The ADA: 35 Years of Influencing Self-Direction

35 Years of the ADA

The ADA helps protect people with disabilities from discrimination as they go about their daily lives. It requires reasonable accommodations in many places so that people with disabilities can take part in society.

The ADA also influenced a landmark 1991 Supreme Court decision. In Olmstead v. L.C., the court ruled that states must offer comparable services to institutional care, in the home and community, also called the least restrictive setting. That decision created the public option for home and community-based services, which helped pave the way for more people to self-direct. Self-direction gives people the freedom to stay in their homes and communities while getting the long-term services and supports (LTSS) they need to live on their terms.

The Growth of Self-Direction

Self-direction has grown over time as states have adopted Medicaid waivers. These waivers help redirect funds that would pay for a person’s institutional care. The funds, instead, go to individuals who manage their own needs, with some support. For example, people with disabilities can hire caregivers or buy goods and services that help them live independently.

While self-direction programs have been growing consistently over the past 35 years, many states expanded Medicaid waivers during COVID-19 and updated some rules around caregivers. In more cases, people can pay their family members to be caregivers if they are legally responsible adults. Every state now offers at least one Medicaid-funded self-direction program. Programs may be open to adults with a physical, intellectual, or developmental disability. They may also be open to veterans or people over the age of 65.

Today, over 1.5 million people in the United States self-direct their LTSS services. From 2016 to 2019, total enrollment in self-direction grew 17%. The number of people self-directing their care increased again from 2019 to 2023, up 23%. During that period, 44 states saw increased enrollment and six doubled their enrollment. States appear open to making self-direction available to other groups.

Why the ADA is Important

Self-direction recognizes that the people who need support and services are the experts when it comes to their needs. People who self-direct are in control of every part of their care. They choose who provides care, when and where. They set the schedule for how often they get care and for how long. They also train and supervise the employees they hire. Plus, they manage and spend their authorized budget. In short, they have more freedom to live the life of their choosing.

Everyone deserves the right to direct their care. Each person has unique needs, but traditional care models tend to treat everyone the same. Self-direction is flexible, allowing each person to create a plan suited to their needs. This person-centered approach can lead to a better quality of life, filled with personal choice and agency. Many people who self-direct their care report higher satisfaction and fewer unmet needs compared to people using traditional care.

More Work to Do

Most states offer self-directed services for qualifying adults. But many who may need self-direction are often left out of this life-changing option. For example, children who are medically fragile and people with behavioral health conditions cannot access self-direction in many states.

Currently, there are about 269 home and community-based service (HCBS) waivers across the United States. Only about half of them allow people to self-direct their care. Our mission at GT is to help bring self-direction to everyone. For that to happen, all of the roughly 269 waivers must include self-direction. We are advocating for that and educating about the importance of self-direction. We make information about LTSS accessible, and we’re here to help people understand their choices and how to manage them.

We also show that self-direction works well when the right supports are in place. We know how important it is for people to have their needs met on a daily basis. As a financial management service, we help people manage the paperwork, funding, and details that come with self-direction. We provide timely updates and help if program rules change. We offer advice on how to be a good employer and manage staff. And we make it easy to get help. It may come from our simple technology tools, like the GT App, or our customer service center.

At GT, we are proud to promote self-direction and help people live the life of their choosing. We are grateful for the groundbreaking work of the ADA 35 years ago. And we are grateful for all the advocates who work in its shadow to make sure everyone can have the support they need to live life on their own terms.