Posts Tagged IBI
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.
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
This blog will be dedicated moving forward to following the conversations and policy discussions about Ontario’s new autism policy. The discussions going on right now are a national ethical and moral issue and those across Canada should be kept up to date as much as possible. On Tuesday there was a very emotional rally at our provincial legislature Ontario Queens Park by parents of autistic kids:
Two really good shows Wednesday on CFRB 1010 in Toronto discussing the protest and policy. The first commentary on the autism story gripping Ontario comes from the Beyond The Mic show hosted by Mike Bullard. Comments start at 4:45:
The second one was is from CFRB’s Live Drive show. Ontario Premier Kathleen Wynne was on the show for a one on one follow up interview and she is digging in her heals on the new Autism policy. My comments were aired at 18:41 with an excellent discussion on them after by the hosts:
(Ontario Premier Kathleen Wynne’s Decisions on Autism Services Politics Not Evidence Based Experts Say)
There has been very strong reaction to Kathleen Wynne’s decision to de-fund therapy for kids with Autism, from experts to advocates to politicians. Wynne looks to have picked a fight with the wrong crowd, and there are developments that the situation is getting even worse for the families affected.
In the 2014 budget, the first thing the Wynne government did after being re-elected was to increase funding for respite support for parents under a program called Special Services At Home (SSAH) to help give parents who have kids with a disability a break, or to hire private in home support when needed. Service providers were sent a memo last year by the Ministry of Youth and Child Services letting them know that clients should be applying for this money, and those that are already receiving should apply for an increase if their situation has changed.
The new money for SSAH should have kicked in starting this month and instead I’ve heard from several parents who are new applicants and qualify for this support money still waiting for approval or being actively denied. So far all those who have applied for an increase have not received a dime more than they usually get with no reason as to why they were denied the increase.
It’s looking very much like Wynne did a bait and switch during the last election by promising to fix the issues with a system in crisis to get votes, than back track on those promises and put a system that’s already in crisis to the point of near collapse.
Three experts appeared on CFRB 1010’s Nightside Talk Show last night to denounce Wynne’s recent decision to cut funding for IBI therapy for kids over 5 calling the move not based on scientific expert opinion. A clip of the show can be found here:
Political reaction at Queens Park is being led by the NDP:
This blog will be following developments as they occur.
(Parents Upset At Recent Changes To Autism Services In Ontario)
The Ontario government recently announced changes it is going to make to the services autistic kids receive in the province. The Ontario government is looking at terminating intensive behavioral intervention therapy (IBI) for kids 5 and over, and pump more money into the controversial applied behavior analysis (ABA) program in its place. Those currently on the wait list for IBI will receive a total of $8,000 to cover a few months of IBI therapy as compensation.
IBI therapy is one on one therapy with specialists for the kids, meanwhile ABA sets to train the parents to become their child’s specialist and the parent is then responsible for applied therapy. The Ontario Government is committing $333 million to transition IBI to ABA. This transition could end up having a profound impact on parents who are working full-time on top of many other stresses they have to deal with. This change in policy puts applied therapy directly on the parents’ backs, which could create another crisis as a result of the time off of work to commit to ABA in which most parents in the know feel hasn’t produced satisfactory results compared to IBI.
Autism Ontario in its press release seemed very supportive of the new changes. Marg Spoelstra, Executive Director, Autism Ontario stated:
Families today can give credit to the parents who have been continually advocating on behalf of the thousands of people with autism and their families for many years about the importance of investment into timely, early, evidence based intervention, even at a time when they and their children were or would not be eligible for the intervention services announced today.
One quick look at the comments section on the Autism Ontario facebook page suggests something completely different with respect to parents concerns on this policy. One parent stated:
The transition period might feel devastating. How about every phone call. Every meltdown. Every injury to not only our children by themselves, but to other family members. Every therapy strategy implemented, while waiting. Every tear. Every day, from wake, to sleep … If we’re lucky, while waiting for the already promised hope of IBI. The faith that one day … It’s all been a devastating disappointment.
Other comments include criticizing Autism Ontario for their support of this policy:
Beyond disappointed in Autism Ontario in being part of a process that offers up to 2,000 sacrificial lambs in order to support this ‘new’ program. Why is it ok to abandon these kids before they were given a chance? Why wasn’t a plan made for these kids & why couldn’t the plan have given them the same chance that kids before them got & kids after them will get (at an earlier age) ABA services are NOT as effective & in fact are very hard to access for single parents or 2 working parents.
One comment that has stuck with me being a parent with an autistic son, and political blogger:
Two words. Human Rights. This a step backwards, now we have an age five cut off, once upon a time Ontario agreed and removed the age six cut off for IBI. Huge gains can be made by children over five, especially children who are non-speaking. Developmental gains are slower for children with a developmental disability, too bad they are being written off for a chance at appropriate early intervention. Being dumped into a waitlist for ABA services that are inadequate and do little to provide the extent of intervention that children need. All of this to be delivered by bloated transfer payment agencies, instead of direct funding to families to purchase services at a much lower cost.(it’s been proven in multiple reports) I hope that parents will find the strength to come forward to speak out about what is really going on here.
Upset parents have already stated a petition to get the Ontario government to reconsider this policy approach. I’ve reached out to Autism Ontario to get them to clarify their support for this new policy the government has put forth.
More to come soon. Don’t forget to subscribe to my blog for more details as they become available. You can subscribe by e-mail through the subscribe section on the upper right hand section of this blog. You can also add me to twitter. I’m @jkobopoli.