DREDF Responds to Questions about Preventive Services for People with Disabilities

May 30, 2023

Scientific Resource Center
Portland VA Research Foundation
3170 SW U.S. Veterans Hospital Road
Mail code: R&D 71
Portland, Oregon 97239

Thank you for the opportunity to respond to AHRQ’s draft Key Questions on the delivery of preventive health care services to people with disabilities. Disability Rights Education and Defense Fund (DREDF) is a national cross-disability law and policy center that protects and advances the civil and human rights of people with disabilities through legal advocacy, training, education, and development of legislation and public policy. We are committed to increasing accessible and equally effective healthcare for people with disabilities and eliminating persistent health disparities that affect the length and quality of their lives.

Our response to Key Question #3 provides the greatest substantive detail and citations. For Key Question #1, we note that the February 3, 2023 presentation from NCD to the National Advisory Council on Minority Health and Health Disparities (NACMHD) Working Group is available online and cites to multiple academic journal articles, research studies, and mainstream press reports that address the seven categories of barriers that are enumerated in the question. We therefore conclude that you already have access to the same resources that we would otherwise highlight here if you were simply seeking information for the first time. We instead write with some information about barriers to health care and preventive services that are perhaps a little more atypical or that we know because we have spoken directly with individuals who have experienced those barriers firsthand, or DREDF staff or their family members have experienced those barriers. For Key Question #2, we are providing a more general observation on the question itself.

Responses to Key Questions

1. What are the primary barriers and facilitators to preventive service use among people with disabilities to include, but not limited to, the following:
   1. Environment-level (e.g., transportation)
   2. Person-level (e.g., fear, discomfort)
   3. Health system (e.g., insurance, identification of disability type in EMR)
   4. Accessibility of health facilities
   5. Accessible communication
   6. Provider-level (e.g., disability knowledge and assumptions)
   7. How do these barriers vary by type of disability, gender, race/ethnicity, LGBTQ+ status, geographic location

Environment-Level Barriers: The accessibility of complaint/grievance and appeal systems can be a substantial barrier to care. Managed care organizations, regulators of state insurers, state Medicaid agencies, and the Centers for Medicare and Medicaid, as well as state and federal civil rights enforcement agencies, often rely on complaint driven enforcement. That is, all these entities will tend to correct or alter barriers to access and healthcare quality depending upon the complaints that they receive from patients and their families. If those complaint systems themselves present barriers, such as an inability to receive complaints in multiple formats that include sign language and non-English languages, or fail to provide an individual’s healthcare records and documentation in formats that are accessible to a blind person, or simply have a complicated procedure and timeline for making complaints, they will fail to receive complaints that illustrate the barriers that people with disabilities face when seeking preventive care. Grievances can, and should occur, when preventive services are delivered badly, when they come with co-pays and charges that should not occur because preventive services are an Essential Health Benefit Category under the Affordable Care Act, or when coverage of preventive services are denied altogether, and yet the Kaiser Family Foundation reports that “[i]n 2021, HealthCare.gov consumers appealed less than two-tenths of 1% of denied in-network claims, and insurers upheld most (59%) denials on appeal.” Complaint driven systems can, in themselves, be problematic for healthcare consumers, and they can be especially problematic for patients with disabilities who face barriers to accessing those complaint systems in the first place. Ensuring that all complaints/grievance systems maintain fully accessible intakes, that there is proactive and deliberate outreach to blind, Deaf, and limited English proficient individuals who cannot be expected know or read how the complaint system works, and training staff on how to receive complaints and provide accommodations such as health records in alternative formats, along with implementing a clear “chain of command” for compliance with reasonable accommodation requests as required under federal non-discrimination law, are key components of ensuring a complaint system that will work better for people with disabilities.

Person-Level: We have personally interviewed people with significant disabilities who sought care relating to a sexually-transmitted disease only to be questioned by a provide who expressed incredulity that they were capable of engaging in sexual activity. This treatment did not make the person fearful, but it did make them deeply uncomfortable and unwilling to return to healthcare providers who would substitute their own stereotypes and misperceptions of what it like to live with a disability, and feel free to express those stereotypes, rather than provide culturally competent and effective health care. 

Health System: a forthcoming report from the Consumer Representatives at the National Association of Insurance Commissioners is focused on the barriers that insured individuals face when seeking preventive care. One of the report’s findings is that the provider and insurance codes that are used for preventive services, and that are critical to proper categorization and reimbursement of preventive services as such, are highly disordered. In this environment, it is quite probable that insurers and providers may make the same mistake that is made in the Behavioral Risk Factor Surveillance System, which in defines “routine checkups” to define them as “a general physical exam, not an exam for a specific injury, illness, or condition.” The problem with this definition of a routine checkup, which is where preventive services typically are ordered and made, is that it invites providers to conflate the appointments made by people with a specific injury, illness, or condition as exams made for specific injuries, illnesses, or conditions. People with disabilities require all the same preventive care and exams as people without disabilities, but they may have more reasons to visit a healthcare provider more frequently. If preventive procedures are made during those visits, are they characterized correctly as preventive exams that should not be subject to a co-pay? If a disabled person, such as a wheelchair user, needs an accommodation such as a brief inpatient status, to undertake a preventive procedure such as a colonoscopy, does that procedure remain correctly characterized as a preventive exam or is it coded differently and therefore subject to co-pays? These are payments that people with disabilities can ill-afford, given that living with a disability in and of itself imposes additional healthcare costs, and people with disabilities tend to have lower educational and employment levels due to disability-related barriers to these social determinants of health.

Accessibility of health facilities, Accessible Communication, Provider-level barriers: Our responses to Key Question #3, below, address many of these barriers.

How do these barriers vary by type of disability, gender, race/ethnicity, LGBTQ status, geographic location: the last several years have hopefully increased the health system’s understanding of systemic racism, sexism, and prejudice on the basis of LGBTQ+ status. It takes a tremendous amount of energy, determination, and time to push against a single provider, much less layers of hospital or managed care administration and insurance systems, to ask for the auxiliary communication aids and services, the reasonable accommodation, or the policy modifications that disabled people need to achieve equally effective healthcare. An individual who is unwell because of injury, a disease, or newly-acquired functional losses, is already disadvantaged in the battle for effective healthcare. Women, people of color, people with mental health conditions, transgender persons, wheelchaiar users, and many others, have long faced stigma and mistreatment in the health care system. When these individuals seek preventive care or routine care, they can be easily shortchanged the full gamut of preventive care because a provider deems it unnecessary, too troublesome to provide needed accommodations, or too time-consuming. When these individuals insist, they are called troublemakers, delusional, or hostile/violent.

2. What is the effectiveness (i.e., benefits and harms) of intervention programs to mitigate barriers to preventive service use among people with disabilities to include, but not limited to, the following:
   1. Environment-level (e.g., transportation)
   2. Person-level (e.g., fear, discomfort)
   3. Health system (e.g., insurance)
   4. Accessibility of health facilities
   5. Accessible communication
   6. Provider-level (e.g., disability knowledge and assumptions)
   7. How does effectiveness vary by type of disability, gender, race/ethnicity, LGBTQ+ status, geographic location

DREDF is unclear what this question is seeking. When we looked at the definition of “intervention programs” we saw that these include “include modification in policies, practices, and procedures; effective communication; and the physical accessibility of facilities.” We note that these are legally required accommodations under federal disability rights laws and are unclear why AHRQ is seeking how information about the harms of these practices, or who AHRQ things might be harmed when federal civil rights requirements are met. DREDF experience as a cross-disability advocacy organization since 1979 leads us to conclude that the capacity to bring private enforcement of disability non-discrimination law, as well as the laws’ implementation, monitoring, and enforcement by such federal agencies as the Department of Justice and the Office for Civil Rights of the Health and Human Services Agency are critical achieving increased access for people with disabilities to all manner of services, programs, and activities, including healthcare services. We recognize that harms may occur when there is inadequate or underfunded implementation, monitoring and enforcement, and could provide examples of that harm. Please let us know if that is the kind of information sought by AHRQ for this question as we are disinclined to speculate on how federal disability nondiscrimination laws that have been established for decades could, in themselves, be a source of harm that inhibits the use of preventives services by people with disabilities.

3. What are the characteristics and/or components (e.g., staffing, funding, facilities, training) that contribute to success or failure of intervention programs to mitigate barriers to preventive services among people with disabilities to include, but not limited to, the following:
   1. Environment-level (e.g., transportation)
   2. Person-level (e.g., fear, discomfort)
   3. Health system (e.g., insurance)
   4. Accessibility of health facilities
   5. Accessible communication
   6. Provider-level (e.g., disability knowledge and assumptions)
   7. How do the characteristics and/or components that contribute to success or failure of implementation programs vary by type of disability, gender, race/ethnicity, LGBTQ+ status, geographic location

Barriers disabled people experience when they seek preventive healthcare services are rooted in historical and widespread structural influences. Disability affects how one interacts with social institutions such as schools, employers, healthcare services, community infrastructure, and transportation. Barriers to full participation at this intersection lead to less education and employment, reduced community engagement, low-income status, and poorer health for disabled people. Similarly, the effects of disability can interact with other marginalized identities to compound inequities in social determinants of health (SDOH) and health disparities. Over the past two decades, these structural barriers have been identified repeatedly in extensively published peer-reviewed research by policy advocates, disability rights organizations, federal agencies, the courts, and others.

We urge AHRQ to recognize that while the issues enumerated in the draft questions are essential and relevant, the agency should also be inquiring in more depth about,

1. Disability discrimination and the prevalence and impact of ableism in healthcare services,
2. The impact on healthcare delivered to disabled people when demographic disability data is lacking in the electronic health records, and
3. Why federal agencies, healthcare education, licensing, accreditation bodies, and practitioners have failed to adopt the recommendations for reform that researchers, advocates, and some doctors and nurses have called for over decades.

Moreover, AHRQ should consider these and the other questions in a broader, more nuanced context that fosters an understanding of why these barriers stubbornly persist in the face of mounting evidence indicating they are responsible, in part, for the profound health and healthcare services inequities and disparities disabled people face. 

We also urge AHRQ to adopt as a framework for reform the expansive and nuanced definition of disability created by the World Health Organization (WHO) in 2001. The WHO conceived that “Disability results from the interaction between individuals with a health condition, such as cerebral palsy, Down syndrome and depression, with personal and environmental factors including negative attitudes, inaccessible transportation and public buildings, and limited social support.” This construction recognizes that how an individual with functional limitation interacts with the environment is the inflection point determining if the person experiences unfettered social inclusion or is barred from participation. For instance, disability is backgrounded when a Deaf transgender person communicates effectively with their hearing healthcare practitioner using a Sign Language interpreter. Conversely, disability is foregrounded when a Black wheelchair user confronts a flight of stairs with no ramp to a prenatal healthcare clinic or when a healthcare provider does not have an accessible exam table to transfer to from their wheelchair to receive a routine cervical cancer screening test. Thus, the WHO’s overarching definition of disability, which captures the nuanced interaction of functional limitation with diverse environmental factors, is an essential contextual starting point if AHRQ seriously intends to improve preventive care available to disabled people.

Discrimination and Ableism/Provider-level disability knowledge and assumptions: Historically, disabled people have faced discrimination in access to healthcare and have been excluded from receiving preventive and other healthcare services. Federal disability civil rights laws applying to healthcare service delivery and prohibiting disability discrimination include Section 504 of the 1973 Rehabilitation Act, the 1990 Americans with Disabilities Act (ADA), and the 2011 Affordable Care Act. Yet, disabled people are still significantly less likely to receive preventive care even though they experience higher rates of chronic disease than the general population.[1]

AHRQ suggests that “programs” exist that serve as interventions to mitigate barriers to care. Even as civil rights laws provide powerful tools to combat exclusion and discrimination, we respectfully suggest that there are very few “programs” nationwide that attempt to mitigate barriers to care. A few large medical centers have settled disability rights discrimination lawsuits and, as a result, have removed physical access barriers and created staff training and accessibility policies and procedures. Even in these settings, however, staff do not always willingly accept or embrace disability cultural competency and accommodations as necessary elements of best practices and effective care. Moreover, many have limited or no knowledge of the ADA or how it affects their practices.[2] Moreover, consistent civil rights and policy implementation is lacking and most of the recommendations aimed at specific institutions outlined in research over decades have been ignored.[3] For instance,

1. The need for federal leadership in requiring disability education by professional medical education programs and in licensing and certification
2. Healthcare provider and institutional implementation of barrier removal and accommodation policies and procedures
3. Incorporation of disability cultural competency in continuing education
4. Incentivizing assurance of accessibility features and provision of accommodations to achieve best practices in the care of disabled people
5. Adequate provider compensation for extended exam times and care of disabled patients with complex health issues, and
6. Enhanced disability rights compliance monitoring and enforcement.

According to current research, disabled people continue to experience inequitable preventive and other care because some healthcare practitioners refuse to accept them as patients, think that their quality of life is poorer than non-disabled people, and fail to recognize health conditions not related to disability, a phenomenon known as “diagnostic overshadowing” (i.e., the misattribution of symptoms to underlying disability).[4] Moreover, recent research has revealed that healthcare professionals openly acknowledged significant disability bias when interviewers told them they could speak candidly without fear of reprisals.[5] This study found that physicians hold preconceived misperceptions and negative attitudes about disability. For instance, some providers are hostile toward disabled patients and might refuse care because they take more time than other patients and sometimes request accommodations considered burdensome or that have costs attached.[6]

Accessibility of health facilities: We can say with certainty that most healthcare provider practices have little awareness that they should proactively remove barriers to care and provide accommodations for disabled patients because doing so is necessary for effective patient care but also is required by law. Physical barriers to effective care also remain widespread in provider offices. For instance, research on the presence of accessible medical diagnostic equipment (MDE) such as height-adjustable exam tables and accessible weight scales among 3993 Medicaid primary care practices in California found that only 19.1 percent had a height adjustable examination table, 10.9 percent an accessible scale, and 5.9 percent a patient lift.[7] A survey of primary care practice administrators, who often are responsible for equipment purchase, found that less than half knew accessible MDE existed.[8] Many healthcare providers do not collect routine information for disease management, such as patient weight for mobility device users who can’t stand on a conventional scale and no accessible scale is available. A recent study reported that “…physicians …reported sending patients to a supermarket, grain elevator, zoo, or cattle processing plant to obtain a weight.”[9]

Disability demographic data collection: The demographic functional limitation questions required by the Affordable Care Act and included in many federal population surveys are necessary population measurement tools that help researchers understand more about the health care and other experiences of people with specific impairments. Even though the standardized disability questions do not include certain functional limitations, such as communication, and therefore limit a complete understanding of the experiences of disabled people, they still are a critical starting point for improving preventive care for disabled people. However, most healthcare organizations primarily collect and report data that relies on diagnostic or procedural codes. They do not routinely collect self-identified disability functional limitation data.

Although diagnostic and procedural information helps practitioners provide quality patient care, these data do not capture the fundamental distinction between diagnosis and self-identified functional limitation, a defining element of accurate disability demographic identification. Moreover, disability cannot be indirectly inferred from diagnostic codes or most other data sources. Perhaps most important, the diagnostic code alone will not allow healthcare systems to understand or distinguish how people with multiple marginalized identities, including disability, are individually and collectively affected by historically racist, ageist, and ableist social systems. The lack of disability data in patient electronic health records (EHRs) and elsewhere is an obstacle to planning, arranging, and consistently providing legally required accommodations for disabled people necessary for equitable care and reducing health and healthcare disparities.

Recent research has provided specific examples of how diagnostic codes alone do not accurately predict disability. One study revealed that pregnant women with disability self-reported a higher prevalence of disability in a national survey than in other studies using diagnostic codes. This finding confirms that only a small number of disabled, pregnant women are identified using diagnostic codes alone.[10] Studies have shown that disabled women from every racial and ethnic group had a significantly higher likelihood of health risks before becoming pregnant than women who did not have a disability.[11] Pregnant women with disability are also at higher risk of poor outcomes than pregnant women without a disability. The absence of disability data makes it challenging to conduct research that correctly identifies this population, especially where race and disability intersect. The lack of such data also hampers our understanding of the health and healthcare disparities they experience, which would guide preventive measures and other interventions that would improve pregnancy outcomes.

The experience of people with many different disabilities during the Covid-19 pandemic also illustrates the problem when functional limitation information is unavailable in the EHR and elsewhere. The failure to identify people with disability demographically left advocates unable to pinpoint how COVID-19 affected this population group, including those living in the community who needed assistance with activities of daily living and could not simply isolate away from their personal care assistants.

If disability data were readily available from the patient record, it would facilitate a more granular and up-to-date analysis of the health status of disabled patients and a clearer understanding of their participation in preventive care compared with patients who do not have a disability. Such data would also enable researchers to identify certain SDOH affecting health equity, such as concerns about the cost of care, poor access to transportation, or ineffective provider-patient communication because ASL interpreters or extended exam time are unavailable. Researchers could also use the data to compare the health of disabled and non-disabled patients and explore with more accuracy how inequities manifest among other marginalized demographic groups when disability is also present. The data could reveal the SDOH that affect patients’ access to care and target needed clinical and non-clinical assistance such as medication management, nutrition support, home and community-based services, home modifications, or case management needed to coordinate services and supports. Moreover, when healthcare practitioners can easily access disability functional limitation information in the EHR, they likely will begin to see accommodations as a necessary element of best practices that they can arrange in advance rather than an unexpected imposition. For instance, a blind person is more likely to understand the need for a diagnostic procedure and complete it when they receive instructions in a print-accessible format such as digital or audio recording, and disparities that arise from inaccessibility are, therefore, more likely to be reduced.[12], [13]

Transportation: Barriers to care include the location of health care providers and the ability of disabled patients to travel to providers.[14], [15] Transportation disadvantage and geographic barriers are social determinants of health when patients skip, postpone, or miss appointments because of problems with transportation.[16] According to a 2017 national study, people with a functional limitation were 2.6 times more likely to report a transport barrier that caused a delay in care.[17] The Federal Highway Administration, classified 25.5 million people as having “travel-limiting disabilities” in 2017.[18] Even as travel for healthcare was not the most frequent reason for travel, disabled people with travel-limiting functional limitations reported double the number of trips for medical care.

Health system/insurance: Disabled people are slightly more likely to have health insurance than people who do not have disabilities. However, even with insurance, they encounter problems obtaining a usual source of care, timely access to basic needed care, and lower rates of cancer and other screenings and treatment. They also face widespread barriers to obtaining specialty services like rehabilitation, medical equipment, or personal care services at home.[19], [20], [21] Disabled people are twice as likely as people who do not have a disability to skip needed care because of cost, even if they have health insurance.[22] Affordable and comprehensive health insurance is necessary to achieve health and healthcare equity for most disabled people and ensure they have access to services that make living independently in the community possible.[23]

Intersectional demographic characteristics and access to care: The effects of disability can interact with other marginalized identities, including race, ethnicity, LGBTQ+ status, age, and geographic location, to compound inequities in SDOH and health disparities.[24] Health and healthcare inequities and disparities are also higher among some marginalized demographic groups than others and disability and society’s response tends to compound disparities within these groups. In addition to racism and other forms of marginalization and social exclusion, members of these groups who also have disability frequently encounter historical forms of disability bias and discrimination that have prevented access to key SDOH such as healthcare, jobs, and education and perpetuated poverty. For example, 14 percent of non-Hispanic whites with disability live below the federal poverty level compared with 6 percent of non-Hispanic whites without disability. Among disabled adults with American Indian, Alaska Native, Black, multiracial, and Hispanic identities, 21 to 34 percent live below the poverty level.[25]

Some studies have explored intersectional disparities among women with disability, including racial and ethnic differences in screening for breast and cervical cancer rates. One study reported that 51 percent of Black women with intellectual and developmental disability had received a mammogram during a two-year period compared with 76 percent of white women with the same disability.[26] Similar disparities were found in a study of Deaf women. Forty-four percent of Deaf Black or Hispanic women received a mammogram in the two prior years versus 70 percent of Deaf non-Hispanic white women.[27] Although disparities exist for both groups, higher disparities were found among Black or Hispanic Deaf women. Chronic health conditions and risk factors also are unevenly distributed among members of racial or ethnic groups who also experience disability. For example, 14 percent of non-Hispanic whites with disability have diabetes compared with 20 and 21 percent for blacks, Hispanics, and other multiracial groups. [28]

Research is limited about the health of people with one or more LGBTQI+ identities and who also have a disability. In one national study, disabled people who identified as LGBTQI+ reported higher instances of fair or poor health compared with those disabled people who identified as non-LGBTQI+. Those who identified as disabled and LGBTQI+ also reported encountering a healthcare provider who had refused to provide care.[29] In the most extensive national study of transgender individuals, 39 percent reported disability, and these individuals were six times more likely to have serious difficulty concentrating, remembering, or making decisions and four times more likely to have difficulty doing errands alone because of a disability as compared with transgender and gender nonconforming individuals who did not have a disability.[30]

These variations strongly suggest that health problems are not inevitable among disabled people but instead represent the effects of bias, discrimination, and disparities in income, education, access to healthcare, and other SODH. Even so, healthcare systems do not collect disability demographic data, yet who counts depends on who is counted.

4. General Comments on Key Questions

DREDF encourages AHRQ to undertake further efforts to obtain responses to the Key Questions that reflect the firsthand experiences of people with disabilities, who are the population most strongly affected by disability-related barriers and health and healthcare disparities. The relatively short timeframe for comments, limited distribution of the questions, and an apparent lack of targeted direct outreach to organizations that are run by people with disabilities and organizations that advocate and work with people with disabilities will all hamper AHRQ’s collection of relevant information to inform the agency’s awareness of how people with disabilities receive or do not receive preventive care.

Many disability organizations and advocates work together through such coalitions as  the Consortium for Constituents with Disabilities (CCD) which could have amplified AHRQ’s call for comments. Independent Living Centers and federally funded Protection and Advocacy Agencies, as well as the National Network of University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDDs) are all places that could have both responded to the Key Questions and publicized the Key Questions through their own member and advocacy networks.

Moreover, subpart e of Key Questions #1 and #2 recognizes that effective communication can act as a barrier that prevents the receipt of preventive health services, but there does not appear to be any particular effort to make the solicitation for information or the receipt of answers to the Key Questions accessible to Deaf persons who are best situated to provide full information when communication is possible through sign language. Similarly, there has been little effort made to solicit answers through a plain language version of the Key Questions which can be helpful to persons with cognitive disabilities, disabled people who have limited English proficiency, and Deaf individuals. Moreover, it is unclear that there has been outreach that would catch the attention of populations that could provide specific information about the barriers that affect people with specific types of disability, and/or also hold specific characteristics of gender, race/ethnicity, LGBTQ+ status, or living in particular geographic situations. If AHRQ requires information about disparities and the impacts of the limited attempts made so far to reduce healthcare disparities for people with disabilities, including those who have intersectional characteristics, before it can undertake action to mitigate those disparities, it must make more deliberate and thoughtful attempts to reach the population groups in questions.

Thank you again for the opportunity to provide input on AHRQ’s Key Questions. Please feel free to contact Silvia Yee or Mary Lou Breslin at DREDF if you seek any clarification on the above.

Yours truly,

Silvia Yee
Senior Staff Attorney

Mary Lou Breslin
Senior Policy Advisor

[1] Mitra, M., L. Long-Bellil, I. Moura, A. Miles, and H. S. Kaye. 2022. Advancing Health Equity And Reducing Health Disparities For People With Disabilities In The United States, Health Aff (Millwood), 41: 1379-86.

[2]  Iezzoni, L. I., S. R. Rao, J. Ressalam, D. Bolcic-Jankovic, N. D. Agaronnik, T. Lagu, E. Pendo, and E. G. Campbell. 2022. US Physicians’ Knowledge About The Americans With Disabilities Act And Accommodation Of Patients With Disability, Health Aff (Millwood), 41: 96-104.

[3] National Council on Disability. 2022. Health Equity Framework for People with Disabilities. https://ncd.gov/sites/default/files/NCD_Health_Equity_Framework.pdf

[4] Ward, C.D., Koenig, K.T., Hasche, J.C., Loganathan, S., and Guerino, P. 2017. Does Disability Affect Receipt Of Preventive Care Services Among Older Medicare Beneficiaries? CMS OMH Data Highlight No. 8. CMS Office of Minority Health.

[5] Lagu, T., C. Haywood, K. Reimold, C. DeJong, R. Walker Sterling, and L. I. Iezzoni. 2022. I Am Not the Doctor for You: Physicians’ Attitudes About Caring For People With Disabilities, Health Aff (Millwood) 41, no. 10: 1387-95.

[6] T. Lagu, et al., ‘I Am Not the Doctor for You.’

[7] Mudrick, N.R., Swager, L.C., Breslin, M.L. 2019. Presence Of Accessible Equipment And Interior Elements In Primary Care Offices, Health Equity, 3(1):275-9.

[8] Pharr, J. Accessible Medical Equipment For Patients With Disabilities in Primary Care Clinics: Why Is It Lacking? 2013. Disabil Health J. 6(2):124-32.

[9] T. Lagu, et al., ‘I Am Not the Doctor for You.’

[10] Horner-Johnson, W., Dissanayake, M., Marshall, N. et al. 2022. Perinatal Health Risks And Outcomes Among U. S. Women With Self-Reported Disability, 2011–19. Health Affairs, vol. 41, no. 10: 1477-85. 

[11] Horner-Johnson, W., Akobirshoev, I., Amutah-Onukagha, N. et al., Preconception Health Risks Among U.S. Women: Disparities At The Intersection Of Disability And Race Or Ethnicity, Womens Health Issues, vol. 31, no. 1: 65-74.

[12] Krahn, G. L., Walker, D. K. Correa-De-Araujo, R. 2015. Persons With Disabilities As An Unrecognized Health Disparity Population. American Journal of Public Health, vol. 105, suppl. 2: S198–S206.

[13] Horner-Johnson, W. et al., Disability, Intersectionality, And Inequity: Life At The Margins.

[14] Henning-Smith, C. 2020. The Public Health Case For Addressing Transportation-Related Barriers To Care, Am J Public Health, 110(6):763-4.

[15] Wolfe, M.K., McDonald, N.C., Holmes, G.M. 2020. Transportation Barriers To Health Care In The United States: Findings From The National Health Interview Survey, 1997-2017, Am J Public Health, 110(6):815-22.

[16] U.S. Department of Health & Human Services OoDPaHP. Access to Health Services n.d. [Available from: https://health.gov/healthypeople/objectives-and-data/social-determinants-health/literature-summaries/access-health-services.

[17] Wolfe, M.K. et al., Transportation Barriers To Health Care.

[18] Brumbaugh, S. Travel Patterns Of American Adults With Disabilities. 2018. In: U.S. Department of Transportation BoTS, editor. Washington, D.C.

[19] Henry, A., Long-Bellil, L., Zhang, J., Himmelstein, J. 2011. Unmet Need For Disability-Related Health Care Services And Employment Status Among Adults With Disabilities In The Massachusetts Medicaid Program. Disabil Health J., 4(4):209-218.

[20] Parish, S.L., Ellison-Martin, M.J. 2007. Health-Care Access Of Women Medicaid Recipients: Evidence Of Disability-Based Disparities, J Dis Policy Stud., 18(2):109-116.

[21] Mitra, M., Bogen, K., Long-Bellil, L., Heaphy, D. 2011. Unmet Needs For Home And Community-Based Services Among Persons With Disabilities In Massachusetts, Disabil Health J., 4(4):219-228. 

[22] Horner-Johnson, W. Disability, Intersectionality, and Inequity: Life at the Margins.

[23] Kennedy, J., Wood, E.G., Frieden, L. 2017. Disparities In Insurance Coverage, Health Services Use, And Access Following Implementation Of The Affordable Care Act: A Comparison Of Disabled And Nondisabled Working-Age Adults. Inquiry, Jan-Dec;54:46958017734031.

[24] Yee, S., Breslin, ML, Goode, T. et al. 2017. Compounded Disparities: Health Equity at the Intersection of Disability, Race, and Ethnicity, Nat’l Acads. Sci., Eng’g, & Med.

[25] National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Population Health and Public Health Practice; Committee on Community-Based Solutions to Promote Health Equity in the United States; Baciu A, Negussie Y, Geller A, et al., editors. Communities in Action: Pathways to Health Equity. Washington (DC): National Academies Press (US); 2017 Jan 11. 2, The State of Health Disparities in the United States. Available from: https://www.ncbi.nlm.nih.gov/books/NBK425844/

[26] Parish, S. W., Swaine, J.G., Son, E., Luken, K.  2012. Receipt Of Mammography Among Women with Intellectual Disabilities: Medical Record Data Indicate Substantial Disparities For African American Women, Disability and Health Journal, vol. 6, no. 1, 36-42. https://pubmed.ncbi.nlm.nih.gov/23260609/.

[27] Berman, B. A., Jo, A., Cumberland, W.G. et al., 2013. Breast Cancer Knowledge And Practices Among D/deaf Women, Disability and Health Journal, vol. 6, no, 4: 303-316. https://doi.org/10.1016/j.dhjo.2013.05.001.

[28] Centers for Disease Control and Prevention. 2019. Disability and Health Data System.

[29] Horner-Johnson, W. Disability, Intersectionality, And Inequity: Life At The Margins.

[30] Meyer, C. 2018. Health Disparities At The Intersection of Disability and Gender Identity: A Framework and Literature Review,” Disability Rights Education and Defense Fund. https://dredf.org/health-disparities-at-the-intersection-of-disability-and-gender-identity/#_ftn1.