The Parent's Original Email
Please note that the parent's identity has been removed as per his/her request. Link titles were also added to ensure that said links would fit on a mobile device. Other contents have been published verbatim, and with the parent's permission as said parent is a supporter of the It's Medically Necessary campaign.
Dear Federal Minister of Health,
I am writing to you as a parent of a child with autism who is concerned about the incorrect statements of yours in response to a petition that was posted on the Parliament website today. In your response you provide an outline of your reasoning as to why autism treatment (Applied Behaviour Analysis or "ABA") is not covered by Medicare and could not be in the future. Unfortunately, the facts that you state are incorrect. Regrettably, your argument is invalid. You state that ABA treatment is not offered by hospitals or physicians. In fact, for the past twenty years the Children's Hospital of Eastern Ontario (CHEO), which is just a 15 minute car ride from your offices, has been delivering the treatment for the past twenty years. Unfortunately, they do not do so pursuant any administration by the Ministry of Health and paid for by Medicare, but as a "regional service provider" on contract to the Ministry of Community and Social Services. As such, there is a deceptive game of "musical ministries" which is designed to ensure that Canadians with autism cannot obtain treatment with their health cards. The autism community urges you to revisit this matter and become a champion for Medicare and the treatment of autism.
The petition in question was tabled on May 17 and your response was tabled today (August 21) at the following site:
House of Commons Petition
The part that you wrote which I consider most regrettable comes at the end of your response:
"The Canada Health Act (CHA) requires that medically necessary hospital and physician services be covered by provincial and territorial health care insurance plans. The Act does not specify diseases or conditions. Any service provided by a physician or in a hospital that is considered to be medically necessary in the treatment of a disease or condition should be covered by the provincial and territorial health care insurance plans. Other health care services provided outside hospitals and by non-physicians, such as Applied Behaviour Analysis and supports for individuals with ASD, are outside the scope of the CHA. For these services, it is up to the provincial and territorial governments to determine whether to cover them, and if so, how, either under their health care plans or under separately funded programs. The federal government continues to support this approach, which is respectful of provincial and territorial jurisdiction in health. There are no plans to amend the CHA to include treatment of specific diseases or conditions."
Your statement that ABA is provided "outside hospitals" is simply not true. The facts that you base your argument on are not correct. Why do you insist on continuing to ignore reality and truth and propagate this myth that has been used as an excuse for two decades to deny families like mine the right to obtain medically necessary healthcare services for my autistic son under Medicare (OHIP in Ontario).
The Ontario government inherited a terrible Ontario Autism Program from the previous government with unconscionably long waiting lists. It promptly proceeded to change the program in a way that has been largely perceived as making it worse. As a result parents and families in Ontario have been forced into unprecedented protests and advocacy, pleading for the government to be more responsible. However, the fundamental problem at the core of all these "access to treatment" disastrous situations is that in practically all of the provinces ABA treatment for autism is not covered by Medicare.
The medical and scientific community have known since the 1980s is the only evidence-based treatment for autism, and as such, constitutes the core healthcare need of any child diagnosed with autism (until a better treatment or a cure is discovered). Yet, most provinces, like Ontario, have their autism treatment programs delivered by ministries of "social services" which have neither the expertise nor the resources" to do a proper job. In Ontario, every time there is a new Minister and new Government, they constantly tinker with the programs, either cutting budgets or introducing age cut-offs, etc. There is no stability or consistency in the programs and they don't benefit from the federal Canada Health Transfer or any payments from the federal government under any "Health Accords".
The recent Ontario government changes to the funding model involved transferring funds from the regional service providers to the families so they could pay directly in the private sector market. As a result, CHEO actually posted their fees that they now charge parents for their services. They cumulatively work out to over $150,000 a year!!! Please see the media articles about it at the following links.
Please also note that autism has been a disorder recognized for many years is the diagnostic manual of the American Psychiatric Association. The DSM manual is the bible for the medical community. Doctors routinely prescribe psychological services as part of the treatment of the various disorders. Why should prescriptions for ABA treatment for autism not be covered by Medicare? Why should certified behaviour analysts not be recognized as professionals within the healthcare system?
This lack of Medicare coverage is a real serious issue for our community. Please do not look for excuses and reasons to perpetuate this discrimination in Canada's healthcare system. While the petition called for the amendment of the CHA, there are other ways to rectify this situation without resorting to legislative amendments. What we need is a Minister with the vision and energy and determination that Minister Monique Begin displayed in the 1980s when she plugged the holes in Medicare and put it on a stronger foundation by passing the CHA. What we would like you to do is the same thing that you did in the development of your National Dementia Strategy, and it does not require a Bill. Would you please consider calling a meeting with your provincial counterparts, and negotiate, using all the incentives that the federal government has (and you have many, most notably the giving or withholding of tax dollars), the inclusion of ABA autism treatment under Medicare coverage pursuant to national service standards. Our community needs autism treatment to be itself treated with the appropriate respect, professionalism and stability that the Department of Health, healthcare bureaucrats and Medicare can provide, rather than the constant upheavals we've been subjected to over the years by the ministry of social services in Ontario where it is treated like a ping pong ball.
Many people in our community are struggling in unimaginable ways on a daily basis and the provincial governments are letting us down across the board in all the lifespan issues. My own son is severely autistic and non-verbal. He will need care 24/7 for the rest of his life. He recently turned 18 and we placed him on a waiting list for placement in a group home here in Ottawa. We were told that the average waiting time in this capital city is 10 years! Many people are calling for the federal government to develop a National Autism Strategy. I support this. However, the core and principal component of such a strategy must be the undertaking to get Medicare coverage for ABA autism treatment. Anything else will simply be perpetuating a catastrophic situation which is simply unconscionable discrimination. Please help our community.
Public Health Agency of Canada Response / Stance on Autism Therapy
This response was issued September 24, 2019.
I am responding to your correspondence of August 21, 2019, addressed to the Honourable Ginette Petitpas Taylor, Minister of Health, regarding her response to a petition on autism spectrum disorder (ASD). She has asked me to reply on her behalf, and I welcome the opportunity to do so.
Further to the information provided to you via email on August 26, 2019, I would note that although the federal government plays a role in supporting health care by providing funding to the provinces and territories, the provincial and territorial governments have primary jurisdiction in the administration and delivery of healthcare services. Although evidence based behaviour services are provided through the CHEO Autism Program, not all services provided in hospitals have been determined to be medically necessary health services and therefore may not be covered by provincial/territorial healthcare insurance. It is the provinces and territories that determine which health services are necessary and which are components of behavioural interventions or social supports. If you have not already done so, I would encourage you to contact the Ontario Ministry of Child and Youth Services to learn more about the supports and services that are available for children with ASD through the Ontario Autism Program (OAP). Information about the OAP can be found online at Ontario Autism Program.
Respite services are also an important resource for parents. The Government of Ontario funds respite programs for families of children with a disability. If you would like more information on these programs, you can find it online at: Respite Care. Moreover, you may wish to visit the online database, respiteservices.com, which provides information on respite care supports and services throughout Ontario.
It is a tremendous undertaking for parents to provide care and to advocate for their children’s needs. I hope you find this additional information helpful in addressing your concerns. Thank you again for writing.
Vice-President, Health Promotion and Chronic Disease Prevention Branch
Public Health Agency of Canada
The Parent's Response
The parent issued a response a few hours later.
Thank you Ms. Romano for your message and response on behalf of your Minister of Health.
I'm not sure that my initial objection to what the government tabled in response to a petition from a desperate parent of a child with autism was understood. The response of the government included the following sentence:
" Other health care services provided outside hospitals and by non-physicians, such as Applied Behaviour Analysis and supports for individuals with ASD, are outside the scope of the CHA."
The clear message was that ABA treatment for autism is provided outside hospitals and therefore outside the scope of the CHA. My point was that that characterization of ABA as being something that had nothing to do with hospitals was clearly false. The proof was a short drive from the Minister's office (if she had bothered to inquire) at the Children's Hospital of Eastern Ontario.
Now your response provides a new argument from the government: ABA for autism treatment is not "determined to be medically necessary health services" and therefore does not need to be covered by Medicare.
As a parent of a child who was diagnosed at CHEO and who was immediately referred by the specialist to the CHEO autism treatment program (as managed by the Ministry of Social Services) I find the suggestion that ABA is not medically necessary to be absurd. Until the cure or a more effective treatment is found, ABA is the core health care need of children diagnosed with autism.
In the U.S. more and more states are passing laws mandating ABA treatment to be covered by health insurance. But in Canada, our (glorious?) public health insurance system leaves us in the dust. Shame. Please see this link for a snap shot of Autism Speaks in the U.S. discusses the issue of medical insurance coverage for "medically necessary" autism treatment.
Here is another reference to "medically necessary" autism treatment in NY state.
Does this mean that the U.S. healthcare system beats Canada's Medicare hands down when it come to autism treatment? It would appear so.
My colleagues and I will be organizing a press conference and rally on Parliament Hill to denounce this ongoing discrimination in Medicare and false reasoning and shameful treatment of this matter by the political and bureaucratic authorities in this country. Please feel free to join us.
It's Medically Necessary agrees wholeheartedly with this parent and is sorely disappointed in the email sent by Anna Romano from the Public Health Agency of Canada. Adam has independently written a series of Tweets in response to a similar answer published in the Huffington Post from the provincial Ministry of Health; this stance is demonstrably false, and it is irresponsible for both the federal and provincial government health ministries to continue to propagate this stance in the face of undisputable evidence to the contrary.