DISABILITIES TAKING TOLL
Gretzky’s bill aims to extend support to families
When Windsor’s Gregory Rocheleau turned 18 last month, there was cake and a celebration — but his passage into adulthood also triggered behind-the-scenes tears and panic for his single-parent mom. “Deep down inside, I was very sad. I felt overwhelmed,” said Mary Beth Rocheleau.
Gregory has severe autism and requires constant care. But in Ontario, once children with developmental disabilities who have been receiving publicly funded supports and services turn 18, that assistance ends abruptly.
“It’s totally cruel,” said Rocheleau. “On my son’s 18th birthday, his sister and I took a $7,000 financial cut.”
There are financial supports for Ontario families of adult children with disabilities, but there’s a long waiting list, and it’s currently at 14,000 names and growing, according to Windsor West MPP Lisa Gretzky.
Rocheleau said some families have learned they could be without such assistance for up to six years. In her online support group, which details the physical, emotional and financial toll on families, she’s heard of some who have given up homes to pay for continued services, as well as of parents who have divorced or dived into depression and become suicidal.
“It’s life-changing — this is a huge, huge deal,” said Rocheleau. “As the kids get older, the care gets heavier, and then, when you need it most, they pull it away.” In severe cases of autism, as with her son, she said caregivers must be specially trained and qualified, and she now has to cover caregiver costs of up to $22 an hour while she’s working. A single mother of two and professional nurse working full-time, Rocheleau said she doesn’t have benefits, employed by a temp agency in order to have flexible hours.
“It’s so stressful — there’s a huge gap that people are falling into,” said Gretzky.
Once a child is diagnosed with such a disability, she said it’s a constant fight to get and maintain the necessary supports and services. “And then, when their child turns 18, the parent is blindsided.” Gretzky, the NDP’s community and social services critic, has introduced a private member’s bill, Noah and Gregory’s Law, aimed at eliminating wait times for people with developmental disabilities once they enter adulthood. She said it was scheduled for second reading in the Legislature next Thursday but the Progressive Conservative government ended the current session a week early. The target date now is February 21. The bill is named after the adult sons of Rocheleau and fellow Windsor developmental disabilities advocate Michelle Helou, whose child Noah also has severe autism, which is a complex medical condition.
“If this bill passes, it would be monumental for individuals with disabilities and their families,” Helou said at a news conference Friday at Gretzky’s Windsor constituency office. Rocheleau has been fighting for years to get the province to do more to support families of adult children with disabilities, including one emotional town hall exchange in Windsor earlier this year with then-premier Kathleen Wynne. The Liberal leader promised to do more, but her government was defeated a few months later. Given past statements by the Tories — before they formed government in June — recognizing the need for more support for those with autism, Gretzky said she’s confident of support for her proposed legislation. Rocheleau said there’s an online petition — #MyVoteCounts — and letter-writing campaign by the PAD Parents of Adults with Disabilities Advocacy and Support Group, both on Facebook, that she hopes will help garner support among MPPs for Gretzky’s bill. “It’s not just me — there are thousands of other families in Ontario,” she said.
Michelle Helou, left, with son Noah, and Mary Beth Rocheleau with son Gregory, at a news conference Friday where MPP Lisa Gretzky talked about her new private member’s bill — Noah and Gregory’s Law — that seeks to eliminate wait times for those with developmental disabilities.