Breanna Touhey from Kitchener, Ontario says she was supported by the local community immediately after her son was diagnosed with autism in October 2020.
Touhey, a special education resource educator, knew to enroll her son in the Ontario Autism Program, which provides families with funding to access therapy. But she also knew it would be a bit of a wait.
However, after joining the Ontario Autism Coalition’s Facebook group, she learned during discussions that parents who applied for funding after she applied were already receiving the money. So she became frustrated.
“I’m an incredibly tenacious person and when it comes to my children, nothing was stopping me.”
Touhey emailed his MLA and asked him questions. Soon after, the funding arrived.
But she remains concerned about families still facing long waiting lists.
“It’s just knowing where to look, knowing who to talk to, and knowing how to push so your child gets what they need. But what doesn’t feel right is that you always feel like you have to. do.. You always feel like you have to fight,” she said.
“What about the families that can’t become the squeaky wheel and don’t have that support to keep pushing? How long would we have waited? It’s been hard, I’d say, it’s just to see the inequality of what some people get when diagnosed.”
Report details feelings of parents, caregivers
According to a new report from the Laurier Autism Research Consortium at Wilfrid Laurier University in Waterloo, many parents felt the province had not sufficiently supported the therapy needs of children in the first year of the pandemic.
the Report “Families in Flow” includes the experiences of 2,685 caregivers who were recruited via emails and newsletters to complete the survey in July 2021.
When asked to expand on their concerns about the Ontario Autism Program over the past 12 months, parents and caregivers reported that wait times or delays in receiving funding came from in second place after the disruptions linked to COVID-19.
The report found that 53% of respondents said the program funding they received met their child’s therapy and support needs “to a small extent or not at all”.
Forty-seven percent of respondents said they had not received even one hour of therapy funded by the provincial program.
Life was “a real rollercoaster”
Janet McLaughlin, associate professor of community health at Wilfird Laurier University and co-director of the Laurier Autism Research Consortium, which participated in “Families in Flux,” said the report’s goal was to update findings from a 2019 survey.
McLaughlin, who is caring for an autistic son, described his personal experience during the pandemic as “a real rollercoaster.”
“It was like the toughest challenge of my life. And every day I woke up thinking that I have to get through today and hopefully things will be better tomorrow.”
Advocacy group Autism Ontario says the neurodevelopmental disorder impacts how a person communicates and relates to people and the world around them. There is no cure, but therapies can improve the symptoms and experiences of many autistic people. The group says that it is estimated that up to 2% of the Canadian population, including about 135,000 people in Ontario, are on the autism spectrum.
For many, including her own son, McLaughlin said access to in-person education was disrupted when the school switched to remote learning during the pandemic.
“Many students, for example, were sent home because they didn’t have appropriate supports to meet their autism-related needs in addition to COVID,” she said.
“And for many kids on the spectrum, they weren’t able to learn remotely. And so that actually amounted to a sheer loss of education.”
Regarding e-learning, the survey found:
- Seven percent of caregivers said their child was not engaged at all.
- 50% said their child was unengaged.
- 29% said their child was moderately engaged.
- 14% said their child was well engaged.
McLaughlin noted that the survey also found that 26% of children with autism missed 21 weeks or more of school, either due to COVID-19 or other restrictions.
“I think what surprised me the most was the extent of the education loss,” she said.
Lack of consistency is a problem
This was the experience of Kerry Monaghan, who has two autistic children. The Ottawa mother’s son was often allowed to be at school with his assigned worker, but her daughter was not.
Monaghan said there was a lag between when the province would make an announcement and whether his school would allow his son to attend.
“What we saw happen was that at each stop the approach was different. At each stop we never knew right away. There were scenarios where certain children were allowed to go and others not.
Sometimes it took more than a week before someone could answer their questions.
While she was changing, she said, she had to watch her children and sometimes begged her self-employed husband to take time off work.
“The amount of ups and downs, unknowns and search answers created so much chaos.”
A spokesperson for Education Minister Stephen Lecce said the province has worked to strengthen supports and professional development opportunities for educators, “including doubling funding to more than $40 million to support students with autism in the classroom.
Additionally, in “exceptional cases”, students with special educational needs who could not learn at home were allowed to attend school.
Toronto mother Angela Brandt agreed the pandemic was stressful, but said for many people across the province, anxiety about accessing programs started before COVID-19 hit.
Brandt, whose 16-year-old son has autism, is president of the Ontario Autism Coalition.
She said the previous Liberal government came up with a “pretty decent” needs-based plan, which the Progressive Conservatives “decided to raze” when elected in 2018.
Under the new program introduced by the province in 2019, children aged five and under would receive $20,000 for therapy, and those aged six and over would receive a $5,000 grant.
His son’s program was about $90,000 a year.
“So $5,000 is a drop in the ocean,” Brandt said.
She says she sees no willingness on the part of the provincial government to make changes.
“They have abandoned us. We feel abandoned. We, like the community, feel like this government is heartless and callous. And frankly, I don’t know how they sleep at night.”
Province says it is making ‘positive progress’
During Monday’s question period, in response to questions about whether the Ontario Autism Program was meeting the needs of families, Minister of Children, Community and Social Services Merrilee Fullerton , said 40,000 children in the province were receiving support.
She also said the government had doubled the program’s budget to $600 million a year.
Fullerton spokeswoman Krystle Caputo said in an email that the province “is making positive progress and remains on track to launch the Independent Admissions Organization this spring and bring 8,000 children into core clinical services. by fall.”
The host organization will be called AccessOAP and families will receive information on this this month.
Access must be fair, says lawyer
Margaret Spoelstra, executive director of Autism Ontario, said the Laurier researchers’ poll echoed what her advocacy group had heard from families.
She said government departments – such as health, education and children – must align to help people.
“We have families who have good experiences, but that’s not the case equally across the province of Ontario,” she said. “That shouldn’t be the case. No matter where you are in Ontario, you should have access to supports to help your child grow and learn.
McLaughlin said she hopes the report will inform provincial autism policy in the future.
“We have elections coming up [June 2] and I hope that with all that is happening, autism and disability services in general can make this electoral platform
She also hopes the report will help other parents and caregivers see that they weren’t alone in their experiences during the pandemic.
Touhey said she wants to see a return to full in-person appointments for children. She also wants the province to focus on long wait times.
“When you’re a family and you’re in crisis, whether it’s behavior or whatever, that wait is excruciating,” she said, adding that her son is now in a pilot program to prepare him. at school.
“I love being a part of it,” she said. “I think it’s a big step forward. I want every child who needs it to have access to it.”