Every day, the Canto family speeds closer towards a precipice.
Their son Matthew has severe cerebral palsy and requires 24-hour care, and at 18, the pediatric services that have kept him and his family going are slowly evaporating.
First to go, on his 18th birthday, was the respite funding from the Ontario government that helped Matthew’s mother Rose pay for extra help so that he could join the family on the occasional trip.
In two more years, it will be Matthew’s school, where he gets to hang out with classmates with similar disabilities and do favourite activities such as swimming.
“I’m at peace when he’s at school,” Rose said.
She’s worried about a future where Matthew could end up isolated at home, in the care of his aging parents.
“I’ve been looking around for day programs and there really are very few programs that can accommodate his needs. And if I do want to put him in a program I’ve got to hire a nurse,” said Rose. “It just becomes very, very expensive.”
The Cantos are far from alone. Across the country, stories are piling up as families anxiously watch their children with disabilities age out of care, graduating into a under-resourced system where programs are few and far between.
In Newfoundland, a woman in her 60s fears getting sick because of what could happen to her developmentally delayed adult son.
In Manitoba, a group of people with disabilities who “aged out” and found themselves cut off from meaningful access to education and work filed a human rights complaint.
And in Nova Scotia, parents are so discouraged by the years-long wait times for community care spots for their adult children with disabilities that they have stopped putting their names on waitlists altogether.
It was one of those stories — from the Geddes family, in Toronto — that inspired CBC Radio’s White Coat, Black Art to bring together families and experts in town hall meeting called Crisis of Care: Help for Families and their High-Needs Kids as they Age out of the System.
Gilly Geddes, who has autism, will be out of school in two years. Her parents, Ian and Rachelle were told it could be a 20-year-wait for residential care. There are at least 12,000 other Ontarians also waiting for a space.
Fear, anxiety, dread
Like the Cantos, they fear for Gilly’s future, particularly as they themselves grow older.
“I think our fear is that there isn’t a clear plan,” Rachelle Geddes told White Coat‘s Dr. Brian Goldman. “We’re managing, we’re managing, we’re managing … and heaven forbid I get T-boned at an intersection or something.”
As Dr. Yona Lunsky explained, a sudden drop-off in resources and programming can have a devastating toll on people like Gilly and Matthew.
Lunsky is the director of the Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health at Toronto’s Centre for Addiction and Mental Health (CAMH).
“You’re isolated because you can’t leave your home, and you can’t be connecting with other people. You’re not doing something meaningful during the day, [and] you’ve lost the friends you are connecting with when you went to school,” Lunsky said.
It’s a transition that can set the stage for a mental health crisis, not only for the person being cared for, but for entire families.
“If you don’t have the supports and services you need, whether you have a disability or you’re a parent or a sibling… you’re feeling this anxiety and this dread perhaps about what’s going to happen,” she said.
Families versus the system
That dread – and a struggle that extends to an entire family – rings true for Don Andersen. His 16-year-old son Jamie, who has Phelan-McDermid Syndrome, is now living in a residential care home.
A social worker friend helped his family navigate what Andersen describes as “an opaque system with silos” to get his son a spot in residential care.
“I don’t know how anybody gets through the system without a navigator,” he said.
It was a frequent refrain from experts and families alike: services are spread across multiple government ministries and communication between them is poor, leaving families confused about where to turn.
Here’s what audience member Brian Cox had to say:
Concerned about where his 33-year-old disabled son Kapil would live after he was gone, audience member Surjit Sachdev created a non-profit that aims to co-house seniors and people with disabilities.
“You share meals, you share circumstances, you share your milestones…you live in an healthy safe environment ….[you’re] living a dignified life,” said Sachdev.
Financial planning for the future
Beyond advocating, what else can families do to ensure their adult children’s future?
Lawyer Brendon Pooran, who specializes in disability law and helps families plan for the future, suggests starting to plan while children are still young, looking into forming a microboard and establishing a savings account.
A microboard is a “group of family and friends that come together with an individual to form a small not-for-profit corporation.”
The group works together to help the individual make decisions, and “the statistics show … they do facilitate a good life for people,” said Pooran.
His second suggestion is setting up a registered disability savings plan, “a fantastic long term savings plan designed for people with disabilities implemented by the federal government in 2008.”
Banding together for change
Though financial planning is always prudent, Mona Sidler-Hosios warns that newcomers and families without independent wealth can run into additional barriers.
Sidler-Hosios, who works as an occupational therapist at the Toronto District School Board, described the lack of resources for the students she works with who are aging out of care as “reprehensible.”
“The students that I work with … are at the bottom rung of the ladder. There isn’t enough publicity. There isn’t enough talk about it, and I think that’s part of what the problem is.”
She suggested parents band together to fight for their children. “Why do people who are truly in need have to struggle to get the disability tax benefit, have to struggle to get residential setting, have to struggle to get residential health services?” she asked as the crowd applauded.
Another panel member, Wesley Magee-Saxton, also called on the audiences to raise their voices to help make change.
Magee-Saxton, who has cerebral palsy and uses a motorized wheelchair to get around, transitioned from high school to his first year of university, where he is studying acting.
“Two words: social media,” he told the audience. “Share your stories.… The more we post about it, the more it becomes recognized and the more people are pressured to do something about it.”
The need for a national strategy
For Pooran and panellist Dr. Jan Willem Gorter, director of the CanChild Research Centre at McMaster University, it’s a national strategy to approach the problem that’s most needed.
“Trying to facilitate some sort of forum … between federal, provincial and territorial jurisdictions is vital to solving these systemic issues,” suggested Pooran.
For Rose Canto, it’s timing that’s the imperative.
She hopes that respite services and residential care improve sooner rather than later, for her family’s sake.
“I’m getting older and I know I can’t continue to do this forever,” she said. “I need to make sure that my son will have a place to go.”
Written by Kate McGillivray. White Coat, Black Art’s town hall was produced by Erin Pettit.