It's hurry up and wait for autism parents in Ontario as the Ford government announced Tuesday that the introduction of a needs-based autism program will not be fully up and running until 2021.
Autism parents in Sudbury were delivered a gut punch with Tuesday's announcement, after being led to believe during minister of children, community and social services Todd Smith's visit to the Nickel City on Aug. 8 that a new program would be introduced by April 1, 2020.
On July 29, the Ontario government announced that they were expanding the scope of the autism expert panel to provide advice on what a new needs-based and sustainable autism program would look like. The Ford government backpedaled on their initial plan that steered away from needs-based services and funding and looked more at clearing a waitlist of more than 20,000 children.
The Ontario government swung back toward the needs-based model on the advice of the autism expert panel, and it looked as though a course had been set to roll out the program by April of next year.
On Tuesday, Smith said only the workshop and family training piece will be ready in April. The rest is underway and will be rolled out as soon as possible, he said, but it is complex and will take time to fully implement.
"We're building a program that recognizes that every family's experience is different and that children and youth on the autism spectrum have different levels of need at different points in their lives," Smith said. "The end result will be a program that gives families access to multiple pathways of care."
While thankful that the Ontario government has opted in favour of the needs-based model recommended by the advisory panel, the Northern Ontario Autism Alliance (NOAA) says that they are disappointed and concerned with the decision to phase the program in over the next year, rather than roll out the program in its entirety in April as was originally indicated.
"Some children in Northern Ontario have been waiting since 2015 for a comprehensive therapy program and the announcement Tuesday ensures that they will continue waiting until 2021," said a news release from the NOAA.
"These families have waited through the program being underfunded by the Liberal government, the decimation of the needs-based funding in Ontario by the current government in February 2019, only to have been given false hope of a return to a needs-based program by April 2020. It is unacceptable for these children to be told to continue to wait until 2021 for life-changing therapy."
Many details of the new plan are yet to be worked out, and Smith announced an implementation panel to sort out issues such as caps on the amount of services kids can receive under the new plan — a recommendation the panel made reluctantly — as well as the transition of kids into service and the role of professionals to co-ordinate care.
In the meantime, families will be invited to apply by March for interim funding of either $20,000 or $5,000 to pay for services, depending on their child's age — the maximum annual amounts they were to get under a failed plan announced earlier this year.
"This is terrible for the people that I represent," said Nickel Belt MPP France Gélinas. "This idea that they give you $5,000, I'm sorry but if you live in Cartier, Gogama, Shining Tree, Ivanhoe Lake, Foleyet, anywhere that I represent, this money is worthless to you because there are no private providers who will drive to you from Sudbury to give a child half an hour of treatment."
Gélinas pointed to cuts made to Child and Community Resources that have forced the organization to trim staff as a huge hit to service levels in Northern Ontario communities that surround Greater Sudbury.
"CCR would go into these communities, they would work with schools, support families and the child, see who in the community they could train to work with the children and put a team together," said Gélinas.
"But let's face it, it costs money to support children with autism in Northern Ontario. What we have in place, first of all most of them have not seen a penny yet and the ones that have received a $5,000 cheque, who's going to provide them services when they live in these communities?"
A big sticking point for Gélinas is that she says she has had numerous conversations with Minister Todd Smith, and said that he seemed to be getting it when it came to the needs of children with autism.
"When I talked to Todd, I thought he was getting it, she said. “The advisory panel is very clear, they talk about what it means for Northern and rural Ontario and they don't come out against giving parents money, but they come out strongly about needs-based therapy.
"You don't give someone with cancer $5,000 and say 'good luck to you', somebody is in charge and helps you, and the same thing needs to be put in place for people with autism and now to be told that nothing will be done until 2021 … I've had so many families reach out to me and I don't know what to tell them."
The Staddons are one family that are doing their best to make do with what they've received so far, but it has been hard for parents Julia and Sean to remain hopeful with continued to delays to the implementation of a needs-based autism program.
Julia and Sean have two children with autism — their son Chaz is two years old and daughter June is four — and the Staddons just received $20,000 to help pay for June's therapy services.
"As a family we've spent nearly $60,000 for her therapy,” said Julia. “Sean has worked overtime, I work full-time and have picked up two teaching contracts and just this month we received a $20,000 cheque which is supposed to tide us over until this new needs-based program supposedly arrives in 2021.
"I understand it's a really complex file and program to lay out, but we had a needs-based program (under the previous Liberal government) and they (the Ford government) got rid of it and now they're bringing one back and they're acting like it will take two years to create something, when we had something very similar."
Staddon explains that she and her husband are fortunate to have jobs that allow them to work overtime and pick up extra work to help pay for services for their children. Julia says that they have been told they will receive another $20,000 in March to cover Chaz's therapy, but the cost to get both of their children to services they need is closer to $120,000 for the two combined over the next year.
"We should be receiving a cheque for Chaz by March, however they need to give out 23,000 cheques in three months and have only given out 3,000 cheques in seven months," said Staddon.
"Sean and I are very fortunate that we have the jobs we have and can work extra and we do what we can, but we know not everybody has that opportunity. We're very privileged that we're a couple and there are a lot of single parents out there who can't do any of this, but we've scaled back everything in our lives to make this happen."
Having Minister Smith visit Sudbury and all but promise a needs-based program by April 2020, only to announce a delay of another year was very upsetting for Staddon and has left her questioning whether the program will in fact be rolled out by 2021.
"It's hard to remain hopeful when there's continued delay,” said Staddon.
“We had the minister here in Sudbury telling us April 2020 was needs-based therapy so we all kind of clung to that and accepted these cheques in the interim.
"So we're going to get to 2021 and what are they going to say then? It's just so upsetting that a lot of these children won't have access to comprehensive therapy in a timely fashion. It's creating a crisis and I don't think we're going to see the ramifications until they're adults of what this government has done to them."
