Dear Minister MacLeod,
My name is Adam, and I am a resident of Stoney Creek. I am also the father of a 5-year-old boy who was diagnosed with moderate autism. My son entered the Ontario Autism Program (OAP) on July 18, 2017, and is one of the "waitlist children" that you've repeatedly referenced in your recent changes to the OAP. As of this time, my son is in an unusual situation in that he is "in the program", but not yet receiving service of any sort. We did an intake meeting with our family support worker at Ron Joyce on November 9, 2018, and we finalized our family support plan on January 29, 2019, just before the changes were announced.
You've heard several stories from caregivers who quite justifiably feel as though they have been shortchanged by the OAP changes, as their children require more therapy than the new funding model will provide. Since my son is considered "moderate", his therapy needs are not as intensive as those of a severely or profoundly autistic child; however, he is one of the children who has been shortchanged as well. I do believe that this wasn't the intent, as I am aware that you and Amy Fee have advocated for autistic children in the past. I believe that the intent was simply an attempt in good faith on your part to make maximum use of an inadequate budget that is in large part due to a legal misclassification, and the attempt has fallen far short of the intended result.
There are some things that I'd like to point out that you may or may not be aware of, and by bringing these things to your attention you will be able to advocate for the autistic community in your role as MCCSS Minister, find additional monies to augment the budget for these services, and most importantly provide more cost-effective and efficacious services for autistic children. I have also CCed Monique Taylor and my local MPP (Paul Miller) in the hopes that you can engage in a productive dialogue with regard to these items.
ABA Therapy as a Medically Necessary Service / Funding Models
By comparing ourselves to other areas of the world, we will see that the plan for the OAP is woefully underfunded and that ABA therapy funding has not been assigned to the correct department (i.e. MCCSS).
As a nation, Canada likes to compare itself to the United States in terms of health care. We generally believe that we are the superior nation in this regard due to our adoption of universal health care. However, most states have legislation mandating that autism coverage be included as part of their health insurance at coverage levels far exceeding the levels proposed in the new OAP Childhood Budget. A link can be found below outlining the laws for each state, and I'll pull out a few highlights from here:
First, I'd like to draw your attention to Missouri Statute #376.2224.
I've pulled out and highlighted the relevant parts of the statute in bold for the sake of convenience:
(13) "Treatment for autism spectrum disorders", care prescribed or ordered for an individual diagnosed with an autism spectrum disorder by a licensed physician or licensed psychologist, including equipment medically necessary for such care, pursuant to the powers granted under such licensed physician's or licensed psychologist's license, including, but not limited to:
(a) Psychiatric care;
(b) Psychological care;
(c) Habilitative or rehabilitative care, including applied behavior analysis therapy;
(d) Therapeutic care;
(e) Pharmacy care.
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4. (1) Coverage provided under this section is limited to medically necessary treatment that is ordered by the insured's treating licensed physician or licensed psychologist, pursuant to the powers granted under such licensed physician's or licensed psychologist's license, in accordance with a treatment plan.
(2) The treatment plan, upon request by the health benefit plan or health carrier, shall include all elements necessary for the health benefit plan or health carrier to pay claims. Such elements include, but are not limited to, a diagnosis, proposed treatment by type, frequency and duration of treatment, and goals.
*** *** *** ***
5. Coverage provided under this section for applied behavior analysis shall be subject to a maximum benefit of forty thousand dollars per calendar year for individuals through eighteen years of age. Such maximum benefit limit may be exceeded, upon prior approval by the health benefit plan, if the provision of applied behavior analysis services beyond the maximum limit is medically necessary for such individual. Payments made by a health carrier on behalf of a covered individual for any care, treatment, intervention, service or item, the provision of which was for the treatment of a health condition unrelated to the covered individual's autism spectrum disorder, shall not be applied toward any maximum benefit established under this subsection. Any coverage required under this section, other than the coverage for applied behavior analysis, shall not be subject to the age and dollar limitations described in this subsection.
6. The maximum benefit limitation for applied behavior analysis described in subsection 5 of this section shall be adjusted by the health carrier at least triennially for inflation to reflect the aggregate increase in the general price level as measured by the Consumer Price Index for All Urban Consumers for the United States, or its successor index, as defined and officially published by the United States Department of Labor, or its successor agency. Beginning January 1, 2012, and annually thereafter, the current value of the maximum benefit limitation for applied behavior analysis coverage adjusted for inflation in accordance with this subsection shall be calculated by the director of the department of insurance, financial institutions and professional registration. The director shall furnish the calculated value to the secretary of state, who shall publish such value in the Missouri Register as soon after each January first as practicable, but it shall otherwise be exempt from the provisions of section 536.021.
To cover the last part of the law first, the current maximum benefit limitation as adjusted for inflation is $45,853 USD:
Depending on the exchange rate in a particular day, this equates to approximately $60,750 CAD. There is also no adjustment for age. This also represents the approximate level of funding for one year of ABA for approximately 22 hours/week in Ontario. By comparison, the proposed OAP plan per child illustrates a significant deficit in funding, especially since no proviso for inflation appears to have been included.
I'd also like to point out that the statute referenced the phrase "medically necessary" on multiple occasions. This will be relevant later on.
Second, I'd like to draw your attention to Louisiana 2012 Act 208, in which the oddly similar $144,000 lifetime maximum benefit was stricken from legislation. Louisiana does offer a lower annual maximum figure of $36,000 (a fairly common figure as cited in the ncsl.org site), but one that nevertheless further illustrates the aforementioned funding deficit.
The removal of the $144,000 lifetime maximum benefit, which bears a certain similarity to the Childhood Budget both in concept and amount, would indicate an apparent shortcoming of the figure. Please note that the lowest/only lifetime maximum benefits are offered by the states of Florida and Mexico, both of whom offer up to $200,000 maximum coverage at $36,000 per year. The total coverage at $200,000 USD = $262,000, which is still almost twice as much as the Childhood Budget in the absolute best case scenario (i.e. if a child is diagnosed and receives funding by the age of two, which won't apply to most children including my own child).
The state of Kentucky has updated their legislation as of 2018, something that has not been reflected on the ncsl.org website as of yet. Until last year, Kentucky's funding levels were among the "worst", particularly from the ages of 7 and up.
House Bill 218 was passed in 2018, and within the bill provisions are contained that have stricken the funding caps on the record:
The state has replaced it with this line:
Coverage under this section shall not be subject to any maximum annual benefit limit, including any limits on the number of visits an individual may make to an 18 autism services provider.
Other States that Consider Autism Therapies to be "Medically Necessary"
The following is a list of states in addition to Missouri that consider autism therapies in general, and in at least some cases ABA therapy specifically, to be "medically necessary".
- New Jersey
- West Virginia
Autism services are covered under the NHS (National Health Service).
The UK has also developed a "Long Term Plan", including a section pertaining to autism (although they tend to associate it with a learning disability, which I personally don't care for):
Within that section, a reference to a Personal Health Budget (PHB) is made. The budget is an amount that is not means tested and is agreed upon between the NHS and an eligible patient or said patient's representative. The PHB is close in concept to Special Services at Home in Ontario and somewhat similar in concept to the OAP in that a customized plan can be created and agreed to that is not means tested, so we as a province have the ability to adopt the model in the interim.
The Importance of the Phrase "Medically Necessary"
I'm certain that you're aware of this, but it bears mentioning so I will do so here. The purpose of the Canada Health Act is to ensure that all medically necessary procedures are covered.
Canada does not have a single national health care plan, but rather a national health insurance program, which is achieved by a series of thirteen interlocking provincial and territorial health insurance plans, all of which share certain common features and basic standards of coverage. Under the Canada Health Act, our national health insurance program is designed to ensure that all residents of Canada have reasonable access to medically necessary hospital and physician services on a prepaid basis, and on uniform terms and conditions.
If multiple states within the United States of America consider autism therapies in general and ABA therapy in particular to be medically necessary, then there is no valid reason whatsoever why Canada as a nation and Ontario as a province should believe otherwise. We are supposed to have the superior health care system, and on this particular issue we fall well short both in terms of dollar amounts and interpretation. We do not have reasonable access to medically necessary services on uniform terms and conditions.
Unfortunately, you've inherited a budget and a problem that shouldn't strictly be within the MCCSS purview; although there are social aspects to autism and other similar conditions, autism is a mental health issue and should fall at least primarily under the purview of Ministry of Health and Long-Term Care (MOHLTC). Perhaps MOHTLC and MCCSS work together; or perhaps MOHTLC handles this portion entirely on its own and it is removed from your purview. In either case, the entirety of both the finances and the OAP itself should not be your responsibility, nor should it have been the responsibility of your predecessors in similar roles.
How You Can Use Your Role as Minister to Act as an Advocate
The "medically necessary" argument is your opportunity to advocate on behalf of autistic children and acquire additional funding to make up for the shortfall. Since this should be covered under the Canada Health Act and by extension OHIP, there is both a need and an opportunity for augmented funding in the form of Canada Health Transfer monies to Ontario and to other provinces. I don't know whether said advocacy would include cooperation from Minister Elliott, ministers with similar portfolios in other provinces, related advocacy groups, school boards, professionals, caregivers, and/or other interested individuals. I do know, however, that you will receive much greater support across the board for ensuring that autism therapies are correctly classified as a healthcare issue than you are right now, including support from those right now who you find yourself at odds with. For example, I have run this argument by various professionals and other members and professionals within Autism Ontario, as my family are members of the Hamilton chapter; I have also run this argument by caregivers of neurotypical children who will be indirectly affected by these changes. I have received unanimous support for this argument and have been encouraged to write to you. (Please rest assured that these are my own words and thoughts and that my research is independent.)
I am aware that this is an argument that will take some time and there are financial, healthcare, and political ramifications to it. I'm also aware that 2019 is a federal election year. I would also suggest that because of all of these things, this is precisely the time to present the argument. I intend to contact the major federal parties at some point soon in order for them to have sufficient time to include federal funding of autism therapies as a platform plank; however, I'd like for you to have the opportunity to present the argument before I do in order for you to benefit from its implementation. As long as the children benefit from the changes that need to be made, whoever receives the credit for said changes is of no importance to me personally.
What to do in the Interim
Since this will take some time, I would suggest one of two things as interim solutions and utilizing OHIP funding and/or other monies available from MOHTLC to at least partly address shortfalls until such time as the federal government is made aware of its responsibility and acts accordingly:
1) Implementing something similar to the UK PHB (i.e. removal of the means testing) under the proviso that caregivers are given a legitimate opportunity to receive funding tailored to their children's needs provided that their requests are supported by professionals and that it is isn't "set up to deny families", or;
2) Continuing with the OAP more or less as it was functioning prior to the changes announced in February. There are issues with the OAP that should be addressed, but the model itself is not the issue.
Maximizing Available Funds
I think that we can agree that it's not strictly about the amount of money that is allocated, but how we as caregivers, professionals, and MCCSS can use the money as effectively as we can. The ministry obviously has a vested interest in ensuring as such, as do the caregivers; after all, we want to see our children improve as rapidly and cost-effectively as possible. The more improvement we see, the more cost-effective the treatment becomes, particularly over the long term.
The key to maximizing cost effectiveness lies with associated agencies and regional providers. I'm going to draw your attention to one particularly inadequate regional provider in order to demonstrate the issue, along with several other agencies and providers that can serve as role models.
Inadequate Regional Provider: (redacted)
Excellent Provider: Ron Joyce Centre
We moved to Stoney Creek in September of 2018, which means that at present Ron Joyce Centre is our regional service provider. Ron Joyce and (redacted provider) are like night and day. The seminars are much better organized and contain far more useful information. The Family Night run by Autism Ontario that caters to caregivers, siblings, and autistic children is far better organized and justifiably more popular than the (redacted provider) parents' groups. The monthly consultations for specific behaviours are useful, albeit limited by the fact that they're strictly consultative and not meant as a substitute for therapy.
I have had only one issue with Ron Joyce, and unlike (redacted provider) they make legitimate and reasonable attempts to solve those issues. For example, I noticed that the waitlist progress had slowed down when I called in regularly. Ron Joyce held themselves accountable, and asked that I report the issue to MCCSS. I did so, and within a matter of weeks several new BCBAs were hired in order to facilitate better and timelier access to service. I don't necessarily believe that my call solved the issue by itself, but I firmly believe that when they're confronted with an issue Ron Joyce will make every reasonable effort to solve it.
Ron Joyce has also offered a Pivotal Response Training seminar along with two in-home visits from clinicians that was remarkably helpful and eye-opening. My wife and I picked up several tips from these seminars that have reduced my son's aggressive behaviour and allowed us to deal with his generalization issues. Offering a seminar such as this is both a low-cost and cost-effective way to reach several caregivers in a short time period, and seminars of this quality should be replicated as often as is reasonably possible.
Take a long, hard look at how Ron Joyce operates. Look at the seminars. Look at the Family Night. Look at the consultations. Speak to the professionals that work there. Once you get a solid grasp of their operation, hold the other providers to the Ron Joyce standard at a minimum; if another regional provider is operating at a higher standard, then hold the other regional providers to that standard. It would be incredibly myopic of MCCSS to eliminate a quality service provider such as Ron Joyce because of an inadequate budget and/or an ASD misclassification.
Employees Deserving of Recognition
The following employees within Ron Joyce deserve particular praise for the work that they do and their passion for it. To be perfectly honest, I've probably forgotten some people in here as everyone I've dealt with at Ron Joyce has been nothing but outstanding:
- Amy Phillips, clinical leader
- Dana Lehman, family support worker
- Faye Harper / Lisa Havercroft / Miriam Kim / Wendy Burke, BCBAs / clinicians
Other Agencies / Individuals Deserving of Recognition
There are other agencies and individuals deserving of recognition for the good work that they do. They want what's best for the children, and by extension will do anything possible to maximize their benefit and lower costs. Many of the cost efficiencies that you seek can be found by examining how these agencies and people conduct themselves, although unfortunately there is no way to quantify their contributions.
Talk to these people. Learn from them. By engaging in dialogues with them, you will gain insight and perspective to make more informed and more effective budget decisions while having a base of individuals and organizations that serve as role models that illustrate how service should optimally be delivered.
Elizabeth Mitchell, Autism Ontario
Everyone at Autism Ontario does fantastic work, but in particular I'd like to draw attention to Elizabeth Mitchell, family support coordinator for Hamilton/Niagara Region. Liz has forgotten more about ASD than most of us will ever know, and her wealth of knowledge and experience is invaluable. She knows what works, and she knows what doesn't…more specifically, that the new OAP doesn't.
Lisa Ram, Karen Ritch, and Sue Taggart, Community Living Mississauga
Community Living Mississauga is another group that needs to be mentioned here. They did everything in their power to help my son. They connected us with resources both public and private that did a great deal to help my son, and they do a terrific job of helping parents navigate a complex system.
Nicole Martin McCarthy, New Heights Learning
Nicole owns and operates New Heights Learning, a private ABA provider in Hamilton. She and her staff operate her facility in a way that goes above and beyond to assist the children in her care. If there's a DFO role model private agency, New Heights is the agency.
Ellie Voets-Sterling and Sophie Girard, MCCSS London Office
I wanted to include these two employees from your London office because both have helped me at various points; Ellie in particular is a tremendous asset to your Ministry and I genuinely believe that the concerns I bring to her attention both on my own behalf and those of others are taken seriously and that she wants to assist in any way that she can.
Open, Two-Way Communication
It would be much more financially effective and far less stressful for all parties concerned if you as a Minister and MCCSS in general communicated transparently with caregivers, with regard to changes to the OAP before you intend to implement them. Lay out your intended changes upfront in a way that we can all see it and offer feedback before problems arise, as opposed to exposing the changes to a select few individuals and binding them to non-disclosure agreements prior to the announcement. We as caregivers are going to find out about pending changes anyway, and quite often before announcements are made; there is nothing whatsoever to be gained from secrecy.
Work collaboratively with caregivers and professionals who have our children's best interests at heart as opposed to unilaterally. Listen and implement that which is reasonable. Let us provide feedback at regular intervals (e.g. semi-annual surveys) to keep the OAP on track. Not everything is going to be reasonable, and I can certainly understand that not everything can be implemented; however, there are ideas that are out there that can easily be implemented and it simply requires an adjustment in process. Most of us are willing to work with you, but we need to know that you're willing to work with us in turn.
You won't be able to please everyone, but you now have the opportunity to please far more people, be more fiscally responsible, and position Ontario as a leader in terms of effective autism treatment based on the above. Deem autism therapies medically necessary and/or demand that the federal government does so as our friends in various US states have shown is feasible; utilize OHIP and Canada Health Transfer funding to cover any shortfalls so that MCCSS isn't financially liable; and work as much as reasonably possible in a collaborative manner with those of us who are most affected by these changes and you'll largely find the answer that you require. If not, I am prepared to escalate these issues as needed; I would greatly prefer not to do so, but I will do whatever is necessary to ensure that those who have been unfairly negatively impacted by these changes receive the services that they are entitled to and I will not do so alone.
I am willing to discuss this and certain other issues that are associated with the OAP with you. Please feel free to call me and we can proceed from there. Thank you very much for your time, and I look forward to hearing from you at your earliest convenience.