Canadian parents work to create independent living settings for their adult children with disabilities

From Inside Toronto:

Jenny Heath (pictured) is known as "the pink girl" to many.

Pink is the Scarborough woman's favourite colour. She's 23, has Down's syndrome, but likes to do things on her own. As an adult, Jenny asked her mother, Bonnie Heath, "Why don't I have my own home?"

Now she does. Five days a week, Jenny and two other young adults with developmental disabilities share a Port Union-area townhouse with a live-in facilitator.

During an open house for neighbours on a Sunday afternoon last month, Jenny, who is normally shy and has difficulties with language, "was a great hostess," answering the door and showing people around, Bonnie Heath said.

"She's calling it her house."

The Heaths and two other local families who opened the house in July like the independence it gives their adult children. They consider the shared house a model other families could follow.

"There are hundreds, if not thousands, of families in Toronto in exactly the same situation," Susan Field, whose son Peter, 25, lives in the shared home, said last month.

Parents whose children have developmental disabilities and have graduated from school are expected to care for them at home until they are unable to continue - and often that means "emergency placement" in a group home when a parent is old and frail or dies, said Field.

"They're really the forgotten population."

Knowing this, Field and Heath spent years talking to other parents until they decided to get creative and "jumped in" when an opportunity for a shared home presented itself.

But the families don't yet have government support to pay their facilitator, and Field wonders how long the house can be sustained without it.

"My son is very physically capable, but he's not mentally capable of living on his own," said Field, whose son spends three days a week at Scarborough's Variety Village and two days in Community Living-sponsored volunteer work.

Field said she doesn't think Peter will ever be near the top of the long list for group home placement while she is alive. Even if he was, she wouldn't want him in group home - an institution - and many parents in her predicament feel the same, she said.

"Once you put him into that system, you lose that control," said Field, who founded the Down's Syndrome Association of Toronto when Peter was six months old.

"My son is 25. He's young, he's vibrant. Why would I want to do that to him?"

In the shared house near Port Union Road and Lawrence Avenue, Field argued, her son and friends do their own laundry and plan their own meals, activities group homes generally don't allow. "It's as normal a life as you could possibly have," she said.

"They had waffles for breakfast this morning; they made it themselves. It just gives them a sense of empowerment"

And since the parents get groceries and generally run the house, their arrangement costs much less to operate than a group home, said Field.

"It's the cheapest model you can come up with."

Heath also feels her daughter wouldn't be happy in a group home. Rather than waiting years for an alternative, she'd rather be proactive now, and know Jenny is happy, safe and in an environment she likes, she said.

Ontario disability payments for the three residents pay for house expenses, but not for the facilitator. Field and Health have asked the province for supportive home share funding - Field said it would add up to $36,000 a year - only to be told the money this year had been spent.

In June, the women met Pickering-Scarborough East MPP Wayne Arthurs, who wrote a letter to Ontario's community and social services ministry on their behalf and has tried to get the house on a list for new funding, said Bill Hepburn, Arthurs' executive assistant.

The group also held a fundraiser at a local pub and approached Garry Pruden, Community Living's regional executive director for Scarborough, who said the families have demonstrated a lot of initiative.

"I applaud it. They put themselves on the line," said Pruden, adding he will try to present the shared house model to the ministry soon.

"We're working with them to help with their work," he said, but cautioned that the ministry doesn't have much money to spare.