Disabled person sign and gavel. Accessibility law concept.

Celebrating Recent Significant Milestones in Disability Rights

Over the past few months, we’ve witnessed two significant milestones in the history of disability rights law. In May, we were invited to attend an announcement marking the finalization of rulemaking to update Section 504 of the Rehabilitation Act of 1973. This was the first time the legislation had been updated in the 50 years since its passage. We also recently had the honor of attending a ceremony commemorating the 25th anniversary of the Olmstead decision. These updates are not just historical events, but they also hold immense importance in shaping the future of disability rights law.

Updates to Section 504:

The Rehabilitation Act (otherwise known as the Rehab Act, or simply “504”) is the grandfather of disability rights law; it provides the foundation on which other seminal pieces of legislation stand, including the Americans with Disability Act (ADA) and Section 1557 of the Affordable Care Act. The Rehab Act prohibits discrimination on the basis of disability in federally funded programs. One might read that and think, “Wow, if the Rehab Act was so sweeping, then why did we need all of the legislation that came after it?” Well, one reason is that the federal government, while still expansive in the 1970s, wasn’t as sprawling as it is today. More importantly, however, is the simple fact that 504 was legislation that was largely a creature of regulation, which means that it relied on government regulation and government enforcement to actually be effective. The other important thing about the original Rehab Act is that it laid out how it applies to the government in a piecemeal way, so there are sections explaining how nondiscrimination in healthcare should be viewed (the focus of the updates below), how nondiscrimination should apply in education, housing, and many others. The Americans with Disabilities Act and the Americans with Disabilities Amendments Act, among others, then came along to provide further context to the Rehab Act and fill in the gaps that the Rehab Act had missed. The recent updates to the Rehab Act are incredibly important and impactful both because there have been many advancements in disability rights law over the last 50 years and because we understand disability much differently now, both societally and in the context of things like the COVID-19 Pandemic. The updates also address guidelines for equipment, technology, and access to services that didn’t exist when the Rehab Act was initially passed.

The update to the Rehab Act covered a tremendous amount of ground, but some of the highlights are below:

  • Ensures that medical treatment decisions are not based on negative biases or stereotypes about individuals with disabilities, judgments that an individual with a disability will be a burden on others or dehumanizing beliefs that the life of an individual with a disability has less value than the life of a person without a disability.
  • 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 aid, benefit, or service.
  • Defines what accessibility means for websites and mobile applications and sets forth a specific technical standard to ensure that health care and human service activities delivered through these platforms are readily accessible to and usable by individuals with disabilities.
  • Adopts the U.S. Access Board’s accessibility standards for medical equipment to address barriers to care, like 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. The rule requires most doctors’ offices to have an accessible exam table and weight scale within two years. Institutions that specialize in mobility issues need to have 2 of each piece of equipment or 20% of all equipment meet standard, institutions that do not specialize in mobility issues need to have 1 of each piece or 10%
  • Details requirements to ensure nondiscrimination in the services provided by HHS-funded child welfare agencies, including, but not limited to, reasonable efforts to prevent foster care placement, parent-child visitation, reunification services, child placement, parenting skills programs, and in- and out-of-home services.
  • Clarifies obligations to provide services in the most integrated setting, like receiving services in one’s own home, appropriate to the needs of individuals with disabilities consistent with the Supreme Court’s decision in Olmstead v. L.C.
  • Requires greater access to clinical trials, similar to the first bullet, mostly focused on breaking down attitudinal barriers in accessing clinical trials

These updates reflect many of the updates MDA Advocacy Team urged the Department of Health and Human Services to consider. You can read our comments here.

The 25th Anniversary of the Olmstead:

While the original passing of the Rehab Act was monumental to the disability community, it didn’t cover everything, and there were ways that  the law could be avoided. One of the ways this happened was by institutionalizing those with disabilities in medical facilities. Technically, people who are held in medical facilities are receiving the care they need, but they are effectively trapped in these facilities and unable to live their lives out in the community under the guise of needing comprehensive care. The Olmstead decision (and subsequent legislation) effectively ended this practice of institutionalization.

The Olmstead decision began with two women, Lois Curtis and Elaine Wilson. Both women had mental health diagnoses and intellectual disabilities. In order to receive treatment, both women were forced to spend time outside of their homes to receive in-patient care in residential institutional settings instead of receiving consistent care outside of these institutions. Lois and Elaine spent years going from spending periods of time in an institution, then being released, having their health decline, and then ending back in an institution. All of which could have been avoided if the state had provided care at home. Lois and Elaine reached out to the state of Georgia to receive help accessing treatment in their own homes. While this process took years, eventually, Louis, and later Elaine, connected with Sue Jamieson and the Atlanta Legal Aid Society to bring a lawsuit against the state of Georgia. They argued that the state’s failure to provide services and care options at home violated the ADA. The case  made its way to the United States Supreme Court where the Court agreed, effectively ending institutionalization on the basis that by failing to provide care in the most integrated settings, states were segregating those with disabilities from the rest of society.  This decision was backed by the passing of the Olmstead Act on June 20, 1999.

While Olmstead made major strides in ending these practices, there are still instances when institutions violate the integration mandate. However, thanks to the Olmstead decision and act, we have created a framework to reverse these practices as quickly as possible. For example, last year, an institution held around 140 children in its facility rather than in their communities; we were able to work with other patient advocacy organizations to put together an amicus brief for the court in Florida, and Florida’s actions were reversed. Thanks to the precedent laid out in Olmstead, we were able to demonstrate the medical realities that children recover better at home than in institutional settings. We were able to rely on the precedent and statute provided by Olmstead to support the fact that these children not only have the right to receive the care that they need in their communities, but that they deserve to be with their families, play with other children, go to school, and generally exist in their homes and communities. None of that would have been possible without Lois Curtis, Elaine Wilson, Sue Jamieson, and the rest of the legal team at the Atlanta Legal Aid Society. You can read our amicus brief from last year here.

All in all, while there is still much to do to equalize how those with disability interact with society, the last few months have provided a microcosm for just how far we’ve come in the disability rights movement.

Next Steps and Useful Resources

  • These updates reflect many of the updates MDA Advocacy Team urged the Department of Health and Human Services to consider. You can read our comments here.
  • You can read the Atlanta Legal Aid Society amicus brief from last year here.
  • Join the MDA Advocacy Team at mda.org/Advocacy to get involved with us and to keep up with the latest MDA advocacy opportunities!
  • Stay up-to-date on Quest content! Subscribe to Quest Magazine and Newsletter.

Disclaimer: No content on this site should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician.