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Graham MacKenzie, who is disabled and depends on the help of his mother Susan MacIsaac photographed while arriving at his home after an art class on Sherwood Ave., Toronto March 26, 2012 (Fernando Morales/The Globe and Mail)
Graham MacKenzie, who is disabled and depends on the help of his mother Susan MacIsaac photographed while arriving at his home after an art class on Sherwood Ave., Toronto March 26, 2012 (Fernando Morales/The Globe and Mail)

Health care

For those with intellectual disabilities, a decades-long wait for a home and care Add to ...

Maureen Smith’s daughter just moved into a duplex after nearly two decades of waiting. Susan MacIsaac’s son isn’t so lucky. Despite a six-year wait, he was rejected for funding that would see him live in his own home.

“We put together a proposal and we got turned down. To this day, we do not know why,” says Ms. MacIsaac at the kitchen table of her north Toronto home. Son Graham MacKenzie, 30, slowly moves his fork into a half-cut strawberry, the lids of his round, dark eyes left heavy from a seizure the day before.

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For parents of people with an intellectual disability, the quest to find a home and services starts early and can last decades – something that becomes more pressing as parents age and their ability to physically and financially support their adult children fades. One Toronto man has been waiting an astounding 37 years for placement in a group home. Another middle-aged man recently moved into a nursing home with his mother, after his father abandoned the search for housing elsewhere, because the average wait in Ontario for nursing homes is only about 80 days. Even community housing – with queues of a dozen years in some cases – doesn’t rival the waits of people with an intellectual disability.

The housing crisis follows the closure over the years of institutions that cared for them from cradle to grave. Today, for example, there is one home each in Red Deer, Portage la Prairie and Moose Jaw, and the latter one is slated to close.

That has left parents across the country caring for their aging intellectually disabled children with the daunting realities of trying to cobble together housing and care-giving, not to mention an enormous price tag that is only partly offset by government. To be born with an intellectual disability is to be sentenced to a hardscrabble life: 73 per cent of working-age adults with an intellectual disability who live on their own live in poverty.

“This situation represents an injustice being done to persons with intellectual disabilities and their families,” said Don Gallant, co-ordinator of the Canadian Association of Community Living’s community inclusion initiative, a national program aimed at ending the isolation of people with intellectually disabilities. “To deny people an opportunity to live in the community is a denial of a basic right of citizenship.”

There are no national figures on the number of people waiting for residential housing. But Michael Bach, executive vice-president of the Canadian Association of Community Living, estimates there are 686,000 intellectually disabled people across the country and one of their biggest issues “is having access to suitable and affordable housing in the country.”

In Ontario, 12,000 people are in the queue for residential housing. Garry Pruden, chief executive officer of Community Living Toronto, a federation of agencies providing services and supports to those with intellectual disabilities, describes the wait as “oppressively long.”

Provinces are spending money to address the situation. Ontario, for instance, invested $1.7-billion in developmental and residential services in the 2011-2012 fiscal year. That province’s Minister of Community and Social Services, John Milloy, said he is aware of the sacrifices families are making, saying he would never want to minimize the need.

“I’m aware there is more demand than available resources out there,” Mr. Milloy said. “I have a tremendous sympathy; I understand the challenges they are facing.”

Experts say the issue is far bigger than just increased government funding. The solution needs to be found also with the non-profit sector and business, in addition to families. If it takes a village to raise a child, it may take savvy social enterprisers to raise people with intellectual disabilities.

“The old way, every one relied on government,” said Al Etmanski, co-founder of PLAN, a non-profit social enterprise. “The new way is to lever government money to attract new resources from families, community, philanthropists, social investors and business.”

He helped kick-start the federal government’s Registered Disability Savings Plan, which began in late 2008 and provides incentives and grants to save for future income security for all people with disabilities.

“With the combination of compound interest and all that matching money, if parents started when their child was born, that child would have close to $400,000 when turning 39,” said Mr. Etmanski, whose daughter, Liz, in her 30s, teaches art, writes poetry and is thriving in her own Vancouver apartment.

Other suggestions include finding ways to remove people with disabilities from the welfare system and for governments to create an innovation fund to test and help implement new ideas. Others talk of the need for more affordable housing and having host families that intellectually disabled people could live with, much like foster families exist today.

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