky. Site assessments based on the ADA Accessibility Guidelines for Buildings and Facilities were performed at those clinics. Clinical managers completed a questionnaire on standard practices for examining and treating patients who utilize wheelchairs. All primary care clinics and two-thirds of the specialty care clinics did not have wheelchair accessible weight scales. 93% of the examination rooms inspected were noncompliant with one or more ADA accessibility standards. 80% of the primary care clinics and 65% of specialty care clinics did not have height adjustable examination tables. 70% of the clinical managers surveyed reported that persons utilizing wheelchairs were examined as they remained in their wheelchairs.36
  • A March 2013 study published in the Annals of Internal Medicine, surveyed 256 endocrinology, gynecology, orthopedic surgery, rheumatology, urology, ophthalmology, otolaryngology, and psychiatry practices in 4 U.S. cities to learn about the accessibility of medical and surgical subspecialist practices for patients with mobility impairments.37 Of 256 practices surveyed, 56 (22%) reported that they could not accommodate the patient; 9 (4%) reported that the building was inaccessible; 47 (18%) reported inability to transfer a patient from a wheelchair to an examination table; and only 22 (9%) reported use of height-adjustable tables or a lift for transfer. Gynecology was the subspecialty with the highest rate of inaccessible practices (44%).38
  • A 2013 survey conducted by the Illinois Department of Public Health Disability Health Program to 160 primary care and pediatric providers in the state designed to raise awareness about disability barriers and increase accessibility of primary healthcare to people with disability, found that less than half the respondents reported having at least one height-adjustable exam table and approximately one-fourth reported the availability of accessible weight scales. Only 8 respondents (5%) reported having a patient lift.39

Those health disparities and access barriers are likely to adversely affect a greater number of persons with disabilities as this demographic, 56.7 million, continues to grow.40 With nearly 1 out of every 5 persons with a disability in America, it affirms that disability is a part on the human condition, likely to affect individuals or families at different stages in their lives.

Persons with disabilities utilize the U.S. health system for disease management versus disease prevention. For that paradigm to change, the Accessible Medical Equipment Regulations must be issued. Compared with their non-disabled peers, persons with disabilities are less likely to receive recommended preventive healthcare services like those recommended by the U.S. Preventive Task Force.41 The U.S. Preventative Task Force develops recommendations for clinical preventive services for all Americans (e.g., blood pressure screening; cervical cancer screening; colorectal cancer screening; obesity screening and counseling; and breast cancer screening, among other tests and screenings).42 Without the availability of height adjustable examination tables, accessible mammography equipment and lift equipment to facilitate transfers, etc., all of which are covered by the MDE Standards, most persons with physical disabilities, if they receive those preventive services at all, will likely receive them while they remain in their wheelchair even though it may be clinically inappropriate to do so.  The absence of that equipment places such person’s health and well-being at risk and contributes greatly to their denial of the equal opportunity to benefit from a provider’s facilities and services, the overarching mandate of the ADA.43

Existing Nondiscrimination Regulations Are Insufficient

While Section 504 of the Rehabilitation Act of 1973 (“Section 504”),44 titles II and III of the ADA (“Titles II & III”),45 and most recently, Section 1557 of the Patient Protection and Affordable Care Act (“Section 1557”),46 have resulted in the removal of some of the barriers to care, as illustrated above, systemic improvement of access to healthcare for persons with disabilities has not materialized.47

There are no specific provisions in the Titles II & III regulations governing the accessibility of equipment and furniture that are not fixed. Under the regulatory provisions governing reasonable modifications of policies, practices, or procedures, program accessibility, effective communication, and barrier removal,48 accessible equipment and furniture are required. DOJ approaches requiring accessible equipment and furniture on a case-by-case basis when complaints are received by its Disability Rights Section. That practice, however, has not yielded any meaningful effect beyond the provider subject to the complaint, and none of its enforcement actions under its 2012 Barrier Free Healthcare Initiative, and very few of its enforcement actions before its adoption of that initiative against healthcare entities, address the provision of accessible equipment and furniture. 

As clearly articulated in DOJ’s Advanced Notice of Proposed Rulemaking for Equipment and Furniture:49

“. . . [w]ithout accessible medical examination tables, dental chairs, radiological diagnostic equipment, scales, and rehabilitation equipment, individuals with disabilities do not have an equal opportunity to receive medical care. Individuals with disabilities may be less likely to get routine preventative medical care than people without disabilities because of barriers to accessing that care . . .”50

As evidenced by the discussion of the staggering health disparities above, that assessment rings truer today than when made in 2010, and we know this because of the now significant number of well-documented studies and reports identified above that give voice to the struggles of persons with disabilities have accessing and receiving quality care.

While in 2010 DOJ and the Department of Health and Human Services issued a guidance document - Access to Medical Care for Individuals with Mobility Disabilities - for healthcare providers regarding their responsibilities to make their services and facilities accessible to individuals with physical disabilities by utilizing lift equipment, height adjustable exam tables, etc., under the ADA and Section 504,51 it is just that, guidance, and its provisions are not legally enforceable. The Accessible Medical Equipment Regulation addresses the issues in the healthcare providers’ guidance document and the regulation is needed to address, in part, the systemic healthcare access discrimination discussed herein that is jeopardizing the health and safety of persons with disabilities.

NCD urges DOJ to issue the Accessible Medical Equipment Regulation as, for the reasons set forth above, it is appropriate and necessary. It will establish a clear and unequivocal directive to healthcare providers on the need to provide accessible medical diagnostic equipment to meet their federal nondiscrimination legal mandates for persons with disabilities. Moreover, as the “grandfather of preventative health,” former Surgeon General Everett Koop, understood and wrote in a 1993 co-authored article, “Preventable illness makes up approximately 70 percent of the burden of illness and the associated costs.”52 In research published in 2014, preventable illnesses corresponded to treatment costs and lost productivity of $1.3 trillion, and in the same research, projections of the impact of improving prevention and treatment corresponded with a reduction in treatment costs of $220 billion, and an increase in the gross domestic product of $900 billion.53 Preventative care has long been viewed as a far more cost-effective practice of medicine than acute or crisis care, and accessible examination and diagnostic equipment makes a greater emphasis on preventative care possible.

As an independent agency responsible for advising fellow federal agencies, members of our staff would welcome the opportunity to meet with members of your team to discuss these matters further within the next 60 days. Please have a member of your staff contact Joan Durocher, General Counsel and Director of Policy, to schedule such a meeting or to discuss this matter further, at jdurocher@ncd.gov.

Respectfully submitted,

Neil Romano
Chairman

 

1 82 Fed. Reg. 60932 (December 26, 2017) Announcing the withdrawal of DOJ’s previously announced Advance Notice of Proposed Rulemaking, entitled “Nondiscrimination on the Basis of Disability by State and Local Governments and Places of Public Accommodation; Equipment and Furniture.” 75 Fed. Reg. 43452 (July 26, 2010).

2 Story MF, et al., Focus Groups on Accessibility of Medical Instrumentation. Atlanta, GA: Proceedings of RESNA 2005 Conference; 2005. Available at:  https://www.resna.org/sites/default/files/legacy/conference/proceedings/… The Rehabilitation Engineering Research Center on Accessible Medical Instrumentation was created by a 5-year grant in 2002 from the U.S. Department of Education’s National Institute on Disability and Rehabilitation Research.           

3 110 Cong. Rec. S. 1070, 2007; 110 Cong. Rec. H.R. 3294, 2007. The proposed legislation also called for (i) the Secretary of Health and Human Services to make grants for programs to promote good health, disease prevention, and wellness for individuals with disabilities and prevent secondary conditions in such individuals; (ii) to establish a National Advisory Committee on Wellness for Individuals with Disabilities to set priorities to carry out such programs, review grant proposals, make recommendations for funding, and annually evaluate the progress of such programs in implementing the priorities; and (iii) to provide for training programs to improve competency and clinical skills for providing health care and communicating with patients with disabilities through training integrated into the core curriculum and patient interaction in community-based settings. These bills were later incorporated into the ACA as Section 4203, “Removing Barriers and Improving Access to Wellness for Individuals with Disabilities.”

4 Released September 30, 2009. Available at https://ncd.gov/publications/2009/Sept302009.

5 42 U.S.C. § 18001, et seq., Pub. L. 111-148

6 29 U.S.C. § 794f

7 U.S. Access Board, Advancing Equal Access to Diagnostic Services: Recommendations on Standards for the Design of Medical Diagnostic Equipment for Adults with Disabilities. The final report of the Medical Diagnostic Equipment Accessibility Standards Advisory Committee, December 6, 2013. Available at https://www.access-board.gov/guidelines-and-standards/health-care/about-…

8 Id. Other reasons for quality shortfalls identified were clinicians’ failures to understand the values, preferences, needs, and expectations of persons with disabilities for their health care; financial barriers caused by insufficient or missing health insurance coverage and inaccessible buildings.

9 Id., at Section 2, Background. Available at https://www.access-board.gov/guidelines-and-standards/health-care/about-…

10 U.S. Department of Health and Human Services. 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. Available at https://www.healthypeople.gov/2010/?visit=1

11 U.S. Department of Health and Human Services. The Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities. Washington, D.C.: Public Health Service, Office of the Surgeon General; 2005.

12 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.

13 U.S. Department of Health and Human Services. Healthy People 2020. Second Edition, Understanding and Improving Health and Objectives for Improving Health. Second Edition ed. Washington, D.C.: U.S. Government Printing Office; 2000. Available at https://www.healthypeople.gov/

14 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

15 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; 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.

16 82 Fed. Reg. 2810 (January 9, 2017)

17 Id.

18 Id., at 2811.

19 Health disparities and unmet health care needs for persons with disabilities have long been a concern of the federal government. See, U.S. Surgeon General’s July 26, 2005, Call to Action, warning that people with disabilities can lack equal access to health care and urging their inclusion in studies of health care disparities.  U.S. Department of Health and Human Services. The Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities. Washington, D.C.: Public Health Service, Office of the Surgeon General; 2005. The National Healthcare Disparities Reports, released annually by the Agency for Healthcare Research and Quality examined disparities in health and dental care for persons with disabilities, among other populations that experience disabilities (e.g., racial and ethnic minorities). See Agency for Healthcare Research and Quality. 2009 National Healthcare Disparities Report. Vol AHRQ Publication No. 10-0004 & 10-0005. Rockville, MD: U.S. Department of Health and Human Services; 2010 & 2011. In our 2009 report, The Current State of Health Care for People with Disabilities, we echoed concerns about healthcare disparities among persons with disabilities, but underscored the need to gather better data on this issue. See, The Current State of Health Care for People with Disabilities. Washington, DC: National Council on Disability; 2009.

20 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.

21 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

22 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

23 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

24 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.

25 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.

26 CDC. Key Findings: Unrecognized Health Disparity Population. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/disabilityandhealth/features/unrecognizedpopu…. Published March 31, 2015. Available at: https://www.cdc.gov/ncbddd/disabilityandhealth/features/unrecognizedpopu…

27 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 ).

28 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/.

29 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).

30 Centers for Disease Control and Prevention (CDC). Current Cigarette Smoking among Adults—United States, 2011. Morb. Mortal. Wkly. Rep. 2012, 61, 889–894.

31 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.

32 See, McDermott, S., et al., Prevalence of diabetes in persons with disabilities in primary care. J. Dev. Phys. Disabil. 2007, 19, 263–271. [CrossRef]; Stevens, A., et al., Hypertension among US adults by disability status and type, national health and nutrition examination survey, 2001–2010. Prev. Chronic Dis. 2014, 11. [CrossRef] [PubMed]; & Herrick, H.W.B., et al., The burden of heart disease among North Carolina adults with disabilities. N. C. Med. J. 2012, 73, 499–503. [PubMed]

33 In 2016, NCD Council Member, Andrés J. Gallegos, Esq., a shareholder with the Chicago law firm, Robbins, Salomon & Patt, Ltd., had surveyed 56 primary care providers identified as “accessible” in-network with Cigna Health Springs’ Medicaid Integrated Care Program and found that 66% did not have height adjustable examination tables, 76.8% did not have lift equipment and 78.6% did not have wheelchair accessible weight scales and could not weigh physically disabled patients that could not independently stand and balance on a traditional weight scale. Similarly, the law firm had surveyed 25 provider groups identified as “accessible” in-network with IlliniCare Health Plan’s Medicaid Integrated Care Program and found that 64% did not have height adjustable examination tables, 80% did not have lift equipment and 76% did not have wheelchair accessible weight scales and could not weigh physically disabled patients that could not independently stand and balance on a traditional weight scale.

34 NCD Issues Brief, Neglected for Too Long: Dental Care for People with Intellectual and Developmental Disabilities, Fall 2017. Available at: https://ncd.gov/publications/2017/dental-issue-brief. Citing NCD’s 2005 publication The Right to Health: Fundamental Concepts and The American Disability Experience. Available at: https://ncd.gov/policy/national-council-disability-topical-overviews-rig…

35 Frost K., et al., Accessibility of outpatient healthcare providers for wheelchair users: Pilot study. J Rehabil Res Dev. 2015;52(6):653–62. The study also found that 93% of the examination rooms and 83% of the restrooms were noncompliant with the ADA.

36 Accessibility of  outpatient  healthcare  providers  for wheelchair  users:  Pilot  study, K. Frost, MBA, PhD,  et al., J Rehabil Res Dev. 2015;52(6):653-662.

37 See T. Lagu, M.D., et al., Access to Subspecialty Care for Patients with Mobility Impairment: A Survey. Annals of Internal Medicine, Vol. 158, No. 6, March 19, 2013, pp. 441-446.  Available at http://annals.org/article.aspx?articleid=1667265.

38 Id., at 443.

39 Illinois Department of Public Health Disability and Health Program Exam Room and Medical Equipment Accessibility Survey Results. August 2013. Available at: http://dph.illinois.gov/sites/default/files/publications/examroom-and-me…

40 Brault, Matthew W., “Americans With Disabilities: 2010,” Current Population Reports, P70-131, U.S. Census Bureau, Washington, DC, 2012.

41 Centers for Disease Control and Prevention. Disability and Health Data System [Online Database]. 2010. Available online: http://dhds.cdc.gov.; Centers for Disease Control and Prevention (CDC); National Center for Health Statistics. DATA2020 [Internet Database]. 2010. Available online: http://www.healthypeople.gov/2020/data-search/Search-the-Data; Centers for Disease Control and Prevention (CDC); National Center for Health Statistics. DATA2010. [Internet Database]. 2010. Available online: http://wonder.cdc.gov/data2010/focus.htm.

42 U.S. Preventive Service Task Force, USPSTF A and B Recommendations, https://www.uspreventiveservicestaskforce.org/Page/Name/uspstf-a-and-b-r…

43  42 U.S.C. § 12132

44 29 U.S.C. § 794

45 42 U.S.C. §§ 12131 to 12165; & 42 U.S.C. §§ 12189 to 1218

46 45 C.F.R. §§ 92.1 – 92.203

47 See also, Mudrick NR., et al., Health care under the ADA: a vision or a mirage? Disabil Health J. 2010;3(4):233e239; Yee S., et al., Achieving accessible health care for people with disabilities: why the ADA is only part of the solution. Disabil Health J. 2010;3(4):253e261.

48 28 CFR § 35.150(a)(fundamental alteration and undue burden) & § 35.150(b)(methods); 28 CFR § 36.304 (barrier removal) and § 36.302(a) (reasonable modification)

49 75 Fed. Reg. 142, 43452 (July 26, 2010)

50 Id., at 43455

51 See Access to Medical Care for Individuals with Mobility Disabilities, July 2010, available at: http://www.ada.gov/medcare_ta.htm

52 Fries, J. F., Koop, E. C., et al., Reducing Health Care Costs by Reducing the Need and Demand for Medical Services, N Engl J Med 1993; 329:321-325.

53 Chatterjee, A., et al., Checkup Time: Chronic Disease and Wellness in America, Milken Institute, January 29, 2014. Available at: http://www.milkeninstitute.org/publications/view/618.

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An official website of the National Council on Disability