CW: Ableism
The federal government finally acknowledges what disabled people have been saying for years: you can’t improve healthcare accessibility without knowing who’s being left out. A recent Government Accountability Office (GAO) review shows that major federal agencies still lack consistent, reliable disability data. This impacts every part of the healthcare system.
When agencies do not know how many disabled people are impacted, what barriers they face, or where accessibility failures occur, it becomes nearly impossible for them to enforce civil rights protections or create effective policies.
This isn’t just a bureaucratic mistake. It affects patients directly in exam rooms, where they find equipment they can’t use, providers who aren’t trained to meet their needs, and clinics that don’t follow accessibility laws.
In my experience, I have visited two medical facilities with wheelchair-accessible scales, but neither had any other accessible equipment. I cannot transfer independently, and without a personal care assistant (PCA) or family member, I wouldn’t be able to complete my appointment. These are basic needs for routine care, yet they remain out of reach because the system is not designed for disabled people and nobody tracks the problem.
The lack of data worsens due to a lack of education. Medical schools provide little information about patients with intellectual and developmental disabilities. Out of 155 medical schools in the United States, 30 do not offer any courses on these disabilities. Those who do often treat these courses as electives instead of core requirements.
Given the limited education about disabled people in American medical schools, it is no surprise that many physicians feel uncomfortable treating disabled patients. A 2021 study shows that 82% of physicians believe that people with significant disabilities have a lower quality of life compared to those without disabilities, and only 57% say they welcome disabled patients. When the people responsible for care train in environments where disability is rarely addressed, it becomes easier for bias to go unchallenged and for inaccessible practices to continue.
The GAO report shows that agencies like the Department of Health and Human Services (HHS) and the Centers for Medicare & Medicaid Services (CMS) depend on outdated or incomplete data. Therefore, disability information varies widely across programs. Without standardized data, inequities remain hidden. Civil rights enforcement becomes reactive instead of proactive. Policymakers cannot spot patterns of discrimination or measure whether accessibility efforts are effective. Disabled people navigate a system that treats accessibility as optional rather than essential.
What the GAO advocates for isn’t complicated: better coordination, standardized data collection, and a commitment to using that data to assess accessibility and compliance. But the results could be transformative. With accurate information, agencies could pinpoint where barriers are most severe, hold providers accountable, and create policies that reflect the realities faced by disabled people.
Improving disability data may not grab headlines, but it is one of the most important steps the government can take toward health equity. When you count people, you make them visible. When you make them visible, you can start to build a system that includes them. Disabled people deserve a health care system that genuinely recognizes them—not as an afterthought, but as a community with needs that matter and rights that need protection.
Sources:
Beddawi, Adam. “Major Gaps in Federal Health Care and Disability Data, GAO Finds.” Prism, 16 Feb. 2026, https://prismreports.org/2026/02/16/disability-data-health-care-accessibility/.
Teeple, Erin, et al. ‘Outcomes of Safe Patient Handling and Mobilization Programs: A Meta-Analysis’. Work, vol. 58, IOS Press, 2017, pp. 173–184, https://doi.org/10.3233/WOR-172608.
Zerbo, Ousseny, et al. ‘A Study of Physician Knowledge and Experience with Autism in Adults in a Large Integrated Healthcare System’. Journal of Autism and Developmental Disorders, vol. 45, no. 12, Dec. 2015, pp. 4002–4014, https://doi.org/10.1007/s10803-015-2579-2.
Santra, Romila. “U.S. Medical Schools Aren’t Teaching Future Doctors about 7.4 Million of Their Patients.” STAT, Boston Globe Media , 8 Dec. 2023, http://www.statnews.com/2023/12/11/medical-schools-idd-education-intellectual-developmental-disabilities-patients/.