Adults with developmental disabilities deserve Real Lives

Deborah Flaschen, a founder and executive board chair of 3LPlace, published an op-ed in the Boston Globe in February 2023. It reflects many of the issues that still face families attempting to make use of Massachusetts’ Real Lives law. You can read the piece here, and an excerpt is below.

“Self-direction is a 21st-century adult disability solution that began in the mid-1990s with pilot grants from the Robert Wood Johnson Foundation. The idea is that individuals and their families should be able to choose the services and supports they need and use their allotted government funding to buy them.

In addition to offering choice, flexibility, and self-determination to adults with disabilities, self-direction is economically viable, as it leverages all the resources available for each individual, both public and private. People can, for example, use self-direction to pay for supports that will enable them to access learning, recreational, or vocational opportunities in the community. Research shows that people living self-determined lives are happier, better employed and educated, and have a higher overall quality of life.

The successful pilot programs led the federal government to offer matching funds for self-direction. In 2002, stimulated by this new federal guidance, many states began promoting self-direction opportunities. In 2014, Massachusetts enacted the Real Lives law, guaranteeing the right to self-direct and ordering the Department of Developmental Services to make it happen.

The vision of the law’s sponsors and promoters was far-reaching: Families, people with disabilities, providers, and DDS would work together as partners, sharing resources for solutions that would respect choice and maximize opportunities. Budgets would be transparent, families would have help from independent facilitators, and anyone eligible for services could participate.

But none of that happened.