Archive for category Autism Press Release
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.
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.
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.
Provincial Advocate for Children and Youth
(Ontario’s Minister of Children and Youth Services Tracy MacCharles Feeling The Heat On New Autism Policy)
The Ontario Association for Behaviour Analysis (ONTABA) issued a scathing letter to Tracy MacCharles who is Ontario’s Minister of Children and Youth Services over the latest policy to strip intensive behavioural therapy from thousands of Ontario kids over 5. ONTABA is an organization representing Ontario’s behaviour experts, and these are the experts that Ontario would be relying on heavily in their new policy.
During questioning at the Ontario legislature last week on the new autism policy to strip kids over 5 of intensive behavioral therapy, MacCharles heavily relied on a government panel of “hand picked experts” to reaffirm the position of the Ontario government regarding changes to autism services. It appears the real experts in behavioural analysis don’t agree with the 2013 consultation findings that lead to this new policy change. The ONTABA was neither consulted nor invited to take part of the initial consultation and has put the report delivered to the legislature by the government’s expert panel into question. In the letter to Minster MacCharles ONTABA asked for “clarification” on 5 key points. One of those points the ONTABA stressed inconsistencies of the panel’s research:
Our concern stems from the fact that unfortunately, many of the reviews and meta-analyses cited in the January 2014 report titled Autism Spectrum Disorder in Ontario 2013 conflate studies of ABA interventions with studies of other intervention models that are sometimes described as “behavioural” or “based on ABA” but do not have the well-established defining characteristics of ABA or comparable supporting evidence. Although there is some published, peer-reviewed research on these packaged, mixed-method early intervention programs for young children with ASD (such as the Early Start Denver Model), there are many more studies demonstrating the efficacy of highly individualized intensive, comprehensive ABA interventions that are designed and overseen by professionals with documented training and competence in behaviour analysis (see Eldevik et al., 2009 and 2010 for meta-analyses of multiple published studies of genuine early intensive ABA). Further, unlike other early intervention models, the wide array of procedures for building functional skills and decreasing problem behaviours that comprise intensive, comprehensive ABA intervention have been evaluated in many hundreds of scientific studies. This supporting research does not appear to have been considered in the January 2014 report.
The letter goes on to state:
ONTABA members urge the Ministry to enlist expert behaviour analysts to assist in reviewing the published scientific research on ABA interventions separately from the research on developmental and mixed-method intervention models. Behaviour analysts are ethically obligated to use and recommend interventions that have proved most effective in scientific research and are eager to serve as a resource.
Only a very “small subset” of individuals “self-identified” themselves as behavior experts in the committee report presented to the legislature in 2014. I’ve watched and commented on a large amount of committees and expert panels at the federal level on different issues and unrelated topics in my time. The exclusion of ONTABA from any consultation process considering the recent changes in policy will rely heavily on their members is a fact I find extremely interesting. The exclusion of the Ontario Autism Coalition who has a very high profile background on bringing parents’ concerns to the legislature (regarding the system in place now) from the consultation process is yet another fact I find extremely interesting.
ONTABA in its letter also urged the government to act immediately to develop support in the school system for those who have been on the wait-list for intensive behaviour therapy. ONTABA stated:
One of the immediate implications of the plan to transition children five and above who are on the waitlist or who are currently receiving IBI to different service options is an increase in the number of children with ASD who will be entering the school system over the next 6-12 months. Further, as the changes to the Ontario Autism Program are expected to roll out over several years, these children (many of whom have been waiting for, or recently started receiving, evidence-based behavioural services) may not have immediate access to appropriately individualized, effective behavioural service options. Our membership and stakeholders are concerned about the potential effects of these changes on children and their families. ONTABA advocates for an approach that is consistent with our ethical obligation to protect the best interests of our clients.
I would also add to this statement that school boards and the ministry of education do not have a very good track record when it comes to money being allocated for social programs or accounting for the money used in those programs. I have a blog forthcoming on that very issue. There may be a strong need here to set up a watchdog to keep track of the programs in the schools independent from the ministry and the legislature to ensure that kids who need behavioral based services are actively getting it in the schools, and that the level of service remains constant throughout different regions of the province and through different school boards. A point echoed by the ONTABA to some extent when requesting that ABA services be regulated:
In light of the plan to invest significant efforts and money in improving and expanding the Ontario Autism Program, we believe it is critical to initiate appropriate regulation of practitioners of ABA in the province as soon as possible. In order to protect the public, build capacity, and ensure that all consumers have access to ABA services delivered and overseen by qualified providers, it is essential to set standards that are consistent with the Behavior Analyst Certification Board credentialing requirements as well as recommendations from the 2015 SEG report commissioned by MCYS and stakeholders surveyed for the Autism Spectrum Disorder in Ontario 2013 report. ONTABA is eager to work with MCYS on this process.
Speaking as a parent with an autistic son; it takes a small village to raise a child. It takes a small army to raise a child with autism in the current system. Parents are constantly fighting the system; fighting to get on wait lists, fighting to get the right specialists involved, fighting to get a case worker to navigate the system, fighting for funding, navigating through an enormous amount of red tape, even fighting to get a small break once in a while. It’s not easy, and sometimes exhausting and extremely frustrating. This is a system that isn’t set up to be user friendly. Many like me have sacrificed a career, money, and style of living to dedicate themselves to the care of their kids and family. The people of Ontario are owed an explanation as to why a proper consultation process wasn’t commenced with these recent policy changes to begin with.
The system has been in need of desperate repair for a long time. Premier Wynne ran on fixing this system in the last election. Shouldn’t the most effective way at fixing the system include ALL stakeholders in an open consultation process, and a balanced approach put forth on policy as a result of scientific evidence and user feedback?
The Wynne government doesn’t seem to have attempted this to the extent its needed judging from the outrage the recent policy announcement has caused, and now experts are refuting the government’s own reports as a result. Whether the exclusion of such a balanced approach to policy in this case was intentional or just plain carelessness is something I will leave it to you too judge. For those using the system however, it is not fair to families dealing with autism to put forth policy that puts us all in a position of fighting yet again to get the services our kids need. It shouldn’t be a battle to get the government on our side as a result of the problems we face in the current system. We have enough to worry about regarding the care of our children. We need a government in place that understands our side of the system and the problems within it, rather than one that makes a mockery of the challenges this system faces thus sets a pretty good example to tax payers of what we all have to deal with as parents who care for autistic kids.
It’s not just the policy that needs to change, it’s the culture around autism our policy makers have that needs to change. Only then can we develop meaningful, sustainable, and reliable systems of support inclusive to all age groups who are on the autism spectrum. I would hope that all stakeholders commit to a more open consultation process to discuss the problems this system faces in the near future. Anything less would be a great disservice to the most vulnerable this system is set up to support and to the tax payers of this province.