As Adults With Developmental Disabilities Get Older, State Services Will Be Tested

Jul 10, 2017

Vermont has seen success providing housing and care for adults with developmental disabilities out in their communities – but as the number of adults seeking services increases, the state will be tested to find the funding and programs to serve the growing population.

Over the past 10 years, the percentage of Vermonters over 50 receiving developmental disability services increased, and the number is expected to continue to rise.

Vermonters living with developmental disabilities are living longer than ever before, thanks to medical and technological advancements. At the same time, baby boomers who've been caring for their children find it harder to provide the intense care their children require, and they will be looking for more assistance as they age.

Henry Wein, 38, has cerebral palsy, and he lives in an apartment in Dover, thanks to a state-supported program that provides 24/7 service. This model works for Wein and for his parents, both of whom are in their 70s and live about 10 miles down the road.

But it's expensive, and the local support agency is now trying to convince the Weins to move their son into an adult foster home.

Danielle Alfano is one of Wein's caregivers, and she says Wein deserves to have a place to call his own.

"This is where he's happy," Alfano says. "He's an adult. He's a man. He needs his own space. He needs his own home. And he does perfectly fine with the way things are. I don't see why there's any reason to change it."

A calendar hangs on the wall of Henry Wein's apartment showing when his caregivers are scheduled.
Credit Howard Weiss-Tisman / VPR

The tension between the local service agency and the Weins highlights some of the challenges Vermont faces as it confronts an increase in the number of adults with developmental disabilities.

Between 2004 and 2016, the percentage of adults with disabilities age 50 and older receiving services jumped about 17 percent, according to the Department of Disabilities, Aging and Independent Living.

Vermont was one of the first states to shut down its institutional home for people with disabilities when it closed the Brandon Training School in 1993. When that state institution closed, there was a move to house and care for the former patients out in the community, explains Monica Caserta Hutt, Vermont's commissioner for the Department of Aging, Disabilities and Independent Living.

Between 2004 and 2016, the percentage of adults with disabilities age 50 and older receiving services jumped about 17 percent, according to the Department of Disabilities, Aging and Independent Living.

Caserta Hutt says there has to be a lot of different supports in place to make sure these adults can live the lives they deserve.

"Building an adult life for somebody and providing housing, work and connections in the community is complicated," Caserta Hutt says. "When you're a child, your connections happen at school. They're very natural. They're very organic. It's what you're doing every day.

"But as an adult, we're having to create that for ourselves, and for each other and for folks with disabilities. For adults it does get more complicated, for sure."

And those complications extend into the funding mechanisms that pay for services for adults.

Theresa Earle is the director of developmental services at Health Care and Rehabilitation Services, the state's designated mental health agency which manages the care for Henry Wein in Dover.

Earle could not comment directly on Wein's plan, but she said when the state takes on providing services for an adult and they have to track down funding sources for housing, transportation, job training and staffing, the regulations that govern each funding source don't always complement each other.

"There are a lot of different sources of funding and each one comes with different regulations," says Earle. "There are parallel regulations for mental health and parallel regulations for Social Security. There's parallel regulations for any place that a person would access any kind of financial support or service, and each one will have co-existing regulations.

"And so when you find out that maybe the way that that's been done is not necessarily in alignment with those expectations, then we have to adjust accordingly."


Sheldon Wein, left, cuts challah for Shabbat dinner at his house in Wilmington, while Danielle Alfano helps Sheldon's son Henry. The house is about 10 miles away from Henry Wein's apartment in Dover.
Credit Howard Weiss-Tisman / VPR

Henry Wein's family likes to visit their son, and occasionally his caregiver brings him over for Shabbat dinner. These traditions are important to Wein's family, and his father Sheldon Wein says he's not excited about sending Henry into an adult foster home where he'd have less control over the food he eats and his health and safety.

But it costs about $100,000 a year to provide Henry Wein with the 24/7 paid staff, and that's more than three times what it costs to support an adult to live with a foster family in what the state calls "shared living."

And while Sheldon Wein understands the dollars and cents that are driving the decision, it's still tough to accept.

"This is being used to save the state money, pure and simple," he says. "I don't think there's a better situation for Henry. I think this is a straight, 'We can cut the costs.' I mean, they made the laws and then they're complaining that the laws they have are forcing the costs of taking care of Henry up so he can't continue."

Vermont is committed to giving every adult with a developmental disability a chance to live out in the community, and as the number of those adults increases, it will take some creativity to make all of the pieces fit.