‘Bachelor Pad’ Offers Independence For Men With Down Syndrome
BUFFALO, N.Y. – Talk about a cool bachelor pad.
Seven young men, most in their late 20s, live together in a seven-bedroom house in Eggertsville, complete with a pool table, in a setting described as “flat-screen TV heaven.”
All seven have Down syndrome.
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For the first time in their lives, these seven guys are carving out busy lives of their own, with some supervision.
But the home, in addition to providing independence for the seven young men, has created another more subtle benefit:
Peace of mind for their parents, who entered middle age concerned about their adult sons developing their own fulfilling lives. And those parents translated that concern into a five-year battle for the needed approval to place their sons together as housemates.
“Most of them have older siblings who they’ve seen grow up, maybe go to college and get an apartment on their own,” said Valerie Rosenhoch, mother of 26-year-old David. “They wanted to be the same as their siblings, and the parents wanted the same thing.”
Without this house, these young men might spend a few hours a day in some program or job, then spend most of their time sitting in their parents’ home watching TV, having little interaction with anyone their age.
“The danger is that they would be isolated,” Rosenhoch said.
The home comes with all the responsibilities of moving away from home. The young men divvy up chores like cooking, cleaning, laundry and budgeting that greet any young people living on their own for the first time – all under the watchful, supervisory eye of seven staff members and one manager.
All seven housemates have busy lives, at paying or volunteer jobs, along with day programs.
With at least one staff member in the home around the clock, these young men are safe and secure there, with some independence.
Dan Hodiak, father of 29-year-old Jeffrey, can testify to that.
“He’s so independent that he blows me off when I have a barbecue or something,” the elder Hodiak said. “He says, ‘Sorry, I’m busy, Dad.'”
Mary Clare Smith used to call her 30-year-old son Jared, to ask whether he wanted to come home for a while.
“Dead silence,” she said, with a laugh. “I took that as a no.”
The seven young men do have one ritual probably not shared by most housemates.
Every Thursday morning, they gather with a staff member to plan the meals, shopping and chores for the week.
Other than that, it’s a typical house for millennials.
“You walk in the house, a couple of guys will be sitting on the couch with their iPads, someone will be in his room listening to music, someone else doing laundry or playing board games,” said Fred Suchman, one of the staff members from ASPIRE of WNY. “It’s a normal house.”
And these guys love their televised sports, especially when the Buffalo Sabres and Bills are playing.
That’s just what these parents and young men want – normalcy.
“People with developmental disabilities need opportunities to reach their own potential, but in very different ways,” Rosenhoch said. “One size doesn’t fit all, but this house works for our guys.”
As Smith said of her son, “To know that he’s in a safe environment, that he’s happy and active, that’s created a lot of peace of mind for us.”
Finding this home has been a triumph for these parents’ persistence.
“This came about because we as parents were so tenacious about the whole thing,” Smith said. “We were not going to take no for an answer.”
The seven young men have known each other for years. Many were in the same youth programs, and their parents knew each other.
Faced with the dilemma of how best to provide for their adult children, the parents decided to forge their own path about seven or eight years ago. They knew it would be impossible to get their sons into a state certified group home. The state waiting list had some 12,000 names on it, one parent said.
“We knew the state was not approving any new certified group homes,” Rosenhoch said.
So the families got together and interviewed various local agencies working with people with developmental disabilities.
“The families drove the whole process,” Rosenhoch said.
They chose ASPIRE of WNY, an agency that helped each family develop its own individual life plan for its son. The parents visited at least 20 possible homes, before they settled on one in the Main Street-Eggert Road area. And with ASPIRE’s help, parents met with state developmental-disability officials to seek approval of the “non-certified residence.” That approval may not have come if the seven young men hadn’t stood up at the meetings as their own advocates.
“We had to convince the state that it wasn’t the agency or the parents driving the bus,” Rosenhoch said. “It was the guys. It was something they really wanted.”
ASPIRE bought the home, and after the state Office for People with Developmental Disabilities approved each young man’s household budget, the seven moved into the home in June 2013. The home, with between one and three staff members on site 24 hours a day, costs about $70,000 per resident each year, including rent, staffing, food and transportation. Most of that is funded through Medicaid, Supplemental Security Income and food stamps.
Parents say a certified group home would cost the federal and state governments much more.
The victory for the parents came not long after their sons moved in together, when they were invited to the neighborhood block party.
“For me, as a parent, that was the real aha moment,” Smith said. “It showed us they were just like everyone else in the neighborhood. They went on their own, without their parents.”
All seven guys – David Rosenhoch, Jared Smith, Jeffrey Hodiak, Patrick Vasbinder, Craig Donatelli, William Nosek and Michael Matthews – have, of course, different personalities. Some don’t talk much, at least with strangers, while others are chatterboxes. And it’s hard to tell when they’re being sarcastic.
But their love of their living arrangement is obvious, even in brief interviews, where they frequently used the terms “independent” and “life skills.”
“It’s a dream of mine, because I wanted to move out, like my sister,” said Donatelli, considered the group’s peacemaker.
Added Rosenhoch, “I like being with the other guys. It’s very good. I wanted to be more independent.”
Hodiak, who never minds telling his father when he’s too busy, may have been the most honest.
“The housemates are a pain in the butt sometimes, but I like them. They’re my good friends.”
© 2016 The Buffalo News
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