Archive for category Tracy MacCharles

Behaviour Experts Call Wynne’s Autism Policy Destructive

Toronto, April 20, 2016 – The Ministry of Children and Youth Services has declared that as of May 1, Ontario will no longer provide Intensive Behavioural Intervention (IBI) to children of five years and older. A group of nine Board Certified Behavior Analysts™ (BCBAs), who are practitioners and advocates for children with Autism Spectrum Disorder (ASD) and who look at the full scope of the science behind treatment, have significant concerns with this new provincial policy. This group of BCBAs believes it is their professional, personal, and social responsibility to bring to the government’s attention that the proposed changes will have a destructive effect on this community of children, their families, and all present and future Ontarians.

“The recent unjustifiable, ill-advised implementation of an age cutoff for funded IBI is regressive and foreshadows a dark future for those denied access to treatment” said Dr. James Porter, BCBA and Clinical Psychologist.   Intensive Behaviour Intervention (IBI) teaches skills that are fundamental to a child’s ability to integrate and participate in family, community, school, and with social life.  Beginning May 1, access to IBI will be limited to children ages two to four. Currently, children wait two to four years to get IBI treatment. Between the diagnosis and treatment wait times, the new policy changes capping access to IBI at five years old means 1,000s of children will miss out on this life changing treatment. This group of BCBAs questions the ethics of the decision, as the Ministry’s own expert panel did not even recommend cutting kids over five off of the waitlist. Without access to treatment, it puts the welfare of children at risk, and studies have proven that treating children with ASD, rather than denying them treatment, is more costeffective for taxpayers in the long run.

“As BCBAs it is our responsibility to recommend treatment based on clinical need and not constrained by age,” said Nancy Marchese, BCBA and Psychological Associate. “It is completely unethical that the government is denying children over five years old, IBI, a treatment that allows them to learn critical skills that are integral to their development and quality of life.”

Earlier this month, the Ministry of Children and Youth Services announced a new provincial policy for autism services along with its plans to invest $333 million in autism over the next five years. The new policy is said to increase access, reduce wait times, and expand Intensive Behaviour Intervention (IBI) for children ‘in the appropriate developmental window’ – identified as two to four year olds. BCBAs who do the work and oversee IBI treatment program were not on the expert panel to inform decisions about this new policy. Further, this group believes this new policy was built through a narrow scope of research, neglects important empirical evidence from the behaviour analytic field, and that more stakeholders need to be involved in the decision-making process, such as parents and BCBAs. This group of BCBAs has identified three main challenges to the new policy:

● it will leave children with ASD at significant risks including severe challenging behaviors, reduced adaptive and self care skills, the absence of meaningful communication skills and long term dependence on their families and society

● the scientific viability of the proposed Autism Program Model is questionable

● the methodology for the roll-out of the model is impractical

This group of BCBAs suggests a more evidence-based behaviour analytic approach to treating autism, which can lead to important differences and allow the optimal success of children living with ASD. This would require access to early and accurate diagnosis, a customized approach that matches the treatment program to the needs of the child, and the services of IBI (ie: 20-40 hours per week) without arbitrary age cut offs. This group also believes ethical and economic implications of a less intensive treatment model for children over the age of five who have never received IBI treatment must be considered, as it has no current support from scientific data and efficacy studies.

This group of BCBAs has recently presented these concerns to the Ontario Ministry of Children and Youth Services with hopes of change before the alterations are made on May 1st.

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Ontario Agencies Supporting Individuals With Special Needs Weighs In On Ontario’s New Autism Policy

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The Ontario Agencies Supporting Individuals With Special Needs (OASIS) has just weighed in on the new Ontario Autism Policy.  In a media release David Barber, President at OASIS stated:

This new policy, if implemented the way it stands, sets children and their families back

Barber went on to stay:

Early intervention is crucial for a child’s success. The developmental gains made through IBI are integral to success in the education system. This is too important of an issue to simply take away from children the treatment and help they need. Ontario’s most vulnerable children should not be penalized for a system that has been inadequately funded, leaving them stranded on wait lists.

OASIS is calling on the government to slowly roll out the new changes to the system, and calling on the Ministry of Education to come up with a plan to be implement immediately to help assist kids affected by this new policy.

 

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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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