ICW makes a place for disabled adults
by Jan Schlain
At a formal dance at Barton Hills Country Club in January, Megan Carlisle, thirty-five, looks radiant in her sapphire pants suit. The DJ plays "Y.M.C.A." followed by the theme from "Footloose," and the dance floor fills.
There is a band, too--Know Obstacles, or KO for short. When she isn't dancing or eating or greeting someone warmly, Megan is singing and playing tambourine with the band.
David Ziff, twenty-five, dapper in his slacks and sweater, is on electric guitar. Steve Osburn, KO's lead guitarist, recalls some times when David went a little wild--"I remember him taking a rack of stacked amps and tipping them ... one time he took my guitar and just smashed the bottom of it. But that was a long time ago."
David's not a spoiled rock star--he's autistic. He sometimes turns his back to the audience, and he usually plays only one string, but, Osburn says, "he plays that string very well." Megan is cognitively impaired and developmentally disabled. Osburn, who owns Oz's Music, sometimes jokes that he's the only member of his band who hasn't been diagnosed.
Yet despite their challenges, both Megan and David live independently. In 2008, Megan moved into her own west-side condo, where she's now one of the eight adults with disabilities in the first residential program run by Intentional Communities of Washtenaw (ICW). A year and a half ago, David joined another group in a nearby apartment complex.
Natalie Isaia, twenty-five, seems to enjoy the dinner and dance, though she mostly stays seated next to her father, Tom. Natalie, Tom tells me, had a viral infection just after her birth that "grabbed the high functioning part of her brain." When asked at what level she can read, he replies, "Zero. She can't tell 'A' from 'B' or '1' from '2.'"
Though she doesn't fully understand it yet, Natalie, too, will be moving into an ICW community. Tom, who owns Coffee Express, refinanced his house to buy her
a condo in the same complex as Megan's. Kindhearted and a little sad, Tom is transitioning his daughter to ICW at the same time he is moving his ninety-six-year-old mother to an assisted living facility off Plymouth Road. He says the experiences are similar, because "they both need care."
"It's not about money," he says. "It's the reality that Natalie has to be with people her own age. I'm not letting her go reluctantly. At ICW she is going to flourish--more than she can if she stays with me."
Megan Carlisle's educational life was never mainstream. "We tried it once," says her father, Dick, an urban planning consultant, "but it was a disaster. She was always in some type of special program."
Megan started at Lawton, then went to a special-needs program at Clague, and then on to a high school program that, Dick says, was another disaster. After a dispute with the Ann Arbor Public Schools, Dick and his wife, Barb, moved Megan into a Washtenaw Intermediate School District program, housed first at Pioneer and then at Chelsea High School. Megan took a taxi out to Chelsea with a couple of other kids.
"She was in John Cooper's program [at WISD] for a number of years," says Carlisle. John and Nancy Cooper "really understood what the kids needed. They had a work component, focused on life skills, and had a unique aspect of their program where they rented an apartment and had the kids live in the apartment for two or three weeks at a time. That's where the seeds were planted [for ICW]--right there."
But the Carlisles' first attempts to let Megan live independently were difficult. They rented an apartment for her, first with one roommate, then with another, and then bought a condo for her at Georgetown. "That was our experiment," Dick says. "It was ... challenging.
"Everything you think that is supposed to happen with a [young adult], it's not," he explains. "You're still dealing with the responsibility of taking care of somebody.
"We had roommate circumstances all the time. And we were the support staff ... This was no life--for either us or her."
Meanwhile, the Carlisles had Megan in a program in Troy called "On My Own." "That program combined three things," Dick explains, "An education component, a social component, and a residential component. "In the back of my mind, I kept thinking, 'We could have a program like this in Ann Arbor.'"
At Carlisle's urging, the director of On My Own agreed to investigate setting up a similar program here, but nothing came of that. Then Dick tried to do it on his own, meeting with a group of parents, "and got absolutely nowhere with them," he says. "They just didn't like putting in the effort."
Then came a lucky break--he ran into a former neighbor, Bob Guenzel, who was then the Washtenaw County administrator. "He just happened to be asking me how Megan was. I said, 'Not really good.'"
Guenzel set up a meeting with his staff that led to three $25,000 grants from the county--"seed money to get this program started." And as more families joined the group, "it started out as five or ten of us, and it would grow to twenty," says Dick. "We started meeting in my office, and then we met in the county library, and then we ended up at WISD."
But the search for a long-term place for Megan and the others wasn't going well. "The money was to investigate programs all over the country," Carlisle says. "We found nothing."
"The worst-case scenario, if ICW didn't happen, Megan would have ended up in a group home," he says. "Another less-good scenario would have been a living community already in existence elsewhere. We looked at a school in Kentucky. We took a trip to a place down in Atlanta." But Dick remembers thinking, "This is the community Megan grew up in. I didn't want to be forced into that option because there was nothing here. I ended up saying, 'Goddammit, if we can't do this here, we can't do this anywhere.'"
Then another lucky break: In 2006, Dick ran into a friend at Sweetwaters, and they began talking about Megan. "She said, 'I have a friend who works at this program in Chicago that you might be interested in.' She's the one who told me about the Center for Independent Futures in Evanston."
Dick and another parent, Maureen Forrest, went to Evanston to see for themselves. "It was just amazing," recalls Dick. "They had two communities ... But the thing that really interested us was that each community had a community builder"--a non-disabled resident who provided guidance and organized social activities.
After that first scouting trip, "The county money helped fund a four-day training trip for half a dozen of us ... They put us through this whole training, about how they do this."
There were parents skeptical of the concept, Dick recalls. "The naysayers said, 'We don't have the money.' I thought, 'It's your kid. You'll figure out something.'
"For me," says Carlisle, "it was more desperation. I knew that if we didn't do this, I didn't know how we were going to keep Megan here [in Ann Arbor]." The supporters realized that the only way that they were going to convince others was to go ahead and get a community started. "That's when Summerfield Glen occurred," says Carlisle.
The fledgling group bought four units in the westside condo complex. One unit was donated to Catholic Social Services, which had agreed to become ICW's fiduciary. It's now the residence of Summerfield Glen's community builder, Ami Wilson. The group there grew to eight residents before being capped: "We have family-style dinners once a week," Ami explains, "and when the group gets any larger, it makes those dinners difficult."
Ami, whose only compensation is free housing, also organizes a couple of other community activities each week--anything from making Valentine's cards to ice-skating followed by hot chocolate. Sometimes they have movie nights or game nights. During the day the residents see coaches and caregivers from the county's Community Support and Treatment Services (CSTS); at night someone is always close by, on call. Though Ami's degree is in elementary education, she's been trained to respond to medical or other emergencies.
The worst emergencies, she says, are when residents have seizures. The best moments are when someone is experiencing an episode of high anxiety and, rather than isolating, engages the group and shares their feelings: "It's like group therapy," she says.
"If anybody tells you that this doesn't put stress on a marriage, they're lying," Dick Carlisle says. Raising a child with a disability "brings a couple together or pulls them apart." While the Carlisles' marriage survived, David Ziff's parents broke up.
"For the first couple of years of [David's] life, no one really knew" what was wrong with him, recalls Bob Ziff, a U-M professor of chemical engineering. "For many years, our doctor just said, 'Let's just wait and see what happens ... Einstein didn't talk until a certain age.' You keep hoping, hoping."
David's mother, Sofia Merajver, is a professor at the U-M med school. "The big dilemma you always have [as a parent of a disabled child] is that we are getting older," she says. "Someday we'll be gone. And what kind of life would they have if they slept in their childhood room their whole life?"
There was a time, she says, when David would travel with his parents all over the world. "Then one day [after a bumpy flight] he developed a tremendous phobia to airplanes--now he's very limited. A lot of autistic adults have phobias to airplanes."
David lives in the second ICW community, a group of apartments at Woodchase. Jay Fernelius is the community builder there.
"This is not just dump-your-child," Sofia emphasizes. "The staff is not always available, so if something happens, they call us." But David "has more friends, he has more connections here."
Since the move, his father says, David has "really grown in a lot of ways. He's a lot more independent ... He does a lot of things--folds his clothes, empties the dishwasher. He'd never do that [at home]. I'd ask him to, but he'd say no."
The Carlisles have seen changes in Megan, too. "The thing that is just amazing to me is the growth that has occurred," Dick says. "You wouldn't think that somebody who is cognitively impaired and developmentally disabled, who is thirty-five, would be able to expand his/her vocabulary or learn to read at a higher level, but ... she's around young men and women, and she picks up things from them ... complex sentences, and vocabulary she would never have used three or four years ago."
Best of all, Dick says, "She's happy. She was not happy before. Her unhappiness was mostly, usually, directed at us ...Megan is very happy now because she has this feeling, first of all, she is on her own. Our house is no longer her home."
"Home is really my condo," Megan agrees by cell phone one evening while at her neighbor Kelly's condo for dinner.
"I don't have a roommate, and can just do whatever I want to do." She volunteers at St. Joe's hospital and CSTS, and sees her ICW friends "every single day."
To parents struggling to care for an adult child with disabilities at home, that sounds like all they could wish for. But, like Merajver, Carlisle stresses that ICW isn't simply a place to hand off responsibility.
"The community part of it is the real key to it," he says. "I mean, you have to want to [have your child] live in a community that helps each other." At first, he adds, "we really did not have a well-developed intake process [to make that clear to parents], and now we do.
"Everybody needs to be a part of this--there's a transition for the families as well as for the individual." And, he notes, while ICW is "part of the initial identification of what that person needs, ultimately we are going to rely upon the funding from the social service system, CSTS."
Even so, so many parents have signed on that ICW's third community opened in March in Woodchase. Natalie Isaia will be part of the fourth, scheduled to open this summer at Summerfield Glen.
"What I would like to see is communities to start in Saline, Dexter, Chelsea," Dick Carlisle says--wherever there are "individuals who would benefit from a community living situation like ICW. I see it growing more in Ann Arbor from the nucleus we have started.
"How large it grows, it's hard to say. The need is there."
[Originally published in April, 2013.]