HHS modernizes disability rights rule, stresses importance of enforcement

The Office for Civil Rights (OCR) announced an update to Section 504 of the Rehabilitation Act of 1973 Tuesday, fortifying support for Americans with disabilities.

It is the first time the regulation has been updated in nearly 50 years and brings stronger grounds for enforcement, said Department of Health and Human Services (HHS) Secretary Xavier Becerra in a news briefing Wednesday. The announcement follows the rule's proposal in September.

The guidance issued Wednesday further defines how websites and mobile apps deliver services and adopts the U.S. Access Board’s standards for equipment like exam tables, mammography machines and weight scales.

Additionally, the rule says decisions regarding medical treatment for services like organ transplantation, life-sustaining treatment and clinical research participation cannot be based in stereotypes or give an impression that one life is worth less than another.

The guidance also bans value assessment methods from being used to “place a lower value on life-extension” or used as rationale to limit access to aids and other benefits, according to an HHS fact sheet. Value assessment methods are sometimes a tool for cost containment measures.

“We know that the rules have been out of date for some time,” said Melanie Fontes Rainer, director of OCR. “They don't reflect the many developments and changes we as a society have progressed for this community.”

She said requirements around digital services are important, as the healthcare system rapidly adopts in-person kiosks and web-based applications for pharmacy pickups.

Enforcement will face three distinct challenges, said Becerra.

First, the agency must educate individuals of their rights. Physicians can no longer provide different treatment to people with disabilities, even for simple tasks like getting weighed, for example. Second, HHS is looking to work with providers by helping them understand all requirements and implement the law effectively. If all else fails, lawsuits may pop up with unexpected outcomes.

“You never know what you’re going to end up seeing come out of a judge or court, and we have to push and be prepared because we may be startled in the way someone else interprets what we believe is the right to have equal treatment,” said Becerra.

Child welfare agencies are tasked with new standards, too, protecting children, parents, legal guardians and caregivers. These requirements are consistent with the American with Disabilities Act. The rule takes effect June 30.

“Today, ableism got punched in the face,” said Theo Braddy, executive director for the National Council on Independent Living.

Section 504, passed in 1973, protects the rights of people with disabilities and ensures individuals are not excluded or denied benefits from federal programs. But after four years, no regulations were issued to offer necessary clarity or define how enforcement of the law would be handled. Disability rights advocates fed up with inaction and half-measures organized sit-ins to put pressure on federal officials to issue the regulations in 1977, according to the Disability Rights Education & Defense Fund.