Want to fix autism services in Ontario? Province must communicate better: parent

A new report looking at families of children with autism, from the Laurier Autism Research Consortium, says those families  are under "severe stress." 

The Ontario government has received heavy criticism over its delivery of services for people with autism. Minister Lisa MacLeod revamped the government's program last February. Her revisions led to intense backlash from parents of children with autism and demands for her resignation.

MacLeod is out of that portfolio now, replaced by Todd Smith and a new advisory panel on autism has been created.  

Matt Dever is one of the people on that new panel. He spoke with the CBC's Conrad Collaco about how he hopes the panel can guide the government towards better services for people with autism. You can read an abridged and edited version of the interview or listen to the full audio interview by hitting the play button above.

Matt Dever, province's advisory panel on autism

Evan Mitsui/CBC

What challenges do you face as a parent with autistic children and as an adult who is autistic?

I have three children who are autistic. I have a teen, a tween and an adult. We have experienced different challenges as they have grown. The challenges they've had as young children were different in their teens and different as an adult. Getting support at home is difficult and funding is always limited. Schools tend to create more stress. We find that schools aren't really inclusive. In our family's perspective they have failed our kids many times.

If the ministry changed the way it worked with its stakeholders I think parents might be a little bit more at ease with whatever the changes might be. - Matt Dever

What was wrong with the Ford government's original plan for autism services under minister MacLeod?

We've had a lot of changes to autism funding over the last three, four years. Funding was opened up regardless of the age of the child. Before it was up to age five then it was extended to eighteen. The intention was to fully fund whatever the child's needs were but that was only funding about twenty-five percent of the children. Lisa brought in the concept that every child should have base funding. That meant that parents getting funded in one particular therapy area all of a sudden didn't have access to that or hope of have access to that. Other parents had the opportunity to choose different types of therapy which they could fund themselves. 

The communication of this has been a problem as well as the concept of meeting everyone with base funding doesn't take into account more complex needs children have as well as the fact that needs can change over time especially in transition years. I think that's why there was a pause three months ago and they initiated these consultations that allowed the ministries of social services, education and health to figure out how do we support autistic children from community, in the home and in schools. I'm hopeful that out of this process we're going to come up with some really good recommendations. 

How do schools need to change to better support children with autism?

We need to move to a philosophy of inclusion first where we assume that all children regardless of ability or disability should be in regular classes and fully supported and accommodated to meet their individual needs and that there is a connection to what they are doing in their home and community. That means training teachers and EA's. They should be in class. They should be on field trips. Without that philosophy we end up having exclusion. Parents never know if they'll get a call to bring their child home because it's not working at a school or be told that they need to limit the hours the children spend in school. That is the biggest thing I would like to see changed. It's something a lot of parents would like to see changed especially those going through the transition years. Children in middle school and high school change so much during that time and the system now tries to lower the support instead of increasing it.

Have you had any contact yet with the new minister?

The day he was appointed he popped in and said hello. We're hoping to get more insight on his direction over the summer but when you look at what the government has invested in the last three months in terms of these consultations I believe their plan is to let this process continue and give us the opportunity to make recommendations and we're hoping that in a short period of time he'll have the chance to look at them and act on some of these recommendations. 

What is your message to the new minister?

Communicate. Communicate better. Give parents a sense of what you're doing and why you're doing it. I think that's a real key thing that a lot of parents are frustrated with because they don't know what's happening. They don't trust that this is going to be good. They don't trust what the government has said is going to happen because an announcement gets made and nothing really happens for weeks or months or it doesn't get communicated well. If the ministry changed the way it worked with its stakeholders I think parents might be a little bit more at ease with whatever the changes might be.

This is the first opportunity any government has included autistic adults in the consultation process. We're now considered to be experts to the same degree that professionals are. I'm really encouraged that we have this process. It's something that we've been dreaming about for years.