The Ontario government says it’s currently conducting province-wide consultations on changes to the provincial autism program.
On Thursday, one of a number of telephone town halls took place where experts, stakeholders and parents weighed in with personal anecdotes, comments and suggestions on how the program should be revised.
Global News obtained a recording of the hour and fifteen minute call that hundreds of parents were on. At times the comments were extremely emotional with parents in tears and others angry at the PC government’s changes thus far. There were also numerous calls for Children, Community and Social Services Minister Lisa MacLeod to step down. The calls are part of a joint effort by MacLeod’s ministry, the Ministry of Education and the Ministry of Health and Long-Term Care.
No MPPs or ministers participated in the call. However a recorded message was played from MacLeod early on: “Parents are right when they say that each child with autism has different needs. I want you to know I have been listening to families and I’ve heard the concerns you want addressed, I want to address them too.
“That’s why the government is consulting with families, clinicians, educators and other experts to assess how our government can better support youth with complex needs, including through additional direct funding.”
After the recording wrapped up some of those on the call had their opportunity to speak. Each caller that was selected spoke for less than a minute on average. The first member of the public to voice concerns was Megan Rigden, a mother from Essex.
“I definitely think Ontario is the province of social justice that every child with disabilities should have their needs assessed and treated accordingly,” she said. “That would be under government funded, some kind of program like OHIP – nothing where parents are funding, or for-profit/insurance companies get involved.”
Rigden, who has been an outspoken opponent of the current changes to the autism program then broke down saying through tears, “I would like to see Lisa MacLeod resign immediately, as well as (chief of staff) Tim Porter – neither one of them should have any say in this file. My child is regressing and I’m losing ground with her daily, and it’s not fair.”
When contacted by Global News after the call, Rigden said she was disappointed but not surprised ministers were not on the call.
“They don’t want to know the truth of their policy changes. We’re hurting and somewhere in there I think it hurts them to know what they’ve done,” she said.
Later in the call, a woman who identified herself as a mother from Mississauga voiced her concerns.
“My son has severe autism and he was having funding since last year. And he has progressed with toilet training, he’s talking more and everything was wonderful until we got this news,” she said. “This news is really devastating because we cannot continue to support our son. It’s incredible the prices the providers give us – it’s crazy, no, nobody can afford it.
“I suggest if it can be under OHIP or something like where the kids will be receiving their services according to their needs.”
A man who said he was a father from the Muskoka area with two children with significant needs said he is concerned about supports in rural communities.
“Providers have been diminished severely, so even if I received the appropriate amount of funding, which I don’t believe I will. I don’t think I’d be able to provide therapy for my kids anyways,” he said.
Wrapping up his comments, the man became emotional and called MacLeod and Tim Porter to resign.
“The people responsible for freezing the list should be held accountable for it,” he said.
A woman from Barrie who identified herself as a grandmother of a four-year-old boy with severe autism said her grandson is non-verbal and has no understanding of outside dangers. One of his parents, the woman said, is working while the other stays at home to care for him.
“He’s currently receiving 12 hours of IBI of the recommended 30 hours he should be having each week. We just can’t do that. It’s a strain. We need to find a way that each child is diagnosed …they need to be able to receive an education – it’s unconstitutional for any child to not receive an education, just because it’s costing these children more to be educated, does not mean they are not entitled to an education,” she said.
“So we are being unconstitutional by throwing these children who have no understanding. It’s not just that they don’t want to learn – my grandson is brilliant, but he cannot verbalize it, cannot come into a room and say hi to you … So they have to be taught in a different way.”
A woman from Markham who said she has a severely autistic non-verbal son told the town hall she isn’t currently receiving government support but worries if she does eventually get some funding it won’t be enough.
“I’ve taken all of the parent training classes, I can’t do it on my own with $5,000, that’s not enough.”
Through tears the woman said, “It’s very hard because once this phase passes, I’ll probably never get a chance to happen again.”
Kerry Monaghan, a constituent of MacLeod’s and mother of two children with autism told Global News she was only able to listen in on the call but has concerns about how the consultations are going.
“We need something to indicate that these consultations will mean something, and most of all, we need the Minister to acknowledge the content of the Feb. 6 announcement was a misstep,” she said.
“The autism community at large has lost faith in the Minister’s ability to manage this file. This has been handled in the most backwards of ways, and it pains me to know that the undue stress, pain and worry of the community could have been avoided had the government had the good sense to hold genuine consultation prior to launching a one-size-fits all program that is not only tone-deaf, but frankly, cruel.”
Global News reached out to MacLeod’s office for an update on the consultations and also with questions as to why no one from MacLeod’s ministry participated in the call.
MacLeod’s office was also asked if the raw data from surveys being conducted would be made available once the consultations wrapped up.
Spokesperson for MacLeod Derek Rowland did not answer the specific questions but said in an e-mail, “Minister MacLeod and her parliamentary assistant MPP Amy Fee continue to meet with families to hear how their Ontario government can better support all children with autism. We’ve seen more than 1,000 total callers join our telephone town halls and more than 1,700 online surveys submitted to date.”
WATCH: Lisa MacLeod claims province will double funding to Ontario Autism Program (March 27)
Rowland also said MacLeod would be announcing details on an advisory panel on updates to the program soon.
“The advisory panel will have a broad representation consisting of parents with lived experience, autistic adults and other experts from a range of disciplines like psychology, behavioural analysis and rehabilitation services, developmental pediatrics and research,” he wrote.
Rowland did not comment when asked how the selection process for parents on the panel would work but said it would include a cross section of voices.
“We also want the advisory panel to represent Ontario’s diverse population. This includes members from rural, remote, Francophone and Indigenous communities. We want a culturally balanced, diverse and geographically representative perspective.”