Parents slam new 'needs-based' autism program for funding, age caps

By Sneh Duggal and Jack Hauen

The Ontario government plans to start offering long-awaited "core services" including therapy and mental health services to 600 children with autism next month. As part of the new program, the government plans to cap yearly funding at $65,000 for young children, with that amount going down to $31,900 for the oldest youth in the program — a move that some advocates have decried as not being needs-based.

Minister of Children, Community and Social Services Todd Smith said his ministry will identify 600 youth this month who will be invited to be the first group to receive core services — Applied Behaviour Analysis, occupational therapy, speech therapy and mental health services — through the new Ontario Autism Program.

"They'll represent a diverse sample of families within the Ontario Autism Program by including children and youth from every corner of the province of various ages and genders as well as a mix of individuals with behavioural plans and families receiving direct funding," said Smith.

The minister said the government decided to start with 600 families so it can "make sure that this program is going to work" and review and adjust the process as needed. Smith said the goal is to have 8,000 youth in core services "by the end of this year when the program is up and running."

"Today is an assurance to families that we’re making progress on this needs-based autism program and that it’s on its way. This isn’t easy work and we know how difficult the last year has been on every family. No government has ever gotten this right and we want to ensure that we never have to come back here to start from scratch," said Smith, adding that he thinks the new program will be the "gold standard."

The 600 families will be contacted in March to start the "determination of needs process" to identify how much funding each child will receive, all of which will be overseen by the Child and Parent Resource Institute, though the government has put out a call for applications for an organization to ultimately oversee these key aspects of the program.

Smith said each family would be assigned a "care coordinator," who would help families and allocate funding "using a standardized tool." They would also connect families to clinicians, he said.

The government outlined that part of this process would include a care coordinator asking families several questions to understand each child's goals and strengths in the following areas:

• Communication: how they communicate and understand others
• Social interaction: how they participate in social situations and interactions
• Play and leisure: how they play both independently and with others
• Activities of daily living: how they complete daily tasks such as getting dressed and eating
• Motor skills: how they participate in activities involving fine and gross motor skills (ex. writing and walking)
• Cognitive skills: ability to follow instructions, concentrate and solve problems
• Sensory system: managing reactions to stimuli
• Interfering behaviours: how they manage behaviours that could impact daily life
• Mental health: how they manage needs that impact resilience, daily functioning and capacity to access or engage in services

The government said other factors would also be considered including "developmental and life stages, as well as coexisting health and environmental factors."

Care coordinators will then classify needs as "extensive, moderate or limited across different age ranges," which will then translate to a certain funding allocation:

• Ages 0–3: $10,900 to $65,000 per year
• Ages 4–9: $8,900 to $65,000 per year
• Ages 10–14:  $7,600 to $41,400 per year
• Ages 15–18: $6,600 to $31,900 per year

"There will be an allocation of $65,000 for the most extreme cases and that will include up to 20 hours of therapy per week every week of the year," said Smith when asked during the press conference, pointing to the Ontario Autism Program Advisory Panel's final report from October 2019.

"One of the recommendations that we did receive was that we have funding allocations to a certain point," he said, adding that the funding scales "will be part of a process involving our care coordinators, but it is ultimately our clinicians that will be the ones deciding on how much ABA therapy ... an individual may receive or the other parts of core services as well."

But several parents expressed concerns about the fact that funding levels will be based on age — a worry they shared back in February 2019 when the first revamp of the province's autism program was announced by Smith's predecessor Lisa MacLeod. She introduced "childhood budgets," or funding amounts of either $5,000 or $20,000 based on a child's age. But advocates protested the plan, resulting in a promise from the government to develop a new needs-based program. While the government had planned to implement the new program by April 2020, it has seen delays.

Kerry Monaghan, an Ottawa mother of two children with autism, said the "most concerning thing … are the age caps that have been put into place."

"For the past two years, the main concern and the main argument from our community has been that a program for autistic kids cannot be based on age and seeing criteria being posted on the government website that describes dollar amounts that correlate with age ranges is still an age-based program," she said.

Her son Jack, 7, is receiving funded therapy under the previous government's autism program. At one point when he was younger, he was receiving around 26 hours of therapy each week, but that has been reduced over the years since he was also receiving support at school.

"Because of COVID, he’s only accessing about 18 hours a week, but his contract per year is upwards to $80,000 so even with a very ... conservative amount of hours for his diagnosis which is severe, he’s going to see a drop in intensity and when he turns 10 in a couple of years, he’ll see another drop," said Monaghan.

"We don’t see a failsafe for kids that have profound need, these numbers suggest to us that no child will ever receive intensive services in this province," she added, noting that she would consider intensive therapy to be around 25 hours per week.

She pointed to the maximum of $65,000 and said while the new program is providing families with access to more funding than what was offered under the program introduced by MacLeod, "there are major issues at play here."

"When we’re talking about $600 million of taxpayer money, I would hope that taxpayers are asking are we seeing a program here that is effective, that is needs-based and that is focused on positive outcomes," she said. "And having programs that top out at $65,000 per year is automatically ensuring that there are children in this province that will be receiving a subclinical amount of hours so from the get-go, it’s not needs-based."

Ontario Autism Coalition President Angela Brandt said it "felt insulting" that Smith blamed the pandemic for the delay, noting that he announced the program would be pushed back to this year in December 2019.

"Sadly, even though the ministry is touting this as a needs-based program, it is not needs-based," she said.

A true needs-based program is individualized, not based on three levels — and there should not be caps based on age, she said.

Brandt said the government is "picking and choosing" from the advisory panel's report rather than implementing a comprehensive plan.

The maximum of $65,000 is an improvement over the previous childhood budgets, but kids will still fall through the gaps, Brandt said.

"And that's why we've been calling for needs-based therapy," she said.

One positive from the announcement was the regulation of ABA therapy, Brandt said.

“That is very welcome by the community and by the ABA professionals themselves,” she said.

Kristen Ellison, the mother of a 10-year-old boy with autism, said though Smith tried to announce something "really bright and shiny," it's a far cry from what families actually need.

"Funding is going to be determined based on age, which is exactly what is not needs-based,” she said. "Anything that decides need based on age is inefficient and wasteful.”

Her son is a "legacy" child under the old Liberal program, she said, meaning he gets 25 hours of therapy a week, which has cost $71,499.96 in total, "and it's exactly what he needs."

Under the new program, her son would get a maximum of $41,400 until age 14.

"So if my child gets chosen to be one of the 600 that go into this new pilot, life as we know it is done. Because I can't get $71,000 worth of service for $41,000 just because they decided he's 10 years old," she said.

"And that's if they decide he has the most need," she said, noting that the "care coordinator" making that call could have just one day of training.

The power care coordinators will have is "very frightening," Brandt said.

As someone who has been fighting for needs-based therapy for years, this announcement is "abhorrent," Ellison said.

“Parents have spent so much time and energy trying to guide these people that I honestly don't know how they messed it up," she said. "You had to want to mess it up. And so it’s hard to feel like it’s not malicious.”

Ellison said she's exhausted from trying to get governments to do the right thing.

"I've been doing this since 2016, every day. In some capacity, every single day. Like, I'm 31-years-old. I quit my job. I'm a single mom. I moved home with my family. You know, I gave everything up. And I'm tired. It has a significant impact on your health," she said.

"I don't think people understand. What is in those documents is basically where we were over 10 years ago in this program. It’s been completely dismantled.”

She said she doesn't have faith that the government will institute a better program, but that she and parents like her will keep fighting.

“I don’t believe in them, but I believe in us," she said.

The NDP also criticized the program for not being truly needs-based and noted that there are about 42,000 children in need of autism supports, while the program will only cover 8,000 by the end of this year.

“For many, it will literally result in a cut to the amount of therapy their children can get,” children and youth services critic Teresa Armstrong said in a release.

Meanwhile, the government also said existing behavioural plans would be extended and that it would offer another round of funding to "eligible families" who previously received "childhood budget" or "interim one-time funding" payments of $5,000 or $20,000. Details on this are expected in the coming weeks.

Another $3.8 million will also go towards diagnostic hubs across the province to reduce wait times for families wanting to have their child assessed, said Smith.