Autistic adult daughter leaves mom exhausted with nowhere to turn

A "mentally and physically exhausted" Ontario mother is speaking out about how there is no group home and little help for her severely autistic 21-year-old daughter.

"I'm losing sleep. I think about this just about non-stop," said Hope Galloway, 59, from Barrie.

Her daughter Martha is like a preschooler and suffers from violent outbursts. Right now, the young woman spends her days in a school program, stocking shelves at a local store, but at the end of June she will graduate and has nowhere else to go.

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"She functions as a child of three to six with a vocabulary of possibly a two-year-old," said Galloway. "Being six feet tall and about 230 pounds is a big factor. And when she becomes angry she is unable to express herself."

Galloway said she and her husband have been dreading and planning for Martha's adulthood for years, but despite exhaustive efforts, they haven't been able to find another place for her to spend her days.

"She needs to be with other people and contributing to society and the feeling that she has a meaningful existence," said Galloway.

"Everything has to be planned in advance so that she is ready for the next stage. And right now we have no next stage for her."

Long wait lists, costly help

For three years, Martha has been on a long wait list to get into a group home, with no end in sight, her mother said. The Galloways receive $4,000 a year from the Ontario government to pay for help, but said the specialized care Martha needs costs $15 to $25 per hour, so it doesn't buy much.

"I have to be having a terminal illness or going through a wicked divorce or one of us is dead — and then there might be a place for Martha immediately."

Galloway said she now faces having to quit her nursing job at the end of the month to look after her daughter around the clock, and she doesn't know how she will cope.

"I have no respite. If I have a day off Martha is there with me. I go to work, I come home and she's with me ... there is just no break unless she is in bed," said Galloway.

"If I had to retire, then I would be like a Siamese twin with Martha. And that's not healthy for her. It's not healthy for me. And she needs to be in a setting where she is with like adults."

Governments playing catch-up

This is a huge, chronic problem countrywide. In Ontario alone, there were 21,000 people on a waiting list for this type of assistance last year, when the government announced more money was coming. Ontario's ombudsman is currently investigating 1,200 complaints from families in crisis.

The minister responsible said more group home spaces are coming, but it takes time.

"It's a question in some communities of building up capacity. We do now have more funding. As you know our government has approved $810 million in funding over three years, so we did eliminate some of the wait lists that we had," said Dr. Helena Jaczek, minister of community and social services.

Groups that advocate for the disabled said the entire country was unprepared for the increasing number of disabled adults needing community care, since institutions closed years ago.

They told Go Public that governments did not take into account the stress that closing institutions would create on working family members forced to take over.

"It's not sustainable. And so we need a new social contract on this. Already … 25 per cent of Canadians are now providing care to a family member or close friend," said Michael Bach, executive vice-president of the Canadian Association for Community Living, citing federal statistics.

Federal election issue?

Bach said his organization will use the federal election to push for a national benefit program for the disabled — similar to Old Age Security — to give them and their families federal money to cover their needs.

He said that would save the provinces millions in social assistance payments, freeing up some money for programs.

"We are certainly going to be making this an issue in the upcoming election — that Canada needs a national strategy to address the needs of caregivers," said Bach.

Like many other aging parents, Galloway said her biggest fear is over what will happen when she dies or can no longer look after Martha.

"Nobody planned for the next generation and the next generation," she said. "I am speaking out not just for myself but for all the other families that have children with special needs."

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