Hon. Leo Housakos (Acting Leader of the Opposition) moved second reading of Bill S-203, An Act respecting a federal framework on autism spectrum disorder.

He said: Honourable senators, I rise today to speak about a subject near and dear not only to my heart but to the hearts of so many of my colleagues, present and past. Of course, I would be remiss without highlighting the fantastic work done by Senator Munson through the years in advocacy in this chamber of causes like autism.

When I came here, of course, he was a bit of a role model, being a fantastic spokesperson for the cause. He was quite a pioneer and ahead of his time and I was happy to jump on that bandwagon. Since then, there have been a number of colleagues as the momentum grows and we come to understand the importance of autism and how many people it touches. Of course, Senator Bernard and Senator Loffreda — who has accepted to be the friendly critic on this bill — and, of course, my dear friend and colleague Senator Boehm, who, right at the beginning, at the embryonic stages of this bill, and I chatted together. We’ve come to the conclusion that this is about time and is needed.

In many respects, I consider Senator Boehm my co-sponsor of the bill. We hope we can stickhandle this through on a non-partisan basis where all corners of this chamber will speak with a force and a power that will propel this issue to where it belongs.

Each and every one of us have spoken about this. We’ve had committee meetings and Autism Awareness Months and various events. We’ve tabled a very cutting-edge report called Pay Now or Pay Later here in the Senate, which has been cited for many, many years, but I remind colleagues that report was published in 2007. Now the time has truly come for action, I believe. The time has come for us to stand together as members of this great chamber to support the 1 out of 66 Canadians who receive this lifelong, debilitating diagnosis.

Autism spectrum disorder, commonly referred to as ASD, is the most common neurodevelopmental disorder diagnosed amongst children in Canada, occurring in all racial, ethnic and socio-economic groups. Would you believe that almost 15 years have passed — as I mentioned — since a distinguished group of our colleagues in the Senate reported Pay Now or Pay Later and put it on the radar, calling for a national approach in support of autistic persons and their families? The report outlined in great detail how such a framework should be developed in consultation with leaders from the autistic community, medical experts, researchers, government bodies such as Health Canada and many others, and include a properly defined budget, while respecting jurisdictional regulations.

Colleagues, 15 years is a long time. While successive governments have made some efforts to support specific projects or autism programs across our great nation, these efforts do not, in any shape, way or form, fully meet the needs of Canadian families dealing with the challenges of autism.

This is why I stand before you in a non-partisan spirit of unity and ask each of you to support this bill calling upon the government to implement the framework proposed in 2007 in the Senate by a committee of our own peers.

To understand the challenges faced by many autistic individuals, one must first begin with a definition of autism. According to leading international medical organizations, such as the American Psychiatric Association, autism is a neurodevelopmental disorder that includes impairments in language, communication skills and social interactions, combined with restricted and repetitive behaviours, interests or activities.

While every individual is unique and encompasses specific challenges and strengths, many autistic people often suffer from a variety of sensory issues and the inability to completely regulate their emotions.

At this time, I’d like to reiterate something I have previously stated, and that is that the quality of Canadian expertise in autism care is certainly not in question. Indeed, we proudly boast some of the best and brightest minds in the world who are involved in all levels of autism research and care.

For example, in my own province of Quebec, the Transforming Autism Care Consortium, known by its acronym TACC, is a world-class research network based at the Montreal Neurological Institute. Its stated goal is to connect and mobilize Quebec’s strengths in autism research, all in an effort to improve the lives of people with autism as well as their families. According to the TACC, this is accomplished through “accelerating scientific discovery, capacity building, and integrating evidence in practice and policy.”

Another organization near and dear to my heart is the Giant Steps Resource and Training Centre in Montreal, a very special school that caters to the needs of autistic students while offering a wide variety of services, including major projects that focus upon employment options for autistic adults in partnership with major Canadian corporations such as Weston.

Indeed, Giant Steps has embarked upon a very ambitious project: the construction of a $51.5 million centre that will act as a major hub in the autism community and will include the school itself, in addition to three more pillars focused upon community services, adult and vocational services and research in partnership with TACC. The Province of Quebec has committed $15 million to the project, while the organization has raised millions of dollars in private funds to see it completed.

These are just some of the examples of the incredible work regarding autism being done by a variety of organizations right across Canada. There are most certainly many others, but these types of Herculean efforts are severely hampered by the deeply disappointing fact that we have not adopted a structural national policy.

Fifteen years after the Senate report, we still hear about the wait-list for diagnostic services and availability for therapies critical to the development of autistic children. We still hear the stories about families struggling with ever-increasing financial burdens involved with autism. We still hear the stories of parents being forced to give up jobs and careers to care for their autistic kids. We still hear the scary statistics regarding the challenges faced by autistic adults who face daunting employment prospects with an unemployment rate of 80% and a lack of suitable housing and support.

My fellow senators, as I stated earlier, successive governments have, in a piecemeal fashion, made efforts to support autistic people and their families in Canada.

I think of the example of Prime Minister Harper, who committed $11 million to support training programs for autistic adults. More recently, I had the privilege of working closely with Senators Munson and Bernard when we met with former health minister the Honourable Ginette Petitpas Taylor. The minister visited Giant Steps and the TACC in Quebec, in addition to other organizations in various parts of the country. These efforts resulted in the successful implementation of several programs, including the autism employment project run by Giant Steps, the TACC, the English Montreal School Board and the Weston corporation.

I would be remiss if I didn’t underline and highlight the participation — more than participation — of the former government leader Senator Harder who was the catalyst for bringing then Senator Jim Munson, Senator Bernard and me around the table with the minister, and some of these initiatives were realized by that work. So thank you, Senator Harder, for that.

While we all deeply respect our critical role in this chamber of sober second thought, a role that includes serious debate based upon our respective philosophies and opinions regarding policy, we must work together on basic issues that affect so many of our fellow citizens.

Hence, when one considers the issue of autism, we owe Canadians the spirit of collaboration they so richly deserve, particularly when one considers the specific challenges faced by 500,000 autistic Canadians and their families — a number that rises every year in this country.

My fellow senators, the Pay Now or Pay Later: autism families in crisis report was very well thought out, and it speaks volumes. There is a great deal of research demonstrating the often debilitating periods autistic people and their families go through. These include the early stages of a child’s development when parents realize their son or daughter may exhibit the symptoms of autism only to discover the lack of diagnostic services and waiting lists in the public system.

Once diagnosed, many families then endure the stress of waiting for therapeutic services such as applied behavioural analysis, speech and occupational therapy. The challenges continue when looking for an appropriate school setting while balancing the realities of therapies that not only impose the already stated financial difficulties but are extremely time-consuming.

Colleagues, these parents are tired and need support. For most, the challenges mentioned only continue when adolescent children reach the age of majority.

The Senate report illustrates what many autism advocates have known for a long time: namely, that families often experience the feeling of falling off a cliff when their child becomes an adult.

Essentially, precious and often fought-for services geared toward autistic children and adolescents disappear as individuals enter the separate realm of services geared toward adults. Parents find themselves desperately restarting the process of finding appropriate medical services and programs for their adult children.

Questions regarding employment, housing and age-appropriate social services are paramount. Families struggle to find programs for their autistic sons and daughters, asking the common question: What happens to him or her when I’m gone?

The simple reality is that our adult years represent a far longer period than our youth years. Incredibly, so many years after the report, we still don’t have a policy that takes these factors into account. For a large percentage of families dealing with Autism Spectrum Disorder in Canada, the diagnosis represents not only a lifelong condition for the child but a lifelong commitment for caregivers.

Many opportunities readily available to healthy young adults are often unattainable for people on the spectrum, not because of lack of ability but because of a lack of resources or awareness. Many autism organizations, some national in scope such as Autism Speaks Canada, have worked hard to raise awareness about this critical issue. I cannot help but ask: What is our federal government doing to help?

Like all of you, I’m fully aware of the role our esteemed colleagues at the provincial level play across this great nation. We are fully aware of provincial jurisdictions and must respect our constitutional realities.

Having said that, there is no doubt that the Canadian government has a critical role to play, whether in support of our provinces with funding for provincial programs focused on ASD or through the development of a much-needed, comprehensive national policy that includes the development of programs that fall under the jurisdiction of Ottawa.

We must also look at dealing with autism as more than just a health care issue, especially as it pertains to autistic adults. The issue transcends health care and education and reaches into areas such as housing and employment. This is very much the responsibility of our federal government. We must provide the necessary leadership as senators and as parliamentarians.

Moments ago I mentioned ASD organizations with a national scope. Soon after the release of the Senate report on autism, the autism community came together and established CASDA, the Canadian Autism Spectrum Disorder Alliance. We all know of the great efforts being made by organizations such as CASDA, which has also called upon the federal government repeatedly over the years to develop a national autism strategy. The obvious question is: Is anyone listening? Are we going to respond?

CASDA has worked on a blueprint that takes into consideration all key elements of the Senate report, recognizing that regardless of what province one lives in, parents continuously report that they are responsible for covering any service shortfalls because of the variability in provincial funding and availability of programs. Families have had to move because of the lack of services. My fellow senators, this is unacceptable in a country like Canada. Can we accept the systemic failure by the federal government to develop a national policy when the data clearly demonstrates an increase in the prevalence of autism and the needs of thousands of Canadian families?

I’m hopeful that everyone in this chamber agrees that legislative action at the federal level is absolutely necessary — from coast to coast to coast. We, as well as our elected colleagues, have heard autistic Canadians, their family members, experts and advocacy groups demanding help. We have heard the calls to improve services through a federal policy, and we’ve heard the calls to raise awareness not only about autism but about the principle of neurodiversity in Canadian society. We have heard the calls to recognize the innate value of each and every unique citizen among us. Why, then, have we not acted in good faith by doing our job and putting into law that which we know to be just and fair?

Colleagues, what I’m proposing is that we pass legislation requiring the federal government to create and adopt a national policy on autism, within a specified time frame, with the expressed intention of working with the provinces and territories while respecting provincial and territorial jurisdictions. In addition to a specific time frame, this framework would be subject to parliamentary oversight.

Again, we all recognize that jurisdictions must be respected. However, I will remind everyone here that we have witnessed successes with federal and provincial cooperation on projects such as the recent example of the federal support for provincial child care programs. In principle, this approach can also be used to establish a national policy on autism that will focus upon, among other things, appropriate levels of funding, services, employment and housing.

While there are benchmarks, including timelines, the legislation is intentionally not being too prescriptive in what the framework itself should entail. The government has to be allowed the flexibility to respect the consultative process of this legislation. The legislation would ensure a coordinated national strategy aimed at supporting long-term solutions for autistic Canadians and their families, who would ultimately benefit from the implementation of a federal framework.

One of the projects the team at Giant Steps embarked upon, which the federal legislation can support and build upon, was based on the notion of inclusive communities that focus on the principle of neurodiversity. Dubbed the Autism-Inclusive Cities Project, Giant Steps worked closely with the City of Laval several years ago in an effort to improve the lives of autistic people living in that municipality. With substantial buy-in from the city administration, the police force and other first responders receiving training — as did local organizations such as Tourisme Laval, which helped to organize a conference in conjunction with the city — the police training expanded to the city of Montreal and is now being used by several municipalities across our nation.

Other local efforts include an autism awareness and sensitization initiative at the former Dorval airport, where hundreds of parents and their young autistic children get to experience the process of arriving at the airport, going through customs and actually entering an aircraft. This gives the children a valuable opportunity, that of understanding the process involved in travelling, thereby easing a highly stressful experience that so many of us take for granted.

Other bold initiatives include a variety of employment projects, such as the already mentioned Polaris Enterprise initiative, the national-based Ready, Willing and Able employment service and Specialisterne Canada, a job placement service for autistic adults based in Toronto. These examples of initiatives are exemplary and are being developed across Canada. In most cases, without the proper support by the federal government, many local businesses, corporations and non-profits — such as the Azrieli and Coutu foundations, among others — have supported these types of efforts. However, they can only do so much in a country the size of Canada. That is why we must provide the necessary legislation to ensure the rights of autistic Canadians. We need to make these efforts the norm and not the exception. Proper support for these types of endeavours, in addition to proper services for individual families, must be supported by the rule and weight of law.

It isn’t all about doom and gloom. On the contrary, it’s about making sure everyone has the resources and support to realize their true potential. That was the core principle behind the fundraiser — a number of fundraisers, in fact — that my colleague Senator Loffreda and I have hosted in Montreal in support of autism and particularly in support of Giant Steps. Of course, we call those events Children First. We Can. because we believe that that is the right thing to do. Thank you, Senator Loffreda, for your unwavering support through the years.

It was about putting these autistic children first, giving them the tools and their families the support to make sure that they could; to make sure that they won’t be left behind. We as Canadians take pride in the fact that we have to harness and emulsify all the skill sets of every single Canadian regardless of what speed they go; we need to get to the finish line together. That’s why this national framework is so vital to autistic children and to the autistic adult community in particular. Not only do they benefit from realizing their true potential, but we all benefit.

I hope, colleagues, that we can get this bill headed towards the right direction. Again, I thank Senator Boehm for his unwavering support and cooperation with this and, of course, for his advice on preparing the bill and on how best to approach government. There’s no one in the chamber that has more experience than Senator Boehm in stickhandling things through our administrative process here in Ottawa because of his contacts through the years with government. I’m so happy to see, as well, the answer of so many of my colleagues. When Senator Boehm and I reached out to so many of you, the interest was overwhelming. The campaign and awareness regarding autism seem to be just ramping up in many ways. Senator Gignac, one of our newest senators here, reached out, and we had a good conversation. He, as well, has a keen interest in this issue.

I am excited, happy and hopeful that early in the year we can unanimously send this to the Social Affairs Committee for a thorough review and prepare the ground so we can send it over to the other side and encourage the government to embrace this as their initiative. Because this should be the initiative of both chambers, all of Parliament and the Government of Canada. Thank you, colleagues.