Health care access gaps for people with disabilities

“Health information needs to be clearly communicated and be made available in a language people can fully understand,” McKee said.

“Providing information in ASL, allotting extra time for health care visits, and ensuring access to qualified interpreters or ASL-fluent clinicians can help Deaf patients make more informed decisions and improve their health.”

Supporting blind and low-vision patients in navigating health care environments

To improve support for people who are blind or have low vision to navigate health care facilities, clinician-researchers at Michigan Medicine developed a guide training program for hospital volunteers and staff focused on safe, respectful support to help patients get around health care facilities.

In an evaluation of the program led by Tyler G. James, Ph.D., M.S., assistant professor of family medicine, staff participants said the training significantly improved their knowledge and confidence in assisting patients.

The researchers noted that while training is a key step, continued efforts to remove physical barriers and improve wayfinding tools will be essential to ensuring blind or low-vision patients can move through health care environments safely and independently.

“Supporting accessibility starts before a patient comes through the door. It starts with intentional design of our physical spaces and ensuring our staff and volunteers are appropriately trained,” James said.

“Simple skills like announcing yourself and describing the environment can improve patient experience. These are practical techniques that every health system can incorporate into routine staff training.”

Preparing clinicians to provide disability-inclusive care

A recent national survey co-authored by Claire Kalpakjian, Ph.D., professor of physical medicine & rehabilitation, finds that many obstetrics and gynecology resident physicians feel underprepared to care for pregnant people with physical disabilities, despite this population’s higher risk of complications.

Among 88 residents across the country, only 8% reported receiving disability-specific training in residency, and fewer than half (44%) said they had received such education in medical school.

Residents reported low comfort performing key aspects of care, with 73% feeling uncomfortable positioning patients for pelvic exams and 89% unsure about making recommendations about mode of delivery, such as whether a vaginal birth or cesarean section would be appropriate.

Yet even limited training was associated with improved confidence, and over 92% of residents expressed a strong desire for more education.

“Pregnant people with disabilities deserve clinicians who are confident, competent and prepared to provide high quality care,” Kalpakjian said.

“Both people with disabilities and clinicians are disadvantaged by a significant gap in training. Fortunately, residents are eager for education that helps address those gaps. Disability-inclusive obstetric care can’t be left to chance; it must be built into curricula, simulations, and mentorship.” 

A separate national survey also authored by Kalpakjian underscores why this training matters for patients.

Women with physical disabilities reported gaps in practical pregnancy information—especially about adapting as their bodies changed (54.4% reported having the least knowledge) and what infant care equipment they might need (57.9%).

While most had some to a lot of confidence (66.7%) in health care providers’ recommendations, experiences varied in how well providers understood their disability-related concerns.

Planning for disability support in community health systems

Community Health Needs Assessments are meant to guide local decisions about health priorities and resources, yet a recent analysis by Tyler G. James, Ph.D., M.S., of 77 CHNAs in Florida found that people with disabilities are often missing from these planning efforts.

While most assessments mentioned “disability,” few included data on specific disability types, defined how disability was measured, or engaged disability-focused organizations in the process.

For instance, less than half of nonprofit hospital CHNAs (47%) consulted groups such as Centers for Independent Living, and only 23% reported on Americans with Disabilities Act compliance.

Mental health conditions were commonly tracked, but cognitive, sensory, and mobility disabilities, which more broadly affect daily functioning, were frequently overlooked.

“People with disabilities make up more than a quarter of U.S. adults, yet their health needs are too often not adequately considered in local planning,” said James.

“Including disability data and lived experience in CHNAs is essential for ensuring that every community member is represented when health priorities are set and resources are allocated.”

How health insurance policies and coverage influence access to care

Preventive health care gaps for adults with disabilities

Adults with functional disabilities use health care more often than adults without disabilities, but a large national study suggests that more care does not necessarily mean better or more appropriate care.

Using data from nearly 190,000 U.S. adults, a JAMA Network Open study led by A. Mark Fendrick, M.D., professor of internal medicine and director of the Center for Value-Based Insurance Design, found that adults with severe functional disabilities were more likely than those without disabilities to receive routine care, such as tests or medications that can be provided during a regular doctor visit, but were less likely to receive important preventive services like cancer screenings, that often require separate appointments or coordination.

Higher overall health care use also did not mean medical needs were consistently met. Instead, ease of access played a major role in whether people received both high- and low-value care.

“Our findings highlight the importance of health policies that make recommended, high-value care easier to access for people with disabilities, while reducing reliance on low-value services,” said Fendrick.

“Improving access to recommended preventive services, including those that are not easily performed during a routine clinician visit may help better align care with individuals’ needs.”

Medicaid coverage changes could disrupt essential health care for older adults and people with disabilities

During the COVID-19 public health emergency, states paused Medicaid eligibility redeterminations, allowing millions of people, including many with disabilities, to maintain continuous coverage.

As those protections have ended and the Medicaid “unwinding” continues, a policy analysis published in the Journal of the American Geriatrics Society by Renuka Tipirneni, M.D., M.Sc., associate professor of internal medicine, and colleagues suggests that adults over age 65 and people with disabilities are especially vulnerable to losing coverage.

These individuals are often enrolled in Medicaid through pathways that do not rely on income alone, known as “non-MAGI” (Modified Adjusted Gross Income) eligibility, which typically includes people who qualify based on disability status or who need long-term services and support.

Because many rely on Medicaid for help with daily care and to pay Medicare premiums, deductibles and copayments, even short gaps in coverage can disrupt essential health care services.

Despite how important it is for older adults to maintain Medicaid coverage when eligible, another study by Tipirneni and colleagues found that half of older adults with low incomes did not know they had to renew this coverage every year.

“It is important for coverage policies and renewal processes to support continuity of care for older adults and people with disabilities,” Tipirneni said.

“Streamlined, accessible renewal systems can help ensure eligible individuals retain the services they rely on to stay healthy and independent in the community.”

From paper to practice: Aligning policy and lived experiences

Research and policy engagement by U-M faculty aims to improve health care for people with disabilities by strengthening accommodations, communication access, physical environments, and insurance policies and coverage that support safer, higher quality care.

By centering the experiences of people with disabilities, this work is informing changes in preventive care, provider training, and policy that enhance daily life and promote better health.

Explore more disability-focused work from IHPI experts across disciplines and care settings, and visit the U-M Center for Disability Health and Wellness to learn more about research and resources dedicated to improving access and outcomes for people with disabilities. 

Articles & reports cited

Experiences of disability after 50: Poll looks at self-identity and help with health care visits

Self-Reported Accommodation Needs for Patients with Disabilities in Primary Care. The Joint Commission Journal on Quality and Patient Safety. 

Predictors of health literacy among Deaf American Sign Language users. Patient Education and Counseling.

Human Guide Training to Improve Hospital Accessibility for Patients Who Are Blind: Needs Assessment and Pilot Process Evaluation. JMIR Rehabilitation and Assistive Technologies. 

Obstetrics and Gynecology Resident Comfort in Caring for Pregnant People with Physical Disabilities. American Journal of Perinatology.

Pregnancy Decision-Making Among Women With Physical Disabilities: Cross-Sectional Survey Study. BJOG.

Analysis of Community Health Needs Assessments (CHNAs) in Florida and disability inclusion. SAGE Journals.

Health Care Utilization Patterns Among Adults With or Without Functional Disabilities. JAMA Network Open. 

Use of preventive service and potentially preventable hospitalization among American adults with disability: Longitudinal analysis of Traditional Medicare and commercial insurance. Preventive Medicine Reports.  

Older adults and people with disabilities are at risk for Medicaid disenrollment. Journal of the American Geriatrics Society.

Medicaid Unwinding Experiences in Dual-Eligible Older Adults. JAMA Health Forum.