Ontario Parents of Autistics
We are parents who are interested in having real CHOICE for our autistic children’s supports and therapies.
On December 7th, the Ontario Government announced an update to the Ontario Autism Program stating that parents now have more choice: ABA or ABA. Please call in to one of the Tele Town Halls to tell the Minister that we want CHOICE in services for our children!
Position Statement: The Ontario Autism Program
We are a group of Ontario parents of autistic children and young adults advocating for reform to Ontario’s approach to autism funding and services. We are demanding that CHOICE in supports, services, and interventions be available to support the diverse needs of our children for their education and development throughout their lives, within the families, the community, and school.
Like Autistics for Autistics (A4A), we could not be more disappointed with the Government of Ontario’s 2017 Ontario Autism Program, and its exclusive support of behavioural services. This was a missed opportunity for the government to hear and respond to the clear demand by both parents and autistics for CHOICE in autism supports, services, and interventions. The exclusive support for behavioural services precludes CHOICE among a range of effective intervention modalities required to address the diverse and individualized needs associated with the autism.
Beyond all of the objections raised in the Autistics for Autistics News Release, we submit the following grievances with the Ontario Autism Program.
Misspent Tax Dollars
Ontario families’ taxes are currently supporting a dysfunctional system that fails to provide the required services as intended. By limiting OAP funding to exclusively behavioural services, the government remains entrenched in an antiquated one-size-fits-all service delivery model to a select few, and is ignoring the individual needs of autistics. This fails to support the diverse and individual needs of every child on the spectrum.
Failure to Deliver
The Ontario Autism Program is funded by public tax dollars to support the needs of autistics and their families. However many are excluded from the scope of the program, leaving them without critically-needed services. Many are excluded because of the specific expression of their disability or their personal characteristics:
- those over the age of 18
- those with dual diagnoses
- those requiring assistive devices such as speaking systems for children with Apraxia
- those who have similar needs but do not have an autism diagnosis
Many are excluded because they have needs beyond the scope of behavioural services:
- those requiring any of the range of autism interventions including occupational therapy, speech and language therapy, medical testing and treatment, mental health services or social-developmental interventions
- those defined as being “too high functioning” or having “too many challenges”
- those defined as progressing too quickly or insufficiently
Many of those who qualify for the program are nevertheless unable to access services due to long wait lists, lack of approved clinicians to meet their specific needs, or living in a rural area or a region with relatively few services.
The Ontario Autism Program fails to make provisions to address the needs of many autistics in need, in stark contrast to the intent of this program.
The financial and social burden for filling the gaps of this dysfunctional program is being borne by individuals and families. Parents are remortgaging their houses, doing private fundraising, and spending their retirement funds and savings to pay for services to meet the needs of their children. These expenses are not tax-deductible and so effectively, they are taxed for paying for needed services.
Simultaneously, many parents are required to reduce their participation in the workforce to manage and support their child’s daily needs, again increasing the burden. This burden is even more extreme for aging, female-headed, single-parent, and families with lower income. Families have been given the responsibility for care without the ability to respond to the needs of their autistic family members.
Poor Evidence Base
The Ontario Autism Program is based solely on the behaviours associated with autism and on behavioural research. The behavioural perspective of autism is but one partial approach to autism. Autism is a whole-body complex condition and in many cases, behavioural issues are symptomatic of other underlying problems. Extensive peer-reviewed research indicates that autism implicates neurological, medical, sensory-motor and social-developmental systems that lie beyond the scope of a behavioural perspective. Behavioural services have no ability to analyze, nor address these issues, and therefore can indeed can be inappropriate, ineffective, or in fact harmful for some aspects of autism.
Limited Expertise Base
The Ontario Austism Program has been informed by a very a narrow range of autism experts, ignoring the expertise of autistics themselves and the range of clinicians from diverse specializations. These include social-developmental interventions, occupational therapy, speech and language therapy, physical therapy and mental health therapies, which offer a range of research-supported autism interventions. The clinical expertise of these professionals should be reflected in the Ontario Autism Program.
Further, since many families do not find behavioural services to be effective for their child, and the vast majority of families, including those who utilize behavioural services, require more than one intervention modality, these required services must be included within the Ontario Austism Program. Not only are behavioural services not the only way, but the partisanship of having only behavioural interests in the Ontario Autism Program is unacceptable.
Incomplete, Ineffective and Short-Sighted
Critical issues associated with autism present across the boundaries of disability, medical and mental health. These are beyond the scope of behaviour-based interventions. For example, research indicates the high prevalence of sensory sensitivities and gastro-intestinal issues associated with autism. Both issues often present as behavioural issues, for which behavioural intervention will be ineffective or even adverse. Exclusive support of behavioural services runs counter to the broad research base on autism, is ineffective for the scope of autism and indeed may exacerbate its severity.
Failure to address diverse underlying issues associated autism results in secondary long-term health conditions, in addition to failing to address autism in its own right. The focus on behavioural services is short-sighted because it fails to consider the economic and social impact as these children become adults and seniors. Effective services and supports are requried to achieve functioning and contributing members of society. This is both socially, and fiscally responsible.
Abrogation of Responsibility
In contrast to the promise of choice, consistency and confidence, the taxpayer funded Ontario Autism Program fails to provide needed supports, services and interventions for its intended recipients. Its ineffectiveness will necessarily generate escalating costs. This represents a failure of fiscal accountability and a failure of social accountability to autistics and their supporters. Program effectiveness does not require increase costs. To the contrary, the most fiscally and socially responsible program is one that is effective and where program costs are spent wisely.
CHOICE for the Future
To meet the needs of autistics and their supporters, an effective autism program must meet the diverse, complex, and changing needs associated with autism. It must reflect and incorporate the breadth of research and expertise associated with autism and effective supports, services and interventions.
Although behavioural services should indeed be included under the policy, autistics are more than the sum of their behaviours and exclusive support of such services is contrary to best research and clinical best practices. CHOICE among a range of supports and services, and among a range of clinical providers is supported by research.
Autistics can be supported to develop their abilities to the best of their capacity within families, at school, and as functional and contributing members of society. CHOICE is key to personal development and social inclusion. Contrary to the proposed program, real CHOICE must be a key component for any effective autism program in Ontario.