Dec 2, 2023, St. Catherine’s Standard (Ontario): ‘A slap in the face’: Doug Ford pledged to fix autism wait times but families are waiting longer — and losing hope https://www.stcatharinesstandard.ca/news/ontario/a-slap-in-the-face-doug-ford-pledged-to-fix-autism-wait-times-but-families/article_e6d5d99c-7089-5e39-8b52-d3313edef951.html
Under the government’s new Ontario Autism Program, fewer young children are receiving core clinical services, experts say.
Ashley Ferreira says she feels sick with worry every day.
Her son, Owen, has autism and she knows he’s not getting the help he needs.
The eight-year-old with wavy brown hair, who likes to give hugs and loves to collect facts about old cars and trucks, sometimes finds it hard to go into crowded spaces, or meet new people. But taking June, his favourite stuffed bear, to school, stores and other people’s houses can help.
More than three years have passed since Owen was diagnosed with autism and put on a wait-list for government-funded therapy.
At the time, Ferreira felt confident she’d soon be able to get Owen, then five and struggling to communicate, much-needed therapy and supports.
Now, three years later and still waiting for government help, she has little hope left. “It’s been like a slap in the face finding out there is no help for Owen.”
Ferreira and her husband, Dan, are paying for their son’s therapy while awaiting government support. They know early intervention is key.
But it’s costing them more than $40,000 [$29K] a year — which Ferreira says doesn’t come close to covering Owen’s needs — and wrecking their finances.
Facing massive debt, and already deferring some household bills, Ferreira says they may soon be forced to sell their Kawartha Lakes home.
“We’re just trying to get through this and keep the lights on,” she says. “But we’re paying out-of-pocket thousands of dollars a month, every month. Every time I get a bill, I have to decide between paying it or paying for Owen’s therapy.
“The reality is, we can’t keep doing this for much longer. It’s a terrible feeling.”
Waiting for core autism therapy
The Ferreiras are among thousands of Ontario families facing years-long waits for government funding to pay for their child’s core autism therapy.
Funding has for years been a politically charged issue in the province. Since the Ford government took office in 2018 and pledged to repair the Liberal’s “broken” autism program, four different ministers have handled the file….
Dr. Justin Jagger, a pediatrician in Thunder Bay and section chair of Pediatrics at NOSM University, says families are falling through gaps in a hard-to-navigate system that is underfunded and understaffed — problems magnified in rural, remote and northern communities…..
Alina Cameron, who lives near Thunder Bay and is president of the Ontario Autism Coalition, says families suffer when they don’t know their child’s place in the queue for government-funded therapy.
Her family waited more than five years for publicly funded essential autism services for their daughter, now eight….
Ontario Autism Program overhaul…
The Ford government’s overhaul of the Ontario Autism Program was meant to slash wait times.
The first attempt to fix the system in 2019 had the goal of clearing a wait-list of 23,000 kids. It was met with frustration and outrage. Parents protested the plan, which set annual childhood budgets with maximum amounts depending on a child’s age and family income.
Following the outcry, a government-struck panel recommended Ontario move to a program providing funding and supports to meet a child’s needs. The government also increased the program’s annual budget to $600 million [$442M] from about $300 million [$220M].
The new program, scheduled to launch in spring 2020, got underway the next year, due to COVID delays. Some 600 children started to receive needs-based autism services in March 2021. At the time, critics pointed out there were more than 40,000 kids and teens with autism in the province.
Premier Doug Ford has defended his Conservative government’s efforts, saying it inherited a broken system, and stressing it doubled the funding for autism services. More than six years later, families and advocates charge that the government’s efforts have not shortened the wait-list for core therapies.
The Ontario Autism Program requires families to apply for funding for essential therapies, rather than having physicians refer children to publicly funded community services.
It can only be accessed after a child has an autism diagnosis — which often takes up to two years in Ontario. Families then apply with AccessOAP, the independent intake organization. Once they clear the wait-list, they’re assessed to determine how much money they need for their child. With cash in hand, families must then find a therapy or service provider and pay them directly.
Families and experts say backlogs and bottlenecks exist at every step, compounding their waits.
And while the program does offer some publicly funded supports to qualified families after they register with AccessOAP, including an entry-to-school program helping kids prepare for kindergarten, critics say they don’t adequately address the needs of young children who require therapy, especially those with intense challenges.
In response to questions from the Star, the ministry said in a statement that it has doubled the program’s budget and increased it a further 10 per cent to over $660 million [$486M], and that “more families are receiving services than ever before.”…
According to an internal ministry document, obtained under access-to-information legislation by the Ontario Autism Coalition, nearly 60,000 children are registered for the Ontario Autism Program with about 7,000 more projected to be added to the list each year.
As first reported by The Canadian Press in July, the ministry acknowledges the shortfalls in a transition binder given to Children, Community and Social Services Minister Michael Parsa when he took the role in March. These documents are the same as those obtained by the Ontario Autism Coalition.
“Families can access a range of other (Ontario Autism Program) services, but most children and youth will not receive core clinical services funding in the short to medium term,” the document states. It notes only 20,000 children can receive core clinical services with the current $667-million [$491M] budget.
A more recent internal ministry document, obtained by The Canadian Press and reported on in October, shows 8,758 children with a funding agreement for core clinical services as of mid-July….
Helping Owen
Ferreira first suspected Owen had autism when he was a toddler.
“He was a one-word kid,” she says. “By the time he was three, we felt like there was more going on than him just being behind.”
Their family had to wait more than two years to see a developmental pediatrician who could diagnose Owen with autism. By then, he was five.
The Ferreiras had already started to pay for private speech language therapy to help Owen communicate. It was working; he had started stringing words together, like “Owen want drink.”...
Under the new Ontario Autism Program, fewer young children are receiving core clinical services, which means many are missing a critical period for early intervention, says Nancy Freeman, director of core clinical services at Surrey Place.
She says families with government funding in hand to purchase therapy often have older children already in school. She worries that under the new program, young kids are not getting enough direct intervention, risking their long-term well-being….
Janet McLaughlin, an associate professor of health studies at Wilfrid Laurier University, says the new Ontario Autism Program may be creating a two-tiered system “because those who can’t afford anything, don’t get anything” while they wait years for publicly funded essential therapies.
“This has huge equity implications,” says McLaughlin, co-director of the Laurier Autism Research Consortium. She notes, for example, that only those people who can afford to pay privately for speech therapy will be able to support their autistic child while on the wait-list…. “
Hewitt says staff at Surrey Place are constantly hearing from families desperate to get early intervention for their young children.
And while there are long-standing system challenges that require years-long solutions, including training more health professionals, such as occupational therapists, to meet demand, Hewitt says the government can make immediate adjustments to the Ontario Autism Program that will help more kids in the short term….
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