KELOWNA - It’s called "the cliff" and its something the mother of an autistic child says can keep her awake at night.
From birth to age six, a child diagnosed with autism spectrum disorder is eligible for $22,000 a year to help parents with treatment and intensive intervention. After that, provincial government support drops to $6,000 annually until age 18.
Then it ends completely, reaching what some parents call ‘the cliff’ — the point where the now-young adult loses the treatment and support funding they have received since diagnosis and must undergo cognitive testing to determine their eligibility for continued government funding.
It’s also the point where parents with high-functioning autistic children hope they might become more independent, possibly living on their own and developing independent coping skills — getting their own life and giving the parents back some of theirs.
Now a pair of Kelowna sisters, Kate and Britney Stewart, are launching a service aimed squarely at those parents, offering transitional rental housing along with life skills training and helping allay their fears about the future of their children.
“There is a lot of high-functioning children on the autism spectrum. Transitional housing will help them move from living at home to living on their own,” Kate Stewart says. “They don’t have a lot of choices when it comes to living on their own. Some can go into a group home but they can leave a lot to be desired.”
Kate says some group homes, while they mean well, will lump people with cognitive disabilities in with others with physical disabilities, a pairing that can have negative effects on the progress an autistic youth may have made during their teens.
“That can set them back. It doesn’t give them a chance to grow or learn how to live on their own,” she says.
Kate has worked with children on the autism spectrum for the last two years, graduating last June from UBC Okanagan after earning a BSc in psychology. Her sister Britney is a certified holistic nutritionist who is also pursuing her psychology degree.
The plan calls for the two women to buy a five-bedroom house, with Britney serving as a live-in, onsite supervisor while Kate works directly with residents on a regular basis, coaching them in everything from cooking to cleaning to resume writing.
Unlike traditional group homes, where there may be eight or nine bedrooms, the plan calls for no more than four residents.
“We definitely want to avoid that group home feeling,” Britney says.
Keeping it small also allows them to avoid the zoning and other regulatory requirements that large group homes must meet such as installing fire escapes and sprinkler systems.
“Of course, we will still have fire extinguishers and an evacuation plan, but we don’t have to put all that money up front,” Britney says.
Unlike a traditional group home, the residents are expected to eventually move out, Britney adds, hopefully as roommates with one of the other residents.
“We’re not going to kick them out if they are not ready, but hopefully they will eventually move on with their lives.
The need for the service stems from Kate’s employment with Stepping Stones, a private company based in the Okanagan that provides professional behavioural intervention programming for children and teens with autism spectrum disorder.
There, the need for a “practice suite” for autistic teens to practice life skills has long been obvious, Stepping Stones owner Deanne Leung says, pledging her continued support for the two women and their project.
Although the price has yet to be fully established, the sisters admit their service will not be for families without at least some financial resources.
And Kate stresses the service should not be viewed as assisted living and families will be expected to stay closely involved with their children during the transition.
“We think the peace of mind will be worth it,” Kate says.
Parents obviously see the need too. The sisters held an information session explaining the service just before Christmas and already have provisional commitments for three of the four spaces.
The are holding another information session at 7 p.m. on Monday, Jan. 18. If you’re interested in attending, email Britney at firstname.lastname@example.org to confirm your attendance and find out the location.
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