Child Advocates Call Autism Policy A New Low For Ontario Political Ethics

TORONTO, April 12, 2016 /CNW/ – We should all aspire to a province where a child in need receives what they need, when and where they need it. We are not there yet.

This has been clear in the government’s recent announcement to address wait-times for children with autism requiring critical service. I am aware that many young people and their parents have shared their anger, anxiety and sense of helplessness with the proposed changes. Last week, I asked for a briefing with the Ministry of Children and Youth Services (MCYS) to further understand their rationale behind the new “Ontario Autism Program” and to raise the questions I had.

In Ontario, some children have been languishing on waitlists for Intensive Behaviour Therapy (IBI) for well over half their lives. According to the clinical experts who informed the government’s strategy, IBI is of greatest benefit to younger children. As such, the government announced they will remove children who are five years and older from the IBI waitlists.

It is true that the ministry is offering those older children who will no longer be on the IBI waitlist an alternative – what that alternative is, however, remains unclear and undefined. What the ministry is offering is funding to parents to purchase alternate services in the meantime. This approach does little to engender trust, hope or confidence to families who watch their children inch closer to aging out of a program dependent on early intervention.

The $8,000 dollars the ministry has proposed to offer parents with children now off the IBI waitlist will purchase little, assuming there are any immediate, alternate services for parents to purchase. Many children live in under-resourced communities across our province where access to specialized services is limited. The $8,000 dollars will bring those children little solace, let alone treatment and support.

For those now in line to receive Applied Behavior Analysis (ABA) – considered a less intensive version of IBI – the ministry will have to augment and support agencies before they will be able to provide the quality of service required by these children. According to the government’s clinical experts, ABA offers the hope of better results for children over the age of five.

More work must also be done to recruit and train clinicians tied to the assessment and program delivery process – experts that the ministry has acknowledged are in short supply across the province. The plan from the government to train and support clinicians in this process seems vague; the role of the Ministry of Training, Colleges and Universities in this work is not identified or understood, yet the new autism program hinges on these clinicians.

One also has to question how the school system will fit into this plan. How is the role of the school and the classroom integrated into plans for service to the school-aged children? Parents of children with “special needs” know that the gap between the promise of the school system and the child’s lived experience at school is a chasm. The Ministry of Education also appears absent from this important discussion.

With respect and with the best interests of children in mind, the government should grandfather children who were on the IBI waitlist and extend the May 1 date of the implementation of its plan until a time that children and their parents can be assured that they will have what they need, when they need it. This will take an enormous amount of work and will need to take place quickly, and ministries other than the Ministry of Children and Youth Services must play their part as well. Above all, children and their parents will need to be continually kept up-to-date on developments that affect their lives.

With the new “Ontario Autism Program,” the government has already walked through its own door – there is no turning back from it. However, if we do not pause and implement a reboot strategy here, we will have nothing more than a waitlist strategy – where some children continue to languish and where the youngest of children will “only” have to wait six months for service – that will continue to perpetuate.

This low bar cannot be the Ontario we aspire to.

The debate is not about waitlists. It is about children. It is about people, and it is about their possibility and futures.

Irwin Elman
Provincial Advocate for Children and Youth


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