There’s a funding shortfall for adults living with autism, says Alcona mother
The Alcona resident is the mother of 21-year-old Zach, who has been diagnosed with Autism Spectrum Disorder. Zach is an outgoing and friendly young man, and is just beginning the transition from high school to the rest of his life. Unfortunately, that new phase comes with some challenges.
Zach cannot work a full-time job, and is in need of constant supervision. School gave him a place to go every day, under the experienced eyes of watchful professional caregivers. It also allowed Gloria to work steady hours at a local store.
“Now, all of his social interaction is gone,” said Gloria, sitting at her kitchen table, surrounded by stacks of paperwork related to her son. “They’re allowed to stay in school until the age of 21. At 21, there are some programs out there, but they’re very limited. He’s been on a wait list for funding since 2010. The waiting lists are quite long. It’s not like school, where I could drop him off at 9 (a.m.), and pick him up at 3:30 (p.m.). He could not do a full day shift. So I need to be allowed to work and provide for him, but also allow him to be more independent.”
So now that Zach is out of school, Gloria is essentially forced to make a choice — reduce her work schedule, in order to look after him during the daytime, or pay a significant amount of out-ofpocket cash for assistance. Neither option is particularly feasible for the single mother, who lives a tight budget.
Zach can attend some part-time programs at this point, but the hours are short and rigid, and Gloria has to cover the cost.
“He cannot be left alone; he’s autistic and gets seizures,” said Keiser. “How can I work, and get him to his programs at the same time? How do I keep him socially active, and achieving to his best ability?”
The Ministry of Community Services and Social Housing is responsible for funding transitional care, and has spent roughly $8.2 billion across the province since 2009. The ministry gives the money to regionalized Community Care Access Centres and other agencies throughout the province, who are then tasked with distributing the funds for programs and services within their jurisdictions.
Progressive Conservative MPP Julia Munro admits Keiser’s situation is becoming commonplace. As families struggle to pay for care, it’s become clear more funding is needed. The system should also be simplified, because many families are unaware of the agencies, programs and supports that may be available.
“I’ve met with families faced with similar situations,” said Munro. “The assumptions families have always been given is that there would be group homes, or things where their children could live semi-independent lives, depending on their abilities. All of a sudden, as they’re approaching (the end of school), they realize this is not the case. Those spaces are not available. It’s really quite devastating. You can see why people just drop their hands and say they can’t deal with (navigating the system for care).”
Locally, funding for transitional services is split between the North Simcoe Muskoka CCAC, Simcoe Community Services, and other organizations.
“Transition should begin as early as Grade 10,” said Debbie Roberts, of the North Simcoe Muskoka CCAC. “CCAC would be a partner in the transition if we were providing school-based services, but there are many children transitioning that are not on CCAC services.”
Simcoe Community Services CEO Marion Peck says there are many programs available to aid autistic residents in the transition out of high school. That can include full-time accommodations, counselling and outreach programming, among other options.
However, residents seeking help are required to apply through Developmental Services Ontario first, where they provide proof of diagnosis, and other important documentation. If approved, the residents are then placed on a waiting list for service.
But there’s little indication of exactly how long an autistic resident could wait for assistance — that depends entirely on arbitrary factors like funding and demand.
“The applications are reviewed, and the people are matched to available services in our community,” she said. “There’s usually a wait list for services. There are several agencies in the region that offer different types of services. Some require residential service, and others need day support or respite. Where spaces are available, people are introduced. In most cases, there’s some type of support available. They start at age 14 or 15, and the transition is long with many steps. We’re always challenged to meet everyone’s need. Of course there are limitations, and limited resources. There’s so many elements that come into play. The planning committees in the county are very well run; there is a good process in place. We’re all doing our very best to work within the resources we have, to ensure people are being served.”
It’s clear transitional funding is an issue affecting many families across the region, said Autism Ontario’s Simcoe County chapter manager Erin Nightingale.
“The lack of funding for adults is a growing concern for many families,” she said. “It’s something that parents with six and seven-year-olds worry about right now. There are resources, but with everything, funding is limited. Autism has a huge spectrum; there’s kids that go on to careers. But there are a lot of families that struggle with the fact they’ve got an adult at home, and they need to support that person.”
Nightingale says a new government program, Passport, does provide some money for qualified adults living with developmental disabilities. The government will also match money placed in a Registered Disability Savings Plan.
“At least it gives you the peace of mind that you’re leaving something set aside for your child,” she said, of the RDSP.
But Gloria is feeling frustrated by the bureaucracy, overall lack of funding and a belief that few people in power are paying attention to her struggles.
“Funding is not coming down,” she said. “There are other parents having issues with DSO. It needs to be loud and clear that programming funding needs to be brought in. I can’t leave him alone, which means my only other option is to go on welfare. I don’t need to do that; I need programming to help him. I don’t want to go on welfare.”
The ministry is currently running Adults Count! A Survey on Youth and Adults with ASDs in Ontario, which aims to collect details on the programming and service needs within the province. To access the survey, visit www.redpathcentre.ca.
For more information on programs available to people living with autism, visit www.mcss.gov.on.ca or www.autismontario.com.
Gloria also wants to hear the stories of other families who are experiencing similar difficulties with transitional funding. To contact her, email firstname.lastname@example.org.