25 years after their big win, states are still letting disabled people down

Twenty-five years ago this week, the Supreme Court’s landmark ruling in Olmstead v. L.C. was heralded as the most important in disability history.

Spearheaded by Georgia-based disability rights advocates Lois Curtis and Elaine Wilson, Olmstead cemented what those of us in the disability community have always known to be true and just — that we deserve to live in communities rather than in institutions. 

Olmstead specifically centered around the misconception that everyone with mental illnesses or mental health disabilities cannot be out in society. Olmstead effectively established that institutionalizing intellectually or developmentally disabled people against their will was a form of discrimination.

More broadly, institutionalization of disabled people has historically made it almost impossible for disabled people to work, interact with family, friends, and community members, and live independent and interdependent lives. 

The Olmstead decision of 1999 was meant to promise once and for all that segregating disabled folks in institutions and barring them from living and thriving in their communities would never again be considered normal or standard practice. And Olmstead should have fundamentally changed the way disabled people are treated by society, providing them with the opportunity to receive care in their own homes. It was intended to give disabled people real autonomy; the freedom to make decisions for themselves and pursue their lives without constraint. 

A quarter of a century later, however, the promise of Olmstead is dreadfully unfulfilled, and our nation’s lawmakers are to blame. 

Currently, more than 690,000 Americans are waiting for Home and Community-Based Services waivers — Medicaid waivers that give them access to care in their own homes. Some have been waiting for more than a decade. And where do you go when you can’t get the care you need in your home and within your community? To a nursing home.

The stories are endless of people with no choice but institutionalization simply because they can’t get a waiver. Not only is this forced institutionalization not what any person deserves, but there are also numerous examples of how unsafe nursing homes can be. For those who don’t qualify for nursing homes, they’re often left without any care and in isolation, with no choice but to figure it out on their own.

In short, the state of the care economy can make it feel like there is no end in sight. 

More than 75 percent of the people on waitlists (540,000) are in the South, where my organization focuses its work. This is unconscionable in a state like Georgia, which has a budget surplus of $16 billion in 2024. It’s unconscionable in South Carolina, where there was a nearly $2 billion surplus last year. It is unconscionable in Texas, where the wait-lists currently sit at more than 300,000 people.

What we are left with is something called institutional bias: the idea that in this country, we have an inherent right to receive care in an institution but don’t have an inherent right to care in our own homes.

For many, the process of obtaining a waiver is a painful waiting game that leaves them with no other option than to pay for private care or else transition to living in a facility just to survive.

Parents of disabled children who are waiting for waivers are often left with no choice but to stay home with their kids, severely limiting their ability to provide for their families and therefore keeping them in forced poverty.

And while it may seem unreasonable or overly simplistic to demand that state leaders and lawmakers fund more waivers, the reality is that these states have the funds to do it. Often, they just choose not to allocate the money for them. They justify using their substantial surpluses for any number of things, but not for these folks who need them.

We have enjoyed some small wins. In 2023, Georgia funded a total of 1,000 waivers — a historic number for our state — and other states have made similar small but important moves. But we’re also seeing an exhaustingly vicious cycle, where waivers aren’t funded and there’s simultaneously a labor shortage among care workers, who receive disturbingly low wages — as low as minimum wage or in some states around $10 per hour. This is unsustainable. How can disabled workers get off of these waitlists and get the services they need if there’s no one to provide the services because the wages aren’t livable? 

So as we mark 25 years since the Olmstead decision, the truth becomes clearer every day. Although this decision was monumental for the history of disability rights, the promise of autonomy and freedom from institutionalization remains unfulfilled.

As a country, we can do better for disabled folks. They deserve better than institutional bias. We deserve the inherent right to live and thrive in our communities. Care workers, many of whom are disabled themselves, deserve a living wage so that they can provide the services that so many disabled folks need. Lawmakers need to step up and do better—no more excuses, no more inaction. The time for radical change is now.

Let us not forget, on this milestone anniversary of the Olmstead decision, that while we can certainly celebrate what Olmstead symbolizes, we cannot subscribe to the idea that it did what it set out to do. There is such a long way to go. 

Dom Kelly is co-founder of New Disabled South.