Autism community expresses funding and awareness concerns

·4 min read

The Ford government delivered its provincial budget November 5, but failed to mention any increased funding to support families with autistic children.

The Province of Ontario has previously promised to establish a needs-based program to help affected children by April of 2021. With spring only a few months away, parents of children with autism in the Quinte West community are beginning to feel discouraged and anxious as the budget released last week made no mention of the programs’ development and progress.

Costs are expensive for services that help foster and support an autistic child’s development, and some in the autism community have described current funding as a ‘drop in the bucket’.

Erin Rogerson of Quinte Autism Advocates (QAA) appeared at Quinte West council as a delegation back in March and shared her experience with autism and about the challenges her and her family have faced raising their autistic son. She requested council send a letter to the province pushing for reinstatement of Applied Behaviour Analysis (ABA) therapy.

Like Sarah Daley, who appeared before Belleville Council Feb. 10 to discuss the situation families with autistic children are facing, Rogerson says having access to ABA therapy made an incredible difference in her son’s life.

During her presentation, Rogerson said there are roughly 350 families in the Quinte region who have had their lives put on hold while waiting for help in paying for the program, which can cost $60,000 to $80,000 a year.

In July 2019, Bay of Quinte MPP Todd Smith, who had just taken over as Minister of Children, Community and Social Services from Lisa MacLeod, announced that in response to the objections of the autism community that the government would put needs based funding in place for April of 2020. Smith said the Ontario government had doubled funding for autism programs and is spending $300 million more than the previous government did on that portfolio with available funding now at $600 million. However, on Dec. 17 the hopes of autism familes were dashed once again when Smith announced that core services of the program, in other words funding of ABA therapy would not be up and running until April of 2021.

“We’ve had enough wait, these kids need help now,” Rogerson said. “So we’re asking that the City of Quinte West join the other 15 municipalities that have signed a letter to get the message out there that these families can’t wait this long, that their children can’t wait this long, that they are making these children become less productive members of society.”

“This is not acceptable and puts the futures of children with autism in this community in jeopardy,” said Daly said back in February. “While this may be a provincial program it directly impacts families in Belleville. One in 66 children is diagnosed with autism, there are roughly 350 families in Quinte who are currently accessing autism services in some respect and that is a very rough estimate. That number is growing every day. Families of children with autism are suffering now because the government refuses to listen to what we have told them all along. We are asking Belleville to join the 14 other municipalities who have already shown their support for autism families. We need your help to get the message across to the Minister of Children, Community and Social Services that fully funding intensive therapy for those who require it must happen now.”

Minister Smith stated the province is still funding autism to the tune of $600 million a year, an increase over previous funding levels and that needs-based funding is still being built upon every day.

Smith also noted the government has recently put out the request for proposal for the Independent Intake Organization, a key component for needs-based funding.

Families dealing with autism in Quinte, however, have been struggling with the absence of a regional provider as COVID-19 has resulted in an access barrier, preventing children from getting to the services they need.

Daly said a friend had to pay $3,000 for a 10-week autism therapy program which was based around the development of one skill, one hour a week. “The fact that the government budgeted $600 million for autism is a good thing because it’s more than what we had before, but if they don’t actually spend it, then it’s essentially useless.”

Daley expressed her concern, saying that the coronavirus pandemic has paralyzed protests and other efforts to create awareness and bring the issue to the government’s attention, while autistic families are dealing with their own stresses.

Virginia Clinton, Local Journalism Initiative Reporter, The Intelligencer