Health Equity at DRM

Health Care Access for People with Disabilities

Disability Rights Maine (DRM), with funding from the Maine Health Access Foundation, conducted a research project that identified the barriers to accessing health care for Maine people with disabilities.

We are pleased to share the report: "I Don't Get the Care I Need": Equitable Access to Health Care for Mainers with Disabilities (PDF).

The report is also available in a plain language summary (Word).

Questions about the report? Please reach out to Jen Battis at

Issue Briefs

What we learned in our report can be grouped into five topic areas. For more information click on each topic area to expand.

Data Collection

What did we learn?

  • 16% of Maine’s population has one or more disabilities. This is higher than the United States as a whole. Where an estimated 13% of residents have a disability. [1]
  • Piscataquis County, the least populated county in Maine, has the highest percentage of people with disabilities (26%).
  • The US Census Bureau’s American Community Survey’s survey design provides estimates of disability characteristics that draw from smaller sample sizes, resulting in higher margins of error (the degree of uncertainty results may have).[2]
  • Issues in survey design, access to healthcare, and stigma and discrimination lead to challenges in collecting accurate and representative data on disability and health.

[1] From the US Census Bureau: The civilian non-institutionalized population are those persons 16 years of age and older residing in the 50 states and the District of Columbia, who are not inmates of institutions (e.g., penal and mental facilities, homes for the aged), and who are not on active duty in the Armed Forces.

[2] Research and Training Center on Disability in Rural Communities. “Data Limitations in the American Community Survey (ACS): The Impact on Rural Disability Research.” Missoula, MT: The University of Montana Rural Institute for Inclusive Communities, 2017.

What should we do?

  • People should always ask about disability when they collect information in surveys or other formats for statistics or research and include it in their reports.
  • The statistics about people with disabilities should be kept updated and available for everyone to look at.
  • People with disabilities must be included in making decisions and understanding information about public health.

Download the Data Issue Brief (PDF) to learn more.

Provider Education

What did we learn?

  • Doctors and nurses do not receive enough training about disabilities, or working with people with disabilities. This can lead to mistakes in diagnosing, delays in getting the right treatments, and other problems for patients with disabilities.
  • Recent studies have shown that doctors themselves have concerns, biases, and are hesitant to take care of people with disabilities. [1]
  • About 38% of people who took our survey said that doctors and medical staff do not have the right training to treat them properly. 38% is around 200 people.
  • In group discussions, people shared how health care providers are not educated and prepared to treat people with disabilities. This includes doctors, nurses, assistants, and staff at the front desk and people who handle administrative tasks.

[1] Lagu, T., Haywood, C., Reimold, K., DeJong, C., Walker Sterling, R., & Iezzoni, L. I. (2022). ‘I Am Not The Doctor For You’: Physicians’ Attitudes About Caring For People With Disabilities: Study examines physician attitudes about caring for people with disabilities. Health Affairs, 41(10), 1387-1395.

What should we do?

  • Doctors and nurses should be trained to give good care to people with all kinds of disabilities.
  • People with disabilities must be involved in curriculum development for medical schools. That means they have a say about what is taught in schools and training programs for doctors, nurses, dentists and other people who work in health care.
  • We should have more people with disabilities working in health care.
  • We need to make sure that the care given to people with disabilities is really good.

Download the Provider Education Issue Brief (PDF) to learn more.

Structural and Systemic Barriers to Care

What did we learn?

  • More than half of the people who took our survey said in the past five years, there was a time when they needed health care but could not get it.
  • About 20% of people who said they could not get health care said it was because the cost was too much or their insurance would not cover the treatment they needed.
  • The health care system is made up of many separate parts, which can make it hard for people with complex health care needs. Some people in the group discussions talked about how their health care providers do not communicate well with each other. This communication problem causes them delays and confusion in getting care.
  • Some people do not have good options for public transportation. It might not be available or it might not be accessible for them to use. Transportation problems came up in every group discussion.

What should we do?

  • We should have more money, help, information, and advice available to give better care to people with disabilities.
  • People with disabilities and their families or caregivers should have support and help to find their way through the health care system.
  • We need to find ways to make it easier and faster for people with disabilities to get the care they need. This includes better communication between doctors, easier insurance processes, and more ways to get from one place to another (like cars or buses).

Download the Structural & Systemic Barriers to Care Issue Brief (PDF) to learn more.


What did we learn?

  • Almost half of the people (44%) who took our survey said it was hard to talk to their doctors. Common problems included:
    • Feeling unheard or not believed;
    • Not being spoken to directly; and
    • A lack of accommodations to communicate effectively. Examples of these accommodations might include masks with a see-through window, longer appointments, and online portals that can be used with a screen reader.
  • More than 20% of people who took our survey said providers do not:
    • Listen to what is worrying them;
    • Explain their diagnosis or condition;
    • Answer their questions; and
    • Involve them in making choices about their health.
  • Communication issues were talked about a lot in every group discussion.
    • Many people thought this was because doctors do not know how to talk to people with disabilities.
    • Many people said they feel rushed during appointments and do not have enough time to talk about everything they want to talk about.
    • Deaf and Hard of Hearing ASL signers shared they are not getting the interpretation services they needed.

What should we do?

  • Doctors and nurses should learn how to talk respectfully and patiently to patients with disabilities.
  • People with disabilities should be part of the groups that make decisions about policies and rules so that their communication needs are understood.
  • People with disabilities should know their rights and what to do if their rights are violated.
  • All of the things we use to talk and share information, like forms and instructions, should be easy for everyone to understand and use.
  • When health care workers talk to patients, they must think about how to communicate clearly and keep information private.

Download the Communication Issue Brief (PDF) to learn more.

Physical Space

What did we learn?

  • About one out of every five people who took our survey said the places where they go to get health care are not accessible or safe.
  • Many people said it is hard for them to get into buildings and find their way around the different rooms and areas.
  • Some people in the group discussions said they could not get the tests or treatments they needed because the medical equipment was not made for people with disabilities. This was especially true for people with physical disabilities.
  • People in the group discussions who have mental health diagnoses or labels or are blind or low vision talked about privacy issues. They said:
    • The places where they have exams are not private.
    • They have to fill out forms where others can see or hear their answers to the questions while someone reads the questions.
    • Their doctors talk to them in hallways instead of private spaces.

What should we do?

  • Create and improve ways for patients to tell doctors and staff the accommodations they need.
  • Make sure all health care organizations have the tools, assistive devices, and accessible medical equipment they need to make sure everyone can have access to all health screenings, test, and treatments.
  • Make sure medical offices, their parking lots, exam rooms, and medical equipment are useable by people with disabilities. This may mean making some new accessibility requirements that are better and stronger than the Americans with Disabilities Act (ADA). Tell patients about the services within the health care organization that can help them with accessibility.

Download the Physical Spaces Issue Brief (PDF) to learn more.