Autism Coordination Act

Below are the formal remarks I made this evening on the floor of the Legislative Assembly regarding the Autism Secretariat Act.

There were friendly amendments to the bill adopted this evening during the debate that changed the name of the act to the Autism Coordination Act, and specified that a committee of deputy ministers be cast to oversee this coordination, a committee responsible to a designated member of Executive Council, and that would report at least annually to the Legislature.

The amended bill received unanimous consent after a thoughtful, collaborative debate. Barring any last minute changes, it will receive Third Reading and Royal Assent in the days to come.

Which is awesome.

MLA Sidney MacEwen deserves tremendous thanks for introducing the bill, working together to get it passed, and being open to amendments. All members who spoke to the bill deserve thanks for their open mindedness and for their comments in solidarity with people with autism.

It was a good night.

Thank you, honourable members, for the opportunity to contribute to this debate.

It is an honour to be able shed some light on the needs and aspirations of Islanders with autism and the challenges faced by their support networks, and to speak to the utility of establishing cabinet-level responsibility for autism.

I am here because I am the father of Oliver, a young adult on the autism spectrum. I am mindful that I see autism primarily through Oliver’s experience, and I am also mindful that I am not on the autism spectrum myself, so I cannot speak for people who are.

As a technologist, however, I understand a thing or two about how systems work, about the importance of leadership and coordination, and about how the bureaucracy works, and sometimes doesn’t work, and it’s those experiences, as well as my 18 years of parenting, that I bring to bear this evening.

A few days ago I consulted with Carolyn Bateman, chair of Stars for Life. “Have I got it right?”, I asked Carolyn about the remarks I bring to you now.

After some encouraging words, Carolyn wanted to make sure I accurately reflected the unique struggles of living with autism. Difficulties getting a diagnosis. Sleep deprivation. Meltdowns. Problems making friends. Issues with dating and relationships. Lack of safe, supported housing options. Problems getting and keeping a job. And her list went on.

Those are all real concerns.

I witness many of them every day, as do families across the Island.

But, with all due respect to Carolyn, that is not where I will focus my comments today.

I want to focus, at least to begin. on what we’re doing right.

I want to mention Dr. Peter Noonan, who was there in the delivery room when Oliver was born, who helped coax him to life, and who saw him every 6 months until he turned 18, who referred him to the IWK for an autism diagnosis, and, later, referred us all to the Strongest Families program to help us with anxiety.

The pre-school special needs team that helped Oliver with psychological supports and occupational therapy before he entered public school.

The staff at Holland College Child Development Centre, where Oliver went to daycare and kindergarten, who made sure, despite tight funding, that he had an educational assistant.

Teachers, resource staff, EAs and administrators at Prince Street, Birchwood and Colonel Gray schools who have done everything in their means to help Oliver learn and to participate in school life.

Of Taylor and Lauren and Drake and Johannes and Derrick and Lindsay, who, over the years, School Age Autism funding has allowed us to hire as community aids to support Oliver after school, in the community.

Of Barb, Oliver’s Disability Support caseworker, who’s helped us arrange for respite care and summer programming.

I mention these people, and these supports, because I want to make it clear that we have not been in this alone: this is a caring Island, an Island that understands that people on the spectrum need support, an Island that has lightened Oliver’s load and helped us be better parents to him.

We are thankful.

But here’s the thing: all of this is done almost entirely without coordination or integration.

As government’s Autism Action Group wrote in its 2009 report, “the department-based, or service-based silos are entrenched, and cannot be penetrated by the good will and intent of the Autism Action Group participants alone because each department or service applies very different approaches to ASD supports and services.”

And that is certainly our experience as Oliver’s parents.

I mentioned School Age Autism funding. This program, administered by the Department of Education, provides us with funding to hire community aids to work with Oliver after school and through the summer.

Oliver also receives Disability Support funding from the Department of Family and Human Services. That program overlaps with, but is not quite the same as School Age Autism funding, and has a completely separate staff, eligibility criteria, and forms to fill out.

We’ve received School Age Autism funding since Oliver’s diagnosis, but Disability Support funding only for the last couple of years.

Why?

Because we didn’t know it existed.

Somehow, from the autism diagnosis at the IWK, through years of public school, and regular appointments at the QEH, and all the while receiving School Age Autism funding, everyone assumed that we knew about the Disability Support program. But we didn’t.

No matter which provincial department the funding comes from, families who wish to hire someone to work with their child must register as employers with Canada Revenue Agency, and thus must make monthly payroll remittances, create T4s and records of employment.

Raising a child on the autism spectrum can be a complicated, exhausting endeavour; to juggle two funding programs, with two different parts of the bureaucracy, and to additionally deal with a federal department, is more than many families can take on, and so supports that could be incredibly helpful go unused.

We can do better than that.

The Department of Education has a “Guide to Early Years Autism Services” on its website, last updated in 2012, the introduction to which reads:

This guide will focus specifically on services for young children with autism provided through the Department of Education and Early Childhood Development. For more detailed information about programs and services available through other Departments, please see www.gov.pe.ca/departments.

Not only does that web page no longer exist, but the “there may be others in government who can help, good luck!” message is not helpful to the parent looking for support.

I think we can do better than that too.

In 2014, when we were working with the English Language School Board to make arrangements for Oliver’s Autism Assistance Dog Ethan to join him in school everyday, a school board official told us that “educational assistants are in schools to allow students to survive, not to thrive.”

While I admired their candour for admitting this, those words haven’t left me since I heard them.

We surely must be able to do better than that.

When I told Oliver that I was coming here tonight, I asked him if he would consider watching the live stream online and his quick reply was “of course I will, this is an historic milestone — like when women were recognized as persons.”

Oliver’s wise words allow me to highlight another important aspect of this bill: in laying out the objects and purposes of the bill, the emphasis not only on facilitating and coordinating services and programs for people with autism, but also “to heighten awareness of the needs and aspirations of people with autism.”

Aspirations.

That’s a word we don’t often hear when speaking about people with autism.

And yet people with autism, like everyone else, have dreams, plans for their lives, things they want to do, people they want to become. When Oliver spoke of tonight’s “historic milestone” he was, I believe, proud to live on an Island that was willing to say to people like him “you exist.”

But, as I began, I am not here, primarily, to make an emotional appeal to you.

I do not need to convince you that autism exists, that people with autism are important and valued Islanders, that parenting someone with autism can be both wrenchingly difficult and unimaginably wonderful, often on the same day.

I do not need to tell you that autism is unique and complex enough that it demands targeted, specific support.

I do not need to convince you that government has a role to play in supporting autistic Islanders: the supports already in place make it clear that’s understood.

But I do need to convince you that what we are lacking is determined, coordinated, leadership.

Leadership that can transcend departmental boundaries and focus instead on the needs and aspirations the bill speaks to.

Leadership that can seek to weave together our patchwork of programs and services into a cohesive supportive framework.

Hon. Marion Reid, former Lieutenant Government and member of this Assembly, once gave me a valuable piece of advice: when you want government to do something better, she told me, come up with a plan for how it can be done. Don’t just say “you need to make things better,” say “here’s how you can make things better.”

There is, at present, not a single act or regulation in Prince Edward Island that mentions the word autism.

I think it’s time that changed, and I think this bill sets out a reasonable way for that to happen, a reasonable way to make things better: it is not the “wake up jerks and do something about autism act,” it is the “we’re on the right track but it’s time to take a bird’s eye view and work together on this” act.

I sincerely believe that the leadership and coordination that would logically follow can take the good works and goodwill that already exist and build on them.

I believe that having someone around the cabinet table looking at things through what the Hon. Premier might term “an autism lens,” would allow us to ensure that we build a truly autism-friendly Island, an Island that allows our autistic brothers and sisters to thrive.

Thank you.

(The entire debate can be viewed in the November 27, 2018 Hansard).