Historic News: Prohibiting Disability Discrimination in Federal Programs! (by Jeneva Stone)

Little Lobbyists Rob Stone poses in front of a blue and white backdrop with the logo of the U.S. Department of Health and Human Services, as well as a sign to the right of it that reads, “Disability Rights Are Civil Rights.” Rob is a wheelchair user, and he is dressed in an orange and black plaid shirt. He wears glasses and sports a mustache.

“By removing barriers to health care and social services, this rule advances justice for people with disabilities who have for too long been subject to discrimination. No diagnosis should be missed because of an inaccessible mammogram, no patient should be left with questions about test results due to inaccessible websites, and no life should be valued less due to disability. This is the promise of Section 504 of the Rehabilitation Act and through this action the Biden-Harris Administration is, once again, making clear its commitment to equality and civil rights.”

–HHS OCR Director Melanie Fontes Rainer (press conference)

On May 1, the Biden Administration took a giant step forward in disability rights, issuing its final rule on the long-awaited Health & Human Services updates to Section 504 of the Rehabilitation Act of 1973, which prohibits discrimination on the basis of disability “under any program or activity receiving Federal financial assistance.” In the 50 years since it passed, Section 504 has never been revisited or revised–until now–despite its historic significance as the cornerstone of disability rights, long fought for by the disability community. Our Little Lobbyists families were there to join in the celebration!

U.S. Secretary of Health and Human Services Xavier Becerra held a press conference to celebrate this important historical milestone, long fought for by disability rights advocates. He reaffirmed the Department’s commitment to the rights of disabled people, telling the audience that these are a top priority of President Biden. Becerra introduced the new rulemaking, Nondiscrimination on the Basis of Disability in Health and Human Service Programs or Activities, saying that it “updates, modernizes, clarifies, and strengthens the implementing regulation for Section 504” in programs administered by HHS.

These programs include Medicare and Medicaid, the foster care system, home and community-based services, and requirements for accessibility in hospitals, physician offices and clinics receiving federal funds–and much more!

Alison Barkoff, who performs the duties of Administration for Community Living (ACL) Administrator and Assistant Secretary for Aging at HHS, describes what advances and improvements our community may expect from the new federal guidance:

Secretary Becerra (l) poses with, left to right, Little Lobbyists Executive Director Elena Hung (who wears a red jacket), Jeneva Stone (white jacket), and Rob Stone (in front of Jeneva). Two other celebrants from the press conference are also in the photo.

Discrimination in medical treatment: Medical treatment decisions may not be based on “biases or stereotypes about people with disabilities, judgments that an individual will be a burden on others, or beliefs that the life of an individual with a disability has less value than the life of a person without a disability.”
Community integration: “The rule clarifies obligations to provide services in the most integrated setting appropriate to the needs of individuals with disabilities, consistent with the Supreme Court’s decision in Olmstead v. L.C.”
Accessibility of medical equipment: These address physical barriers to health care, such as “exam tables that are inaccessible because they are not height-adjustable, weight scales that cannot accommodate people in wheelchairs, and mammogram machines that require an individual to stand to use them.”
Web, mobile app, and kiosk accessibility: “These provisions are particularly important given the increased use of websites, apps, telehealth, video platforms, and self-service kiosks to access health care.”
Value assessment methods: “The rule prohibits the use of any measure, assessment, or tool that discounts the value of a life extension on the basis of disability to deny, limit, or otherwise condition access to an aid, benefit, or service.”

Both Secretary Becerra and Office of Civil Rights Director Melanie Fontes Rainer affirmed their commitment to enforcement of these provisions in the coming months.

We welcome these important steps forward with civil rights! Little Lobbyists is committed to advocating for the health care, education, and community living rights of our medically complex and disabled children.

To understand the history and importance of Section 504, please read “What Is ‘Section 504? Disability Rights 101” on the Little Lobbyists blog.

For more information on the new rule, please see: