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For when they're no longer here, Vt. parents seek better care for their children with developmental disabilities

A photo of a woman bending over a young adult man, with grass and trees up top.
Nina Keck
/
VPR
Elizabeth Campbell says her 24-year-old son Jesse, who has Down syndrome, cannot be left home alone. Elizabeth's husband died in 2020, and Campbell worries constantly about what will happen to their son if something happens to her. It's a concern many older parents of children with intellectual disabilities share.

If you’re a parent, one of your main jobs is to teach your children to take care of themselves so they can eventually leave home.

But what if you have a child with a developmental disability — who will never be able to live on their own?

For many older Vermont parents in this situation, the worry about what will happen to their kids when they die is gut-wrenching. But increased parental activism and a new law is giving many hope.

“Who's gonna take care of my child? Who is going to advocate for him?"
Ellen Riley, whose adult son, Christopher, has Down syndrome

Ellen Riley is 67 and lives in Moretown. Her adult son Christopher has Down syndrome, and Ellen says she and her husband worry constantly about what will happen to him when they're gone.

“Who's gonna take care of my child?" she asked. "Who is going to advocate for him? Who's going to make sure he has a fulfilled life? That he does his laundry, takes care of his bank accounts, that he isn’t out roaming the streets?"

Riley added: "He can’t live up on the mountainside with me the rest of his life. I’m going to get old.”

A mother bends down to help her adult son put on sandals.
Nina Keck
/
VPR
Elizabeth Campbell helps her son Jesse, who was born with Down syndrome, put on his sandals. "If the house caught on fire, I'm not sure he'd know to leave," she said. In his teens, Campbell says Jesse's disabilities worsened until he became catatonic. Eventually he was diagnosed with Down syndrome regression disorder. He's improved, but she says he needs 24/7 supervision.

Forty miles west in Shelburne, Elizabeth Campbell bends down to help her son Jesse put on his sandals so he can go outside with his dog.

Jesse is 24 and was born with Down syndrome. In his teens, his disabilities worsened to the point where he became catatonic. His mother says eventually, he was diagnosed with Down syndrome regression disorder. He's improved since then, but she says it's greatly impaired his ability to function independently.

“So everything has to be, I think of it as shepherding," Campbell said. "I have to shepherd him. 'Alright, Jesse, time for breakfast. OK, Jesse, finish your toast. Time to brush your teeth.'"

She added: "If the house caught on fire, I can't be sure he'd know to leave ... I cannot leave the house without a paid caregiver.”

Campbell is 65. When her husband Bruce was alive, she says they were able to tag team. But Bruce Campbell died of brain cancer a year and a half ago. Campbell says if something were to happen to her, Jesse would most likely end up in the state’s Shared Living program.

She likens it to adult foster care. And she says the thought of her son spending his life as a guest in a series of strangers’ homes is unthinkable.

“None of us would think of, if we still had our elderly parents, none of us would think — if they had a little dementia — of putting them in adult foster care, we wouldn't do it," Campbell said while shaking her head. "Why do we think that's a good idea for people like my son?”

“None of us would think of, if we still had our elderly parents, none of us would think — if they had a little dementia — of putting them in adult foster care, we wouldn't do it. Why do we think that's a good idea for people like my son?”
Elizabeth Campbell, whose son Jesse has Down syndrome

A little history here: For nearly 80 years, Vermonters with intellectual disabilities who were not able to live at home were cared for at a place called the Brandon Training School. More than 2,300 Vermonters cycled through, and many lived for decades there.

But institutionalized care went out of fashion, and in 1993 the Brandon Training School closed. In its place, the state began paying families to house and care for Vermonters like Jesse in the community. That care is paid for primarily with Medicaid and Social Security benefits.

According to state officials, nearly 3,300 Vermonters received this type of care last year.

More from VPR: 'People Need Human Contact': Brattleboro Disabilities Group Helps Members Connect During COVID

While shared living works well for some, Elizabeth Campbell says it doesn’t work for people like her son, who need stability and who can’t speak up if they’re being exploited.

"This is a real concern for parents in our group," she said.

The group she's talking about is the Developmental Disabilities Housing Initiative.

It formed last year, and Campbell says it has about 90 members, mostly older parents like herself. Ellen Riley, the person we met at the start of this story, is part of the group as well.

The group has been pushing the state to create more options for their kids – ones that provide stability and peer interaction at an affordable rate.

Thanks in part to the group’s efforts, Vermont lawmakers passed legislation this year that will help the state analyze different types of residential care models and develop best practices.

The new law also provides a $500,000 in pilot planning grants.

A woman in a brown shirt sits in a chair next to her adult son who is holding a stick.
Nina Keck
/
VPR
Elizabeth Campbell wrote an op-ed last year about her concerns about her son's future. She says she was amazed at how many other parents who were in a similar situation reached out to her. "We're all aging parents and we're all desperate for a more stable future for our children. Almost all of our children will outlive us, and it's very hard to have any peace knowing that you have a very vulnerable child."

Jennifer Garabedian is director of Vermont’s Developmental Disability Division, which will oversee much of this work.

She says many families are doing a good job caring for adults with disabilities. But she admits the state’s system has gaps which were made worse by the pandemic.

As part of the new legislation, Garabedian says her department will need to do more frequent quality control assessments of the care disabled individuals are receiving both at the state and local level.

Garabedian says her office has been meeting with those providing care as well as those receiving it, and she's committed to making things better.

"And while I don't think we need to abandon the current models that we have, let's also explore what else could be out there," she said. “We need to be sure that we are understanding people's needs, their wants and desires, and that we meet people where they’re at and where they want to go. Our programs need to be individually tailored to help people have the best lives that they want in the communities.”

"[W]hile I don't think we need to abandon the current models that we have, let's also explore what else could be out there."
Jennifer Garabedian, director of Vermont's Developmental Disability Division

Elizabeth Campbell is thrilled about the new law, but says it's just a start.

She believes smaller group homes that provide a place to age in place with peers is what many parents are looking for.

“When someone like my son leaves high school, they're living with their parents, and they're very isolated," Campbell said. "Jesse's either with me or his caregiver, who's a few years older than me... He's a 24-year-old young man, and I think he's profoundly lonely.” 

She points to a residential care home in Hardwick called Heartbeet Lifesharing and one in Middlebury called Yellow House Community as potential models.

A 24-year-old in a blue shirt walks up a hill with his mother holding hands.
Nina Keck
/
VPR
Elizabeth and Jesse Campbell walk outside their home in Shelburne.

Parents with The Developmental Disabilities Housing Initiative argue that such housing needs to be affordable and available in all parts of the state. A report the group just released analyzed and compared residential care programs in Vermont with ones in New Hampshire, Boston, Cape Cod and Virginia, to help the state as it develops new options.

Ellen Riley says she and a group of parents from the Barre-Montpelier area have already begun looking at potential sites to create a residential care home in their area.

Funding remains daunting, and she admits any project will take years. But she says their efforts and passage of the new law has made her and many other parents more hopeful about their kids’ future.

Have questions, comments or tips? Send us a message or get in touch with reporter Nina Keck:

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