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At home and in Toronto: Sudbury parents push back against changes to autism program funding

Sudburians journey to demonstration at Queen's Park today, while dozens more rally in front of MPP Jamie West's office
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Sudbury parents of children with autism and their supporters gather in front of MPP Jamie West's office March 7 to protest changes the province is proposing to how autism services are funded. (Matt Durnan / Sudbury.com)

Sudburians marched in solidarity with parents from around the province on March 7 as they continue to push back against the Ford government's changes to Ontario Autism Program (OAP) funding.

This was the second time in less than a month that Sudburians gathered at MPP Jamie West's office to protest the funding model changes, with the first rally taking place on Feb. 15.

On March 7, hundreds of protestors gathered at Queen's Park, and were supported locally in Sudbury by dozens more who are demanding that the Ontario government get back to the drawing board and reassess their plan.

Changes to the funding model were announced on Feb. 6 by Children, Community and Social Services Minister Lisa MacLeod with the message that this new plan for the OAP would clear out a waiting list of more than 23,000 children in Ontario who are in need of funding.

The previous funding model under the Ontario Liberals provided as many hours of IBI (Intensive Behavioural Intervention) and ABA (Applied Behaviour Analysis) therapy as needed. These therapies can be quite costly, running up to $80,000 per year.

Ontario's new funding model does not cover either of these services and has shifted to age and income-based funding rather than needs-based. Children aged 2-5 will receive up to $20,000 a year, children 6-18 will receive up to $5,000 a year.

Sara Kitlar-Pothier helped spearhead Thursday's rally, and is the mother of a five-year-old son who has been diagnosed with autism. The age-based funding model is one that hits Sara and her son very hard, as he will be turning six in May, and will only qualify for $5,000 a year in funding.

"If you make $55,000 of household income, that $5,000 goes down," said Kitlar-Pothier. "The problem with giving stats right now is that every two days the government is taking things that they've said off their site."

Sara says that parents of children on the autism spectrum are scrambling to figure out how they are going to get their children the treatments that they need.

"We're trying to figure it out, there's not a good explanation," said Kitlar-Pothier. "Do you re-mortgage your home? Are you even in a position to do that? Do you get loans? A lot of people are under the poverty levels, even if you make $250,000 a year, one therapy is $80,000 a year."

Children with a severe autism diagnosis need between 25-30 hours of focused therapy every week says Kitlar-Pothier, and there are a range of different therapies depending on the needs of each individual child.

Educators join the fight

Educational workers from five different unions around the province stood behind the parents, front-line workers, and concerned residents who rallied on Thursday and released a statement urging the government to rethink its decision-making on the OAP and to put the needs of children first.

As the largest representatives of educators in Ontario, the five signatories were, the Canadian Union of Public Employees (CUPE) – Ontario, the Elementary Teachers’ Federation of Ontario (ETFO), the Ontario Public Service Employees Union (OPSEU), Ontario School Board Council of Unions (OSBCU), and the Ontario Secondary Schools Teachers’ Federation (OSSTF). 

In the joint statement the unions said, “the Ford government’s reckless changes to the way it supports children with autism – in particular, its cuts to direct public and not-for profit services in the community - puts desperately needed services at risk.” 
 
All of the organizations expressed that Ontario needs a system-wide solution to support the different needs of students within schools because every child matters. 

“We believe no child should be sacrificed because of government cuts, and we believe in universal access to public education for all children regardless of family income, race, gender, sexual orientation, language and ability," said the statement.

Funding based on child's need, not family's income

Needs-based funding is of a very high priority to Sudbury parent Natasha Delaney, who has two children with varying severities of autism. Natasha's nine-year-old son has severe, non-verbal autism, and her eight-year-old daughter has moderate autism and has been progressing well thanks to receiving both ABA and IBI therapy.

"I'm that rare case that both of my children received IBI and ABA," said Delaney. "My son was next on the list for his ABA and we were going to choose fear of food and working on that, now that we don't have ABA services offered my son's option is a feeding tube."

The Liberal model was not without its faults, and wait lists were in the tens of thousands of children who were waiting for services, but Delaney says she would much rather the old model than what is being put forward by the Conservatives.

With two children over the age of six, Delaney will receive $5,000 per year per child, and she echoed the point made by Kitlar-Pothier that information about the OAP seems to keep vanishing online as the Ontario government appears to be backpedalling on what they've laid out.

"I'm on social assistance, I only get $9,000 a year to live off of, there's no way I can afford private therapy for my children," said Delaney. 

"I looked into the autism budget and it said this funding was not to be used for ABA or IBI or occupational therapy or speech therapy or physiotherapy, so what does that mean? I can use it for art therapy or for yoga therapy? How is that going to help my children? Last week that was pulled from the site and it now says all information as to what funding can and can't be used for will be released on April 1."

The founder of Behaviour Analysis North, Kim Morris, spoke at Thursday's rally and was also in attendance and spoke at the first rally in Sudbury on Feb. 15. Morris once again hammered on the importance of services like ABA for children with autism.

"ABA services treat challenging behaviour. Children and adolescents who engage in self-injurious, aggressive, or interfering behaviour can't participate in society, they can't learn at school and ABA helps with that," said Morris.

"ABA increases developmental trajectory and for some kids it can impact their intellectual and adaptive function and puts them on a path for a more independent life."

An independent life is at the core of what many autism parents wish for their children. 

"Just give every child a fair fighting chance at life, because all of our children matter," said Kitlar-Pothier. "How do I look my son in the eye and tell him I can't give him what he needs in life to be successful? How does any parent do that?"

Jamie West autism rally - Queens Park


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