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Disability Matters: At 22, Moving Out

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"Group home" is a loaded term. They've been criticized for being too large and impersonal, encouraging neglect or dependence. One alternative is the Individual Residential Alternative, known as an IRA. In an IRA, four to six disabled people will live together in a regular house, with 24-hour staff to take care of them.

There's a new IRA that just opened up in Potsdam for four women. Each of the women has some kind of developmental disability. Amber Treise is cognitively impaired and legally blind. It's not the first time she's tried to live alone. Gregory Warner joined Amber this past April as she checked out her new house for the first time.

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Renovations are still underway, as Amber Treise and her grandmother walk up the stairs, and into Amber’s future bedroom.

Barbara: “What do you think? Like it?” “This is what you wanted!”

Amber: “I know I did.”

Amber will have three roomates. Two are unable to talk, one uses a wheelchair. Amber says it’ll be like having a new family.

Amber: “I’m going to be like the big sister. And kind of help them around if they need help or just be there if they need it.”

On her bedroom walls she’s only hanging family photos, no posters.

Amber: “Family is more important than accessories or like famous people on my wall. You know, like, it’s time to grow up.”

It’s been a growing up year. Amber turned 21 last year and graduated high school. School had offered structure – classes, and work experiences. And then everything changed. Amber’s grandmother, Barbara Treise, is a retired home-ec teacher.

Barbara: “There was this thing about being 21 and being independent and I can make any decision I want—which, you know, created some problems.”

Amber moved out of her dad’s house, and in with a boyfriend who mostly left her at home. And then she moved alone to a housing project in Colton. She was excited to be on her own.     

Barbara: “But then she was very, very lonesome and didn’t realize how lonesome she was going to be. And of course, being in Colton, she doesn’t drive.”

Amber: “I was worried about my safety. I was worried about being alone.”

Barbara: “And it was winter and her mother and I could n0t get to Colton easily on many days. And she called me and she was in tears she said, “Grandma—I can’t take this any more.”

The house that Amber will move into next month is run by a small non-profit organization called LEAP. LEAP was started 10 years ago by Nancy Rehse, then the registrar for SUNY Potsdam. Rehse started the organization to make a home for her own son, Jason. Jason is now 33. When he was in other homes as a teenager, she says she had no control over how he was treated. Jason is unable to talk.

Nancy: “And he might have a staff person who—I’m sure their heart was in the right place—but they were very rough. In all of their dealings with him they were rough. And you can’t really go to somebody’s boss and say, “I don’t want this person dealing with my son… because they’re just too rough!”

So – Nancy decided she’d be the boss. She got three other families together, donated some land, and they built a house for Jason and three other boys. Almost immediately, she noticed the change.

Nancy: “When our boys, our first four boys, moved into the house they all came in on heavy drugs – psychotropic meds – and they’re not on anything. One of the guys still has a small amount of anti-seizure medication, but he came in on two or three times the dose he’s on now. I think it’s the single best thing about finding the living situation that works for you. And in so many cases we drug our kids because they don’t fit into what we need them to fit into at the time. The schools need them to sit in their chairs and be quiet.  And at home you’ve got to have some semblance of order around your dining room table, you know? But at our houses we’re able to create the program around the kids.”

LEAP opened an IRA for four more boys in Norwood last year. This house for girls comes with new challenges.

Nancy: “The girls are MUCH more into the decorating. And mush more specific about what they want. And not just about their rooms, but about the whole house.”

And its not just wall color. Amber wants to make the place a home. She wants to pass on family recipes, like her grandmother’s coffee rings. But first she’ll have to learn how to cook. She also wants to work as a teacher’s aide, and be able to buy things, like her own dresser. But first she’ll have to learn how to count change.

Amber: “I want to prove myself that I can buy these stuff for myself. I’ve had my family buying stuff for me. I want to meet that goal that um—like cooking or cleaning—I can do all that stuff—the cleaning,  the housework.  Learning to get a job, and hoping I get the job…and I probably will."

For North Country Public Radio, I’m Greg Warner.

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