Hon. Ratna Omidvar: Honourable senators, I have the honour to present, in both official languages, the sixth report of the Standing Senate Committee on Social Affairs, Science and Technology, which deals with Bill S-203, An Act respecting a federal framework on autism spectrum disorder.

(For text of report, see today’s Journals of the Senate, p. 499.)

The Hon. the Speaker: Honourable senators, when shall this bill be read the third time?

(On motion of Senator Miville-Dechêne, bill referred to the Standing Senate Committee on Legal and Constitutional Affairs.)

[Translation]

The Hon. the Speaker: Is it your pleasure, honourable senators, to adopt the motion?

The Hon. the Speaker: Honourable senators, when shall this bill be read the third time?

(On motion of Senator Miville-Dechêne, bill referred to the Standing Senate Committee on Legal and Constitutional Affairs.)

(1540)

[Translation]

The Hon. the Speaker: Is it your pleasure, honourable senators, to adopt the motion?

Hon. Senators: Agreed.

(Motion agreed to and bill read second time.)

Hon. Tony Loffreda: Honourable senators, today I rise as the critic for Bill S-203, An Act respecting a federal framework on autism spectrum disorder. I can assure you that I support Senator Housakos’ bill and hope it will be passed. I would like to thank both Senator Housakos and Senator Boehm for their speeches last week. I think that, together, they showed us why we are in urgent need of a federal framework.

I’m here today as an ally of the community of people with autism spectrum disorder, not as a caregiver or person with direct, personal experience with people with autism. I know some of you have that kind of experience, and I hope we’ll have a chance to hear from you.

[English]

Colleagues, as Senator Housakos pointed out last week, this bill would empower the Minister of Health to develop a federal framework on autism spectrum disorder in consultation with other cabinet ministers, representatives from provincial and territorial governments and relevant stakeholders from the medical, research and advocacy communities.

The bill requires that the framework address six key areas. They are: financial support for autistic persons and their families, including the establishment or expansion of tax benefits as required; support for caregivers of autistic persons; a national research network to promote research and improve data collection on autism spectrum disorder; a national public awareness campaign to enhance knowledge and understanding about autism spectrum disorder; an online resource on best practices to support autistic persons, their families and their caregivers; and mechanisms to ensure accountability in the use of federal funds for autistic persons and their families.

As you can see, the bill provides the minister with a roadmap on what the framework should include and is broad enough to allow for flexibility and originality. It is, by no means, too prescriptive. The bill also requires that the minister table the federal framework in both houses of Parliament within 18 months after the day on which S-203 receives Royal Assent.

I am also happy to see that the bill includes a five-year ministerial review. Upon completion of this review, the minister must table a report that sets out the measures from the framework that have been implemented, those that have yet to be implemented, and their effectiveness in supporting autistic persons, their families and caregivers.

As I’ve often said, you can’t improve what you don’t measure. If you collect data and if you assess performance, you are in a much better position to manage results, properly evaluate outcomes, and make appropriate changes and improvements moving forward.

As you know, there’s been talk about establishing a national autism strategy for many years. There’s been meetings. There’s been funding. There’s been proposals and blueprints. And yet, here we are today debating a bill that would legislate the creation of a federal framework on ASD.

Two months ago, the Canadian Autism Spectrum Disorder Alliance—CASDA, held its 7th Annual Canadian Autism Leadership Summit during which they reiterated their strong desire for the implementation of a strategy that would ensure that all autistic people living in Canada have full and equal access to the resources they require to achieve their full potential. As Senator Boehm pointed out, a national strategy could be created within the framework proposed in S-203.

As it was mentioned last week, there are many ASD advocates in this chamber. I would be remiss if I didn’t acknowledge the work of our former colleague Senator Munson.

As for me, my involvement with the autistic community goes back more than 10 years, more than a decade ago, and it all started when our friend and colleague Senator Housakos introduced me to Giant Steps.

As he alluded to in his speech, for more than 40 years, Giant Steps has been offering second-to-none educational services to students aged 4 to 21 years old with autism spectrum disorders. I always refer to it as the Harvard of autism schools in Canada. It is truly a global leader in its field.

More than a decade ago, the school initially reached out to me in my capacity as a senior executive at RBC and because of my community involvement and philanthropic activities. At the time, most banking institutions were hesitant to invest in schools. It was always more difficult to secure financing. They and we wanted to change that. I can proudly say there has been considerable improvement on that front.

I was immediately touched by the struggles and hardships of families affected by ASD, the limited resources and the financial gaps in offering adequate services that are highly individualized, intensive and holistic.

One meeting — that’s all it took for me to be fully onboard and committed to helping Giant Steps raise funds so it could properly expand its services and resources, share and adopt best practices, and increase awareness. For more than 10 years, and up until my appointment to the Senate, I’ve helped raised significant funds for Giant Steps.

I’m also happy to report, as mentioned by Senator Housakos last week, that Giant Steps also recently secured a $15-million grant from the Government of Québec and raised millions of dollars for a new, 67,000 square foot, cutting-edge facility in Montreal.

The Giant Steps Autism Centre will include a specialized school, a training centre for adults, a community resource centre and a research hub, all dedicated to the lifespan needs of people with autism. It has been designed to take into consideration the many perceptual differences and sensory challenges often facing people with autism.

One of the last fundraising events I chaired for the school was in June 2018 when I served as honorary president of the Formula 1 Grand Prix du Canada gala. “The Grand Evening,” as we call it, raised funds for two groups dedicated to autism: Giant Steps and the Véro & Louis Foundation.

[Translation]

For those who may not be familiar with the Véro & Louis Foundation, it was founded in 2016 to advocate for long-term housing for adults with autism. The foundation’s ultimate goal is to create homes for people with autism who are 21 years of age and older, with or without intellectual disabilities. The first house opened last spring in Varennes, a suburb of Montreal. The foundation is aiming high and hopes to build more such homes.

A multidisciplinary team of experts left nothing to chance in the design and construction of the house. Everything was carefully thought out. In an article published on June 10 in La Presse, Laila Maalouf wrote, and I quote:

In this brand new building surrounded by green space and birdsong, next to newly built condos, everything exudes calm and serenity. The environment is subdued, specially designed to avoid any sensory stimulation that would disturb the well-being of the residents. Absolutely everything, down to the smallest detail, has been thought out and purposely designed with that in mind. The lighting is soft; the corners are rounded; the mirrors in the bathrooms can be covered up for those who prefer not to see their reflection; the white paint on the walls is combined with light-coloured wood to create a soothing effect . . . Even the stainless-steel countertops in the kitchen are matte to avoid any reverberation.

I felt the need to quote this excerpt from La Presse because it clearly shows the importance of research and best practices, two things that Bill S-203 seeks to do by establishing a national framework.

[English]

In many ways, I feel like knowledge and understanding will lead to awareness and acceptance. If we understand the difficulties and uniqueness of autism spectrum disorder, or ASD, we will have greater awareness and are in a better position to accept and embrace those differences — judgment free. One crucial piece of Bill S-203 is just that: a national public awareness campaign.

Before I wrap up, I want to share a story from Italy that goes to the heart of what this bill seeks to achieve: namely, the development and implementation of a federal framework that could provide autistic Canadians with assistance with respect to employment. Time and time again, we hear that individuals with ASD are often left to fend for themselves once they reach adulthood. Housing and employment are major barriers for many. The Véro & Louis Foundation is trying to fill that void by offering a home for autistic adults, but I want to briefly mention a wonderful success story from Milan, Italy, called PizzAut – not to be confused with Pizza Hut.

PizzAut is a new Italian pizzeria run by young adults with autism. It is a laboratory for social inclusion and a non-profit organization that offers work, training and, above all, dignity to people with autism. Each autistic person receives personalized training to become a pizza chef or a waiter. Each workspace and tool has been designed to help support them in their daily work. Taking orders, for example, could be a daunting task for some. Samsung stepped in and created the first app that allows autistic people to literally manage a restaurant. Everything was designed and engineered with the autistic person in mind. They were at the heart of its development. Autistic waiters get to work in a completely independent way.

What else could we ask for? We get to eat good pizza while doing some good, promoting diversity, embracing inclusiveness, creating a feeling of community and giving these young adults a sense of accomplishment and belonging — a sense of purpose. A sense of purpose is what we all want in life, and they deserve that too.

Let’s not forget to mention that PizzAut has been a major hit since it opened its doors last spring. There’s already talk about expanding the model, and why not? It’s a brilliant idea: It’s noble, inclusive and empowering. In fact, the city of Milan is honouring PizzAut today, December 7, with a certificate of Civic Merit as part of its Ambrogini d’Oro awards.

Over the years, I’ve met with board members of autistic schools, educators, parents closely affected by autism and other stakeholders to explore future employment possibilities for the autism community. I know there is some interest, and I’ve also met with potential investors looking into replicating the PizzAut model in Canada. In fact, they were the ones who approached me. That’s how I became aware of the model. We all know how difficult it is for adults on the spectrum to secure employment in adulthood, so this is great news, and I see much potential for this initiative.

It’s also worth pointing out that the finance and labour committee of the Italian Senate adopted an amendment to its tax law last week, endorsed by all parties, that would provide important tax and contribution reductions for innovative companies and start-ups that hire workers with autism spectrum disorder. This sends a strong signal to the business community that embracing diversity and giving ASD individuals employment opportunities will be rewarded. The amendment is not law yet but, as I understand it, success is just around the corner.

The big challenge is providing work for those with autism, and I was advised that people from PizzAut came looking for advice, asking if there was something we could do in the Senate to create a law similar to what they have in other countries — to encourage Canadian companies to hire those with ASD and to create a sense of community. We need a sense of community for the people who have autism and for adults especially — because the schools are great, but once they get to a certain age, they need more. This is what we have to create. I am confident that they will export that model elsewhere, and we will eventually have both purpose and work for adults with autism.

Honourable senators, as I conclude, I want to remind everyone that ASD affects 1 in 66 children and youth in Canada. We also know that a person with ASD may find it difficult to connect or interact with other people for a multitude of reasons. They could have difficulty communicating with others, find social situations intolerable or simply show little or no interest in a plethora of activities, subjects and hobbies. In my humble opinion, Bill S-203 can offer a glimpse of hope and encouragement to the ASD community, and particularly to parents and caregivers who need that hope and encouragement.

Last week, Senator Boehm reminded us that, like other parents of autistic individuals, he worries about the future and who will advocate for his son. I want to reassure you, Senator Boehm, and thank you and Senator Housakos for introducing the bill. I want to reassure you, senators, and the entire ASD community of my unending support and commitment. I will continue to advocate for greater resources, services and funding for the autistic community.

I hope our colleagues will join us on this quest, and I hope this bill can be sent to committee before the holidays so it can be given the attention it deserves. I have no doubt that the many stakeholders will welcome the opportunity to offer some insight on this bill, which is very important. Canada’s ASD community is relying on us all to get this done, to get it done right and to get it done soon. Thank you.

Some Hon. Senators: Hear, hear.

(At 8:57 p.m., the Senate was continued until tomorrow at 2 p.m.)

The Hon. the Acting Speaker: Senator Housakos, would you take a question?

Senator Housakos: Absolutely.

[Translation]

Hon. Pierre J. Dalphond: I have a question for the sponsor of the bill.

[English]

Hon. Peter M. Boehm: Honourable senators, I rise to provide my support for this bill. I commend Senator Housakos for introducing it and for his work in the autism community, particularly in Montreal.

Colleagues, this is not a partisan issue. Autism spectrum disorder, or ASD, impacts families all across our country regardless of their location, ethnic background and how they may vote in elections.

For me, the appeal of the bill is that it is general, recognizing that there are jurisdictional issues and varying approaches in dealing with ASD across the country. Hence it is a framework within which a national autism strategy could be created.

It suggests general measures encompassing financial support for autistic persons, their families, appropriate tax benefits, a research network, a public awareness campaign, using online resources to highlight best practices and measures to ensure accountability.

It recommends consultations across the breadth of the federal government, but also with provincial jurisdictions; relevant stakeholders; experts; advocacy organizations, to which I would also add self-advocates, many of whom have been in touch with me; and, of course, important for us here and in the other place, a mechanism to report back to parliament.

As Senator Housakos has said, the idea for a national autism strategy is not new. However, while much has been talked about, very little has actually been done since the release of the 2007 report by the Senate’s Standing Committee on Social Affairs, Science and Technology entitled, Pay Now or Pay Later: Autism Families in Crisis. This is a well known and oft-cited report which our current colleague Senator Cordy had a hand in as a member of the committee at the time.

We need to recognize that the government has been preoccupied in the health sector for almost two years with a pandemic that is still not over as new COVID-19 variants emerge. This has engaged policy planners as well as federal and provincial government operational units full time, but, hopefully, this pandemic will soon become endemic. Work that may or may not have begun towards a national autism strategy could be encouraged by this bill. In fact, former Senator Munson and I had plans to meet with the previous Minister of Health to talk about a national autism strategy, and it was just at that point when the pandemic hit us with full force.

The intention is not to supplant any activity that may or may not be going on but to give it structure and, through the publicity for this bill, purpose.

A number of senators in this chamber have taken a great interest in ASD. Senator Housakos has mentioned a few, but I want to mention Senator Bernard, Senator Loffreda, Senator Harder, Senator Hartling, and my colleague and seatmate Senator Kutcher, who knows a lot about mental illness and mental health.

We cannot forget the great contributions made by our former colleague Senator Munson who championed the need for a national strategy, ensured the creation of an Autism on the Hill event and provided a voice for many advocacy organizations. In fact, Senator Munson was also a member of the committee in 2007 that produced the Pay Now or Pay Later report.

Work is not just happening here in the Senate. In the other place, Member of Parliament Mike Lake has been a tireless advocate in pushing the need for a strategy forward, not just in Canada, but also globally.

The Canadian Autism Spectrum Disorder Alliance has set out some clear precepts for a strategy. Senator Housakos has touched on them. I will add a little bit.

On research, we need to realize that there is only fragmented knowledge sharing across the country, without national standards on research. A national leadership framework and regular federal, provincial and territorial ministerial meetings could change that and create a national advisory group that could assess accessibility standards as well as intersectional elements to ensure racialized immigrants and newcomers, Indigenous peoples and those in remote and rural communities are not discriminated against.

Affordability and access to services are important elements to ensure autistic individuals can reach their full potential and live a fulfilling life. This aspect could also include review, renewal or improvement of federal tax measures, including reforming the Disability tax credit, comprehensive training programs to provide greater access to the job market and introducing a national autism waitlist reduction initiative. The waitlists for therapy, assessment, training and placement in special education or living in specialized group homes as adults are horrendous. In my own province of Ontario, the current and previous governments have failed to address this challenge head-on.

Active consideration of placing treatments for ASD under medicare is also a subject that has been discussed by numerous advocates and should be addressed.

It is important to make sure early development intervention services are available on the autism spectrum through what has been called an Enhanced 18-Month Well-Baby Visit so that children can get access to early developmental intervention services. There should be a universal, standardized approach across the country.

As Senator Housakos mentioned, nearly 80% of adult autistic Canadians are unemployed, and many of the remainder are underemployed. This is both a reflection of the breadth of the spectrum but also the lack of pre-employment training programs and funding. There is much to do here and a concerted effort could be made to attract the private sector, including with some federal sectoral incentives.

Regarding housing, there should be a disability supplement to the Canada Housing Benefit. Canada Mortgage and Housing could also be brought into the picture with respect to supply, and establishing contacts between housing developers and autism service agencies.

Finally, data. Data is being talked about in the context of the COVID pandemic. Data systems should be linked to ensure better information sharing. There should be a media campaign to improve the public perception of ASD, equity and inclusion, as in fact the bill before us suggests.

Colleagues, for me this is deeply personal. The third of our four children, Nikolas, is autistic. He was born on posting in San Jose, Costa Rica. We had to bring him back here to have him diagnosed. He was misdiagnosed here in Ottawa. We had to go through more diagnostic procedures. He is now 33 years old and remains non-verbal, but he understands three languages.

Dealing with diagnoses, treatments and navigating supports in a foreign service life that has taken my family from his birth in San Jose to Ottawa, to Washington, back to Ottawa, to Berlin and back to Ottawa during his lifetime has been arduous.

Dealing with his lifelong disability has, without a doubt, been the greatest of challenges, certainly for him, his siblings, my spouse and myself. We have and he has particularly scrambled and persevered. Others have not been as fortunate. Families and relationships have disintegrated. Services have not been offered, diagnoses missed, waitlists extended in perpetuity.

In our travels and in living in other countries, we have learned how other jurisdictions approach autism spectrum disorder. Much can be gleaned from practices abroad in other jurisdictions. Indeed, Nikolas lived in a group home for two years in the state of Brandenburg in Germany, about an hour-and-a-half from Berlin where we lived.

Ironically, Nikolas now lives about an hour and a half away from Ottawa in a small group home. He is doing well. He sometimes comes home. We also go to him, as was the case this past weekend. The pandemic has made meetings difficult, but we were able to go out with him to a restaurant last Saturday. Like many of us, he doesn’t like the mask thing. I think the Point of Order just touched on that. You don’t have to be verbal to indicate that.

Like other parents of autistic individuals, we worry about his future and who will advocate for him in that future. Colleagues, we have a long history in our great country of helping those who are disadvantaged. In fact, we have built ourselves on this. There are many with disabilities who require our support.

Autism needs to be addressed in a straightforward manner. In my opinion, a federal framework can set the parameters for what will surely be a very tough path that lies ahead. This bill will provide the impetus to do just that; I support it very strongly, and I thank Senator Housakos again for introducing it and recommend that we send it to the committee as soon as possible so it can be further enriched as required.

(On motion of Senator Loffreda, debate adjourned.)

[Translation]

Senator Dalphond: Thank you, Senator Housakos, for this worthwhile initiative.

[English]

There are three bills the Senate has adopted that you are certainly modelling your bill on: the Framework on Palliative Care in Canada Act adopted in December 2017, the Federal Framework on Post-Traumatic Stress Disorder Act adopted June 2018, and the National Framework for Diabetes Act adopted in June 2021.

Do you have any indications or results from these bills? Maybe not the one on diabetes that came in just before we broke for the election, but the bills adopted in 2017 and 2018 all have the same deadlines you have: 12 months for a framework and 18 months to report to the House and the Senate. Do you have any information about how these frameworks have, in fact, been implemented?

Senator Housakos: I’m not aware of each and every one of them. I know, regarding the one on PTSD, that the government was a little bit tardy on meeting the timelines, but they did have the national conference and did table a report in Parliament in regard to that particular motion.

When it comes to motions, as you know, they are suggestions we make to the government, and we hope the government finds it in their benevolence to embrace them.

In this particular instance, one of the reasons why Senator Boehm and I decided to put it into a bill is it comes with more veracity of weight than just a simple motion. But in all fairness, we’ve tried to make this a non-prescriptive as possible, giving the government all the flexibility it would need.

We are just looking to move the sticks forward incrementally, as they say in football, pointing it in the right direction and shaking the tree a little bit. We find that successive governments have been reticent in tackling this issue, so we feel passing this bill in this state in a flexible and cooperative way will encourage the government to take the baton and run with it, as they have with most motions, even if, as in the case of PTSD, they were delayed six or seven months.

The Hon. the Acting Speaker: Senator Housakos, would you take a question?

Senator Housakos: Absolutely.

[Translation]

Hon. Pierre J. Dalphond: I have a question for the sponsor of the bill.

[English]

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.

The Hon. the Speaker: Honourable senators, when shall this bill be read the second time?

(On motion of Senator Cordy, for Senator Mercer, bill placed on the Orders of the Day for second reading two days hence.)

Hon. Leo Housakos introduced Bill S-203, An Act respecting a federal framework on autism spectrum disorder.

(Bill read first time.)

The Hon. the Speaker: Honourable senators, when shall this bill be read the second time?

(On motion of Senator Cordy, for Senator Mercer, bill placed on the Orders of the Day for second reading two days hence.)