Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 12 - Evidence - December 7 meeting
OTTAWA, Thursday, December 7, 2006
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 10:50 a.m. to consider the inquiry on the issue of funding for the treatment of autism.
Senator Art Eggleton (Chairman) in the chair.
[English]
The Chairman: I call to order this meeting of the Standing Senate Committee on Social Affairs, Science and Technology. We continue this morning with our examination of the issues with respect to treatment and funding for autism.
We have four people at the end of the table today. First, we have a representative of the Société franco-ontarienne de l'autisme, which was created in November 2002 to work collaboratively with all interested parties, professionals, and parents of persons with autism or a pervasive development disorder, to improve the quality of life of individuals so that they may live in their community with dignity.
Amongst other aspects, the Société franco-ontarienne de l'autisme encourages excellence in the provision of services and builds public and professional awareness on the issues related to autism.
Today, Bernard Delisle is before us as the delegated representative of the Société franco-ontarienne de l'autisme. His adolescent son was diagnosed with Asperger's syndrome.
Two of the panellists today were recommended by you, members of the committee, including Anne Borbey-Schwartz, from Ottawa. She has been working in the field of autism for approximately 20 years. She began her career as a special needs worker for families of children with ASD, autism spectrum disorders. In more recent years, she worked as a senior therapist and trainer in an IBI, intensive behavioural intervention, program. Her latest employment involves supporting school personnel in their endeavours to serve children with ASD and teaching applied behavioural analysis and topics related to college students in an autism program.
Carolyn Bateman is from Prince Edward Island. You can guess who recommended she come here. She is the mother of a 24-year-old son with autism, a co-founder and past president of the Autism Society of P.E.I., co-founder and president of the Stars for Life Foundation for Autism and a recipient of the first Joan teRaa Award named after the co-founder of the Autism Society of P.E.I.
On my left is Laurel Gibbons, a mother of three with a nine-year-old son who has autism. She ran in the last election to draw attention to this issue. She believes in an amendment to the Canada Health Act to cover the cost of autism treatment. She will tell us about that today. She is a director of business development for a local Ottawa firm in the health and wellness industry.
Welcome to all four of you. We will start with Bernard Delisle.
[Translation]
Bernard Delisle, member of the Franco-Ontarian autism society: Mr. Chair, thank you for having accepted our input into your deliberations today. I am a member of the Franco-Ontarian autism society, La Société franco-ontarienne de l'autisme. Like Mr. Eggleton, I am also the father of four, including a young man who suffers from Asperger's Syndrome, which is an autism spectrum disorder.
The Société franco-ontarienne de l'autisme is a community organization made up of parents, families and caseworkers with a view to promoting the interests of Francophones who suffer from autism, and the interests of their families.
Today I would like to talk about the realities facing francophone families who live in a minority situation, including Franco-Ontarians, Fran-Saskois, Franco-Manitobans, and many others in Canada.
Their situation is very different from francophones in Quebec, who live in French every day of their lives. For us, francophones living in a minority situation, the survival of our culture and language, as well as access to appropriate, equitable services in French, is a challenge we face every day. It is never a philosophical discussion.
Two Canadian writers — Julie Barlow and Jean Benoît Nadeau from L'actualité — recently wrote that French is the other great world language. Contrary to the current trend to talk in terms of decline, it would appear that French continues to be exported, as it always has been for the past thousand years.
After English, French holds second place in terms of the number of countries where it is an official language — 33 to 45. And the number of countries that are members of La Francophonie equals the number of Commonwealth countries, with 53 members each. The number of francophones has tripled over the past 50 years and there has never been as much commercial, intellectual, cultural or industrial exchange between the various regions of La Francophonie.
There are between eight and nine million francophones in the Americas, of whom 6.8 million live in Canada, according to the 2001 Census. Ontario has half a million francophones, while Ottawa alone has over 135,000.
In light of these statistics, one wonders why it is still so difficult to obtain services in French in Ottawa for families living with an autistic child or adult. One might think that, with francophones amounting to almost 20 per cent of the population, services in French in Ottawa would be a given. This is not the case, however. And if they are not available here, and we still have difficulty obtaining services in French with such a large pool of francophones, then just imagine the situation faced by francophones in Timmins, Windsor or Toronto, areas where services in French and access to francophone professionals are virtually non-existent.
The gaps are so large for francophones that families and parents frequently agree to obtain a service in English for their child or for themselves rather than wait for a service in French, for fear that it may never be offered. I am sure you all know that such a situation contributes directly to assimilation and to the loss of cultural identity.
All the experts agree, however, that autistic children and adolescents are children at risk and thus their needs are commensurately great. It has been proven that the quality of life for autistic children can nonetheless be improved through early diagnosis and treatment, combined with subsequent support from appropriate programs and services. However, when a support program is established in Ontario to support autistic children and adults and their parents, in most cases there is a substantial discrepancy between the implementation of services in English and French. In some cases, they are not available in French at all, or if they are, in a truncated form.
I could cite, among other examples, the case of an Ontario provincial autism program, where services in French did not become fully available until six months after an English-language program had been established; where it took five years for training to be provided for families that was as comprehensive in French as it was in English; where Francophone children had to go to a centre to obtain their services whereas Anglophone families could obtain them at home. And this is just one example of many.
There are numerous reasons for this lack of service in French, and it is our belief that a national strategy would have a positive impact on some of these factors.
First, there is a drastic shortage of professionals such as psychologists, therapists and community caseworkers who are capable of providing services in French. This situation is due in large part to existing inter-provincial barriers, or to the requirements imposed by the associations that represent these professions.
Unfortunately, experience shows that it is often easier to recruit francophone professionals abroad, in Europe for example, than to attempt to obtain the services of professionals from Montreal, who claim to be interested in providing services in Ontario. This issue affects the Francophone community directly and seriously.
Another important factor is the salary gap between the service sectors, which results in job losses, under-employment, recruiting problems and a shortage of trained staff. The social services sector in Ontario, and specifically the one that serves individuals with developmental handicaps, faces an annual lack of caseworkers trained in French, with few options in terms of training in French, salaries 25 per cent lower than the health care sector and college programs put on ice because of lack of registrations.
The third important point to note, in our view, is the imbalance between the services available to autistic children and adults across Canada and their exclusion from the health care system for treatment purposes. Autism is recognized as an illness by the World Health Organization, in the 10th edition of its International Disease Classification. In addition, today there is a record of over 30 years of empirical scientific data, comprising hundreds of reports that demonstrate the effectiveness of some approaches, such as ABA and IBI.
I would like to come back to the families. Statistics show that they are the only, or the primary, source of support for almost 70 per cent of people with mental deficiencies or a developmental handicap. This figure rises to 80 per cent when the children reach adulthood.
You have also learned that the costs associated with IBI treatment for children can be as much as $60,000 a year. These costs must be borne by the parents.
A total of 458 children in Eastern Ontario, 71 of whom are Francophone, were diagnosed and referred to the Ottawa IBI program over the past six years. And these 458 children are just the ones who met the criteria of the program, which is designed to provide services to children diagnosed with the most severe spectrum of autism.
From October 2000 to June 2006, while the sum of $500,000 annually was allocated to provide funding directly to families to allow them to purchase services for their children under the Ontario Provincial Autism Treatment Program, none of these funds went to francophone families; they were shared out amongst 14 anglophone families. Not until June 2006 did two francophone families finally manage to qualify for this funding, but not without having to overcome virtually insurmountable systemic barriers and many months of backbreaking work.
Being able to communicate in French is a priority for Francophones, especially when dealing with medical specialists, as it reduces anxiety in terms of full comprehension and their ability to express their symptoms, needs and feelings clearly and accurately.
We also know that obstacles to communicating in French can result in dependency among people who suffer from a disability and who do not speak English.
In terms of services in the region, caseworkers have noted a growing number of families in crisis as a result of the lack of support and the subsequent isolation.
In addition, institutions prevent the professionals they employ from providing services privately, even though an increased number of francophone families are in great need of this, thereby reducing the pool of professionals who could work with the francophone community.
The lack of accessible, high-quality services in French is well documented. It can lead to greater limitations on participation in society for francophones living with a disability.
Now I would like to talk to you about our expectations. Leadership at the federal level is needed to advance the implementation of a national strategy to standardize health care policies pertaining to autism. We would like the federal government to recognize autism and its diagnosis and amend the Canada Health Act accordingly. The situation is urgent for families and the need for concrete action to remove autism from social services and to include it where it belongs, in a health care context, is overriding.
In order to support the families and lighten the burden, there needs to be adequate medical coverage for treatment provided by professionals and prescribed for autistic children to allow them to develop their full potential. We advocate applied behavioural analysis in light of the clear scientific evidence of its effectiveness.
Only cooperation between governments on every aspect of policies that encourage the full integration and development of autistic adults and children will provide families and individuals in our communities with the support they need. We would also like to gain recognition for the special needs of Canada's francophones, as well as the systemic deficiencies they experience, especially with respect to the drastic shortage of French-speaking professionals.
[English]
Laurel Gibbons, as an individual: Good morning, senators. Thank you for the opportunity to speak before you this morning. Although known as Laurel Gibbons, my three children best know me as "Mommy." I am here today because my son, Robbie, has autism.
On June 6, 1997, I brought into this world a baby boy and a baby girl. My husband and I were elated. Life could not have been more perfect. By the time my twins were 18 months of age, we had gone to the pediatrician on at least three occasions suspecting autism.
Robbie would rock back and forth. He would flap his hands, walk on his toes and was not speaking much, especially in comparison to his twin sister who was very talkative and interactive. He would disengage from activities with other children, preferring to be on his own. We knew there was something amiss.
Over the next two years, we repeatedly voiced our concerns to the pediatrician. Robbie's demeanour changed for the worse. When Robbie started school, it was a nightmare. At age four, he was suspended from junior kindergarten for conduct injurious to the moral tone of the school.
We were cooperative with the school and sought consultation with a psychiatrist who misdiagnosed him with ADHD, attention deficit hyperactivity disorder. It was suggested that we pursue parenting courses as we were deemed not rigid enough in our discipline. The principal even went so far as to accuse me of being a bad parent. I was devastated and the depression started.
I have since had another baby girl.
Then the rages started. My wonderful little boy would bite me. He would scratch me, spit on me, pull my hair, and kick and punch me in rages that lasted about 20 minutes and occurred several times a day. Each explosion would end with him sobbing uncontrollably in my arms. We could not understand why our beautiful son was so angry all the time. The pediatrician finally agreed that something was wrong. A rage could be brought on by something as simple as his oatmeal being too cold, or the Lego he was building not working out the way he wanted.
As it turns out, these behaviours are because he is sensory defensive and easily becomes over-stimulated by his environment. I was soon to learn that, in the autism community, these rages are known as "meltdowns." It would take too long for an assessment through CHEO, the Children's Hospital of Eastern Ontario, so we paid for a private assessment with a psychologist who has been diagnosing autism for many years. The psychologist suspected autism within a few minutes and, after a four-hour assessment, it was confirmed that Robbie was autistic.
Unfortunately, my son was almost five-and-a-half when he was finally diagnosed. As parents, we were relieved that we finally had a diagnosis. At the same time, we were completely overwhelmed when both the psychologist and the pediatric neurologist told us help was available, but not to bother to register with the preschool autism program as there was an age six cut-off and he would age out on the then 18-month-long waiting list.
Instead of using my son's health care card to access treatment, we relied on two other cards — my library card and our family Visa card. We were going to have to pay for any interventions, including ABA, applied behavioural analysis, as well as the recommended speech and occupational therapy that ran into thousands of dollars.
After refinancing our mortgage three times in the last four years, the money has run out. The speech therapy has stopped, as did the occupational therapy for his sensory issues. We agonize that we could not afford $50,000 a year for a proper program to help him. We are still doing what we can piecemeal. I worry every day that I may have to relinquish custody of him and hand him over to social services because he becomes unmanageable.
Instead of being diagnosed earlier and in a treatment program, my son's future was now at stake if we did not help him. Early diagnosis and intervention are pivotal to the best possible outcomes when it comes to treating autism, ideally before the age of three.
I am on the front lines of a daily battle with autism and it is, first and foremost, a health issue. However, like many disabilities, it is also an educational and social issue, which is why we need a national autism strategy that works synergistically between ministries and at various levels of government.
Autism is a neurobiological disorder. It is the medical community that parents consult when the well-being of our children is of concern, not a teacher or social worker. When something is amiss, we turn to the medical community for their knowledge and expertise. However, here in Ottawa, the Children's Hospital of Eastern Ontario operates the world's largest preschool autism program that is publicly financed, yet it is funded through the Ministry of Children and Youth Services, not the Ministry of Health and Long-Term Care.
The United Kingdom was faced with the same questions you are asking yourselves today as a Senate. How do we help these families and how do we pay for it? The All Party Parliamentary Group on Autism, APPGA, was established by the U.K. in February of 2000. The purpose of the group was to raise parliamentary awareness and campaign for changes in policy. They launched a manifesto with the aim of complementing Autism Europe's Charter of Rights for a Person with Autism.
The APPGA believed in a joint effort with all those involved, including NGOs, to make a reality of social inclusion and person-centred planning for those diagnosed with ASDs. They also strongly believed it was a responsibility of the government to provide leadership and sufficient support to provide consistency and service delivery.
To deliver on this vision, they set a date for 2013. In March 2003, the United Kingdom launched their national autism plan for children — Reference C. On page 72 and 73, you will find a useful flow chart indicating the identification, assessment and diagnostic process.
Recognizing the family is the child's best resource, a model with a three-part framework was developed, including the child's development needs, parenting capacity, family and environmental factors. It is my opinion that the U.K.'s national autism plan is a great starting point for a Canadian national autism plan. It could be easily replicated here in Canada. It is, however, essential that the federal government is willing to provide funding in order to implement such a strategy, as they have done in the United Kingdom.
I would like to leave you with this. To deny our children of evidence-based ABA therapy is denying them of their core health need. It is the only treatment we know of that significantly improves quality of life for them. To deny this treatment is discriminatory, period. It is critical for the federal government to take the leadership role and work with the provincial and territorial leaders to come up with a strategy to help us help our children. All citizens of Canada deserve the right to live a full life to its fullest and pursue their dreams and desires.
These are Canada's children. We need your help so that no Canadian diagnosed with autism is left behind and families are no longer torn apart. Our children deserve to be treated equally. Our Canadian children deserve better, and their future is depending on your help.
Carolyn Bateman, as an individual: Thank you for this opportunity. Families on P.E.I. are facing serious issues with regard to the lack of services and supports for children and adults with autism spectrum disorders. Families and support groups see three main issues jeopardizing our children. These issues are having a profound outcome on our children. They have left families demoralized, exhausted and, in many cases, in serious debt.
The first issue is with regard to ABA/IBI treatment. In Prince Edward Island, families receive this medically prescribed IBI treatment under a social program where they are income tested. P.E.I. has the dubious distinction of being the only province in Canada that has placed the burden of income testing this medically necessary treatment on families. Families' gross salaries are considered — not their take-home pay after taxes but their gross salaries, less any RRSPs, with a $3,000 credit for each dependent child. Families can not even deduct a dependent spouse who, in all likelihood, stayed home to take care of a child with autism and left their job. The level of support has been set at such a declining scale that IBI has become essentially a welfare program for low-income families.
Families in P.E.I. have had to mortgage and remortgage their homes to provide for their children with autism. The scale is set at a rate that even a high-income family of four trying to provide all that is needed for a child with autism would be living below the poverty line. Added to this, the province will only support 20 hours per week of a child's medically necessary 40 hours per week of treatment, leaving families to try to provide the balance on their own.
In this country, we do not provide half of the medical treatment for a child that has cancer, nor do we income test it. To have this allowed for a child who has a biological illness that happens to be called autism is incomprehensible to me.
One good thing about the disability support program in Prince Edward Island is that it does provide individualized supports to families, so they can best choose how to provide for that child with autism, but it comes with a double-edged sword. It also places the added burden on a family who not only has to care and provide 24/7 for that child with severe autism, they now also have to become employers. Families are expected to hire, train and supervise therapists on their own.
Due to Revenue Canada and provincial laws, families must remit CPP, EI, vacation pay and workers' compensation for therapists, all this out of the few support dollars they are provided. This leaves them with close to minimum wage to pay a therapist. It is impossible for a family to hire and maintain a qualified therapist. This adds to the family stress.
Waiting lists for assessments can be up to a year long, and then there is another long wait before treatment can be provided. Those children are losing valuable time they will never get back. It will have a profound effect on the child's outcome, and it will destroy what little chance they have at a life.
My second concern is speech therapy in the province. For children with autism, who by very nature have profound deficits in speech and communication, only a token amount of speech therapy is provided to a preschooler. For children in the school system, it is provided only for a few weeks a year as therapists rotate through the schools. The system is totally ineffective for a child with a profound communication disability, as is often seen in autism. This has resulted in parents trying to pay the $70-per-hour rate privately to make up for shortcomings. This is not taken into account when families are income tested to receive their support dollars for therapy. It is incomprehensible, indeed inhumane, to fund a level that will leave a child for the rest of their lives without the ability to speak or a solid, alternate communication system.
The third issue is the capping of the support dollars at a level in the province that will leave these children, when they leave the school system, with no hope for any quality of life beyond the lives of their families. This is beyond the life of ABA. It is wonderful but it will only help to a point. These children have a long life beyond that. The first of our young people with autism in P.E.I., who were successfully included in regular classrooms and were fully included in their communities, are now leaving the school system for an adult world where there are no appropriate programs or supports in the province for them to continue their education, have a job, or ever live outside their family home.
Parents wonder what will happen to their adult children once they themselves are no longer able to care for them. We have been told by the province that they will not establish or operate any more group homes. Where will these young people live? Who will care for them? Who will notice if they are sick or being abused? The latter is a terrifying concern for parents who have non-verbal children with autism who can not tell anyone when something goes wrong. When will these parents be able to retire from 24/7 care? Will parents still be caring for these children in their retirement years, in their 80s and 90s? How, at this age, are they able to continue to hire trained workers and supervise programs to provide a life for their adult children with autism? These questions are terrifying for families.
If we go by what has happened in the past to the families before us, these children will end up institutionalized in the province and even sedated. Can you imagine telling your non-disabled son or daughter that, when they finish high school, they will never have a chance to continue their education, never have a chance to hold a job, never have a chance to go to a movie, have a friend, or experience living outside their parents' home? Their only entertainment will be sitting in front of a TV for the rest of their lives and that is okay with communities.
Families in P.E.I. feel that they are now on their own to try to make up the shortfall where government has failed them. To address pressing needs, families in P.E.I. have come together and founded the Stars for Life Foundation for Autism, whose mission is to safeguard the futures of children with autism by working to provide lifelong living and learning opportunities while helping them remain fully included in their communities.
Our goals include: to provide continued education; to create activities where challenging jobs can be enjoyed, such as building a tree farm; and to build homes where aging parents will know that, when they themselves are no longer alive, their children will be living somewhere happily and safely with a sense of self-worth and belonging.
The greatest roadblock to these services for our young people with autism is the arbitrary cap placed on supports. The cap is set at $36,000 a year, and that is only for the most severely disabled in P.E.I. who require 24-hour-a-day care. It is well documented that it costs up to $100,000-plus per year for a person with severe autism who requires 24-hour-a-day supervision and supports to live outside the family home. How will families make up this shortfall?
Our foundation will do whatever it takes to build homes and provide the services necessary. We need a province willing to fund at the same level as they support funding for those who live in their own provincially run group homes. Ontario provides homes for young people with autism at Kerry's Place.
We need a federal government that will put IBI treatment under medicare to create a national disability support program of individualized funding for those with a lifelong disability.
We need national minimum standards for those who work with children in the schools. For preschoolers, there are no standards in P.E.I. An educational assistant can walk into a class on day one, never having met the child and having no training on autism.
We have a responsibility to provide meaningful lives for our vulnerable citizens. A national disability support program is in place in the U.S. I know it is possible in Canada. We need the political will.
One in every 166 Canadians is being diagnosed with autism spectrum disorders. One in every 104 are boys. Every 20 minutes, another is diagnosed with autism.
Silently, one in 166 of these children with autism has been kidnapped to suffer their symptoms for the rest of their lives without a national plan for treatment. Existing provincial government services in P.E.I. are inadequate and destroying lives.
Families are not asking government for a trip to Disney World for their children. Families are asking for a chance at life. Families do not want a child falling to the floor or screaming in pain at the sound of a vacuum cleaner. Families want a child to learn and understand how to play, to be able to accept a hug from a mother, to control the urge to flee onto the road and be hit by a car, to learn to speak so they can say "I love you" to their parents, and tell someone when they are sick or in pain. Families want older children to be independent and to feel self-worth, a sense of belonging, and know someone cares enough that they will not be sent to an institution or an inappropriate setting when their parents are not around.
No human being should be expected to live without that in this country. We beseech everybody here to change things for children with autism. Please find the political will to make a change.
Anne Borbey-Schwartz, as an individual: Honourable senators, it is my pleasure to appear today as a service provider in the field of autism.
I have not been involved in policy development. I do not have in-depth knowledge of the federal and provincial policies.
I can offer an opinion based on practical, hands-on interactions with families, children and professionals.
As you heard from my esteemed colleagues, waiting lists for treatment are lengthy, training is sparse and access to services is erratic.
For most families, the diagnosis instills a sense of urgency. In the case of autism, time is of the essence.
All indications show early intervention appears to be the key to a better, long-term outcome. For parents, access to these precious resources is marred by inevitable waiting lists.
As a consultant, I was the first professional to enter a family's home following the diagnosis.
A parent would frequently meet me with skepticism. Through months of waiting and struggling to come to terms with the situation, their trust in the system had faltered.
Some parents stopped waiting and took matters in their own hands, implementing home-based therapy and purchasing services in the private sector. Some families do not have the means.
I have seen a dramatic change in the outlook and the commitment of parents when they are joined in their efforts to support children.
The partnership of parents and professionals is crucial in understanding and supporting individuals with autism.
I have witnessed the benefits of the services provided to families with autistic children. I have seen parents take their first weekend away in 11 years, thanks to respite and case management.
I have seen children learn to speak and play, thanks to an intensive intervention program. I have observed the change in a family's dynamic when applied behaviour analysis has succeeded in curbing behaviours. I have seen a teacher reach out and embrace a child's unique needs to touch him with the gift of knowledge.
I would like to encourage continued support with autism. I will refer to the old saying that it takes a community to raise a child. The child with autism deserves no less.
[Translation]
Senator Munson: I have two questions, including one in French for Mr. Delisle.
You spoke of a lack of services in French in Ontario. Do you think the same is true for Acadians in New Brunswick?
Mr. Delisle: Yes, I would think the situation is the same throughout the francophone communities in Canada outside Quebec. It is the same thing. There may be certain services or programs in New Brunswick that do no exist in Ontario, I cannot speak on their behalf, but I know the situation is quite similar for francophone communities outside Quebec.
Senator Munson: Thank you.
[English]
You spoke about political will. It is critical the federal government takes its role. There is no national plan for treatment.
We have a document from Minister Clement. The minister cancelled his appearance before this committee. Last week he described a modest approach, a national symposium and money, and I think that is good. Minister Clement says he will send a written brief.
This issue is more than a written brief. People have come from across the country to address this issue and to ask the federal government to do more than submit a written brief.
In the United States of America yesterday, there was landmark legislation authorizing nearly $1 billion in autism funding. There was a critical statement there from Jonathan Shestack, a co-founder of Cure Autism Now in the United States.
He said, "This bill is a federal declaration of war on the epidemic of autism. It creates a congressionally mandated roadmap for a federal assault on autism, including requirements for strategic planning, budget transparency, Congressional oversight, and a substantial role for parents of children with autism in the federal decision-making process."
I am an accidental politician. I came here three years ago through another door. This issue is important. I am not playing politics. It is about a federal role. There is provincial responsibility.
It is time to change.
Ms. Gibbons: Referring back to Minister Clement's announcement, as a parent, it did not mean anything. It was like the Conservative party was treading water because the NDP and the Liberals have done a lot of work.
Over the last two years, there have been several joint press conferences involving members from all three federal parties showing their support. With the passing of Private Member's Motion M-172 from Andy Scott, we know there is a bit of support in the House to support a national strategy.
I would like to touch on Minister Clement's announcement. It was great that he said their government recognizes this is an important issue.
He added that we lack consensus on what constitutes adequate and appropriate treatment. Who lacks consensus? The parents do not lack consensus. The professionals in the community do not lack consensus. And neither does the science that shows ABA is effective.
He says we need to act now. Doing nothing is not an option. However, he also says we will work to create a research chair focusing on effective treatments.
He did not say they will establish a research chair; he said they will work toward that. They will help shape appropriate future programming and research, and launch a consultation process toward developing an autism surveillance program. He did not say they would implement a surveillance system; he said they were going to launch a consultation process. What does that mean? In real terms of taking action, it means nothing to me as a Canadian citizen and a parent.
He also continued on to say that they were listening, but I really do not think that they are hearing us. I am hopeful that at least he is putting health and autism together in the same sentence. Up until now, as you know and have learned, in every province autism responsibility falls under the jurisdiction of the ministry of social services or community and family services, not under the ministry of health. That is where the real hole is in all of this. First and foremost, it is a health issue. The federal government must work with the provinces to have them recognize and treat it as such.
Ms. Bateman: I believe it does take a political will. We see it can work in the U.K. We can see it can happen in the United States. There is no reason why the same funding and programs can not be put place in Canada, and in short order. We have seen that things can happen quickly with other issues, but there must be a political will. Someone must see it on their agenda as being of primary importance.
As Ms. Gibbons said, in studies and talking about ambiguous surveys and questions, it is well documented what the treatments are. In autism, there is not one specific treatment. It is a collection of best treatments between speech pathology, occupational therapy and ABA that all come together. The professional knows the best treatment in our arsenal to use.
As Ms. Gibbons said, we have a responsibility. Every day we do nothing, another child is lost forever. We are talking about people's lives, not golf courses. I find it impossible to believe, when you see how long this has gone on, that it is still going on. We are making progress but we must make a change today.
Senator Munson: From my perspective, I do not care who the minister is, Liberal, Conservative, NDP. Whoever it is must sit down with provincial ministers. That is extremely important.
We should also send a note back to Minister Clement to please reconsider, to come back to see us. The written brief will be fine for the moment, but I want to emphasize that people have come from across this country and taken the time to tell their stories. It is a federal responsibility to tell its story.
The Chairman: I should point out that Minister Clement was scheduled for today and, rather than attending, has sent a written submission.
Senator Callbeck: Ms. Gibbons, you talked in your presentation about the need for a national strategy and mentioned the U.K. In answering a question from Senator Munson, you mentioned Andy Scott's motion that went through the House this week backed by all parties except the Bloc, and now has four elements here — funding, national standards, surveillance and research.
Is there anything else that you would like to see?
Ms. Gibbons: Absolutely. Given time restrictions here, if you have the opportunity to look at the national autism plan for the U.K., it is basically a cradle-to-grave approach, working ministerially among levels of government — social, education and health. The terminology used within the motion was such that it would provide the foundation for the development of a strategy. Definitely, we want to look at focusing on using evidence-based treatments and promote that first and foremost, creating some standards in diagnostic procedures, and take a well-rounded approach to addressing what should go into a national strategy.
It served as a good basis, a good starting point from which to build something. By all means, it certainly would be more inclusive of other important issues.
Senator Callbeck: Have you been before a standing committee in the House of Commons on this?
Ms. Gibbons: No, I have not. I have been volunteering in a Member of Parliament's office for some time, encouraging support from the three federal parties to this end. I have not presented to a Senate committee before.
Senator Callbeck: Any other comments on what you would like to see in a national strategy?
Ms. Bateman: I am trying to put it concisely. As Ms. Gibbons said, there needs to be a cradle-to-grave approach. It is of primary importance to get ABA on the ground now. We can not leave it to the provinces.
In Alberta, families are given $45,000 a year. In Nova Scotia, there is not even a program, just a pilot study. In P.E.I., they are income tested. These are citizens of Canada, our children, and they should receive treatment equally across Canada, not by the wealth of the province itself.
We have families in P.E.I. leaving the province to go to Alberta to get treatment for their children and that should not be. It has happened more than once. Our national strategy must include everything. It must include ABA and treatment now without waiting lists, the same as a child with cancer gets treatment without question and they get it today.
With ABA we need a national policy on speech pathology, on occupational therapy, on training. In some provinces, people who work with these children are given training. I believe Ontario is mandating a minimum standard of training to work with a child in the province. In P.E.I., there is no mandate or prerequisite for who works with a child with autism and what training or qualifications they must have.
Like Ms. Gibbons said, it must be an intergovernmental effort. I do not believe it can all be federal government, but it can not be all provincial government as it seems to be right now. There must be a cradle-to-grave approach. Children come out of the school system when they are 18 years old. Children with autism do not die at an early age. How do we support them in their community?
I will give you the example of my son, considered a low-functioning young man with autism, unable to speak, unable to dress himself, needs total care for everything. He just passed a second-year university course in international business. That is possible but not because the government gave it to him; it was possible because families worked hard and ensured it happened. Not all families are in a position to do that. These are the things that are possible. That was for a child about whom we were told by professionals 24 years ago — take him home and love him, he will never learn and he can not do anything.
A lot can happen for these children. They have a right to quality of life and not be stuck in some institution where they are waiting for a Friday night beer as their only entertainment. It is not right. It must change.
[Translation]
Mr. Delisle: I believe we could mention a professional training program in Canada. There is a shortage of professionals for anglophones, but for francophones the shortage is even worse. There are not enough autism professionals in Canada.
In Ontario, there may be enough, but across the country, I am certain there are not enough. We need a program to standardize services so that professionals from one province could provide a service in another province. There should not be inter-provincial barriers preventing a francophone in another province from providing help in Ontario, for example. This just adds to everything else that has been mentioned so far.
[English]
Senator Callbeck: I have one other question and it is on the income tax system. My understanding is that it is not possible to deduct on your income tax return any services required by someone with autism.
Ms. Gibbons: Some of the speech and occupational therapy can be claimed as medical expenses when referred by a physician. However, any interventions in terms of ABA/IBI are not deemed to be classified as a medical treatment because the government does not recognize it as such. I find it interesting that the Minister of Health, when he ran for premier of Ontario, acknowledged the deficits within Ontario in the preschool autism program. At least he recognizes that it is health. That does play a role in there somewhere. Until that changes, we can not claim legally for expenses when they pertain to interventions based on behavioural intervention such as ABA. My pediatric neurologist and psychiatrist recommended vitamin supplementation that was costing us $300 per month. Even though I had letters from the doctors supporting that the supplements improved his quality of life, I was not able to claim those on my health care insurance plan. There is a lot to be considered because of the diagnosis of autism. Many things could be reworked to improve the taxation system to make it more fair.
Senator Keon: Our job is to come up with a plan that is good enough that government can not say no to it. In my own rather lengthy professional life, which is in the other dimension, I found that if the plans and the applications were good, they were never turned down. They were turned down if they were not good enough, but if they were good enough, they never got turned down. It did not matter where it went, to what level of government, or who was in office or anything else.
That is what we have to try to do for you. The problem, as I understand after listening to you in your various roles on this tremendous subject, is knowing just what your core recommendations are. For example, this morning you seemed preoccupied with the health dimension of autism. I do not know whether that means you are satisfied with the educational dimension and the social infrastructure dimension. When we first looked at autism with the mental health committee, we came to the conclusion that it needed some kind of special study because it was too broad to obtain adequate support out of health care alone.
Here we are. The problem for health services is that you are not listed as an essential service. In Canada, health services boil down to being listed as an essential service, and then it is paid for by the provincial governments. If it is not listed as an essential service, then it is not paid for, and that is where autism sits. I believe strongly that the wrong way is to tamper with the Canada Health Act, which could lead us down a blind alley for 10 years or so, ending up fundamentally nowhere. What is needed is to get the essential treatment for autism listed as an essential service. We have to begin to focus now. We have heard from a number of people and we have to start thinking about the focus of our report.
I would like all four of you to respond to this as to what kind of plan or strategic initiative is necessary. Who has to come into the room — health, education, social services or something broader? What dimensions are necessary to get out of that conundrum?
Ms. Gibbons: Again, I refer back to what the U.K. has done, having been faced with a similar situation six years ago. I do not necessarily want to recommend all-party parliamentary committees and drag this out for years and years. However, it might be a clear necessity to pave the path in getting it right the first time.
The U.K. has taken an approach whereby, upon the identification of the problem and an initial assessment, they take a multi-agency assessment approach referred to in the plan as an MAA. They involve the health community and, depending on the age of the child, the educational community, and maybe social workers if the dynamics of the family structure are compromised. They take a multi-agency approach to it. That would work well in Canada.
First and foremost, it is health and I do not think anyone would question that. The treatment should follow the child, though, through to the education system. We know that this is educational, it is social, it is even a justice issue later on when they are teens if outside activities are misinterpreted by peace officers within the community who do not recognize autism.
That kind of approach would serve Canadians with autism well. The different age groups — from birth to four years, it deals primarily with the health community; from four to six years, it becomes more of the educational component, all the while working with social services. As the child progresses and goes into youth and adolescence, there might be a need for more emphasis on community involvement and services external to school. Then it segues into the next, all the while in cooperation with the various ministries to ensure that that individual's needs, both physical and mental, are being met by creating programs conducive to promoting a quality of life.
On the multi-agency assessment, pages 72 and 73 of Reference C that I gave this morning, show a flow chart of exactly how they do it and the allotted time frames in which those things should happen. From the MAA assessment, it goes through to the creation of a family care plan. It takes into consideration the entire family. This is not just about the individual with autism because it affects the entire family, including the siblings; it is terribly hard on them as well.
From that, the family care plan is produced, while keeping all the ministries involved within the community. They have a kind of manager, if you will, who looks at spearheading the program development for a particular case.
The Chairman: I would like to ask you about research. Tomorrow we will have a round table involving some leading researchers from across the country, which is another perspective for the consideration of the committee. We have your views and perspectives, in particular as parents.
Could someone comment on research and where you think it might be adequately addressed or otherwise at this time?
Ms. Gibbons: I will comment on the research. I also sit on the board of directors for Autism Speaks Canada. Autism Speaks in the U.S. recently merged with Cure Autism Now in the States. Research is a critical component in all of this but it is by no means a reason for us not to take action immediately. We have treatment that works to the point where 47 per cent of children who receive early intervention that is appropriate, such as ABA therapy, will be indistinguishable from their peers. Many other children in that 53 per cent still benefit from treatment but to what degree is not well documented. They do benefit significantly from continued treatment.
For those remaining children, where maybe ABA did not work so well, it is critical for us to look at why does it not work, what needs to be done to ensure we can best help alleviate some of the negative symptoms of the disorder so that they can function to their full potential?
We have some of the best researchers in the country right now currently working, but the federal government needs to definitely step up to the plate to provide more funding into that critical research. In the combatting autism bill that was passed in the United States, $900 million, almost $1 billion is going into autism, and a lot of that funding will also go into the research component of it.
It is an area that needs to be addressed. We have some of the world's best scientists right here at our fingertips to work on this.
The Chairman: A lot of them will be here tomorrow. From a parent's perspective, is there anything any of you think we should be asking them about? Is there anything we should be particularly focusing on in terms of either areas that are being done well, or areas that are being neglected in terms of autism research?
Ms. Bateman: The thing that comes to my mind is not necessarily autism research. I was at the Geneva Centre for Autism International Symposium recently where Dr. Margaret Bauman spoke. She is one of the world's foremost researchers with autism and families are bringing young people to her.
They showed children and adults who have profound behavioural issues. In one case, they showed a young girl who never slept. She would scream if you laid her down. She had scars on her hands and face from self-injurious behaviour. That researcher, knowing that you can not put all autism behaviour down just to autism, sent those families to a gastroenterologist to find that those children were suffering from severe oesophageal ulcers. A lot of these children have medical conditions that are not being recognized in the medical community.
If you are given a diagnosis with autism, everything that happens to that child is being put down to autism — from children with severe diarrhea for their whole life and not being medically treated because it is just happens with autism. That is an issue that really needs to be addressed in the country. In some cases, I do not think these children are getting the medical treatment they need.
Ms. Gibbons: Can I refer back to the research component? There seems to be a lot of focus on it purely being genetics. With a lot of parents I have met, there is no trace of autism on either side of the family, which begs the question to be asked — is this really genetically linked and is the causal effect of it solely from genes?
I do not think our genes mutate at the kind of rate that we see this incidence rise. There may be a genetic predisposition, but I believe there is an environmental trigger of some kind. I think this is an area that should be more closely looked at to help identify perhaps a connection there.
Senator Munson: Maybe you did not have a chance to answer when Senator Keon said governments move when there is a work plan in front of them — and he talked about autism listed as an essential service. Would that be one way to go through this door, at least at the beginning, if that was a recommendation?
I know the whole idea of opening up the Canada Health Act but I would like to get a definitive answer from any of you. Would having autism listed as an essential service be one route to walk through this door?
Ms. Borbey-Schwartz: Being that I am not very familiar with the act, I would hate to pronounce myself but I do feel it is important that we take a stand. Whatever the decision leads to, we need to become engaged actively in serving these children. It has to become national, as opposed to provincial.
This would lead to better education, better quality of service, diversity of service. I think that making the service essential is a step in the right direction.
Senator Munson: If it is listed, there is money.
Ms. Bateman: In the end, from the family's perspective, families do not care how government does it, as long as it gets done. Whatever loopholes or hoops have to be jumped through to make it happen expeditiously and properly, that is what needs to happen.
Senator Nancy Ruth: Panel after panel, Senator Keon asked this question about essential services versus changing the Canada Health Act and you have just said, "We do not care, get it done."
It has made me wonder whether people appearing before us actually understand what an essential service is, in terms of funding. Do you know what Senator Keon was talking about?
Ms. Bateman: As far as parents go, no, we do not.
Ms. Gibbons: I can speak to that. The Canada Health Act basically stipulates to the provinces what are deemed core health needs — respiratory, bleeding, dying. The provinces have control over what they consider to be non-core; whereas some provinces provide chiropractic services, the next one may not.
The big hole in all of this is that not one province recognizes, as the World Health Organization does, that autism is a health issue. That is where the missing key is to this. If we can get the provinces to agree that this really is a health issue, we should be able to have parents use their health care card when they suspect their child has autism. If they need tests for identifying gastro ulcers, it should be done. We should not be left to our own devices to find those things out.
The Canada Health Act can not be amended until we actually have a validated treatment that is recognized as a health treatment for autism — and it is. Autism treatment is an autistic person's core health need and they are being denied that currently. In the provinces, it does not even register under non-essential health needs because it is not a health issue. Until that changes and we get over that hurdle, I do not think we will move forward in any direction.
First, the Canada Health Act could be amended and the autism treatment, ABA therapy, is what we need to go with because that is the only one with the science to back it. The Canada Health Act can be amended and the guidelines included, but not until there is a national strategy that recognizes that autism treatment, under the auspices of health, exists. Maybe that helps a little bit.
Senator Fairbairn: Just listening to all of you — and we are all learners in this committee — this is a difficult issue to understand if you have not been involved in it. A simple question from me and I will start first by asking Ms. Gibbons — when someone tells you this is not a health issue, on what grounds do they make that statement?
Ms. Gibbons: I do not have an answer to that because it is not recognized within the medical community. Doctors are trained only to a certain extent to even recognize it. There are no standards for diagnosing autism. There are no criteria for pediatricians or those in the health community to learn the early warning signs and whatnot.
It behooves me to understand how the world's largest, publicly funded, preschool autism program takes place in this very city, but yet it is financed through the Ministry of Community and Social Services and not health.
Also included in our References is a 2004 report from the Auditor General of Ontario that stipulates when funding for autism treatment is subcontracted, if contracted in other ways, we could be treating essentially almost three children for the same price by subcontracting it. Why that is, I do not have a clear answer for you.
Senator Fairbairn: When this became evident with your son, where were you told to go after you went to your doctor?
Ms. Gibbons: We literally were given the names of books from the neurologist and the psychiatrist because they said: Do not bother with the wait list for the preschool autism program. You are not going to make it. You are going to age out and it is not available to you; it is not an option. Here are the names of a couple of good books. Start a private ABA program. Get it going on your own if you have to at first until you can hire a consultant. Start some speech and occupational therapy. You will have to finance it yourselves. Here is a prescription for an antipsychotic to decrease the aggression. Pat on the back, and we will see you in six months.
That was our experience as a family. Both my husband and I have been treated for depression in trying to deal with how this could be happening in Canada. How could he be denied access to the proven therapy that we know could help him be successful? It is unbelievable.
Parents are not feeling tired, like Minister Clement stated last week. We are not feeling exhausted. Damn it, we are exhausted and we are tired. We are worried. We are scared for the future of our children and what that holds for them.
It does not make sense that we do not deal with this as a health issue, that treatment does not follow the child throughout the system as they progress through life, and that the proper supports are not in place for them.
I do not think Canada has much of a choice. This should be done. The fact they are being denied access to treatment that can help them be their full potential persons is unconstitutional in this country.
The federal government is saying this is provincial. We have health-heart strategies, a cancer strategy, a diabetes strategy. We ratified the United Nations Convention on the Rights of the Child in 1991. Article 23 pertains to children with disabilities. Boy, have we lost or missed the mark on that one. It just does not end.
Clearly, we need to take action from a good, well-rounded approach, taking into consideration the dynamics of this wonderful country with the francophone population.
Child care is a whole other issue. It is bad enough trying to find child care for your healthy child. Try finding one with special needs. It does not exist.
Ms. Bateman: Try to find it with special needs when they are adults because they are not cute little kids any more. It is becoming increasingly difficult for families to maintain them in their homes. The older they get, the harder it gets. It is not easier. There are less and less supports and fewer services.
Senator Fairbairn: Thank you.
The Chairman: Thank you very much, all four of you, for your time today and input into our consideration of this matter. It has been valuable.
The committee adjourned.