Abandon by the System: Ontario’s Adult Developmental Services Crisis

Ontario's Crisis of disabled adults, abandoned by the system

By Elizabeth Renzetti, Globe and Mail, May 19, 2014.  Reprinted with permission

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 councilor 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.

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