National Strategy for Autism Spectrum Disorders Act

An Act respecting the establishment of a National Strategy for Autism Spectrum Disorders

This bill was last introduced in the 41st Parliament, 2nd Session, which ended in August 2015.

This bill was previously introduced in the 41st Parliament, 1st Session.

Sponsor

Glenn Thibeault  NDP

Introduced as a private member’s bill. (These don’t often become law.)

Status

Outside the Order of Precedence (a private member's bill that hasn't yet won the draw that determines which private member's bills can be debated), as of June 15, 2011
(This bill did not become law.)

Summary

This is from the published bill. The Library of Parliament often publishes better independent summaries.

This enactment provides for the establishment of a national strategy for autism spectrum disorders.

Elsewhere

All sorts of information on this bill is available at LEGISinfo, an excellent resource from the Library of Parliament. You can also read the full text of the bill.

Helping Families in Need ActGovernment Orders

September 27th, 2012 / 12:10 p.m.
See context

Liberal

Kirsty Duncan Liberal Etobicoke North, ON

Mr. Speaker, I rise today to support Bill C-44, which amends the Canada Labour Code to provide an employee with the right to take leave when a child of the employee is critically ill, passes away or disappears as the result of a crime. While this bill is a step in the right direction, it does not go nearly far enough to help thousands of Canadian families, many, for example, that must face chronic conditions or diseases day in and day out for life.

Perhaps the bill does not go far enough because key questions need to be asked about our nation's children. What is the state of childhood in Canada, and does anyone care? How much do federal and provincial governments spend on children in Canada, and does anyone know? How does Canada compare to other countries, and do we have the data? Who speaks for children and ensures that every child matters? Are children asked and listened to? Do we have the right government structure and policy agenda to ensure effective advocacy for children? Has there been enough serious public and political debate in Canada on the results of two key reports: UNICEF's “Child Poverty in Perspective: An overview of child well-being in rich countries” and the OECD's “Doing Better for Children”? Do decision makers really know what it is like to be young today? Is all well with services to support children's needs? Are children's rights taken seriously? Are children valued sufficiently?

Our children are the most precious resource of any nation. Ensuring every child is able to develop her or his full potential should be everyone's concern. We need change for children. We must put children at the centre of our policy. Nurture demands political advocacy for children's best interests starting with the basics of love and care and seeing through the eyes of children. That is why we so desperately need a children's commissioner in Canada, as the member for Westmount—Ville-Marie is advocating, who is independent and can speak for the most vulnerable in society.

The United Nations Convention on the Rights of the Child is an international treaty, and governments give promises to children for protection, provision and participation through its 42 articles. Moreover, every government that signs the convention is held to account in a five-year periodic review process conducted by the UN. Canada is being reviewed right now. United Nations officials say they are concerned that vulnerable Canadian children may be falling through the cracks of a fractious federal system that lacks accountability and a clear strategy. The UN Committee on the Rights of the Child said that Canada needs to raise the bar on how it protects the rights of children, especially when it comes to aboriginal, disabled and immigrant children.

I will provide two concrete examples of conditions that affect children for life, namely autism spectrum disorder, ASD, and fetal alcohol syndrome disorder, FASD, and what might be done to help these children and their families.

ASDs are pervasive disorders which affect one person in 110. They are characterized by social and communication challenges and a pattern of repetitive behaviours and interests. ASD is lifelong, profoundly affects development and life experience and exerts immense emotional and financial pressures on families. I have worked with children with ASD my whole life. I love my children but their families often struggle to get needed therapy, struggle for schools to understand and often fight tooth and nail for the help they need. In my riding, ASD is so prevalent among the Somali community that we have two Somali autism organizations. When I attend their summer picnic, there are over 100 teenagers. Most of them are non-verbal because their families who are newcomers to Canada cannot afford the tens of thousands of dollars for therapy each year. We have single moms with two and three children with ASD.

A bill such as this one would not help these families. It would do nothing to help one of our families whose son has broken his mother's nose three times because the family could not afford treatment. It does nothing to help a young woman who has finished high school and who has waited three years at home for a spot in college. It does nothing for a young teenager who has been shuttled from one school to the next or for the single mom who must stay at home to care for him.

Why the failure to act for these families? More importantly, what would help them? First and foremost, the Minister of Health should establish, in collaboration with the provinces and territories and relevant stakeholders, a comprehensive pan-Canadian ASD strategy based on the best available evidence, including awareness and education campaigns; child, adolescent and adult intervention; and innovative funding arrangements for the purpose of financing therapy, surveillance, respite care, community initiatives and research.

I have worked with practitioners and researchers across this country to develop ASD motions 375 to 380. Bill C-219 also calls for the establishment of a national strategy for ASD.

A second concrete example of a condition that affects children for life is fetal alcohol syndrome disorder, FASD. To the child who was exposed to alcohol in utero, the mother's drinking during pregnancy can cause miscarriage, stillbirth or, worse yet, a range of lifelong disorders known as FASD. When a pregnant woman drinks alcohol, so does her unborn baby. Children with FASD might have the following behavioural problems: poor coordination, hyperactive behaviour, difficulty paying attention, poor memory, learning disabilities, poor reasoning and judgment skills.

The government should recognize that FASD is a complex biomedical and social problem and that adequate support is required for families, communities and within caregiver and education systems. Most important, it should recognize that children born with FASD should be afforded supports that will give them the best chance at a life equal to those of other Canadian citizens.

Should the government be interested in learning more about what could be done to help these children, who suffer through no fault of their own, I have worked with practitioners and researchers across this country to develop motions 343 to 350 and would ask that the government study them.

Article 12 of the United Nations Convention on the Rights of the Child states:

Children have the right to say what they think should happen, when adults are making decisions that affect them, and to have their opinions taken into account.

This means participation and not consultation. Participation means that children and young people are seriously engaged in making decisions that affect their lives. Consultation implies that adults merely ask questions and adults decide.

How many bills have children and young people participated in? Perhaps I should ask, for how many have they even been consulted? Merely asking children and young people, and ticking a box is simply not good enough. What, if any, feedback has been provided to them on how their views have been considered, let alone the impact they have had in changing policy or practice?

In closing, I wonder if children and young people are being meaningfully consulted by the government and what they would be asking for. Perhaps it is time we put the right structure in place so we can meaningfully consult.

We need federal and provincial concerted advocacy, effective advocacy, for children: a cabinet-level minister for children and young people, a cross-government policy agenda, a commissioner with clout and power, a clinical director in government responsible for children's health, and appropriate financial underpinning.

Is it not time we listened to the voice of the child in Canada?

World Autism Awareness Day ActPrivate Members' Business

June 19th, 2012 / 5:55 p.m.
See context

NDP

Matthew Kellway NDP Beaches—East York, ON

Mr. Speaker, I am pleased to rise in the House today to speak in support of Bill S-206, An Act respecting World Autism Awareness Day.

On December 18, 2007, the United Nations General Assembly, through resolution 62139, designated April 2 from 2008 on as World Autism Awareness Day. My colleague for Vancouver Kingsway has already put forward Bill C-351, which also calls upon the Government of Canada to recognize April 2 each year as World Autism Awareness Day. In a sense, this bill is playing catch-up. Nevertheless, obviously the value of such a designation is in raising awareness about the condition, the challenges faced by those living with an autism spectrum disorder and the importance of improving research, diagnosis and treatment options for this disorder.

Autism is the most common neurological disorder in children and impacts many Canadian families, with as many as one in every 110 children having some form of autism spectrum disorder. It has been estimated that there are approximately 35 million people living with autism around the world.

In Canada, although there is a lack of detailed epidemiological data, there are currently around 48,000 children and 144,000 adults with some form of autism. It is known that the rate of autism has been increasing without explanation with each passing year; in fact, it is estimated that the rate of autism has increased about 600% in the last 20 years. When one looks at this data, what becomes obvious is that autism is a widespread and growing issue about which we know very little.

What we also know is that living with it is an enormous challenge. Friends of mine, Michelle and Brett, have a beautiful daughter, Tennyson, just Tenny to friends and family. Tenny is the younger sister to Ethan and Stephanie.

Michelle, Brett, Steph and Ethan's love and devotion for Tenny is infinite, unconditional, inspiring and so very patient. The image that stays with me is one that has repeated itself many times over the years. It is of Brett and Tenny passing by my house slowly, Tenny with her headphones on, absorbed and happy in her music, and Brett happy alongside, enjoying the day in the company of his beautiful blue-eyed companion Tenny.

However, I asked Michelle and Brett to share with me, so that I could share with members, what it is like to raise Tenny. This is what they would like members to know:

“Our daughter Tennyson is 11 years old and she is one of our biggest joys. However, having an autistic child presents many challenges and stresses for our family.”

“Tennyson requires constant assistance with eating, bathing, dressing, toileting, et cetera. As if this is not enough, every stage of her life requires an almost full-time effort to navigate the system for what she needs. During her preschool years we spent countless hours and dollars on IBI therapy, as the Ontario government wait-listed Tennyson for three years.”

“Today our biggest challenge is finding appropriate schooling for her now and in the future. Today Tennyson attends a remarkable TDSB school, Beverley. Finding our way to Beverley was fraught with bureaucracy—as if we have time. We need more schools like Beverley with OT, speech and language, communication tools, and excellent staff under one roof.”

“Our imminent fear is finding a comparable high school. Oh, and what about the future? Proper care, affordable care, safety, et cetera. Families like ours have little time, money and mental energy. We need help.”

I should note for the House that those last three words, “we need help”, came to me in upper case font with more than one exclamation mark attending them.

This is the unvarnished truth of the matter. The love of a family can overcome a lot. Knowing Michelle, Brett, Steph and Ethan as I do, Tenny will never want for that in all its manifestations. However, it is our love that is also required, not just for autistic kids and adults but for the moms and dads and brothers and sisters who need our support.

While it is important to bring awareness of the impact of autism on the lives of so many Canadians, we collectively, through our government, are still failing to show measurable and meaningful support for those living with autism spectrum disorder. Instead, the government chooses symbolism over real action.

There is much that we can and should do. Through the testimony of witnesses at both Senate committees and the Standing Committee on Health of the House, we as parliamentarians have been told directly what needs to be done, or at least where we need to start.

We can start first with my colleague from Sudbury's private member's bill, Bill C-219, An Act respecting the establishment of a National Strategy for Autism Spectrum Disorders. This very simple but important bill would, among other things, establish national standards for the treatment and delivery of autism-related services and create a system to monitor autism prevalence.

My colleague from Sudbury has a second private member's bill, Bill C-218, that would also qualitatively change the lives of kids and adults with ADS as well as their families. Bill C-218, An Act to amend the Canada Health Act (Autism Spectrum Disorders), would mandate the inclusion of ABA and IBI treatments under the Canada Health Act.

These bills would go a long way to redress what Kathleen Provost, an executive director with the Autism Society of Canada, called in her testimony before the Subcommittee on Neurological Disease of the Standing Committee on Health, “a two-tiered health system for Canadians living with an ASD”.

According to Ms. Provost:

There is a health system that is inconsistent because of where you are, what province you live in. There's also a health system that's not equally accessible....We seem to have a public health system versus a private health system.

Ms. Provost cited in evidence the difference in cost of diagnosis between provinces. She also talked about the extraordinary cost of treatment, a cost so high that it was financially ruinous to the majority of Canadian families.

The multidisciplinary approach necessary for the treatment of autism is not covered currently under the Canada Health Act. However, it can cost families well in excess of $50,000 per year. Those kinds of costs inhibit, first, early diagnosis and, second, effective treatment once diagnosed. That means so many kids and so many parents are forced financially to live and struggle with a condition and in circumstances that can be ameliorated and treated.

There are other solutions as well that are readily available to us to relieve the stress, both emotional and financial, for families. These have to do with income tax treatment and amendments to labour and employment standards.

At the end of the day, what is at issue and what is absent here is federal leadership on the issue of autism.

The last word on the federal role I give to Kathleen Provost, because she captured this issue so well in her testimony to the health subcommittee. She said:

We think the federal government is in a unique position as a national facilitator engaging provinces and territories. The federal government can stage and maintain a national agenda for autism....The challenge before us is to find effective ways to leverage the strength of our federal-provincial system to advance the autism agenda in Canada so we can provide universal access to treatment and services.

I will support Bill S-206, An Act respecting World Autism Awareness Day. However, it needs to be remembered that those who need our support are already aware all too intimately, and too often painfully, of the challenges of autism spectrum disorder.

In the words of Tenny's mom, Michelle, “They need help”. Therefore, I urge the government to get on with what the Canadian government is supposed to do, which is supporting Canadians who need support.

World Autism Awareness Day ActPrivate Members' Business

February 28th, 2012 / 6:10 p.m.
See context

NDP

Christine Moore NDP Abitibi—Témiscamingue, QC

Mr. Speaker, World Autism Awareness Day is a step in the right direction, but I think other steps must follow in terms of funding and awareness.

I would like to know whether my colleague believes the two bills introduced by the hon. member for Sudbury, namely Bill C-218—which would ensure that the cost of applied behavioural analysis and intensive behavioural intervention for autistic persons is covered by the health care insurance plan of every province—and Bill C-219—which provides for the establishment of a national strategy in order to coordinate service delivery for autistic persons—are steps in the right direction to continue the work being done on this disease. I would also like to know whether he then intends to recommend to his Conservative colleagues that they support these two private member's bills.

National Strategy for Autism Spectrum Disorders ActRoutine Proceedings

June 15th, 2011 / 3:20 p.m.
See context

NDP

Glenn Thibeault NDP Sudbury, ON

moved for leave to introduce Bill C-219, An Act respecting the establishment of a National Strategy for Autism Spectrum Disorders.

Mr. Speaker, I am very proud to rise today to reintroduce a national autism strategy bill. The bill would, among other things, establish national standards for the treatment and delivery of autism-related services and create a system to monitor autism prevalence.

Roughly 1 in 200 Canadians are thought to be diagnosed with autism spectrum disorders. I was recently told the story of an individual named Mark by my colleague from Algoma—Manitoulin—Kapuskasing. Mark was born with autism. Mark fought against all odds and successfully, I am happy to say, completed two college programs and, this week, graduates from Waterloo University.

Unfortunately, people like Mark are currently the exception to the rule. I hope the swift passage of this legislation will make stories like Mark's more common in the future.

(Motions deemed adopted, bill read the first time and printed)