June 22 marked the 26th anniversary of the Supreme Court’s historic decision in Olmstead v. LC, a 1999 case that gave power to the Americans with Disabilities Act by ruling that disabled Americans have the right to live in the most community-integrated setting possible. The landmark ruling was handed down after more than a century of institutionalizing people with intellectual and developmental disabilities (I/DD) in large, state-run facilities, even when living in the community was both possible and more appropriate.
Today, institutionalization is no longer the default for people whose disabilities require more intensive levels of support. Nevertheless, it is a practice that remains in place. As of 2020, an estimated 15,000 people with I/DD were still living in a large, state-run facility. That number, though staggering, has been steadily decreasing over the years, down from nearly 38,000 people in 2006.
Californians with I/DD are now watching nervously for the possibility that years of progress could be lost as Congress has slashed funding for Medicaid — the program that funds the vast majority of services that make community inclusion possible for people with I/DD. These cuts will have deleterious consequences for people with I/DD who rely on the Medicaid Home and Community Based Services (HCBS) program.
To be clear, any cuts to Medicaid are cuts to funding available for HCBS. Regardless of which programs are targeted by the cuts, the result will be the same: less funding for Medicaid services in state budgets. States are not required to fund HCBS, which has led to more than 500,000 people with I/DD on waiting lists across the country. When Medicaid funding is cut at the federal level, states must find ways to reduce the shortfall in state budgets. In turn, states reduce services, with optional programs — such as HCBS — being first on the chopping block.
Here in California, Medicaid funds essential services that support over 500,000 people with I/DD to live, work, and thrive in their communities through HCBS waivers. These services make possible some of the most basic necessities, as well as programs that support people with disabilities to find work, live in their own homes, build meaningful relationships and more.
Meanwhile, investing in these supports makes it possible for families of people with I/DD to remain in the workforce while ensuring their loved one receives proper care, thereby enabling them to avoid having to rely on social safety net programs themselves.
At my organization, PathPoint, we’ve already seen the challenges that come with a failure to invest in I/DD services. PathPoint’s funding is heavily dependent on Medicaid. Cuts would affect nearly all of our services, deeply undermining our ability to offer fair, competitive wages and thus hire and retain the quality staff who offer these essential supports.
An inability to retain staff leads to long wait lists, and oftentimes forces people back into institution-like settings or other restrictive options where they face lack of choice. It’s a vicious cycle, and one that effects countless service providers, like PathPoint.
According to recent research from ANCOR, 90 percent of community-based service providers experienced moderate or severe staffing challenges in 2024, forcing some to discontinue their programs and services. Some providers are the only ones in their area to offer these services.
The good news is that it doesn’t have to be this way. Although federal lawmakers have enacted congressional proposals to cut federal Medicaid funding, they can support proposals that make investments that strengthen community-based services and the workforce that delivers them.
On behalf of the thousands of Californians with I/DD and their families, we urge our lawmakers to turn the tide on underinvestment in Medicaid-funded disability services to ensure the promise of Olmstead can be upheld for future generations.
Tasha Addison is the Vice President of PathPoint’s South Santa Barbara County Intellectual & Developmental Disability (I/DD) Services. Tasha and her team provide the services and supports that people with I/DD need to flourish.
