It’s 9 p.m., and Ijeoma Ross and Mark Daprato are getting their 20-year-old son, Deane, ready for bed at their home in Toronto. They listen to Deane’s favourite drumbeats, then fill his feeding tube with water and three medications and add drops to his eyes and ears. In less than 12 hours — after having suctioned the saliva that’s collected in Deane's throat overnight — they’ll start their morning routine: wake Deane up, brush his teeth, comb his hair, put ointment in his eyes, and get him on the school bus.
But next year, everything will change. That’s because Deane, who has both cerebral palsy and muscular dystrophy, will age out of children’s supports, joining the more than 70,000 adults with developmental disabilities in Ontario who contend with an adult service system that sees too much demand and offers too few supports. (The province’s cut-off age is 18, but some school boards continue to provide services until 21.)
“Deane would be happy to go to school for the rest of his life — the learning and the social interaction, plus the physical supports. But, as far as we know, there isn’t anything out there like that for him during the day,” Ijeoma Ross says. “And residential services are a whole other thing.”
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When Hayley AvRuskin and Phil Richmond, of Toronto, applied for both housing and day services for their 19-year-old son, Jake, they were told he may have to wait 25 years for a residential placement. Jake, Deane, and their families are trying to bring a class-action lawsuit against the province, alleging that, by placing them on lists with an indefinite wait time, Ontario has failed in its statutory duty to provide adults with developmental disabilities with the support they require to meet their daily needs.
“We allege there are a serious of administrative failings and an arbitrary cut-off at age 18,” says Jody Brown, one of the lawyers representing the families. “That’s creating a crisis for families.”
On October 30, they asked the Superior Court to certify the suit as a class action — a ruling is expected soon.
The failures of the adult-developmental-disability system have been widely documented by the province’s own watchdog groups. In 2014, the auditor general reported that nearly 50 per cent of the 30,000 adults in need of residential services were on a waiting list that averaged 22 years. That same year, the Select Committee on Developmental Services pledged to end waiting lists. By 2016, though, not much had changed. The auditor general noted there had been "little to no progress” on accessing residential services. As of March 2017, there were 15,700 unfulfilled requests for adult residential services and 13,500 for community services.
In the government’s response to the lawsuit, the Ministry of Children, Community and Social Service’s representative, Barbara Simmons, argued that developmental-disability services are “not entitlement programs.”
Budgets have shifted since the lawsuit was filed in April 2017. In March 2018, before the provincial election, Ontario allocated $1.8 billion to developmental-disability services and pledged that every eligible adult would receive at least $5,000 for community supports through a funding stream called the Passport Program. It’s not yet clear whether the new Progressive Conservative government will assign dollars differently — when asked by email for comment, a spokesperson for the Ministry of Community, Children and Social Services replied: “We are here to make life easier for those both living with developmental disabilities and their families. The ministry will continue to work towards improving the developmental services system to deliver real results for the people of Ontario.”
The design of the Passport Program has left many families, such as the Ross-Dapratos and AvRuskin-Richmonds, feeling under-resourced and overwhelmed. "We have all the advantages behind us, and we are completely daunted by the tasks ahead,” Ijeoma Ross says. “There’s so much administration. I might have to quit my job.”
When a rare spot does open up, it may not be suitable. Krystal Nausbaum, 29, was offered one on the outskirts of Toronto — but she turned it down. “Krystal is one of the few people we know who got a call for a residential placement from the wait-list,” says her mother, Madeleine Greey. “When I heard what was available, it sounded so bleak. It felt like a punishment to send her.” Noting the lack of transportation options and support, Greey added, “She would be totally isolated, away from the community she knew.”
Today, Nausbaum is a working actor. She lives in a home, purchased by her mother, with a peer mentor and two roommates with disabilities.
“I am a young adult who has my freedom now,” Nausbaum says.
AvRuskin and Richmond acknowledge that if their lawsuit is successful, it may result in the creation of more of the kind of placements they’re not interested in. “We don’t want Jake in a home or a day program just sitting around, watching TV,” AvRuskin says.
British Columbia could be an example for starting fresh in Ontario. There, micro-boards — organizations that focus on a single individual with a disability — make it possible for friends and families to finance their own supports. These non-profit entities can own property, hire staff, and run customized programming for the individual. What started as one family’s solution now, with legislative backing, extends to 1,200 families. The provincial government is also working to involve families and individuals more in the design of new services.
Audrey Cole, 91, of Smiths Falls, whose 54-year-old son, Ian, has Down Syndrome, has spent 50 years advocating for disability rights in Ontario, and she sees big differences between the two provinces. She worries that the pressures Ontario families face have made it more difficult for them to advocate for shared solutions. Regardless of the outcome of the lawsuit, she says, the province’s system needs to change.
“When the government talked about closing the institutions here, they had a limited and bureaucratic understanding of what community means,” Cole says. “It meant transferring people from the institutional system to smaller institutions. Now, with the wait-lists, they are looking for somewhere to house people. And families are just trying to figure out what to do. I don’t think you can make change one person at a time: we have to be in it together."
Sarah Schulman is a journalism fellow at the Munk School of Global Affairs, University of Toronto.
Correction: An earlier version of this article misspelled Krystal Nausbaum's surname. TVO.org regrets the error.