More than two years after federal officials signaled that they would update regulations to keep medical providers from discriminating against people with disabilities, advocates say the clock is ticking.

Disability advocates are pressuring the U.S. Department of Health and Human Services to act urgently on updating regulations related to Section 504 of the Rehabilitation Act.

“Section 504 regulations have not been updated for decades and do not adequately address issues facing people with disabilities today,” wrote 30 advocacy groups in a recent letter to Susan E. Rice, director of the White House Domestic Policy Council, and Melanie Fontes Rainer, director of the Office for Civil Rights at HHS. “We are concerned that if the notice of proposed rulemaking is not issued imminently, that there will not be sufficient time for meaningful comment and response prior to the end of the administration’s first term.”

In 2021, HHS put out a request for information on disability discrimination in the health care and child welfare systems. At the time, officials noted that despite Section 504 prohibiting disability discrimination, the agency was aware that “significant discrimination” persisted in both arenas.

More recently, advocates indicated that they have raised concerns about continued discrimination in organ transplants, problems with health care rationing during times of crisis, inaccessible medical equipment, communication issues and more during a listening session and in a letter to HHS last year.

Rachel Klugman Seeger, a senior advisor for communications at HHS’ Office for Civil Rights, said she could not comment on plans to update 504 regulations, but she pointed to an announcement in the agency’s Uniform Agenda from last year indicating that a proposal was expected in March 2023.

“The current regulations have not been updated to be consistent with the Americans with Disabilities Act, the Americans with Disabilities Amendments Act or the 1992 Amendments to the Rehabilitation Act, all of which made changes that should be reflected in the HHS section 504 regulations,” the notice states. “We concluded that not taking regulatory action could result in continued discrimination, inequitable treatment and even untimely deaths of people with disabilities.”

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.