Last month, Lisa MacLeod, Ontario Minister of Children, Community and Social Services (MCCSS), announced sweeping changes to the provincial autism program. These changes were met with outrage from parents, health care professionals, educators, and autism advocacy groups, culminating with the resignation in protest of a Ford staffer — who was the former head of the Ontario Autism Coalition and a parent of a child with autism.
These changes affect a subset of Ontarians in ways that many may not fully be able to grasp. With April being Autism Acceptance Month and U of T accepting a $25-million donation for establishing the Leong Centre of Healthy Children, now is an important time to discuss how changes to the Ontario Autism Program will affect patients and families.
Defining and managing Autism Spectrum Disorder
According to the latest edition of the Diagnostic and Statistical Manual of Mental Disorders, Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder characterized by “persistent deficits in social communication and interaction,” as well as “restricted, repetitive patterns of behaviour, interests, or activites.”
Individuals with ASD present in a variety of ways. Some may only require help learning complex language skills and particularly nuanced social situations, while others may need more comprehensive training to develop basic language and life skills, as well as deal with challenging and potentially dangerous behaviours, including running away from home, food refusal, and aggression toward themselves and others. Due to this variability in presentation, each individual with ASD is affected differently, and programming must be personalized to their unique strengths and weaknesses.
Intensive Behavioural Intervention (IBI) is a high-intensity application of the principles of the gold standard therapy for ASD: Applied Behavioural Analysis. IBI involves up to 40 hours of one-on-one therapy per week for at least two years, and is generally recognized by published literature and by the Board Certified Behaviour Analyst guidelines as achieving favourable results.
The Ontario Autism Program
Currently, treatment for ASD is primarily managed through the Ontario Autism Program (OAP). Children under 18 are admitted into the program and assessed by an experienced analyst. This assessment determines the amount of funding they require to receive the best possible treatment to address their needs, which may cost up to $100,000 per year.
This cost is covered entirely by the Ontario government, allowing all enrolled children, regardless of income or age, to access effective treatment with the goal of learning to manage behaviour, enhance communication, and participate effectively in schools and communities.
The OAP’s biggest flaw is undoubtedly its massive waitlist. IBI is demanding in terms of time and funding, although economic analyses show that providing effective and early IBI to a greater number of children actually saves money in the long term. However, it is not feasible under current funding levels to provide effective IBI to every single child diagnosed with autism beginning at the time of their diagnosis. This leads to waiting periods that can last over two years, according to Amy Fee, Parliamentary Assistant to the MCCSS. Recent statements by MacLeod claim that over 8,000 children are receiving IBI through the OAP while 23,000 are still on the waitlist, a number the Ford government is accused of inflating by instructing regional providers to covertly stop accepting waitlisted families.
Changes to the program
Blaming financial constraints, the Ford government’s priority shifted to eliminating the waitlist. Over the next two years, the amount allocated for autism programs in the annual budget will remain at $321 million, but coverage will be rationed between all 31,000 children who are either waitlisted or currently receiving full therapy.
Funding will be awarded to children based on age and family income, with clients receiving up to $20,000 per year until the age of six, followed by $5,000 per year between the ages of six and 18. Families with a household income exceeding $250,000 won’t receive any funding at all.
While earlier treatment is correlated with more effective outcomes, scaling funding with age has been criticized due to the highly variable nature of the disorder. For example, a more neurotypical child at age five could be less functionally impaired than a 10-year-old farther along the spectrum.
However, since March 21, the Ford government announced a number of concessions for which details are still unclear, with MacLeod announcing that she would take the next few months to deliberate further. These updates included removal of the consideration of household family income in determining funding maximums; additional funding for children with autism to access speech language pathology, occupational therapy, and physiotherapy; increasing the total budget allocation to a minimum of $600 million; and committing to additional needs-based funding, without any further numerical or logistical details.
Despite MacLeod’s alleged threats to the Ontario Association of Behaviour Analysis warning the organization against disagreeing with the changes, pushback against the policy from groups across the board as been immense. The OAP revamp has been met with protests and criticism by parents, therapists, and self-advocacy groups. Many parents are saying that despite the unfairness and deep flaws of the previous system, they would rather wait for a full, intensive course of therapy than try to make do with what the government is providing. A significant number of families are being forced to choose between paying differences in cost that can amount to multiple times the Ontario median income, which may involve selling family property and depriving their child of effective therapy.
In response to backlash, the Ford government announced that it would be providing school boards with an average of $12,300 per child with autism enrolled in school, to help train teachers and ensure there are additional supports available. However this was not a new announcement — according to an August 2018 announcement by the provincial government, school boards will receive $12,300 for any student enrolled in school, regardless of their diagnoses or educational needs. Other significantly smaller funds in addition to the standard $12,300 are available for students with special needs in Ontario, but MacLeod’s announcement was deliberately misleading. The push for earlier integration of children with ASD into Ontario schools is particularly ominous when set against the backdrop of significant cuts to education, which will increase class sizes and reduce staffing at Ontario schools.
The broad impact of the changes
No amount of deception by the Ford government can hide the fact that all children, especially those with more severe autism coming from families with lower incomes, will be affected by the sweeping changes to the OAP and the education system as a whole. The ripple effects of these changes should be of concern to all of us. Anyone, from high school students soon joining U of T to mature student parents unable to afford both tuition and appropriate childcare, could be affected. It is up to us to join with all of them and advocate for evidence-based solutions to the needs of some of the most vulnerable citizens of this province.
Imaan Javeed is an MD student in the Faculty of Medicine. The author would like to acknowledge Kristin Bain, a Senior Therapist at AlphaBee, an intervention centre specializing in IBI and other behavioural analytic therapies.