‘Lifesaving’: Advocates for those with disabilities hail rule to bar discrimination in healthcare

The federal government has proposed a new rule that is designed to prohibit discrimination against individuals with disabilities in healthcare. (Image credit: ©Johnstocker - stock.adobe.com)

Individuals with disabilities have long faced obstacles in getting healthcare, and advocates say they hope a new federal proposal could reduce some of those barriers.

The federal government has proposed new measures to ensure those with disabilities aren’t discriminated against when it comes to healthcare.

The U.S. Department of Health and Human Services last week announced a proposed rule that prohibits discrimination in healthcare decisions or services on the basis of disability. The proposal is expected to be published in the Federal Register on Sept. 14, and the department is inviting public comments for 60 days.

Maria Town, president of the American Association of People with Disabilities, said that the proposal is nothing short of “lifesaving.”

In a statement, she said the proposal will help improve health equity for individuals with disabilities.

“Despite the fact that people with disabilities are more reliant on our health care and human services systems and experience some of the greatest healthcare costs, our healthcare system routinely discriminates against disabled people in a multitude of ways,” she said in a statement. “From inaccessible doctors’ offices and examination equipment, to a lack of access to effective communication, to physicians who believe that people with disabilities have an inherently lower quality of life than those without disabilities and base treatment decisions off of this inaccurate bias.”

The health department says that the proposed rule is necessary to clarify some important protections. Specifically, it spells out that agencies or organizations receiving federal aid from the health department can’t deny services or set up roadblocks to treatment.

In a section of the rule focused on medical treatment, the federal proposal calls for ensuring that decisions in healthcare, including areas such as organ transplants or life-sustaining treatment, aren’t based on biases or stereotypes about individuals with disabilities.

• Read more: Medical education programs must do more to support residents with disabilities

The federal proposal also would prohibit providers from discriminating against individuals with disabilities in value assessment methods used to contain costs. The department notes that such methods could place a lower value on extending the lives of patients with disabilities, leading to the denial of services or aids.

Federal officials say the rule also spells out more clearly that web content and mobile applications must be fully accessible to individuals with disabilities. Such considerations could also be applied to self-service kiosks.

The health department also proposes enforceable standards to ensure patients can use accessible medical diagnostic equipment, which the government concedes is a problem for those with disabilities. The HHS cites common hurdles such as exam tables that can’t be adjusted for height and mammography devices that require women to stand.

In addition, the department’s rule is designed to reflect rulings from the Supreme Court and the Americans with Disabilities Act in ensuring individuals receive community-based services wherever appropriate.

Health & Human Services Secretary Xavier Becerra said the measure aims to make it easier for individuals with disabilities to get health services,

“It’s 2023, yet for many Americans accessing basic health needs is still challenging,” Becerra said in a statement. “Some persons with disabilities may have to drive hours to get an accessible mammogram or receive the benefit and advancements of our healthcare system.”

Kate Dougherty, president of the National Down Syndrome Congress Board of Directors, spoke about the proposal as an advocate and as the parent of a 15-year-old son with Down syndrome.

“This rule puts us on the right course to better ensure my Elliot and others like him with Down syndrome will not face continued discrimination when accessing critical health care services and programs,” Dougherty said in a statement.

Alison Barkoff, who leads the Administration for Community Living, worked with the HHS Office of Civil Rights on the proposed rule.

In a statement with HHS, Barkoff said, “The COVID-19 pandemic shone a spotlight on the discrimination that too many people with disabilities continue to face, from denial of medical treatment due to ableism, to inaccessible medical equipment and websites, to having no choice but to receive services in institutional settings.”

The Catholic Health Association of the United States said it would review the proposals and “is strongly committed to supporting legislation and policies that increase access to care for everyone, particularly those who are most vulnerable and in need of care.”

The American Medical Association said in a post on X (formerly Twitter) that it looked forward to reviewing the proposals and thanked Becerra for working to ensure healthcare for those with disabilities.