How to educate your audience about disparities in care for people with disabilities

The pandemic illuminated the persistent bias against patients with disabilities, prompting the Biden administration to boost anti- discrimination protections in federal programs.

Yet obtaining equitable care remains an often-silent struggle for people with disabilities, whom the National Council on Disability, a federal advisory group, called "the largest unrecognized minority group in this country."

Here are tips for educating the public about the challenges of people with disabilities navigating the health care system.

Know anti-discrimination laws.

Three main laws protect the civil rights of people who are disabled in health care.

1. Section 504 of the Rehabilitation Act (Rehab Act) (1973) -Prohibited discrimination against people with disabilities by the federal government and entities that received federal funds, including hospitals and doctors that accept Medicare and Medicaid.
2. The Americans with Disabilities Act(ADA) (1990) - Extended protections to all public services and places of public accommodation, including medicare care. Required health care providers to make reasonable modifications to provide equal access to facilities and services to people who are disabled.
3. Section 1557 of the Affordable Care Act (ACA) (2010) - Prohibited discrimination including on the basis of disability in federally funded programs. Each presidential administration has changed the regulations to carry out the law.

Cover the impact of new regulations.

The Biden administration enacted a new rule updating Section 504 of the Rehab Act for the first time since 1977. It added significant new requirements for providers:

• Medical treatment. Stipulates that treatment decisions should not be based on bias or stereotype about a person's disability, a judgment that an individual with a disability will be a burden on others, or a belief that the life of a person with a disability has less value than the life of a person without a disability.
• Medical equipment. Requires that all facilities have medical diagnostic equipment available, such as exam tables and mammography machines, according to U.S. Access Board standards.
• Websites, self-service kiosks and mobile applications. Prescribes an internationally recognized accessibility standard, Web Content Accessibility Guidelines (WCAG) 2.1.
• Value assessment. Prohibits valuing medical treatments using methods that discounts life extensions for people who are disabled. For example, a drug formulary or utilization management plan can't use a method that assigns a lower value to extending the lives of people with cystic fibrosis than it does to extending the lives of people without cystic fibrosis.

Questions to ask

• How do these new standards affect people with disabilities?
• How are health systems meeting challenges such as making diagnostic equipment accessible and implementing non-discriminatory clinical decision-making?

From a provider viewpoint, the Disability Equity Collaborative has a network of more than 50 health care systems that are working on providing disability accessible care. Journalists can access its webinars and newsletter.

Track enforcement.

The HHS Office of Civil Rights enforces laws that apply to recipients of federal funds. It may refer cases to the Department of Justice.

Examples of allegations from recent news releases:

• A New Jersey imaging center denied a mammogram to a woman who uses a wheelchair.
• A Massachusetts skilled nursing facility refused to admit people who were being treated for opioid use disorder.
• A Michigan surgery center declined to provide bariatric surgery to a man with HIV.
• Two Maryland hospital systems, MedStar Health and the Johns Hopkins Health System, barred support people from accompanying patients with developmental and communication disabilities.

Cover the consequences of a legal setback.

The ability of private plaintiffs to seek redress for illegal disability discrimination was curtailed by a 2022 U.S. Supreme Court decision that barred compensation for emotional distress. Since people who are disabled seldom claim financial damages, this was a significant blow.

The ruling "effectively closes the courthouse door to many individuals who experience unlawful discrimination by health providers," one analysis said. So far, Congress hasn't passed legislation to restore emotional distress damages for people with disabilities.

Cover front-burner policy challenges.

The National Disability Council issues reports about barriers to equitable care:

• People with disabilities are routinely excluded from clinical trials.
• Disability is not systematically recorded in health care records, hindering quality and safety measurement.
• Training to dismantle bias among medical professionals is scarce.
• Marketing of prenatal technologies perpetuates stereotypes and fears about disability.
• The needs of people with disabilities are overlooked in disaster management planning.
• Dental care continues to lag for people with intellectual and developmental disabilities. (See also this 2018 AHCJ article.)

Read academic studies.

Do U.S. hospital websites provide sufficient information about their accommodations for people with disabilities to make informed choices about where to seek care? A recent study of 600 hospitals suggests not. It found that hospitals often provided sparse information about accommodations on their websites.

That's one example of how academic studies can reveal structural barriers and biased attitudes that burden people with disabilities.

Other recent study findings that may suggest story ideas:

• During the pandemic COVID-19 patients with Down syndrome were six times as likely as other patients to have a do-not-resuscitate status issued upon hospital admission.
• Black and Hispanic adults with disabilities are more likely to forego or delay care as Black and Hispanic adults without disabilities.
• Nearly 36% of outpatient physicians surveyed reported knowing little or nothing about their responsibilities under the ADA.

Reach out to real people.

Many organizations can connect you with people who experience the direct impact of structural ableism - policies and practices that stem from the idea that the "normal" able body is better.

One place to start is the more than 400 Centers for Independent Living (CILs) that serve communities throughout the United States and its territories. These private, not-for-profit organizations are run by and for people with disabilities and offer a variety of services, including advocacy, peer support and role modeling.

Other sources

• Local ADA Centers
• Advocacy organizations such as The Arc (intellectual and developmental disabilities), the American Association of People with Disabilities, the American Association on Health & Disability, Hearing Loss Association
• The National Center for Disability, Equity, and Intersectionality.

Go for it.

"Don't be afraid to write about disability," reporter Joe Shapiro advises in this informative NPR video guide to reporting on disability. It offers tips for conundrums such as deciding between identity-first and person-first terminology and avoiding demeaning language.