To whom it may concern,
My name is Adam, and I am the founder of It's Medically Necessary, a grassroots movement of parents, caregivers, organizations, and professionals who believe that autism therapy should be declared medically necessary under the terms of the Canada Health Act, with adequate funding for treatments. I have written this letter to document our group's position on the Ontario Autism Program (OAP) changes and how we feel a more cost-effective solution could be implemented.
Our position is based on the desire for a needs-based solution that has emerged as an overarching theme since the changes to the OAP were announced on February 6, 2019, with additional details that have to the best of our knowledge not been widely discussed or presented. Much of our position is documented in the form of an email that has been sent to the Minister previously. As of the time of this letter, I have not received a response to said email.
For the sake of brevity, I will not reattach the contents to this email. However, I do encourage you to read this email to familiarize yourself with our position, as I will be referencing several key points from the email here:
We also have a change.org petition with over 4,000 signatures supporting our cause here:
As we understand it, the intent of the tele town halls, round tables, and other consultations is to determine the desire for a needs-based component among other issues. However, there doesn't appear to be an opportunity to provide a blueprint for delivery of such a component, nor is there an opportunity to address the issues of cost certainty and accountability that the current government quite understandably views as an issue of high importance. This letter is intended to address both of these issues. Some of the ideas contained within will require an upfront investment; however, if implemented correctly, both long-term savings and increased treatment efficacy will be realized.
Again, for the sake of brevity much of the blueprint below is presented through an ABA-specific lens; however, it can be applied to other needs associated with autism, such as speech-language pathology, occupational therapy, and physiotherapy.
Part 1: Diagnosis and Treatment Plan
The diagnosis itself may be where much of the problem lies with the existing OAP, as a diagnosis is quite often based entirely on the interactions between a child and a pediatrician/other professional, as well as anecdotal evidence provided by parents and caregivers. In many cases, a diagnosis is provided within 30-60 minutes.
This method does not provide an objective measure in and of itself, nor does it provide any data points or objective evidence that can be used to develop an adequate treatment plan.In order to gather such data, caregivers are often required to research and find professionals that can provide the tests and develop treatment plans based on those tests; while tools such as the vetted OAP Provider List presently being developed by Autism Ontario may help in this regard, such tools are not available at the present time. The efficacy of the treatment plans and tests as it stands currently depends solely on caregivers' capacity to select the appropriate professionals and said professionals' ability to implement tests and plans.
In order to eliminate bias and increase accountability, we recommend that objective tests such as ABLLS-R, ASQ-3, or other appropriate testing measures be utilized by diagnostic testing professionals. In additional, professionals may be employed by an OAP provider; however, they may not administer therapy themselves, nor may they make any specific recommendations of professionals who may be able to administer therapy. In addition, diagnostic testing professionals should provide a general treatment plan for a period not exceeding one calendar year based on the results of the aforementioned tests, and where appropriate referrals to professionals in other areas for testing and treatment plans.
Ideally, such a treatment plan would include both goals for developmental milestones as well as a calculation of hours.
Upon request, a diagnostic testing professional should ensure that copies of said tests and treatment are sent to caregivers, to the appropriate Ministry in charge of handling the autism file (hereafter referred to as "the Ministry"), and to the vetted OAP provider of the caregivers' choice, at such time as the vetted list is available. In the short term, diagnostic testing professionals should refer caregivers to Autism Ontario as per the present OAP guidelines.
The implementation of proper, objective diagnostic testing and the provision of a therapy plan will provide both cost certainty and accountability, particularly if the government utilizes standard rates as is the case with most medical professionals under OHIP. A clear plan would be established both in terms of therapies provided and associated costs, and it would be easy for both caregivers and the Ministry to understand.
It would also assist caregivers who lack the capacity to determine their own treatment plans and/or evaluate professionals; caregivers would simply present the treatment plan and diagnosis and therapy could begin as soon as possible. This would be of particular benefit to marginalized and underserved communities.
In the event that a caregiver, vetted OAP provider, and/or the Ministry (referred to here as "The Objector") disagrees with the findings contained within the diagnosis, an objective appeal process would be formulated as follows:
- The Objector and the diagnostic testing professional could discuss the discrepancies within the diagnosis and/or treatment plan and reach an agreement to a modified diagnosis and/or treatment plan.
- The Objector and diagnostic testing professional could present their arguments in arbitration to a neutral clinical professional, who can then make an objective decision. The professional could rule in favour of the Objector, the professional, or could come up with a "middle ground" solution.
Any appeals are to be based solely on clinical need and not on finances.
Part 2: Annual Review/Additional Diagnosis
Another significant weakness of all of the implementations of the OAP is that there no objective measure that the Ministry possesses to determine whether or not a child has improved from year to year, nor is there a mechanism to provide a revised treatment/behaviour plan based on said diagnosis. Each year (or appropriate time period), an objective review/additional diagnosis should be done as needed based on the terms in part 1. In order to avoid bias, the results of the original diagnosis should not be provided to the diagnostic testing professional for comparative purposes until the retest has been completed.
Results could be compared at that point, and if necessary a revised treatment plan could be generated at this point.
This would the government objective aggregate data over the course of time that would help determine the quality of providers, the efficacy of both treatments in general and based on specific criteria e.g. age, gender, provider, and region. The longer this aggregate data is collected, the more effective that it will be in terms of decision making for caregivers, providers, and government alike. It is recommended that such data could be utilized collaboratively with other Ministries in other provinces to provide larger and more comprehensive datasets.
Part 3: Collaboration with Other Ministries
This would likely require more medium/long term planning, but part of the diagnosis could potentially include recommendations for Special Services at Home/other community services that aren't necessarily related to therapy (e.g. recreational services, opportunities for mainstream socialization), as well as recommendations for schools pertaining to accommodation/alternative learning. Caregivers could take the latter recommendation list into the school of their choice and initiate the IPRC/IEP process immediately, if it has not already taken place; if such a process has already taken place, then the recommendations could immediately be incorporated into the IEP.
The incorporation of school recommendations in particular would deal with two significant ongoing issues within the autism community as it pertains to schools:
- School safety, for autistic children, neurotypical children, and staff alike. A clear documentation of recommendations based on issues such as flight risk and aggression would enable schools to implement accommodations within the IEP and reduce injury and other damage risks.
- Parents' rights under Ontario Regulation 181.98 and Policy/Program Memorandum (PPM) 140. Schools and school boards quite often neglect to inform parents of their rights under Regulation 181.98 and PPM140. In some cases, this is by omission due to a lack of understanding of these two pieces of legislation, and in some cases this is by commission due to the demand to adhere to a special education budget that is often insufficient to meet the needs of special education students in general.
Whether it is by omission or commission, the result remains the same. Parents are unaware of their legal rights and are placed in the position of having to advocate for their children without necessarily knowing that they have said rights, which in turn often leads to the educational needs of autistic children not being met. As a result, autistic children deprived of their right to equal education opportunities. As is the case with Part 1, this is a particular concern for marginalized and underserved communities.
Part 4: Ongoing Feedback
The tele town halls, round table discussions, and online surveys are useful tools; however, these tools only seem to be employed during times of crises of public perception and when major changes are either about to be or have just been announced. Ideally, these tools would be used on a regular basis to provide feedback on the present implementation of the program and any potential changes to the program made prior to their announcements.At the very least, these tools should be used annually; ideally, they would be used semi-annually and/or prior to the implementation of the aforementioned changes.
In the case of tele town halls, it may also be a good idea to split the town halls up among the major regions. This would give more people the opportunity to provide feedback, as well as allowing for feedback that is specific to a region that has unique issues associated with it (e.g. the Northern region). Provisions could also be made for French-language and/or Indigenous communities as well.
The feedback mechanisms would be provided by an arms length, third party provider as they are now. Surveys and town halls would consist of both objective and subjective, politically non-partisan questions.
We would encourage discussion on the process that we have laid out above. If there are any enhancements or adjustments to be made that enhance our blueprint and/or lead to more rapid implementation, we would be more than happy to discuss them further.