Wait list for residential spots shot up 30% since 2008
People with severe developmental disabilities are waiting longer than ever for services in the Ottawa Valley, and some may never receive the care they need in their lifetime.
Social services groups in eastern Ontario said families with disabled children often languish for years while waiting for home placements to open up.
A current backlog of 427 people are on a wait list for group-home placements in the Ottawa Valley, with 100 of those names added within the last three years.
Aging demographics have exacerbated the problem.
On Wednesday, care groups called on the Ontario government to support programs with more funding, warning that the current situation will only worsen as parents age to a point where they’re no longer capable of caring for their disabled adult children.
More than 10 years to find placement
Cathie Hogan, whose 21-year-old son, Ty, is severely autistic, was blunt in her assessment of the current wait list.
‘Unless somebody dies in Lanark County, you don’t get a bed.’—Jennifer Gauthier, whose son is severely disabled
“Essentially, you have to wait for someone on a group home to pass away for a place to become available,” Hogan said.
Now a full-grown man, Ty requires constant supervision. Aside from his autism, Ty also suffers from a medical disorder called Pica, which compels him to eat inedible objects. Recently, a sharp piece of plastic he swallowed perforated his bowel, sending him to hospital for 10 days.
Hogan and Ty spent more than a decade waiting for Ty to get a placement, as priority is given to those most in need, rather than those who have been waiting the longest. They finally lucked out with a space last week.
Still, others in the Ottawa Valley are less fortunate.
The financial support for families trying to cope on their own is insufficient, said Laurie Gauthier, whose 15-year-old son, Cameron, has a rare disease
that has left him legally blind, bound to a wheelchair and prone to seizures.
According to social services agencies in the southeast region, the number of families waiting for a residential spot for someone with a developmental disability has shot up 30 per cent since 2008. The demand for day programs has increased 50 per cent to 231 families.
“Unless somebody dies in Lanark County, you don’t get a bed,” Gauthier said. “It’s awful because you’re on death watch all the time. You’re not hoping for somebody to die, but even if somebody dies, your chances of getting a spot are slim to none, because you’ve got all of these other people waiting.”
Worries for elderly parents
Jennifer Nicholson currently provides “total care” for her nine-year-old son, Teagin. He suffers from autism, and has violent seizures.
“He is non-verbal,” she said. “I feed him, he wears diapers, I dress him, everything.”
The work is exhausting, yet Nicholson said Teagin only gets one day of respite care every two weeks.
Nicholson worries about what will happen to her boy once her and her husband are no longer able to care for him.
“There is no help and the group homes are full,” she said. “So we might do it until we are gone, and then I don’t know who does it.”
The financial burdern is another worry. Hogan said that once Ty turned 18 years old, financial support dropped dramatically — by about $17,000 a year.
And while the Ontario government pays for some basics such as mobility equipment, there are limitations.
Only one piece of Cameron’s mobility equipment was paid for, for example, but not two. And although Teagin is eligible for $35 per-month food allowance,
his supplements alone cost $400 a month.
Gauthier said that after doing her taxes, she calculated the gap between government support and what was required to care for Teagin totalled about $12,000 a year. Now, she said, she’s worried about being able to afford college or university for her other children.