State Wants Adults With Developmental Disabilities To Have More Say In Life Choices

Jul 11, 2017

Vermont’s Department of Disabilities, Aging and Independent Living says allowing adults with developmental disabilities to make more of their own decisions will help them to live independent and healthy lives.

The changes that are being discussed would give these adults more say in where they live and even in who should take part in  guardianship proceedings in the courts.

The work has the potential of transforming how adults with developmental disabilities make their way in the world, and how the world listens to what they have to say.

Katharine Breunig is 34-years-old. She has Down syndrome, and she lives in an apartment in Brattleboro  with a roommate who receives a stipend from a local nonprofit group that supports people with developmental disabilities.

Breunig lives here because she decided that she wanted to move out of her father's place.

She was about 27 at the time, and like a lot of other 20-somethings,  Breunig sought advice, got some input, and then made a decision.

The state calls it supportive decision making, and it’s part of a national movement to give adults with disabilities more say over major life choices such as living arrangements, finances and guardianship.

It's just the latest step in making sure people with disabilities get a chance to live as independently as possible, says Roy Gerstenberger, with the Department of Disabilities, Aging and Independent Living.

"When somebody first hears about the idea of supportive decision making, they may be taken aback a little bit, because we are talking about people who are sometimes categorized as incapable of having control over their own lives," says Gerstenberger

"But I would invite anyone to sit down and have a conversation and explore this. Indeed this is not foreign at all... it's an opportunity that makes sense  for all citizens of Vermont. And it does reflect our growth as communities and as a society."

Gerstenberger is leading a task force that's trying to come up with ways to give adults with disabilities more opportunities to have a say in where they live, how they spend their money, and even whether someone else should have guardianship over their lives.

The idea is radical, and it once again puts Vermont in the forefront of breaking down the barriers that have prevented adults with developmental disabilities from making decisions about how they live.

Earlier this year Vermont received an award at the United Nations in Vienna for the work the state has done supporting adults with developmental disabilities.

Vermont has a long history of supporting adults with disabilities. It was one of the first states to shut down its institutional hospital, and now the state is pushing the envelope once again.

 

Katharine Breunig cooks dinner in her apartment in Brattleboro. Breunig lives with a roommate who receives a stipend, but she largely lives independently.
Credit Howard Weiss-Tisman / VPR

Just before Breunig decided to move out of her father's house she attended a music academy. She lived in a dorm. Made her way to classes and got a taste of living independently.

She understands it was a big decision to move out.

"First you have a dream you want to go for, and a goal to go to that dream is to make it happen," Breunig says. "And I found my dream, and it happened. And I'm so grateful that I have this wonderful living situation, and, yeah, I love it. Just follow your dreams."

The number of adults with developmental disabilities has been growing, and over the next few years the state expects to see that number continue to rise. That growth comes in part from an increase in kids with autism aging out of the school system.

And as adaptive technologies advance, adults with disabilities will have more options on how they live their lives.

Julie Cunningham is director of Families First, the southern Vermont agency that manages Breunig's living arrangement.

"When somebody first hears about the idea of supportive decision making, they may be taken aback a little bit, because we are talking about people who are sometimes categorized as incapable of having control over their own lives. But it reflects our growth as communities and as a society." - Roy Gerstenberger, director of Developmental Disabilities Services.

She says these young adults will demand a role in making decisions about how they live.

"It's about their life. They are their decisions and it's their life," Cunningham says.

"So in this current generation where we haven't had institutions, and this group of kids have been mainstreamed all through school, for the most part it's really very important to us that we have that kind of supportive decision making process. There's this whole generation coming up who are really looking for something different."

Over the next few years there will be a lot more Vermonters like Breunig who'll want to make decisions as they age through adulthood.

The state's trying to make sure they have the support in place to make that happen.