Michael Deskin stares at the computer screen, trying to calm himself as he watches The Jungle Book, the animated Disney film about a boy raised by wolves.
His mother, Brenda Deskin, asks him to move to the living room, where there is more room to talk.
“No, no, no!” Michael yells, his teeth starting to chatter, a sign that he is becoming anxious.
"What do you want? Look at Mummy.”
He starts to hum. "I want blanket.”
Michael makes his way outside, clutching a soft white blanket to his 6-foot-1, 205-pound frame. He rocks himself on the porch swing, as one of the family’s three dogs, a petite pug named Petunia, weaves underneath his seat. A smile forms on Michael’s lips.
Michael has severe autism. The 24-year-old lives at home in Ancaster, west of Hamilton, and requires constant supervision, either by trained specialists or, increasingly, his parents. He has beaten himself black and blue; run across parking lots; put a therapist in a headlock. He has recently taken to sticking his fingers down his throat until he gags or throws up.
“You really can’t take your eye off him for a second,” Ms. Deskin, 52, says. “Michael’s behaviour has started to be getting too much for my husband and I for quite some time.”
The young man’s care – essentially how much treatment should be covered by the general taxpayer – is now at the centre of the latest battle between the autism community and Ontario Premier Doug Ford’s government.
Michael’s parents are among seven families of nine autistic adults who are suing the government for breach of contract and negligence after their funding – previously labelled “court-ordered” – was abruptly cut off this summer. Their fight raises difficult questions about fair treatment of autistic children, the limits of public funding and the duty of governments to honour past commitments. The government’s autism advisory panel, which released its recommendations on Wednesday about how to fix the province’s autism program for children and youth, said it was, in general, “concerned about the needs of autistic adults and we encourage the government to review this situation.”
It’s a battle the families fought and won once before. They were part a larger group who went to court in 1999 to challenge the previous Progressive Conservative and subsequent Liberal governments over a policy that limited funding for behavioural therapy to children under the age of six. Because of the group’s advocacy, the government extended funding for all children to the age of 18.
In 2004, under a Liberal government, a court ordered Ontario to pay for autism therapy for the children of those families. The decision was successfully appealed two years later, but the government continued to fund the individual treatments at a total cost of about $1.5-million a year. It was part of an agreement made during the appeal process, with the money coming from outside the province’s official autism program.
It continued for 15 years, the families contend, because a promised transition that would have allowed their adult children to receive equal services never materialized. In a letter to Ms. Deskin dated February, 2007, then-assistant deputy minister Alexander Bezzina wrote, “No changes would be made to the manner in which your son’s program is currently administered nor to the funding amount unless you were completely satisfied with alternate arrangements.” The promise was also repeated in two provincial auditors-general reports.
However, in February, the families received a letter from the Ministry of Children, Community and Social Services, formerly led by Lisa MacLeod and now by Todd Smith, telling them the money was set to end on Aug. 6.
The families were urged to apply for adult services under disability programs, which do not offer them nearly as much money or flexibility. For example, Ms. Deskin, who manages the office for her husband, a dentist, said she used to be able to afford 80 hours a week of therapy for Michael, but that has been cut to about 30.
The seven families have retained Toronto law firm Henein Hutchison. Partner Scott Hutchison is working pro bono alongside human-rights advocate and Order of Canada recipient Mary Eberts, but the family is raising funds for the junior lawyer handling their case.
The government has not commented directly on the case, citing the legal action filed on Sept. 30.
Queen’s Park has 60 days to respond and has suggested in statements that the cut-off is a question of fairness. In a May 9 letter to Ms. Deskin, government lawyer Robert Ratcliffe argues that the payments were “ex gratia” – a gift to the families as a matter of policy, not contract. The government has already doubled funding for the Ontario Autism Program, which funds children’s services, to $600-million, after significant outcry from the community.
“We are committed to giving adults with developmental disabilities, including autism, the support they need to fully participate in their communities,” Mr. Smith’s spokeswoman, Christine Wood, said in a statement. Autistic adults are also eligible for funding through the Passport program, which helps adults with developmental disabilities live more independently.
Laura Kirby-McIntosh, president of the Ontario Autism Coalition, said she supports the families’ fight. In her view, the government is obliged to honour its original commitment to fund treatment until there’s an alternative.
She praised the families as the “original autism warriors,” who fought for treatment for all autistic children.
“They weren’t doing it just for their kids, they were doing it for all kids. So they got that court-ordered settlement, and I think it was well earned,” she said. “Am I aware that, yes, it’s more than some families get? Yes, but that’s not their fault.”
Disability advocate and lawyer David Lepofsky, chair of the Accessibility for Ontarians with Disabilities Act Alliance, said that if the families were promised ongoing payments, they should continue to receive them.
“For me, the wrong question is: Is it fair to get it when others don’t? The right question is: Is it fair for others not to be getting it if these individuals have shown that they need it and benefit from it just as others would?” he said.
In total, Ms. Deskin says she’s out about $150,000 a year, money that was used to pay for trained staff and consultants to work one on one with Michael. Wait-lists for group homes in the province stretch into the thousands, with only a few hundred new spots a year. Michael does get about $1,100 a month under the Ontario Disability Support Program (ODSP) and, since the funding cut-off, has received an additional $1,000 a year in Passport funding, for an annual total of $39,000 in Passport support, Ms. Deskin says.
She says Michael has been assessed as needing two-on-one care, but the family has never been able to afford it. He also does not have overnight care.
After Michael’s funding was cut off, the government directed her to Developmental Services Ontario (DSO), which helps adults with developmental disabilities connect with services and supports in their communities. But she was told there was no extra money for her family, and the DSO told her to go to the local Salvation Army resource centre. All they had to offer was a wall of gadgets and books about autism.
“It actually boggles my mind," she says. “You don’t just abandon people. You don’t abandon especially high-needs adults … give them something and then take it away. You just don’t do it.”
For Robyn Wynberg, who is also part of the lawsuit, the changes are already affecting the lives of her twin autistic sons, Nathaniel and Sebastian. The young men, known as Nat and Bas, are 27, stand 6-foot-4 and 6-foot-5 and weigh about 230 pounds. Until recently, they lived on their own in a Toronto apartment with 24-hour assistance. Nat has much higher needs than Bas, who can carry on a conversation about his schedule and has a part-time job at a gym and delivers baked goods.
The family came to the independent living arrangement after Nat spent years in a group home. At 16, he was sent to the home after he wrapped his arm around his mother’s throat while she was driving on the highway.
“Nathaniel can be a very, very dangerous person. He cannot not have support,” Ms. Wynberg said.
This summer, Bas checked himself into the emergency psychiatry department at a Toronto hospital when he felt himself becoming anxious because of lack of support.
Since the funding cut, which totals about $350,000 a year for the twins, they have had to move homes for a few days a week, as the family can’t afford full-time care. Ms. Wynberg, 58, is on stress leave from her teaching job, and their 64-year-old father, Simon, a musicologist, has battled leukemia for the past seven years. The young men also each receive $1,100 a month in ODSP money and $17,500 annually in Passport funding. The family is now paying almost $6,000 a month out of pocket.
“You have two potentially aggressive and violent people walking around the city. You have parents who are not able to work. You have parents who are getting more and more sick by the day," said Ms. Wynberg. “This can’t end well.”
An earlier version of this story said Sebastian and Nathaniel Wynberg had a $300,000-per-year funding cut. In fact, it is $350,000.
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