Help Make Health Care Accessible and Fair for People with Disabilities

People with disabilities have historically faced many barriers to getting healthcare. For example, doctors and hospitals can be reluctant to pay for sign language interpretation or accessible medical equipment, and don’t want to spend the time to train employees on disability bias or on how to make sure disabled people get the accommodations they need for effective appointments and care. People with disabilities and their families are also commonly barred from getting and keeping health insurance, or they are charged high premiums and co-pays merely because they have a disability.

The Affordable Care Act (ACA) includes different tools to help fix some of these problems. One important tool is Section 1557, which can be used by people with disabilities and others who are unfairly denied timely and appropriate healthcare because of personal characteristics to fight discrimination in health care. Right now, the Biden administration is working to further strengthen Section 1557 by proposing an updated regulation. Your comments on the proposed rule, and especially, your story of a time when you could not get health care or health insurance or accommodations for your disability, can help the proposed rule become law or even make the final rule better.

Why is Section 1557 Important?

Section 1557 prohibits discrimination in health care based on factors like race, ethnicity, language, age, disability, and sex – including pregnancy, sexual orientation, and gender expression. Section 1557 also can protect people who are disabled and have another intersecting listed characteristic from discrimination under the law.

Who Should Comment?

We call on individuals with disabilities, or individuals with disabled family members, to send in comments that describe the barriers encountered when trying to get health care. Tell the Biden administration that you support the proposed rule because it will help reduce the kinds of barriers that keep you from getting the health care you need. Please share your experiences if, in addition to being disabled, you are a person of color, an older person, a woman, a member of the LGBTQ+ community, or someone with a primary language other than English (including sign language) and believe you have experienced discrimination or unequal care because of these intersecting characteristics.  Your comments could include descriptions of one or more of the following topics:

  • Any time when you or someone you know has not gotten a full exam, been weighed, given a scan, or denied an appointment because of a disability

  • How your health care provider, clinic, hospital, or health plan gives or fails to give you information about your rights as a disabled person to sign language, accessible formats such as Braille or large font, and accommodations or policy modifications

  • Your experience of being treated unfairly in your health care system

  • Policies at your provider or hospital that stopped you from getting needed assistance, such as a “no visitor” policy during the pandemic, or from getting equal health care, such as a hospital or state’s crisis standard of care

  • Any time(s) when you sought health care and were treated badly because of a disability or for more than one reason

  • Any time that you experienced delay seeking health care, or were charged extra costs (e.g., premiums, copays, co-insurance, coverage limits) that a non-disabled person would not have, and the impacts of that delay or extra cost

  • The health care services, therapy, medicines, or durable medical equipment (e.g., ventilator, wheelchair) that you need but that your insurance does not cover

  • Your knowledge of how to appeal a health care insurer, plan, or agency’s refusal to provide you with needed health care (please include why you medically needed the health care), and what happened if you have ever tried to bring an appeal

When you are in the middle of a health crisis it’s hard to find time to record what you are going through. Once the crisis is past, you may want to put it behind you and get on with the rest of your life. But people with disabilities face systemic barriers and bias in health care that have hurt the disability community for decades. Proving that and getting the strong laws we need requires us to take action together to show that the problems are systemic and not just one individual or family’s bad luck.

Click here for more Sec. 1557 resources