Frantic parents search for housing for severely autistic son
TheStar.com – news/gta
September 22, 2012. Laurie Monsebraaten, Social Justice Reporter
Miles Kirsh is a 19-year-old Thornhill teen with autism who functions at the level of a 3-year-old.
He is largely non-verbal and responds to stressful situations by shrieking, biting himself, slapping surfaces, ripping his clothing and occasionally destroying property.
Since Sept. 5, he has been living in a group home for developmentally disabled adults near Barrie. But on Oct. 1, emergency community funding to cover his $400-per-day care runs out.
His frantic parents, who have separated due to the pressures of raising their severely disabled son, sold the family home at the end of August and are no longer able to care for him.
They say one provincial bureaucrat told them they could drop off Miles at a shelter.
“We are in an untenable position,” says Miles’ mother, Donna Kirsh. “We have advocated endlessly for our son and are completely depleted. We have spent more than $750,000 on support, education, intervention, treatment and have been across North America to see many experts in the field. But we can’t do it anymore.”
York Support Services Network, which co-ordinates care for about 1,000 developmentally disabled children and adults in the region, has been working with the family for about three years.
Kirsh said she was assured Miles would not become homeless after the family home sold.
Typically, ministry funding is found, said Marie Lauzier, the network’s executive director. But that didn’t happen this time.
“This is the first time this message has come to us,” she said.
“There’s no capacity for response. None,” she said, adding “Miles is not the only one.”
Miles’s situation was one of three urgent cases the network flagged at its regular meeting with Ministry of Community and Social Services officials late last month.
“The ministry has always been a great partner,” Lauzier said in an interview this week. “They know we do our homework and do everything possible in the community before we bring cases to them.”
“There is no flexibility anymore for the community to create the kind of responses that people need,” she added.
Agencies in Durham have been hearing the same thing from their local ministry offices.
“We used to be able to deal with our ministry rep and talk about pressures,” said Glenn Taylor, executive director of Community Living Durham North, serving Uxbridge, Scugog and Brock. “She would write things down and say, ‘I’ll see what I can do,’ and more often than not . . . we’d get a top up.
“Now we’re being told, ‘Don’t even talk to us about the severity of the problem, there is not going to be any money,’ ” said Taylor, who sits on a local team of agency representatives which meets regularly with ministry officials.
Ministry officials on Friday said they were unable to discuss specific cases but said they “continue to work with the family and local agencies to exhaust all options.
“We understand the concerns raised by parents who want to know that their children with a developmental disability will be cared for when they are no longer able to do so,” said spokesperson Sandy Mangat.
Since 2003, the province has spent an additional $500 million on developmental services and has increased residential care spaces by 3,000 to 18,000, she said.
This year the ministry has set aside an additional $25 million for residential services for people in urgent need, she added.
In the case of York and Durham Regions, “the need has likely far exceeded the funds we have,” Mangat said.
In Peel and Toronto, agencies haven’t been told anything as explicit as York and Durham. But they know the province’s fiscal situation doesn’t bode well for the families they serve either.
“This is not just a York problem,” said Ron McCauley, executive director of New Leaf, which operates 11 group homes for Toronto adults with developmental disabilities compounded by either mental illness or other disabilities.
“This is a provincial, system-wide problem and it is bad in all regions,” said McCauley, co-chair of Toronto’s Network of Specialized Care, a group of local agency representatives who meet regularly with provincial officials.
“I’ve been in this sector for more than 30 years, I’ve seen good times and bad times and I have yet to see it this bad,” he said. “I am truly afraid that it will take a tragedy before this matter is given the attention it needs.”
Keith Tansley at Community Living Mississauga, which serves about 1,700 adults and children with residential care, day services and case management, said waiting lists for residential care are growing daily and many people are falling through the cracks.
“Some end up in hospital, long-term care and prisons,” he said.
Miles was diagnosed with autism at age 2. His parents largely cared for him on their own until adolescence hit and the family could no longer manage the growing boy’s often self-injurious behaviour and insomnia. Just after Miles turned 16, Kirsh asked the network to find residential care for him.
“They immediately offered respite and other support. We moved him into the public school system and the support we have received has been great,” Kirsh said.
But it was never a long-term solution.
“Our family had been assured . . . that an interim living situation would be secured by September and that Miles would never be abandoned and left on the street.”
Kirsh, who is an interior designer, has managed most of her son’s care herself. The family paid to bring specialists from California for his therapy when he was young and paid for specialized private schools as he grew up. Kirsh helped found the New Haven Learning Centre which specializes in applied behaviour analysis (ABA) therapy for children with autism. When he was a teenager, she drove Miles from the family’s Thornhill home every day to another specialized school at Yonge and Eglinton.
But Miles’ dangerous behaviour in the car to and from school —banging against the window and grabbing the steering wheel — combined with mounting family expenses and his tendency to wander unattended, prompted Kirsh to reach out.
Lauzier empathizes with the family.
“I really don’t want to talk about specifics,” said network executive director Marie Lauzier. “But I can tell you the community has worked very hard to support this family to the best of our ability. We’ve pushed boundaries for that. I can’t get into specifics.
“But from the family’s point of view it is nowhere near enough. And you know what? They are right,” she said. “I can’t imagine what it’s like as a family member to be in that corner. I can’t. It’s horrible.”
The network has cobbled together emergency funding until Oct. 1. But there are no promises beyond that.
Last week, the family contacted the Star, numerous MPPs and the ombudsman’s office and is grateful for the attention Miles is receiving.
A spokesperson for Ombudsman André Marin said she is unable to discuss Miles, but that cases like his are becoming more common and the office has flagged it as a growing concern.
“It is an issue we continue to monitor closely,” said Linda Williamson.
Marin’s annual report last June highlighted “an apparent lack of services to support adults with developmental disabilities — particularly young adults.”
Ombudsman staff raised 28 cases with senior ministry officials last year, including one where a 19-year-old group home resident nearly ended up in a municipal homeless shelter because permanent placement couldn’t be found for him.
Ombudsman staff brought the young man’s plight to the attention of the assistant deputy minister, and the youth was able to remain in the private group home for another year while local agencies prepare a longer-term plan for him.
Kirsh says she was loath to contact the media about her son’s situation but believes she had no alternative.
“Community agencies told me to ‘do what I had to do,’ ” she said. “Without media intervention I believe we’d still be in crisis.
“I can’t believe it takes this kind of pressure. But people need to know this is happening. I’m doing this so other families don’t have to.”
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