By Beverley Sharpe, ASAT Board Member
Andrew Kavchak is a retired federal civil servant who lives in Ottawa, Canada, with his wife and two sons. Andrew’s younger son was diagnosed with autism in December 2003, and his name was placed on a waiting list for ABA treatment. At that time, Andrew discovered that Canada’s public health insurance system (Medicare) did not cover the cost of autism treatment. The Preschool Autism Program in Ontario which offered ABA autism treatment at the time was administered by the Ministry of Social Services. It was then that Andrew began lobbying provincial and federal politicians to extend Medicare coverage to include autism treatment. After almost two decades of political agitation, Andrew has written a book titled The Fight For Autism Treatment in Canada – Reflections Of A Parent Activist, which chronicles the lengthy battle for a meaningful “National Autism Strategy.” The book, the first of its kind in Canada, is available on Amazon.
Beverley: It is an honour and a pleasure to interview you as we have been friends for almost 20 years. Can you share a little bit about yourself with our readers? What was your life like before autism became a part of it?
Andrew: I was born ages ago in Montreal. I studied political science and law. I joined the federal civil service after being called to the Bar. I spent my career “doing public policy.” I got married and had two boys. The older one is typically developing and doing well in University. The younger one was diagnosed with autism when he was two years old.
My older boy’s youth was typical for a young boy. Besides school he played hockey and took music lessons. He played bass in a number of bands. He also loved playing games and participated in over 100 chess tournaments when he was younger. He won the provincial chess championship in his age category when he was six. He brought a lot of joy to our family.
Our younger boy seemed more reserved. After he was diagnosed with autism, my wife and I applied to the Ontario Preschool Autism Program for ABA treatment. Unfortunately, they had an unconscionably long waiting list and could not give us any idea of when our son would get access to treatment. They advised us to resort to the private sector to help him develop to his full potential. We had no choice but to set up a home-based ABA program in 2004. Unfortunately, it was hard. There were fewer qualified people in the business in Ottawa back then. We did not have much choice among consultants and we could not find any experienced therapists. We had to hire inexperienced ones and train them. Managing the program was challenging as we had frequent turnover of therapists. Over the span of a few years, we used the services of three program consultants. Our son’s progress was modest as he is severely affected by autism. He is now in the “autism unit” at a local public high school.
Beverley: Thank you for sharing this history. Sadly, many parents have had the same journey trying to secure qualified providers and even having to train them. Your background in political science and law prepared you very well for your book! Why did you decide to write: The Fight for Autism Treatment in Canada – Reflections of a Parent Activist?
Andrew: I’m a record keeper. When I started lobbying I kept a record of relevant events. I also blogged on the FEAT BC website (featbc.org) “government issues” discussion board. When my son was diagnosed, I quickly came to realize that there were huge public policy problems when it came to autism. The treatment programs that were offered by the provinces across Canada were typically offered by departments of social services and not by the departments of health. Although Canada was supposed to have a universal public health insurance system, Medicare, it did not extend to the coverage of ABA treatment for autism.
When I first started lobbying there were a number of events that came together and created a degree of “momentum” which I thought would lead to a breakthrough in public policy. There was a huge court case, which you, Beverley, were involved in, called “Auton,” which went to the Supreme Court of Canada in 2004. Unfortunately, we did not get the result we needed to get Medicare coverage for autism treatment. The subsequent political lobbying resulted in petitions, motions and bills being tabled in Parliament. More and more the issue of access to autism treatment seemed to be on the political agenda as we organized rallies and protests and got media coverage. Then there was a Senate committee that studied the issue of funding for autism treatment and issued a report with recommendations in 2007. And then…nothing. The federal government ignored it all. I used to protest on Parliament Hill during my lunch hour and tried to speak with politicians and journalists as they walked by. It certainly raised awareness. But then I stopped. The momentum ran out of gas and the election of a government that was not interested made it feel like a new dark age had descended on Ottawa.
However, over the past few years, there have been a number of new initiatives that have resulted in a higher profile for autism and a new sense of momentum. At the provincial level in Ontario, a new government announced some autism treatment program changes in February 2019, which immediately generated a tremendous backlash from the autism community. The government had announced a redistribution of resources among the 8,000 families who were getting treatment services and the 24,000 who were on the waiting list. The result was that no family would obtain enough financial assistance to buy more than a fraction of the treatment that their child needed. There has been an unprecedented degree of political demonstrations and agitation across the province over the past year, and it is continuing as the government is taking an excessive amount of time to “review” their programs. At the federal level, following the recent election, the Prime Minister gave the federal Minister of Health a “mandate letter” which includes the marching orders to work towards “the creation of a National Autism Strategy.” However, at this point in time, there is no clear understanding of what the government has in mind with respect to such a strategy, and while the autism community advocates are all excited about the prospect, there is no consensus yet as to what the pillars of such a strategy should be.
I wrote this book now to document the history of the struggle for autism treatment in Canada and to help empower the current and future generations of autism parents with an important chronology, insights, and lessons learned. It is my hope that this background will help them in future political lobbying. Every time the government proposes to do something, it is useful to know what happened last time the same thing, or something similar, was tried.
Beverley: As a fellow Canadian who has a child with autism, I have advocated to have autism treatment covered by Medicare. Why are you so passionate about autism advocacy?
Andrew: The fact is that ABA autism treatment works. It is science-based and the majority of children with autism benefit from such treatment. Recently, I communicated with three separate parents that I had met many years ago. Back then they told me about how, at the time of their diagnosis, each of their children was non-verbal and one of them was also self-injurious. All three kids received ABA treatment. One just graduated from university in engineering, another is in university studying computer science, and the third is in college studying creative writing. All three parents credit the success of their children’s development to ABA. These are not isolated cases. Multiple replicative studies since the ground-breaking 1987 study by Prof. Ivar Lovaas have provided the data and evidence of ABA’s effectiveness in treating autism. How can one not acknowledge and be supportive of such treatment?
Years ago, I attended a lecture where I heard a very successful businessman say that there are three kinds of people on the planet: (1) those that make things happen, (2) those that watch things happen, and (3) those that haven’t got a clue what’s happening. Generally speaking, I fall into the second category. However, when we encountered the waiting lists for treatment, I felt I had no choice but to get politically active and agitate. There are a lot of other things I would rather do with my limited time on this planet, but I would never forgive myself if I had not tried to do something to improve access to treatment for kids with autism in Canada when I had a chance (and had more youthful energy).
Beverley: We are so glad you put yourself in the first group. You have been lobbying for 20 years; why do you think the Canadian government is so resistant to covering autism treatment?
Andrew: That is the big question. Why? The situation has several facets which may appear complicated, but they are not really. We live in a federal state and whenever it is convenient, one level of government will either insist that the subject matter is their exclusive jurisdiction, or that it is the responsibility of the other level of government. The fact is that none of the provinces, which administer the public health insurance systems across the country, does a good job when it comes to autism. In my book I outline the stories of the challenges faced by families in almost every province with long wait lists and discriminatory age-based cut-offs from services. What many advocates like me have maintained for many years is that the federal government should use its financial transfer payments and negotiated health accords to leverage this key and influential role in Canada’s Medicare system to bring about the inclusion of autism treatment under Medicare from coast to coast. Consecutive Liberal and Conservative federal governments have avoided the matter by claiming that the issue is entirely of “provincial” concern. However, in my book I catalogue a lengthy list of federal government initiatives to engage in health-related and specific illness-related strategies and programs. Most recently one of the higher-profile strategies the government adopted related to a National Dementia Strategy. In that case the government actually passed legislation first which obligated it to meet with the provinces to develop a strategy. The government’s budget then allocated millions in funding before the strategy was even made public. Why would going through such a process for dementia be a natural thing to do while the mere suggestion of a similar process for autism generates avoidance behaviour? In the end, I believe the opposition to autism is based on a lack of understanding of what is going on and a lack of political will. However, that may change and we have to be hopeful that some future politicians may be enlightened and have the corresponding political will to do the right thing.
Beverley: Andrew, there have been several Autism Awareness Day speeches and rallies in Canada. Autism Awareness Day always gets a lot of press coverage. Have these events changed anything for children with autism in Canada? If not, why not?
Andrew: Historically, the charitable tax rules have prevented charities from engaging in political lobbying. As a result, they often preferred to resort to “awareness” and “public education.” In 2008 the UN adopted the “World Autism Awareness Day” (WAAD) as being April 2 of every year. In Canada the federal government passed a law to declare the same day as being autism awareness day in Canada. I have attended a number of these awareness rallies that have been organized on Parliament Hill on these days over the years. I always find them tremendously disappointing and a source of frustration. Although they present a great opportunity to discuss the gap between the public services and the needs of the community and call for action to address the gap, most of the politicians and speakers at these events just deliver “feel good” speeches which are totally devoid of any public policy content. The way they have been handled so far, I don’t believe they raise any meaningful awareness in the broader community. Most people who don’t know anything about autism and come to these events in Ottawa will typically still not know much about autism afterwards.
Some of the speakers I’ve seen and heard are very high-functioning people on the spectrum. They never talk about the needs of those on the low-functioning end of the spectrum who can’t speak for themselves. These high-functioning people whom I’ve seen at the autism awareness rallies never talk about ABA treatment and the need for Medicare coverage to help the families avoid going bankrupt in the private sector. I’ve heard them talk about how they wished they were not bullied at school. Unfortunately, bullying is a universal problem and not specific to autism. I wish being a victim of bullying was my younger son’s only problem. These awareness rallies have great potential. I just have not seen them come close yet. But I’m hopeful. The messages delivered at these awareness events may improve with time.
Beverley: Andrew, with all of the rallies and speeches you have attended, would you let our readers know just how many autism organizations are in Canada , and if they help you lobby?
Andrew: There are many autism organizations in Canada. Some engage in lobbying and others don’t, for a variety of reasons. One of the problems with some charity-type organizations is that the historic tax laws affect their financing and prevent them from engaging in political activities. Furthermore, many of them get grants or contracts from the governments. As a result, they are unlikely to confront the government with any straight-talk on the community’s behalf, or at least on behalf of those on the waiting lists. Such organizations don’t want to bite the hands that feed them. That’s understandable. But under such circumstances, such organizations should not, in my opinion, describe themselves as “the voice of the autism community.” Nor should they be the ones who are front and centre whenever the government engages in consultations. Years ago, the Ontario government issued a press release about some small changes to some autism programs and quoted an official from one such organization as saying that Ontario was now on track to becoming an “international leader” in autism programs. That was obviously a tremendous exaggeration, and I am not sure how that helped our community’s lobbying efforts. It is really frustrating when politicians are questioned about their inadequate autism policies, and they respond by quoting supportive endorsements from some autism organizations. However, there are some not-for-profit organizations that attempt to stay clear of any conflicts of interest and who do speak up in ways that are occasionally refreshing. The truth is sometimes unpleasant, but someone has to call a spade a spade from time to time.
Beverley: The Canadian Charter of Rights and Freedoms guarantees no discrimination. What is your view on how this mandate applies to individuals with autism?
Andrew: Canada’s constitution was famously repatriated in 1982 and a Canadian “Bill of Rights” was entrenched which included an equality provision. However, while the government maintains a public health insurance system that is supposed to provide every Canadian with their core healthcare needs, it simultaneously insists that the Medicare system does not extend to autism treatment. That is discrimination. The federal Minister of Health recently responded to a petition by saying that medically covered services are those that are provided by hospitals and doctors, and autism treatment was provided by neither. I wrote to the Minister and her deputy to ask that she stop perpetuating this disinformation and get her chauffeur to drive her over to the Children’s Hospital of Eastern Ontario (CHEO) which is only about 15 minutes away from her office. CHEO has been delivering autism treatment since 2000 (20 years!) on behalf of the Ministry of Social Services and the service is not covered by Medicare. Instead of being administered as a medically-necessary health program, it is administered as a social service like welfare. The result is that every change in provincial minister and government results in the autism program being subjected to endless and repetitive changes as the government tries to manipulate the program to reduce its deficits, etc.
Beverley: Where do you go from here? What are your next steps for lobbying for autism treatment in Canada? What should be in a National Autism Strategy?
Andrew: From my perspective, the primary goal is to get Medicare coverage for autism treatment. The federal Minister of Health is supposed to be working on the development of a “National Autism Strategy.” This provides the autism community with a great opportunity to deliver the message to the Minister about what our kids need and what we want. Unfortunately, if you scan the public declarations of different organizations, there are many alternative ideas and proposals out there. Consensus and unity on anything are difficult to achieve in Canada. It is particularly challenging in the autism community.
There is no question that people with autism, particularly those who are severely affected by the disorder, need help at every stage of their lives (lifespan issues of housing, employment, etc.). However, governments never do everything in one shot, and if they try, they typically won’t do a good job. I believe that we have to prioritize first things first, and then work on the second wave of priorities. Initially, from a cost-benefit perspective, the access to autism treatment under Medicare issue has to be a core pillar of any meaningful government strategy. In my opinion the federal government should convene a meeting with the provinces, put some money and whatever other incentives are necessary on the table, and negotiate the inclusion of autism treatment under Medicare from coast to coast with a corresponding funding formula and national service standards. A similar approach should then be used for housing. When my son turned 18 we placed him on a waiting list for placement in a group home. We were told that in the nation’s capital city the average waiting time is between 7 and 10 years. Unbelievable.
Beverley: Wow – long wait lists, lack of access to treatment, and lack of funding for autism treatment. What message would you like to give the leaders in Canada about autism treatment?
Andrew: We need action now. The government has previously dodged the issue as if it was toxic. Now there is a risk that the initiative to create a National Autism Strategy will unleash a lengthy process of endless “consultations” which risks becoming the ends, rather than the means to the ends. The federal government should use its experience with the development of the national dementia strategy as a model. Convene a meeting with the provinces and negotiate the inclusion of autism treatment in Medicare.
Beverley: What message would you like to give to parents of autistic children in Canada?
Andrew: First, with respect to your own children, do whatever you can to ensure they get treatment and have a chance to develop to their full potential. Educate yourself about the history of autism public policy in this country. Read my book The Fight For Autism Treatment In Canada – Reflections Of A Parent Activist. It has a lot of background information that will be useful for the next generation of parents. Then join the community of activists. We live in a liberal democracy and have the right to ask for equal treatment before the law and in Medicare.
Beverley: Looking back, what would you do differently? What are some lessons learned?
Andrew: This is a tough question. There’s no question that we learned a lot over the years. However, the real problem in setting up our son’s home-based treatment program in 2004 was the lack of qualified professionals in the field. Many were full and not taking on new clients. We had to hire inexperienced therapists and train them. We had no choice. It was a less than optimal situation. However, today when one looks at the directories, it seems there are many more professionals in the business. It seems that today parents who can afford to provide treatment for their children in the private sector have a lot more choice. Thus, I don’t think we would have done anything differently, but we would have more choice today and hopefully more experienced therapists who could work with our child. Regarding the lobbying and advocacy, I’m proud of what my colleagues and I have done in the past. Somebody had to do it. However, Medicare still discriminates and does not cover autism treatment in Canada. The new generation of parents will have to carry on with the lobbying efforts until justice is done.
Beverley: Thank you Andrew for shedding light on the significant inequities faced Canadian children with autism. You shared your story with compassion and detail and point to a remedy for this injustice: Canada clearly needs a National Autism Strategy which includes Medicare for autism.
Citation for this article:
Sharpe, B. (2020). An interview with Andrew Kavchak, father and advocate. Science in Autism Treatment 17(3).