Autism funding

Summer reporter
Marc Stuempfle

The Ontario government’s new policies and funding for autism services have resulted in more questions than answers as families wait to hear the final decision to be made by the Autism Advisory Panel.

It is expected members of the panel will have consultations with the public and take the feedback from them back to the Autism Advisory Panel. The panel then will offer a recommendation to Minister of Children, Community and Social Services Todd Smith by September.

The Autism Advisory Panel is made up of 20 members of which only Wendy Prieur is responsible for representing all of northern Ontario.

Wendy Prieur was the former mayor of Nipissing Township for six years and brings her expertise from working at the North Bay Recovery Home–a facility for long-term care which deals with drug and alcohol addiction.

Sherry Fornier is the executive director of Child & Community Resources (CCR), a charitable organization that provides services and community supports to parents, children and professionals to enhance and support the inclusion, integration, and wellbeing of children across northern Ontario. It covers Algoma District, Sudbury and Manitoulin District, Thunder Bay District, and Kenora/Rainy River District.

Fornier says there is no issue with Prieur representing the north, but that there should be more than one person doing so.

“Our stance has always been that we need more than one person to represent the north because the needs of the north are so diverse,” stated Fornier. “What we need in Sudbury is different than what we need in the Kenora/Rainy River District.”

Fornier spoke of her own previous experience on the advisory committee during the Liberal government, stating it was very difficult to represent all of the north’s concerns as a single individual.

“Our main disappointment about the panel is we have so many parents who understand the issue and would be excellent participants for the panel,” added Fornier.

Under the old legislation, the program was publicly funded for regional programs like CCR whose responsibilities were to provide clinical and behavioural services for children while managing the waitlist.

“The number one concern with that model and we would agree is the waitlist was too long. Although, we were able to serve a number of kids and do some really great work with families, the wait list was way too long and more funds would have been required to bring more kids into service,” explained Fornier.

Former Minister of Children, Community and Social Services Lisa MacLeod introduced legislation to eliminate the 23,000 children currently waiting on the Ontario Autism Program’s waitlist. Only 8,400 children were currently receiving treatment under the old legislation.

MacLeod’s resolution was to no longer fund regional programs but to instead provide families with a “Childhood Budget” where families would be allotted a certain amount to purchase the service for themselves in the hopes to eliminate the waitlist.

Families with children diagnosed with autism would receive up to $20,000 for children six and under and then $5,000 until the child turns 18.

Under the new legislation, if a child was registered under the Ontario Autism Program, they would not have to register again. Children who were not registered would have to complete registration and be added to a waitlist before receiving the Childhood Budget, according to CCR.

Since this original announcement, CCR has initiated staff layoffs throughout the region. CCR also stated they have heard growing concerns from parents about not being able to find providers for their children’s needs.

“There is no doubt what we hear from families is they appreciate the access to the Childhood Budget but they are very concerned that they will have nobody to purchase the service from,” said Fornier.

This concern is magnified for families living in isolated and rural areas or for those with language barriers.

Even though the efforts by the Ontario government is to provide funding for all families, it remains unclear if there will be enough services and trained therapists in northwestern Ontario to provide proper services.

As it is well-documented, autism falls on a spectrum, so parents concerns are the needs of one child will not be the same as another. Depending on their child’s severity, they could have the potential to pay more money out of pocket to receive support.

“Keeping qualified professionals is a challenge for the north,” said Fornier. “That was something we built up over the last 20 years but it’s quickly changing to look very different because of the new model.”

Since the original announcement, CCR has written letters to the board of directors of the Ministry of Children, Community and Social Services on behalf of parents about their concerns with the new policy.

CCR has noted they have yet to receive any response back from the ministry.

“For us as an organization, our concerns from the time that this policy was introduced is that we want to make sure that all families in the north have access to services in their home community and we want to make sure that the talent that we currently have stays in the north whether they are with our organization or not,” emphasized Fornier.

Part of the previous legislation issue was there were not enough therapists or providers to keep up with the needs of all the children across Ontario. Under the new policy, they had not made a concrete plan to resolve this issue.

Depending on a child’s specific needs they may require an immense one-on-one time or perhaps work better in a group setting.

School boards announced additional funding to help support children with autism, but may not have a large enough scope to provide specific needs for all children.

“We’re anxiously awaiting for the outcome of the advisory committee to see what they are going to do if there are any recommendations that will support our northern strategy,” said Fornier.

She noted CCR would continue to focus its energy on making sure those children continue to receive the best possible treatment and care.

As of the of March 31, 2020, regional programs will no longer be receiving funding from the Ontario Autism Program.

“We’re just really grateful that we have such strong advocates in the north and I think we all need to continue to work together to make sure our voice are heard in the best interest of our kids and our future,” remarked Fornier.