Youth with neurodevelopmental disorders, like autism or Down syndrome, often stay within the structured confines of school until they're too old to attend at 21. Parents often struggle to help their children, who are now considered adults, find their place in the world.
"Before 21, there's always something to do," says Graeme S. Treeby, founder of the Special Needs Planning Group, which helps families plan for the financial futures of their children with disabilities.
"Then, at 21, you walk into a big abyss."
He has a 28-year-old daughter with cerebral palsy who is also on the autism spectrum.
Treeby and his wife, Anne, helped by a transition program at their daughter's school, searched for a suitable placement for her after graduation. They eventually secured Jenny a spot in a nearby day program. But, for some time after school, Jenny didn't have anywhere to go.
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"I still encounter far too many families where the person with the disability is sitting at home watching the TV," he says of families of children with special needs that he visits for work. "That's not appropriate."
Often, it's because there are no sufficient community resources near the family's home or they have long wait lists, he says. In Ontario, 21,000 people were waiting for assistance in 2014. Last July, the provincial government dedicated $810 million over three years to help reduce wait lists.
Treeby wants to see more programs geared towards helping young adults with special needs become part of their communities, through volunteer opportunities or day programs, like his daughter attends.
'Consistent' support needed
People with disabilities need to have a sense of belonging, like they did among a peer group in school, says Briano Di Rezze, a scientist at McMaster University's CanChild Centre for Childhood Disability Research. He studies how special needs youth transition into adulthood. That becomes challenging when "there really is nowhere to go" after high school.
Families are often left to with the "daunting task" of navigating what services may be available to their child after they turn 21, he says. Parents have to figure out not only what help is out there, but also if their child qualifies to receive it.
"It's a human right to be part of communities and to be engaged." – Briano Di Rezze, CanChild Centre for Childhood Disability Research scientist
This shift from a supportive education system to "realizing there is nothing after 21 and high school" can overwhelm families, says Di Rezze.
Programs and funding differ by province and territory, he says — even some communities are better equipped than others to integrate special needs adults.
Families deserve "a seamless and a consistent continuum of support" that integrates community and health services, he says.
They should be provided with a clear list of choices for their child's activities after school. Those services should incorporate children of different abilities, he says, and not place restrictions on eligibility based on criteria like IQ level.
Schools should also prepare youth for independent or community living at an earlier age to help prepare students for life after graduation.
"It's a human right to be part of communities and to be engaged. And for people to be held back because of systems or barriers, I think that needs to be changed," he says.
"We want to give them opportunities to maximize their strengths in a community."
'A big financial strain on families'
But even when families manage to find a program, the biggest concern is often cost, says Treeby. Day programs can cost upwards of $100 daily.
"It's a big financial strain on families."
There isn't sufficient funding to help parents pay for support or basic living expenses after their kids are considered adults, he says. In many cases, he says, parents are held responsible for providing long-term quality of life for disabled kids who won't become independent by their late 20s, like most other children would.
Not everyone qualifies for existing funding schemes like the Ontario Disability Support Program or the province's passport funding to help pay for extra support, he says.
Even those who do, may find the maximum payouts not very generous when rent, utilities, transportation, food and other expenses are taken into account.
He says there's not much planning parents can do other than "squirreling away as much money" as possible, like through an RDSP or using life insurance to fund a Henson trust. They need to make sure their savings don't exempt their child from government funds, and staying informed about local services.
Basic income plan proposed
"Poverty is the No. 1 problem" for people with disabilities, with many relying on welfare to subsist, says Michael Mendelson, a senior scholar at the Caledon Institute of Social Policy.
He believes Canadians with severe disabilities should be guaranteed a basic income in a plan similar to the country's income guarantee for low-earning seniors through the Guaranteed Income Supplement.
Mendelson co-authored a 2010 report calling for the government to introduce such a program. The report suggested offering a single person with a severe disability $12,160 annually.
Initial interest in the proposal fizzled, he says, but increased public awareness about the economic disadvantages facing people with disabilities could help make such a plan feasible.
Now, the Canadian Association for Community Living is advocating a similar idea. The organization wants to push during the upcoming federal election for a national benefit program for disabled people.