Time for a National Autism Spectrum Disorder Strategy — Address in Reply to the Speech from the Throne

Honourable senators, we are back in action; it is 2015. With the Speech from the Throne delivered last week, we began this parliamentary session with a sense of the government’s priorities. It is useful and wise at the outset to draw a map in broad yet generally clear terms. The speech did exactly that.

However, I would have liked to have seen some specific references, especially to the issue closest to my heart. This is the excerpt from the Speech from the Throne:

And to support the health and well-being of all Canadians, the Government will begin work with the provinces and territories to develop a new Health Accord.

That was it. There has to be more, much more.

Also set out under the heading “Growth for the Middle Class,” this commitment holds a promise that I hope accommodates the interest and needs of the thousands of people in Canada with Autism Spectrum Disorder.

The federal government needs to sit down with the provinces and territories and work out how best to coordinate existing autism services and resources and to create new services and resources that are lacking. Canada needs a national autism strategy.

The federal government has a unique, pivotal role to play. The timing and circumstances are optimal for work to begin.

Since I started learning about and advocating for people with autism and their families, public awareness of and engagement in helping those impacted by the developmental disorder has increased exponentially. Ten years ago hardly anyone knew what autism was. The misperception was that it was the result of poor parenting. Can you imagine that? It was still prevalent.

Early on my presentations to groups here and throughout the country had one central message related to the challenges endured by the families of people with autism: their anxiety over lack of information, resources and services for their sons and daughters; their financial burden; and their experiences of helplessness, frustration and deep isolation.

The good news is that there have been remarkable improvements in relation to where we began. And guess what, honourable senators, you have to think about this at this time with people talking about non-partisan and less partisan, on a road map that is uncharted, as the Speaker talked about, of where we’re going. We have worked together on this issue and many others. And we did it together, so let’s think about that.

The first significant push forward happened in the Senate, when the Standing Senate Committee on Social Affairs, Science and Technology undertook a study that I asked for on autism disorder. I had been raising my concerns about autism, its immediate impact on individuals and its eventual impact on society for months.

Senators Art Eggleton and Wilbert Keon, chair and deputy chair of the committee, responded by leading a thoughtful and comprehensive series of hearings with witnesses representing every possible dimension of autism: children, parents, health care workers, policy-makers, educators and therapists. Their voices were captured and amplified in the groundbreaking report based on our study, honourable senators, Pay Now or Pay Later, Autism Families in Crisis, released in March 2007.

Autism advocates across Canada applauded the report’s recommendations, particularly for the federal government to develop a national ASD strategy. This goal was and remains today a significant catalyst for Canada’s autism advocates to pull together to ensure their collective voice is heard. As a result, we have an autism community.

One of my proudest achievements since joining the Senate was the passage of my private member’s bill, an Act representing World Autism Awareness Day. Again, we did this together. Now enshrined in Canadian law, this day gives us all an opportunity to show families of people with autism that their plight matters, that the people of Canada respect and admire them for doing the best they can in the name of their children, brothers, sisters, grandchildren, nieces and nephews.

World Autism Awareness Day also sparks empathy among the citizens of this country about autism, its symptoms, the people affected by it and the need to address the crisis it has become. Ready, Willing & Able is another example of progress. It is a program that brings people with ASD and disabilities together with potential employees, giving all parties the chance to run through real application and hiring processes.

I applaud the former government for being part of this and for funding this program and accepting this program. I remember the great work of the late former Finance Minister Jim Flaherty. He was so good to me and he was so good to us. The former government recognized Ready, Willing & Able for its capacity to help people who typically struggle to find work. The program demonstrates to employers that they are an untapped source of talent and workplace contributions.

In the last federal budget the government allocated a generous investment to supporting Ready, Willing & Able. The former government also took other steps to address the autism challenges. The Income Tax Act includes some helpful provisions such as disability tax credits and national surveillance those initiatives came from the Senate report. It is so important. National surveillance is in its early stages. A research chair in ASD was also created at York University. These are the ideas that came from the people we listened to. It takes commitment to cooperate and break down silos of expertise to work with individuals and organizations that the like-minded are also different.

Established just months following the release of the Senate autism report, The Canadian Autism Spectrum Disorders Alliance embodies such commitment. Eight years since its formation, CASDA continues to grow and is unyielding in its determination to engage all levels of government in addressing its call for inclusion and improved coordinated services.

On April 2, 2014, only a year and a half ago, the alliance, in partnership — and this was also part of our report — with the Public Health Agency of Canada, launched a National Needs Assessment Survey to gather input from almost 6,000 respondents, parents and service providers.

Think of this: We are getting all our statistics from the Centers for Disease Control and Prevention in Atlanta, Georgia about our country, and we are now doing what we should have done long ago but this is being done now.

The rationale behind this was strategic. The findings would be used to have a means to speak with authority and inform evidence-based decision making. With the National Needs Assessment Survey complete and a report prepared, decision makers today have strong evidence in their hands of real human experiences, gaps in services, especially with our Aboriginal people, and what the priority areas for future work should be.

Last year CASDA organized the first national autism leadership summit that was held in Ottawa. The findings of the needs assessment survey were central in discussions and presentations on building commitment for a shared leadership movement.

The summit closed with an announcement representing perhaps one of the most promising advancements to date: a $2-million investment by the federal government to create a stakeholder working group led by the Minister of Health. The new Minister of Health has promised that she will carry on this work. That’s handing off from one government to another; not changing programs but moving it forward. The group was tasked with the development of a plan for a Canadian autism partnership that would address key issues facing Canadians living with autism.

In preparing my presentation to you, I debated about whether to begin with the good news or the bad. You have now heard the good news. I have provided examples of building blocks and progress in our country’s ability to deal effectively with autism. However, in communities where each of you live, there are still families weighed down and incapacitated by the demands of dealing with autism. Waiting times for early diagnosis can be years. Because of this, many young children cannot access intervention treatments early enough to realize optimal benefits.

To avoid waiting and missing out on necessary treatment, parents are paying out of their own pockets for services unavailable through the public health system. Autism is a significant health issue and people need to pay for basic assessment and treatment. By the way, it is also a human rights issue in my view.

Once children with autism turn 18, they lose their pediatricians, they lose their eligibility for public funding of speech and language services and behavioural therapy. At 21, they can no longer attend public school. Only a lucky few live in group homes and attend day programs or even have part-time jobs. And of course, honourable senators, it is not only the children with autism who are getting older, but the parents who care for them are, too, which heaps worry on uncertainty and creates desperation within families.

Honourable senators, if you have talked with parents with autistic children you most certainly have been touched by their stories. In each there is always a common fear: What will happen to my child when I can no longer carry the load? That’s the question. It is a thought that haunts each and every parent of a child with autism. And their concern is legitimate. Care and housing options for autistic adults in this country are meagre.

Two years ago, I met with a group of parents in Woodstock, New Brunswick, who were raising their autistic children without the benefit of even knowing what public resources they were eligible for and how to access them. Meanwhile, the provincial government was puttering away less than two hours down the highway from the homes where they struggled in isolation and without support or guidance.

On a stormy night in Walton, Ontario, near Lake Huron, only a year ago, I met with another group of parents. One of them was a mother who spoke tearfully about her experiences raising her autistic son, who was prone to violence. She described how her only defence against being physically hurt by him — and you have to remember she’s being loved by him six days a week — was that she could still outrun him. It is 2015, and she has to run from her own son down an isolated country road in the middle of the night.

What people with autism need most is what we all need and want most: the opportunity to learn, to acquire life skills and to become as independent as possible. Where there is a lack of opportunity to support transitions, gaps must be filled and changes introduced. Inclusion has to be an explicit social and policy priority. Ignoring the necessity for and failing to create these vital opportunities is a human rights travesty.

Honourable senators, after all these years I still wonder when the federal government will live up to its full responsibilities because we always hear it’s provincially run. It’s not a federal responsibility. Well, it is a federal responsibility. We have a federal responsibility for our Aboriginal children across the country who have no services. There has to be a national summit and there must be collaboration — there really must.

The best efforts of every individual and organization set on helping people with autism will never be enough. The government has to take the lead and bring together all the expertise and approaches that have been achieved by the autism community so we can move forward with strength and hope for every Canadian impacted by autism, for every Canadian.

If people are talking in too many different voices, sometimes it gets too confusing. If we are trying to establish some form of policy direction on autism, we have to be moving in one direction and have people come together with one voice. That’s what I said at this autism summit. And who was there with me but my friend Mike Lake, member of Parliament and still a member of Parliament. Not to be partisan about anything, but I’m really glad that Mike Lake won and he’s still with us. I’m sorry for the Liberal candidate there, but that’s the way it goes. Mike and I work so well together, and we will continue to push this. He has already spoken with the new health minister. We just changed roles in our institutions, but it really doesn’t matter. There is no bad seat in the Senate and no bad seat in the House of Commons, so we can still work together.

With autism rates in Canada currently estimated to now be one in sixty eight children, autism is the issue of our times. As much as progress continues, the gaps in services to people who need them only become more unacceptable and unjust.

Carla Qualtrough, the minister responsible for disabilities, Minister of Health Jane Philpott, whose portfolio includes PHAC, Carolyn Bennett, Minister of Indigenous and Northern Affairs, Kirsty Duncan, Minister of Science, member of Parliament Judi Sgro — these are all honourable parliamentarians who have demonstrated commitment to addressing the autism challenge and whose responsibilities relate to the most critical autism issues.

In closing, honourable senators, with each building block added to the platform for a national ASD strategy, with each inroad to reaching our federal decision makers, we are closer to achieving a strategy than ever before. Still, I would like to see more evidence. Our government, this government, needs to make specific reference to a national ASD strategy, and I’m sure as we work here together in the Standing Senate Committee on Social Affairs, Science and Technology and other committees, we can stand together and walk out of here maybe once every month or every three months together as a group and have a news conference outside here and tell the government that we’re paying attention and we’re not going to let this thing go.

Trusting in the intentions behind the high-level language in the Throne Speech is insufficient. Trusting in the intentions behind the high-level language in the Throne Speech is insufficient. The stakes are too high.

Honourable senators, with this new government, positioned as it is on the advancements realized by the previous government, and this community’s vast, multisector autism community, there has never been a better time to give the country what it needs. Our new government is in the unique and optimal position to take decisive and moral action.

I will add that a national ASD strategy would open the door and give much needed hope to other groups within our population, including others with intellectual and physical disabilities who are also struggling to live fully and realize their potential as human beings. An open door for this, honourable senators, is an opening for all of us who want to live in a country that respects and protects the right of all of its citizens.

I want to thank you for your attention, honourable senators. I look forward to talking with you about this in the months to come. Together we can do this. Thank you.