Sylvia Quinn is 78 years old, and even though her four sons are grown, she worries about what will happen to them when she’s gone. Mainly, she worries about Sean, who is 44 and lives in a group home: He has Fragile X syndrome and autism, and cannot live on his own. Ms. Quinn, a widow, brings him home once a week, on a day he calls “happy Sunday.”
Sean Quinn’s diagnosis places him in the middle of a tangle called “developmental services.” And developmental services, in the province of Ontario, is a chronically underfunded, busted system. An estimated 21,000 people needing help – young people and adults with challenges ranging from autism and fetal alcohol syndrome to intellectual disabilities – languish on waiting lists.
You might not hear much about them, because they don’t have the facility to write petitions or demonstrate at Queen’s Park, and often their families don’t either. The families are struggling just to make it through the day, filling out forms, trucking to doctor’s appointments and looking after loved ones who can’t look after themselves. The only time you hear about these parents is when one of them, driven to desperation, “abandons” a child on the government’s doorstep. Or when kids are deemed to have "ruined" a neighbourhood, as Toronto councillor Doug Ford recently said about a group home for developmentally disabled youth.
Some parents can’t get a diagnosis in the first place. Many discover that their children are “dropped off a cliff” once they turn 18. Others, like Ms. Quinn, struggle with a group-home system where underpaid, largely part-time caregivers are stretched to the breaking point. “They provide wonderful care,” Ms. Quinn says, “but they can’t live on what they make.” She is worried that group homes like her son’s might close after she’s no longer here to fight on his behalf.
The situation is so bad that last year, the provincial government set up an all-party committee, which released an interim report in March that said: “Across the province, families of people with developmental disabilities are in crisis.” A lack of services means that too many people with developmental disabilities “end up in long-term care, hospital beds, psychiatric wards, homeless or incarcerated.” Families described the funding system, a bewildering patchwork strung between several ministries, as “dysfunctional,” “a travesty,” and “a violation of the rights of Ontario’s most vulnerable citizens.” Some families have sold their houses to pay for private care, the committee reported.
One mother, having found out that her child was on an 18-month waiting list for treatment, was told: “It doesn’t really matter when she gets to the top of the list because there’s no money for anything anyway.” About $1.7-billion is spent on the sector every year: Ask a parent of a kid with disabilities and they’ll shake their heads: Where does that money go?
Last month, Premier Kathleen Wynne proposed an injection of $810-million into the system, merely to end the wait lists. A mother of a disabled son told me it would have been “a small Band-Aid that doesn’t cover the wound.” The point is moot anyway: That money, and the budget it was attached to, died with the provincial election call.
In the heat of an election campaign, when promises appear out of thin air and appeals are made only to the wallet, it’s easy to forget that there are real people attached to the numbers. When Progressive Conservative Leader Tim Hudak talks about slashing 100,000 jobs from the public sector, is he talking about the people who care for disabled adults, wash them, talk to them and take them out for day trips? Not that there are many day trips any more. The service cuts result in “reinstutionalization” – that is, what’s supposed to be community living is sometimes little better than life in the grim old institutions.
Activists like Donna Thomson are worried about a hardening of public attitudes toward the disabled in a bottom-line society (see Doug Ford above). Ms. Thomson is the author of The Four Walls of My Freedom, a book about living with, and fighting for, her son Nicholas, who has cerebral palsy. “You’ll hear things like, ‘Why should I care? Why should I pay? I’ve got two healthy children.’ We haven’t even begun to have the conversations about disability that we need to have.”
She describes the situation in Ontario as “a terrible crisis,” but she’s skeptical that government alone can provide solutions. In her mind, everyone in the community, private sector and public, needs to work together to provide answers. “It’s not a disability issue,” she says, “it’s an all-society issue.”