Posted May 19, 2011By Chris Must
EMC News – “We’re the few and far between,” said Laurie Gauthier. “We haven’t given up.”
Gauthier and other parents of children with development disabilities haven’t given up fighting for the resources they need to provide care at home for kids who have nowhere else to go. At a press conference called by Perth’s Tayside Community Residential & Support Options and the Canadian Union of Public Employees May 11, Gauthier said “I had to quit my job because of lack of quality care and being completely burned out.”
As the parent of a 15-year-old son, Cameron, with an extremely rare condition that leaves him legally blind and requiring constant care, Gauthier had no choice. Her son has Marinesco-Sjogren Syndrome, a condition affecting fewer than 100 patients in the world. He sleeps very little. “On a good night we get seven hours, but on a bad night, we could get two hours,” said Gauthier.
Other parents of children with disabilities are in the same situation. Amy Booth and Cathie Hogan, also Lanark County residents, said the provincial government seems to be counting on those parents being too exhausted to take steps to correct the lack of resources available in Ontario, that leaves many families constantly struggling and living in poverty.
Hogan has a 21-year old son, Ty, who has severe autism, doesn’t speak, has an obsessive compulsive disorder, and pica (ingestion of inedible objects). Booth’s seven-year-old son Ronin has also been diagnosed with severe autism. Along with Gauthier, Hogan and Booth were in Perth May 11 to share their stories.
David Hagerman, executive director of Tayside Community Residential & Support Options, said his agency has seen no increases in funding and has been trying to do more with less for a number of years.
“The system is really struggling, and we really have a sense that it’s crumbling around us,” he said.
According to Hagerman, in 2008 in the southeast region of Ontario there were 328 individuals on the waiting list for some form of residential support for intellectually disabled family members in 2008. By 2011 this list has grown by almost 100 individuals to 427. Agencies providing services have received zero per cent increases in funding in the last two years.
Across the province there are 23,000 people with a developmental disability on waiting lists for services. 12,000 of those are waiting for residential supports.
Booth said her son has been on the waiting list for four years.
“The line isn’t moving,” she said.
Funding would enable seven-year-old Ronin to have the expert supervision he would need to participate in activities such as summer camp or skiing. Booth said there are 36 families in Lanark County in an autism support group, and about half receive funding and half don’t.
Hagerman said the long wait for services has a tremendous impact on families. Lack of support creates substantial stresses, forcing parents to quit their jobs to look after children who need constant care. This has led to family break-ups.
The Social Services at Home funding program, Hagerman added, has not approved an application in four years. It has also been years since new group homes have been built, while the list of families that need residential care options keeps growing. “Parents who are in their 80s who need to plan for their disabled children are told they have to wait, parents with children who have been funded through the childrens’ system and school system are told when their sons reach 21 their funding has disappeared and they will have to wait and cope,” said Hagerman.
Hogan said the year her son Ty turned 18, her family lost $13,000 in funding to care for him. The following year they lost an additional $7,000.
“I was looking at having to quit my job and stay home with my son,” she said.
Hagerman said the Ministry of Children and Youth Services provides funding until the children are 18. They have a right to special education until they are 21. After that, he said, “They have a right to nothing except to wait.”
Hogan said that at the same time the funding for home care was cut, there were no group home spaces available. The Ministry of Community and Social Services has built group homes only to fill the spaces with people coming out of provincial institutions which have been closed, she said. But last month a group home space became available in Perth, and her son moved in May 1.
“We’ve been blessed,” she said. “It was like winning the lottery.”
Hogan explained that, “As parents, our children’s needs are our needs.”
She said families caring for children with disabilities are exhausted, and marriages are under severe strain. As the child becomes the parents’ only focus, “we become isolated,” and all other relationships suffer. “We neglect ourselves because our whole focus is the needs of that child.”
‘TRY TO LIVE MY LIFE’
Families without financial help are living in poverty, Hogan said, because they have cashed in their retirement savings’ plans or sold their homes to fund equipment or other support for their children. Some have reached the end of the line, and given children up for adoption.
Annalienne Venuta of Tayside Community Residential & Support Options is a case worker working with disabled adults living on their own. “They’re often taken advantage of,” she said. “They’re always in a vulnerable situation.”
Venuta said some of these adults’ lives consist of going from one crisis to another. She visits these clients once a week, which she said is not enough to ensure peace of mind.
“I’m afraid I’ll arrive one day to find them dead,” she said. “That’s one of my biggest fears.”
Gauthier said her message to the decision-makers in government is “Come and try to live my life.”
She said parents like her are “on a death watch” literally waiting for a group home resident to die and open up a space. Meanwhile, the families are saving the government thousands of dollars by caring for their disabled children at home rather than in institutions.
Gauthier said the problems the families are facing are not the fault of any one provincial ministry, “It’s all of them.”
“We’re not asking for diamonds and gold here, just a very realistic solution,” said Booth.