Ford government launches public consultations on controversial autism services overhaul

Thestar.com
April 3, 2019
Laurie Monsebraaten

The Ford government is launching an online survey and a series of telephone town halls in May as part of promised public consultations on its controversial overhaul of provincial autism services.

MPPs from all parties are also being invited to hold town halls to hear from parents, educators, clinicians and others, said Children, Community and Social Services Minister Lisa MacLeod.

Minister of Children, Community and Social Services Lisa MacLeod announced tweaks to sweeping autism program changes two weeks ago after more than a month of parent protests and push-back from school boards ill-prepared to support children with autism in the classroom.

Results of the consultation will be reviewed by a new advisory panel that will help the government develop a “needs assessment process,” to better serve autistic children and youth with complex challenges, MacLeod told reporters at Holland Bloorview Kids Rehabilitation Hospital on Tuesday.

The panel, made up of parents, autistic adults and experts in psychology, behavioural analysis, rehabilitation, education, developmental pediatrics and research, will report to the government this summer, MacLeod said.

The ministries of health and education will also be involved in what MacLeod called the first-ever “whole of government approach” to autism services in Ontario.

“We’ve heard from parents and we want to take the time to listen very carefully to their best advice on a needs-based system,” she said.

Health Minister Christine Elliott and Education Minister Lisa Thompson also pledged their ministries’ support.

“Through these consultations, we will create an integrated service approach that will truly meet the needs of children with autism and their families,” Elliott said. However, she said she is not contemplating the inclusion of autism therapy under OHIP “at this time.”

Laura Kirby-McIntosh, president of the Ontario Autism Coalition, a parent advocacy group, said she wishes the government had consulted before overhauling the program, but was pleased it is happening now.

“Had they done this properly the first time, it would have saved families an enormous amount of emotional and financial suffering,” she said.
Kirby-McIntosh, a high school teacher and parent of two teenagers with autism, said the government deserves a “big gold sticker” for including Elliott and Thompson in Tuesday’s announcement.

“As families, we have to fill out paperwork for multiple ministries, so the commitment to inter-ministerial collaboration and the move away from silos, makes my heart happy,” she said.

The consultations will impact an estimated 40,000 children in Ontario with autism. But parents of roughly 25,000 children with other disabilities will also benefit from the process, MacLeod said.

“We believe we need to support all children with disabilities in Ontario, particularly those who rely on our health care and education system,” she said. Consultations on autism services will be “a template,” she added.

Sherry Caldwell, co-founder of the Ontario Disability Coalition, said her members will be watching.

“No child should be forced to wait their turn for life-altering therapies while the government continues to limit their focus to only one diagnosis,” said Caldwell, who has a 13-year-old daughter with physical and developmental disabilities.

In the legislature, Premier Doug Ford said his government “won’t stop until we get this right.”

But NDP Leader Andrea Horwath said the government is in a “scramble to backtrack on the ill-advised and, in fact, cruel program” announced weeks ago.

“This government has put families into crisis and has put children into a position where they’re not getting the services that they need,” she told reporters.

“We’ll see what the government comes up with next. In the meantime, I think families are still very worried and I think they’ve lost all trust in this government,” she added.

Green Party Leader Mike Schreiner said the government should have consulted parents and experts in the first place.

“Today’s announcement does not change the fact that service providers are being laid off across Ontario because the government is relying solely on a direct funding model that does not work for all families,” he said.

MacLeod announced tweaks to sweeping autism program changes two weeks ago after more than a month of parent protests and pushback from school boards ill-prepared to support children with autism in the classroom.

The provincial overhaul, introduced in February, is aimed at eliminating a therapy wait list of 23,000 children and giving parents more say over how they spend provincial autism funding.

Under the revamp, which took effect April 1, families will receive “childhood budgets” of $20,000 a year up to a lifetime maximum of $140,000 for children under age 6, and $5,000 a year for those between age 6 and 18 to a maximum of $55,000.

However, therapy can cost as much as $80,000 a year for children with severe needs, leaving many families scrambling.

Despite the government’s decision to double provincial funding this year to $600 million and to extend existing funding for six months, critics say it still means cuts for about 8,400 children receiving services now and insufficient funds for those coming off the wait list.

School boards welcomed the six-month funding extension, but teachers’ unions are still predicting chaos in the classroom as children with autism arrive next fall without enough therapy and support.

MacLeod said the government will clear the funding wait list within 18 months, starting with those who have waited the longest and giving priority to 17-year-olds and children under age 6. Families of those children will receive letters from regional service providers “in the coming weeks,” while a online registration site for the new program will be ready “midmonth,” she said.

With future annual funding set at $500 million, MacLeod said her ministry will work with the ministries of education and health to provide “wraparound” support for children with autism and ensure enhanced services are in place for those who need it by the time the six-month funding extension is up.
With files from Rob Ferguson

Correction -- April 2, 2019: This article was edited from a previous version that mistakenly included a photo of education minister Lisa Thompson and misidentified her as social services minister Lisa MacLeod.