Ontario backs down on age limits for autism interventions

TORONTO—They say you can’t fight city hall, but for the parents who have been fighting controversial changes to the province’s autism programs for months, a recent announcement by the provincial government that it is backing off most of those changes is offering hope that you can change minds at Queen’s Park.

The June 28 announcement that the province will be fast-tracking a new program that will provide more flexible support to children with autism on Tuesday has been greeted as a positive first step, but some parents remain skeptical.

“It’s amazing,” said Pamela McLaughlin of Gore Bay, whose daughter Molly’s experiences were documented within the pages of The Expositor in April. Although Ms. McLaughlin admitted that she had not been following the developments that closely over the last week, what she had heard she felt was a positive step forward.

Autism activist Valerie McIntyre also admitted that she had not followed the story personally, but offered that from what she had gleaned from comments online, the government’s changes amounted to little more than tokenism that would not be of much help to children with autism living in the North. “It’s Mike Harris all over again,” she asserted.

The Ontario Autism Program was initially slated to be implemented in 2018, but will now begin in June 2017 according to an announcement by the Ontario Ministry of Children and Youth Services. The programming will now begin a full year ahead of the original plan and will also boast increased access to services and supports.

The province promises that the new Ontario Autism Program will provide all children, regardless of age, with more flexible services that will meet each child’s individual needs.

Autism or Autism Spectrum Disorder (ASD) is a lifelong, complex, neuro-developmental disorder, characterized by persistent deficits in social communication and interaction and repetitive behaviours where symptoms can vary significantly and range widely in severity.

According to the provincial announcement, the new program will increase the number of treatment spaces and significantly reduce wait times to accommodate the rising prevalence of autism diagnosis.

There are an estimated 40,000 children and youth in Ontario with autism and according to some studies in the US, prevalence has grown from 1 in 150 in 2002 to 1 in 68 in 2010.

The government met with experts, stakeholders and families since the initial 2016 announcement of the program to aid their development of the support they will provide. The additional supports will include: access to earlier diagnosis, more direct funding and more choice, more resources for families and more supports in schools.

The 2016 Ontario Budget had committed $333 million over five years for the program, in addition to the $190 million Ontario provides for autism services annually, but the enhancements will now invest an additional $200 million over the next four years to better support children and youth with autism and their families.

Ontario NDP leader Andrea Horwarth called this new program an important win for youth and children with autism. “Parents and children across Ontario living with autism stood up to fight for the services they need, and today is a victory for families,” said Ms. Horwath. “They knew that with the right supports, their children could live up to their full potential, and they didn’t give up hope. Today is a win for the future of all of those children.”

As part of the new approach being touted by the province, an advisory committee of parents, stakeholders, advocates and service providers will begin meeting this summer to advise the ministry on the design of the new program.

Kids of all ages with an autism diagnosis can now count on the treatment when they need it, regardless of age, said Children and Youth Services Minister Michael Coteau during an announcement made at Queen’s Park. “The new program will provide all children, no matter how old they are, with the level of intensity they require. Every single child will receive the services they need, period.”

The new announcement indicates that the Ontario government has backed away from the controversial age limit it imposed earlier this year on funding for intensive therapy for children with autism where children over five would be cut off, regardless of how long they spent on the waiting lists and has introduced a new program for therapy funding in the province. In March, the province had announced $333 million in funding for autism programs over five years, but at the same time eliminated government-funded intensive therapy for children aged five years and older.

That move was widely criticized by affected families and advocates leading to a Tuesday, June 28 media release stating that it “has listened closely to experts, stakeholders, service providers and families.”

The government’s new autism plan adds another $200 million over four years to speed up program delivery and provides $1,000 per week for therapy for children five years old and up while they’re on the wait list.

The transition to the new program will begin in June 2017 instead of 2018, the ministry said, adding that “the new program will provide all children, regardless of age, with more flexible services at a level of intensity that meets each child’s individual needs, significantly reduce wait times for service and increase the number of treatment spaces available to serve more children and accommodate the rising prevalence in autism diagnoses,” the province said.

Additional supports announced on June 28 include a choice of direct funding or immediate and continuous access to applied behaviour analysis (ABA) services and supports for children five and over who were on the intensive behavioural intervention (IBI) waitlist, to provide access to continuous service until children are able to enter the new program next year. The supports include strengthened autism supports in schools to help children transition to and continue in full-time school; increased access to diagnostic assessments to allow for earlier diagnosis and treatment; greater access to information and direct supports for families to help in transitioning to the new program.

“It is a complete sea change for the autism program from what was announced in March and what was going on beforehand,” said Bruce McIntosh, president of the Ontario Autism Coalition. “They have stepped forward in a major way and it’s going to meet the needs of every kid touched by autism in Ontario. Whether they’ve been on the wait list, whether they’ve been in the [Intensive Behavioural Intervention] program, it’s going to take care of all of them.”

“What the parents are looking for more than anything is a clear statement that if their kid is over the age of five and has a severe diagnosis, that they’re not going to get thrown under the bus, that they will get intensive intervention,” said Anne Jovanovic, spokesperson for the Alliance Against the Ontario Autism Program. 

The Ontario Autism Coalition will be participating in a new 12-member implementation committee to guide the transition under the new policy.

“We are delighted that the government has recognized the urgency of the need to move forward with the accelerated implementation and the assurance that the 2,200 children removed from the waiting list are not left behind while also ensuring the needs of those in service continue to be met,” reads a statement from the coalition. “This program will be addressing the unique individualized clinical needs of each child with autism living in the province of Ontario.”

“The most important thing is early intervention,” said Ms. McLaughin, who credits IBI with changing her child’s future for the better. “We spent a relatively short time on the waiting list,” she said. “Others had to wait much, much longer to access the services they need.”

Ms. McLaughlin noted that the therapy helped her daughter develop language skills that allowed her to go to school. In an odd Catch-22 with the previous program, Molly improved so much by the time she was six, that she no longer qualified.

“It allows children to grow up knowing how to communicate, to be able to go to school, get a job, be able to take care of themselves,” she said. “I know governments are always looking at the short term, this budget, the next election, but over the long term being able to be employed, to be able to look after themselves, children with autism will not be a burden to society in the long term. Which makes more sense.”

At first blush, it seems the provincial government has decided that Ms. McLaughlin and her fellow parents are right.