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Parents Brace For Change In The Lives Of Their Disabled Children

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Jason Kinzler, 36, who has Angelman's Syndrome, sits with his father, Peter, at the Northern Virginia Training Center.
Sabri Ben-Achour
Jason Kinzler, 36, who has Angelman's Syndrome, sits with his father, Peter, at the Northern Virginia Training Center.

Above Jason Kinzler's bed, there is a big blue button with a picture of his parents on it. But his piercing blue-gray eyes show no sign that he recognizes them. Jason is 36 years old, and he has something called Angelman's syndrome. He can walk, but can't talk, and functions at about the level of a 6-month old. Jason doesn't stay with his parents. He resides at the Northern Virginia Training Institute in Fairfax.

On a recent visit to the center, Jason's father, Peter Kinzler, helps his son up by lifting his harness-like belt. Jason then leads everyone down the hall, trudging in large black orthopedic shoes, individually tailored for each foot.

""Hi Buddy!" greets Katie Eegan, who is Jason's speech pathologist. "Do you know what you usually do when you get here? You can do it! You have to turn around though. It's snuggle time!"

This is one of his routines, explains Eegan. "Jason loves some physical contact, so he'll get a backrub."

Bringing the disabled into the community

The Northern Virginia Training Institute is one of Virginia's five training centers for developmentally disabled residents. The center offers a doctor and dentist on-call, a nature trail, and a therapeutic swimming pool. Some residents have jobs at the vocational center recycling or making crafts.

But all this will go away within three years as Virginia implements a settlement with the Department of Justice. The idea is to take people out of institutions, and put them in community-based settings where some might have more freedom and be socialized into mainstream society. That could mean living in their own home, group homes, or at a home with live-in staff, or any number of other options.

This plan has parents, some of them senior citizens, worried their children won't get the same level of care as they do now.

Pat Bennett's daughter, Ginny, is 45 years old, and quadriplegic. Bennett says she's tired of people telling her how great the community is. She says the group homes she's visited doesn't look safe enough for her daughter.

"The bathrooms are not set up, the staffing level is not set up," she says. "At this point, until the community can provide an equal level of comparable services, I do not believe that the community is an appropriate place for my daughter. They have to show me."

But a 20-minute drive down the road offers a different perspective.

"I think that there's been a lot of anxiety from the training center families around this," says Fairfax resident Kathy May. Her 22-year-old son, Sam, has Fragile X syndrome, an intellectual disability. "I certainly understand their fear and their anxiety about it, but I've been living with that feeling for 22 years because I haven't had any services for 22 years."

May is among the 6,000 people in Virginia on waiting lists to get some kind of placement or long-term care in an independent living facility in the community. As part of Virginia's settlement, the Commonwealth will create around 4,200 new placement slots. May says this is long overdue for her family.

"I cannot say to my husband--it's our 25th wedding anniversary--let's just go away for the weekend," she says. "I've never. We can't do that. How are we gonna afford our retirement? What have we given up all these years taking care of Sam, and really it's been my career, so we don't have as much money saved as another family might."

Arguments over money aside, the primary concern for those with family members in training centers is the health and safety of their adult children who live there.

Preparing the community for the disabled

Jamie Liban, executive director of the Arc of Virginia, an advocacy organization for people with developmental disabilities and their families, says parents shouldn't worry. According to her, there are thousands of people who have significant medical and behavioral disabilities who are living in the community. She says Medicaid pays for a range of services.

"Things like residential support, day support, employment, respite, nursing--basically any type of service they would need to avoid institutionalization," she says. "And that includes the people with the most complex disabilities."

Liban says the settlement prohibits anyone from leaving an institution until they've found a place that can offer them comparable care. She says crisis services and supplemental help would be increased as well.

"This agreement will only enhance what's available," says Liban.

But as of right now, those enhancements have not been made. Back at the Northern Virginia Training Center, Eegan says there are a lot of services that are still not available in a community-based setting.

"I have five phone calls to return today from people who are looking for speech services in the community and they can't find them," she says. "Because they can't find a provider who'll take the reimbursement."

For those people waiting on a return phone call, and for the thousands of other parents worried about the futures of their disabled adult children, pondering the future can be an exercise in significant stress.


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