Losing Hope

Province not doing enough for families with disabled children

Lanark County families of children living with developmental disabilities say their situation is becoming hopeless. Funding from the provincial government is not enough to meet the needs of families with disabled children, and the waitlists for services are long and
getting longer, said Dave Hagerman, executive director of Tayside Community Residential and Support Options.

“We feel that it’s crumbling around us,” he said.

Hagerman, along with support workers, mothers of children living with disabilities and the Canadian Union of Public Employees, held a press conference
at Tayside on May 10.

They hope to raise awareness about a situation they say is reaching a crisis level.

Hager-man provided information which stated that 328 individuals in southeastern Ontario were on waiting lists for residential support in 2008. That number grew to 427 this year. The number of people waiting for day support
in 2008 was 120, which has now grown to 231.

No new group homes have been built to keep up with demand, and the program that provides support to families who want to keep their loved one at home, called the Social Services at Home (SSAH) funding program, has not approved an application in four years.

SSAH is capped at $10,000 a year, but most families who were approved for funding in the past receive $4,200 a year – which is $350 per month, according to Hagerman.  

Hagerman said these numbers translate into devastation for Lanark County families with a loved one living with a developmental disability.

Funding from the Assistance for Children with Severe Disabilities Program through the Ministry of Child and Youth Services dries up when children turn

“That’s when they go on the waiting list for everything,” Hagerman said.

They are no longer eligible for special education funding at age 21, which means they can no longer attend school.

Lack of support often means one parent has to quit working to stay home. Many families live in poverty. The stress has broken up marriages.

“The people who make these decisions should come and try to live my life for 48 hours,” said Laurie Gauthier, mother to 15-year-old Cameron. Cameron is one of only 100 individuals in the world living with an extremely rare disability called Marinesco-Sjogren Syndrome. He has seizures, is legally blind
and requires constant care.

Gauthier said, because she had to quit her job two years ago in order to stay home with Cameron, she was ineligible for Employment Insurance benefits.

His two sisters, who will soon be heading off to university, are ineligible for the Ontario Student Assistance Program because of Gauthier’s husband’s
income, which is considered high. But OSAP doesn’t take Cameron’s cost of living into consideration.

While Cameron receives the maximum $10,000 a year through the SSAH program to help with his care, along with some other funding, Gauthier said the family is struggling. She has had to return to work part
time to make ends meet, and Cameron attends school while she is at work.

Gauthier must stay home during school exam times, PA days and other school holidays.

Some of the funding Cameron receives will also dry up when he turns 18 and is no longer considered a child.

Different scenarios

Smiths Falls resident Cathy Hogan’s son, Ty, is 21 years old. He has severe autism and can’t speak. He also has obsessive-compulsive disorder and Pica, which means he tries to ingest inedible objects.

When Ty turned 18, he was no longer eligible to receive $13,000 of funding he had been receiving when
he was considered a child.

“When Ty turned 18, he still had the same needs as he did the day before when he was 17,” Hogan said.

Hogan knows she is one of the lucky ones. After waiting 10 years, Ty is scheduled to move into a group home this month.

“We’ve been blessed,” she said.

But she also knows the only reason Ty secured a bed at the home is because the individual who had been occupying the room passed away.

Amy Booth’s seven-year-old son, Ronin, lives with severe autism. She said because of his disability, he requires a trained family relief worker to babysit
him. Lack of services in the area means even the simple act of going grocery shopping can be impossible.

Booth wants to keep Ronin at home, but said she needs help. She has been on a waiting list for SSAH funding for the past four years.

“The line isn’t moving,” she said.

“I hope that the government will understand that our need is real. For me, it’s about awareness and putting some pressure on somebody somewhere that we need some help,” she said.

Annalienne Venuta, a direct support worker at Tayside, said when an individual turns 18, he or she becomes eligible for the Ontario Disability Support
Program, which provides them with $1,040 per month. More funding is available for individuals who require special diets or diaper allowances.

Some of these individuals who are deemed eligible can then live in semi-independent living situations, staying in their own apartments with workers such as Venuta checking in on them every week.

“I get to see them once a week, which isn’t often enough,” she said.

These individuals are sometimes taken advantage of by others because of their disability.

“They’re always in a vulnerable situation,” she said.

She said sometimes, workers find that a client has passed away since they had last checked in on them. “That’s one of my biggest fears,” Venuta said.

Children’s support important

Carol Anne McNeil is a family relief manager with the Lanark County Family Relief Program. She said the amount of families with disabled children is increasing, and support systems simply aren’t keeping up with demand.

“These kids aren’t going away and we’re producing more of them as a society,” she said.

Some families in Lanark County have multiple children with developmental disabilities. “We have many families in the county now that have two and three children with Autism,” McNeil said.

She said early intervention and support for children and their families are keys to keeping families together. Easing stress and providing aid can mean
a world of difference, especially when the families want to keep their loved one at home.

“Their families are willing to do this if we just give them a break once in a while,” she said.

Reproduced from http://www.yourottawaregion.com/news/local/article/1015416–losing-hope