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Parents speak out at Ontario Autism Program town hall meeting

MPP Jamie West urges parents to not stop fighting
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More than 100 people packed into a meeting room at the Countryside Arena Thursday night as a small group of parents shared their stories about raising children with autism and how these changes will impact their families. (Back row) Kara Walker, Julia Staddon, Sean Staddon, Sara Kitlar-Pothier, Michelle Benavides, (front row) Tara Raso, Melissa Harriman. (Matt Durnan/Sudbury.com)

Tears were shed and hugs were shared at the Northern Ontario Autism Alliance's town hall meeting on March 14.

The group has been gathering momentum since last month's announcement from the Ford government about changes being made to the Ontario Autism Program (OAP).

More than 100 people packed into a meeting room at the Countryside Arena Thursday night as a small group of parents shared their stories about raising children with autism and how these changes will impact their families.

The changes announced Wednesday, Feb. 6 by Children, Community and Social Services Minister Lisa MacLeod include giving funding for treatment directly to families instead of regional service providers, dependent on age, with up to $140,000 for a child in treatment from the ages of two to 18.

According to the Northern Ontario Autism Alliance's figures, there are 391 children in Sudbury who are either receiving services from the OAP or on the waiting list. The Ford government's plan was implemented with the goal of clearing waiting lists of roughly 23,000 Ontario children.

A major concern in Sudbury and around Northern Ontario as a whole is that there is a shortage of Board Certified Behaviour Analysts, and even if the new funding model was more substantial, there are simply not enough BCBAs to keep up with the demand for services.

"The issue in our area is that BCBAs have a limit of how many children they can have under their supervision," said Sean Staddon, who emceed the town hall meeting. "From talking to our community partners and other people, we know that there are not enough BCBAs to meet the needs of 391 children. Trying to clear this wait list is just going to create another wait list and we know that's going to happen."

The new funding model for the OAP program is also a point of contention for the Northern Ontario Autism Alliance, for a number of reasons. The main sticking point in the model is the shift from needs-based to age-based, as well as a funding structure that works on a sliding scale based on household income.

Families with a household income over $250,000 are not eligible for funding under the OAP, and autism therapies like ABA and IBI can cost upwards of $80,000 per year. Reductions to the amount of funding a family can receive start at a household income of $55,000.

Additionally, family incomes can be assessed annually, and a parent receiving a pay raise would directly impact the amount of funding that family can receive. On top of all that, with a cap in funding of $140,000 and families being allowed to used up to 20 per cent of their remaining funding allotment, the amount a family will receive can actually decrease year over year.

Using an example of a family with the average household income in Sudbury of roughly $90,000, that family would be eligible for $112,000 if their child was diagnosed with autism at the age of two. In the first year they would be eligible for 20 per cent of that number, or around $22,400.

This would bring the family's total funding left to $89,600. From there, 20 per cent (maximum funding allowed for the year) is $17,920, though the new OAP plan indicates children between the ages of 2-5 are eligible for up to $20,000 per year.

"The funding is ever-evolving and ever changing which can be really hard for families to plan around in terms of budgeting," said Julia Staddon. "We think that the math was vague and complicated on purpose so that people don't really understand what's going on. When the government tells you they're going to give you $140,000 that sounds great, that's more than a lot of people make in a year, or two years, but when you actually go and do the math, it's horrible."

One by one, Sudbury mothers of children with autism made their way to the podium at the front of the room Thursday night to share their stories and how these funding changes would impact their children and their families.

Kara Walker has two sons, Jackson and Lucas who both have their own challenges with autism.

"We're a low-income family and while we can meet our family's needs it isn't always easy. Both boys will need significant therapy and support to become the happy, well-adjusted adults we know they can be," said Walker. 

"My partner and I are determined to do whatever we have to, but we do count on what is made available through the Ontario government. We knew we would have a long wait for services but there was comfort knowing Jackson would get the services he needed. The changes to the program mean Jackson and possibly Lucas will receive services sooner, but it's unlikely to be enough, $20,000 doesn't work out to a lot of therapy hours."

Tara Raso's five-year-old daughter Olivia was making great strides through IBI therapy. Raso explained that prior to receiving therapy, all her daughter could manage was rocking back and forth on the couch, disconnected from the world around her.

After receiving IBI, Olivia was able to become toilet trained, maintain eye contact, recognize her name being called, follow instructions, and became much more sociable with her family and now attends school full-time. 

"If Olivia loses here IBI funding, my daughter's life could be changed for the worst," said Raso. "I will fear for her future, her quality of life, her independence, her education, her safety, that she will simply regress and will no longer make gains. Olivia needs her therapists in her everyday life, they are the reason she can do all these amazing things."

Raso and Walker were joined on a panel of parents who spoke Thursday evening, including Sara Kitlar-Pothier, Melissa Harriman and Michelle Benevides. Each parent took their turn sharing in intimate detail the daily rigors of raising a child or children with ASD.

Without pause, the parents whose children have received treatment applauded the work of BCBAs and how positive the results of therapy have been for their kids. 

The crowd erupted into applause when Michelle Benevides told the story of her daughter, Kathryn, who Michelle and her husband at one time feared would never speak, but thanks to receiving 24 hours of treatment a week, now speaks English and is learning French as a second language.

"It feels like a miracle, but this government has the power to create more miracles like Kathryn," said Michelle .

"It's devastating to think how many children will be prevented from receiving this type of life-changing therapy. It would never have been possible on a limited budget, such as the government is currently proposing. We acknowledge every situation is different and every child is different, however the program has given our daughter hope for a brighter future, and for that we're forever grateful."

Sudbury MPP Jamie West closed out the meeting, responding to the stories he had heard, fighting through tears at one point. After collecting himself, West told the crowd to keep fighting and to keep gathering momentum.

"I don't think the Conservatives realize that they're not fighting with the NDP, they're fighting with these families," said West.

"I make the comparison to someone who needs back surgery. If you need back surgery you can't function at 100 per cent, you absolutely know you need this and you've been diagnosed and you go to the hosptial and they say and being told they're going to give you choice and only give you five per cent of what you need, and also depending on your age they might give you less, and depending on how much you make we might give you less. There's no other system in our health care that we think about this way and nod our heads and think that's fair."

West told the crowd that he is behind them and that he will serve as their voice at Queen's Park and continue to bring their voices forward.

A website has also been created for parents like those who attended the town hall meeting on Thursday to share their stories and read those of others.

You can view the stories and find out how to get involved by visiting www.wearethe100percent.ca. You can also keep up with future meetings and rallies being held by the Northern Ontario Autism Alliance by visiting their Facebook page




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Matt Durnan

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