Emily’s 18th Birthday

Eighteen years ago today, the Supreme Court issued a landmark ruling in the case Olmstead v. L.C. The court ruled that under the Americans with Disabilities Act, people with disabilities cannot be unnecessarily segregated and must receive services in the most integrated setting possible.

In other words, if someone is able to live in the community with appropriate services and supports, they should have the choice to do so.

The ruling acknowledged the existence of resource limitations, but it also said states should take "reasonable steps" to provide community-based alternatives to institutions. That has increased the availability and quality of services in the community for people with disabilities.

It also has changed government spending. In 1999, Medicaid spent nearly three times more on long-term services and supports provided in institutions like nursing homes than it did on services in the community. By 2013, a majority of that funding was going toward services and supports in the community.

To illustrate what that has meant for people with disabilities, let's imagine a baby born with cerebral palsy on the day of the ruling, June 22, 1999. We’ll call her Emily, since that was the most popular name for girls born in the United States that year. Emily’s cerebral palsy affects her ability to fully use her arms and legs, and she also has a mild intellectual disability. What has Olmstead done for Emily, and what will it mean for her future as an adult?

Few things affected Emily’s childhood more than where she grew up and who she grew up around. For earlier generations, being born with significant disabilities often meant having no choice but to grow up in an institution. Because of Olmstead, Emily almost certainly grew up with her family, in her own home.

Because of Olmstead and legislation supporting the rights of people with disabilities, Emily had the opportunity to go to school with all of her friends, whether or not they had a disability.

Today, on her 18th birthday, Emily is probably thinking about her high school graduation and her future after high school.  Olmstead means that she has the same decisions to make as her peers without disabilities – whether to go to college, where she wants to live, and what kind of job she wants to have. 

Emily needs help with most physical tasks. As a child, she got most of this help from her parents and siblings. At one time, her only options for receiving this support as an adult were to continue living with family or moving to an institution. Olmstead has greatly increased the availability of these kinds of services and supports in the community, which means Emily is thinking about how she’ll decorate the apartment where she plans to live.    

Around the country, states and communities are adopting an "Employment First" philosophy that starts with the belief that people of all abilities should have the opportunity to work in integrated workplaces. Individuals, families, non-profits, and states are stepping up and working together to create the supports necessary to make this work, and to change the assumptions people make about the capabilities of people with disabilities. Olmstead helped create the environment for this kind of change, which will help Emily be self-sufficient as an adult.

Emily is not the only one in her family affected by Olmstead. Lately, her grandparents have found it harder to do some of the things they used to do easily. Olmstead has changed the world of opportunities for them, too.  Those same kinds of services that help Emily meet her physical needs, like help with getting dressed, often are the services that allow older adults to continue living in their own homes. The ruling also has helped expand access to housing and transportation. So thanks to Olmstead, Emily’s grandma and grandpa have more opportunities to remain independent. 

What all of these changes have in common is that they put Emily and her grandparents, with help from their family if they need it, in control of their own lives.

Despite the great progress of the last 18 years, we still have a lot of work to do to make Olmstead's vision of choice and integration a reality for all Americans. Far too many people who could be -- and who want to be -- living independently in the community face barriers that force them into institutions. That’s why ACL is committed to making home- and community-based services more easily available, and to improving quality and coordination of these services.  We hope that by the time Olmstead – and Emily – reach their next milestone birthday, all people with disabilities and their families have the kinds of options Emily and her family have had.

Follow Melissa on Twitter: @AoDCmishOrtiz