Ontario Autism Program in Crisis

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Autism in Ontario: The Crisis

Children and youth in Ontario with Autism are in crisis- so are their families, their schools, and their communities.  Thousands of these children cannot access the therapies they need to gain essential skills and learning because the funds simply do not exist to accommodate the rising number of those being diagnosed.  In 2018, the CDC determined that approximately 1 in 59 children is diagnosed with an Autism Spectrum Disorder (ASD).  And the number is rising.  Failure to intervene and sustain therapy interventions has and will continue to see increasing number of young adults with Autism that will need extensive care in the areas of self care, mental health, and social assistance.   

Autism Spectrum Disorder (ASD) is a complex developmental disability which has life long effects.  It is a medical, neurological disorder that needs complex interventions on a consistent basis.  If we asked a cancer patient to wait for 3 years for treatment, would we  be compliant?  If we asked a neurotypical child to wait for years or more for their education would we say this is acceptable?  If we asked someone to wait for an MRI for 3 years of more, would we be willing to wait?  The answers are clear- we wouldn't.  And children with Autism cannot wait either. 

The Ontario Autism Program (OAP) is not serving those who most need it.  We call on this government to take action and to reform what needs to be amended and ameliorated.  What families and children need are less wait times, more qualified trained therapists, and a ministry governing body to oversee the implementation and accountability of the OAP by public and private service providers.

1. The Wait List: Too Long

Currently there are approximately 24 000 children and youth on the OAP wait list, and that number is climbing.  Only 1/3 of that number is receiving some type of service under the OAP, with many of them only receiving as little as 2 hours a week-when 10 hours or more are needed based on the individual.  Many of these children have been waiting and continue to wait 3 years of more for treatment.  Research continues to demonstrate over and over again that Applied Behavioural Analysis (ABA) intervention at a young age and beyond into adult years, will make a tremendous and positive impact in the areas of acquisition of life skills, learning of academic knowledge, and socialization and communication. In addition to ABA, we must look to treat the individual based on their exceptional needs, and therefor we call on this government to acknowledge that therapies in conjunction with ABA therapy such Speech Therapy, Occupational Therapy, and Physiotherapy must be part of the OAP therapy model- as Autism affects the whole child, in addition to those who are non-verbal and/or have physical or mental co-mordibities that need treatment.  Families without support are left paying for therapies at a conservative rate of 30-50K per year.  This does not cover respite or medically complex children.  Should a family have more than one ASD child, imagine the financial strain then?

2.  Qualified Therapists: A Governing Science of Behavioural College

We call on this government to facilitate and enforce that only those with sufficient and extensive educational backgrounds and experience be trusted to deliver the aforementioned treatments above.  In addition, there must be a regulated Science of Behaviour College that looks to enforce the training requirements by accredited institutions.  Many of the providers of the OAP do not have staff that are adequately trained and are not being held to proper ABA standards.  We call on this government to enforce that all DSO and DFO providers hire only those who are in good standing with the expectations of a proposed  Science of Behaviour College. There are horrifying reports that those that call themselves "Registered Behavioural Therapists" possessing only a 40 hour online course and only completion of a high school diploma, are delivering therapy to complex ASD children with complex therapy programs- all while the government is paying for this therapy.  Therefor a regulatory college is needed for all behavioral therapists including those possessing a  BCAba or BCBA certification.

3.  OAP Ministry Governing Body: Transparency and Accountability

Last, we call on this government to create a separate governing body at the ministry level to ensure that the access to, the implementation of, and the accountability and transparency of the OAP are in check. This governing body would hold the wait list and ensure that children are being called for service and given fair and impartial information by the ministry, eliminating the conflict of interest that currently exists with regional providers holding the wait list and government funds.  We also call on this governing body to serve as the administrator that looks to ensure that both DSO and DFO providers are implementing and executing all OAP mandated requirements, and that should there be a failure to comply- there were would be financial and professional repercussions.  Subsequently, there would be a process of complaints and review committee that could be accessed by individuals receiving service.

The Canadian Conscience

We're so fortunate in so many ways to be Canadians. We value difference, we value rights and freedoms, we value social justice.  But how we are treating our most vulnerable communities is nothing to be proud of.  Under the current Ontario plan for Autism treatment, we are saying to a child with Autism that it is "ok" to remain without intervention for sustained periods of time.  We are saying to that child that  it's ok for them to not be included at school because there are few adequate supports for them to attend.  It's ok if that child doesn't sleep or eat, or can't go shopping, or attend a birthday party or family function, or that it's ok that friends and family have abandoned them.  It's ok to not have friends, or be part of social groups.  It's ok if that child has challenges with communication and can't speak and gets frustrated and hits and bites, or destroy things around them.  It's ok that they can't ride a bike or can't hold a crayon, understand directions, or see dangers around them.  It's ok that their parents or caregivers  are on the edge of losing their homes (or have lost them already in order to pay for therapy) or that their parents have lost their jobs to care for them (sometimes now teens or adults).  And if their caregivers should become sick, or chronically ill or worse- that's ok too.

We urge this government not to be ok with all of this.  

We urge Canadians to not be ok with this.

It's time to give our children the inclusion they deserve, the therapy they need, and the equity that we all wish to part of.

And for the record... it's just not ok.