In May 2016, I wrote an article as to why the New Ontario Autism Program is a violation of the basic human rights of children with disabilities in Ontario, particularly children who are diagnosed with autism. Below is the full article:
Why is the New Ontario Autism Program announced by the Ministry of Children and Youth Services last 29 March 2016 and will be implemented in May 2018, a violation of the basic human rights of children with disabilities and a misuse of “scientific evidence”?
Last 29 March 2016, the Ontario Ministry of Children and Youth Services (MCYS) has announced that they have a New Ontario Autism Program. From the said announcement, the MCYS (2016a) mentions that,
“The new approach is informed by advice from families, clinical experts and the Autism Spectrum Disorder Clinical Expert Committee. It is consistent with scientific evidence and will provide a more responsive continuum of supports. The transition to the New Ontario Autism Program will happen over the next two years” (MCYS, 2016a, n.p.).
Reading the 131-pages of the Autism Spectrum Disorder Clinical Expert Committee Report (2013/2014) makes me initially question why there is no Board Certified Behaviour Analyst (BCBA) in this expert panel. BCBAs go through a very rigid process to become certified in this field and become valuable practitioners that will help families thoroughly and give parents the robust knowledge they need to help their children gain skills of social value and live meaningful lives. BCBAs also advocate for the children and families that they serve. It makes me further question whether the MCYS has been ill-informed considering that there is no BCBA within the Autism Spectrum Disorder Clinical Expert Committee and consequently presents a decision and program made out of callous disregard for the professionals directly working with families. And while the Autism Spectrum Disorder Clinical Expert Committee has referred intermittently to the “self-identified” BCBAs whom they have consulted for this Report, this consultation was “accidental” and not planned, ab initio. If the Autism Spectrum Disorder Clinical Expert Committee and the MCYS really value the role of BCBAs in helping children with autism and their families, they should have been included in this process at the commencement of the work of this Committee.
There are at least two prongs of challenges that can be raised against this New Ontario Autism Program: (1) the violation of children’s basic human rights through a decision making process that has used scientific evidence and yet forget that there are real children, real people involved; (2) the misuse of science and studies done through inductive methods as well as the mockery of the science of Psychology, particularly the field of Applied Behaviour Analysis (ABA). particularly of Applied Behaviour Analysis.
There are strong challenges that can be raised on the sole use of “scientific evidence” as a basis of any government policy and decision. Science is a tool for the advancement of humankind; however, just like any other areas of knowledge, it has limitations. For one, although the Autism Disorder Clinical Expert Committee Report (2013/2014) that the MCYS (2016a) has exclusively invoked to form the New Ontario Autism Program, has made use of 8 meta-analyses, 2 reviews of meta-analyses, and 29 studies (pp. 36–46), there is an underlying problem with basing government decisions out of any report that is formed using scientific studies done through induction. Science has temporal and provisional nature of conclusions, and the problem with induction and “scientific evidence” as used solely to create a government policy is that, it becomes too exclusionary. The Honourable MPP Tracy MacCharles has used the words, “scientific evidence” countless times to form the backbone and spine of the New Ontario Autism Program. However, you cannot use scientific evidence alone yet undermine the moral duty of the state to protect the basic human rights of its citizens, more so, if they are the disadvantaged and vulnerable members of the population. That is not how liberalism and libertarian governments work (Kant, 1785; Rawls, 1971).
The great philosopher and empiricist David Hume (1748) raises the problem on induction: we rely on inductive reasoning, generalization, predictions and outcomes, however, these are contingent in nature and may not bound or encapsulate all human conditions. For one, even if there are numerous claims through the scientific studies that were used by the Autism Disorder Clinical Expert Committee Report (2013/2014) that early intervention is more effective between two to four years old, this claim was extracted through scientific studies which utilized inductive methods. What are the implications of this?
(1) If we try to use induction to support what we deem as a deductively valid argument, such as “early intervention is more effective between two to four years old”, while the findings of studies which use induction can be true, the conclusion is too weak to be applied to the entire population. This means that while most of the inductive studies used by the Autism Disorder Clinical Expert Committee Report (2013/2014) have true inductive findings, this cannot be applied to the entire population being studied, i.e. all children on the autism spectrum. By implication, this means it cannot be strongly concluded that only children on the autism spectrum who are aged two to four can benefit from early intervention. Moreover, to claim such is also appealing to a logical fallacy called, “argumentum ad ignorantiam” (argument from ignorance). This means that while inductively, the 39 studies and meta-analyses consulted by Autism Disorder Clinical Expert Committee Report (2013/2014) claim true that effective intervention is appropriate for children between two to four years old, such claim neither challenges nor negates the claim that intensive behaviour intervention is still effective for children five years old and above. Lovaas and Smith (1988) found no correlation between age at treatment onset and outcome, and this means that intensive ABA therapy or what we know as IBI in Ontario can still be effective for children 5 years old and above. Eikeseth et al (2002) claim that we cannot cap a limitation of the effectiveness of intensive ABA based on age, because “studies lacked comparison groups that received intensive treatment” (p. 50). If there were studies within Canada and elsewhere, done to compare these two groups, i.e. children between two to four years old vs. children five years old and older, with both groups have done intensive ABA, ceteris parabus, and the studies will present similar findings that there is a huge gap in terms of progress, performance and development of these two groups, and the younger children perform better than children five years old and above, then there is a stronger claim on the use of “scientific evidence”. However, in the absence of such, we cannot and should not solely use “scientific evidence” as a basis of a government policy.
(2) Furthermore, to defend the reliability of the government policy such as the New Ontario Autism Program in which the MCYS has used “scientific evidence” as the sole basis of its decision is to appeal to the wrong assumption that nature is uniform and that human lives and conditions are identical. We know for a fact that nature, human lives and conditions are not uniform in all respects. One child in the autism spectrum, who is five years old, may still be having gains similar to how children in other age brackets are having gains.
The use of “scientific evidence” in a utilitarian and economically pragmatic fashion has undermined not only the value of scientific researches in our society but more significantly undermined the basic human rights and dignity of children on the autism spectrum as persons.
The MCYS (2016a) announcement about the New Ontario Autism Program is a violation of the human rights of children on the autism spectrum, as children and persons with disabilities. International instruments such as the United Nations (UN) Universal Declaration of Human Rights, UN Convention on the Rights of a Child, UN Convention on the Rights of People with Disabilities, as well as federal and provincial legal devices such as The Canadian Charter of Rights and Freedoms (Part 1 of the 1982 Constitution Act) and the Ontario Human Rights Code can be strongly invoked in order to provide evidential and factual claims to argue that the MCYS’ New Ontario Autism Program is a concrete violation of human rights of children on the autism spectrum and children and persons with disabilities.
Three of the several highlights of the MCYS (2016a) announcement mention that:
“[The Ministry is] Focusing Intensive Behavioural Intervention (IBI) services to children in the appropriate developmental window: ages two to four;
Gradually transitioning children five years and older currently receiving IBI to more clinically appropriate Applied Behaviour Analysis (ABA) services;
Providing families with children five years and older on the IBI waitlist with $8,000 in one-time funding to immediately purchase community services or supports based on their children’s specific needs as they transition on the IBI waitlist” (MCYS, 2016a, n.p.; words in brackets, mine).
On the account of these three highlights, there were evident violations of human rights, by appealing to solely to “scientific evidence” and not accounting for basic human rights and the principles of equality to support this new policy. As mentioned earlier, science is a tool for the advancement of humankind, however, in this MCYS’ New Ontario Autism Program, the policy has circumvented how the science of psychology, particularly, Applied Behaviour Analysis works and benefits children and adults on the autism spectrum, and made this circumvention as a means to violate basic human rights of some of the most disadvantaged and vulnerable members of our Canadian society.
On the first highlight: “Focusing Intensive Behavioural Intervention (IBI) services to children in the appropriate developmental window: ages two to four” (MCYS, 2016a, n.p.).
This New Ontario Autism Program discriminates against children five years old and above as they are being transitioned and for those who are waiting for services for years, they are being taken off from the early Intensive Behaviour Intervention (EIBI) program. This is discrimination based on age and disability, and this is against the UN Convention on the Rights of a Child, Section 15.1 of the Charter of Rights and Freedoms of the 1982 Constitution Act as well as the Ontario Human Rights Code, with age and disability being protected grounds. The UN Convention on the Rights of People with Disabilities mentions that “discrimination against any person on the basis of disability is a violation of the inherent dignity and worth of the human person” (2006, Clause G, n.p.).
The IBI Program of the Province is using methods of the science of Psychology, through a behaviour modification approach called Applied Behaviour Analysis (Lovaas, 1979). It is a science which aims to use empirically validated approaches to modify behaviours and to assist children and adults on the spectrum to develop and acquire skills that have social values. IBI employing the ABA approach as initially espoused by Lovaas (1979), and delivered for about 20 hours a week, teaches children to cooperate, visually perform, acquire receptive and expressive language, develop imitation skills, make requests appropriately, to gain socialization and social interaction skills, to acquire academic skills such as literacy, reading, writing, mathematics and numeracy, life skills such as dressing, grooming, eating and toileting, among many other skills. You could now imagine how life-changing this therapy can be for many disabled children and children on the autism spectrum. And if this is given to children on the autism spectrum who may benefit from this kind of therapy, they may live independent happy lives and as significant members of the community. On the other hand, if children are robbed of this opportunity, they will be more vulnerable than they already are. They will miss the opportunity for a thriving life and a better future, they will experience social genocide, and they will be a lost generation.
The MCYS New Ontario Autism Program was introduced for at least two reasons: (1) the long waiting list of children with autism waiting for services in our Province and (2) there has to be a means of “expansion of services” in order to lessen children in the waiting list. In the webinar hosted by MCYS (2016b) to inform parents about the enhanced autism services, they mentioned that 85% of children on the waiting list are 5 years old and above (Slide 5). On these two accounts, the New Autism Ontario Program and the MCYS are trying to reach their goals to lessen the wait lists across the Province, at the expense of discriminating children who in their construction, have ‘aged out’ and no longer suitable for that developmental window to learn — this is discrimination based on age and disability. Again, the UN Convention on the Rights of People with Disabilities mentions that, “children with disabilities should have full enjoyment of all human rights and fundamental freedoms on an equal basis with other children” (2006, Clause R, n.p). Furthermore, this decision of the MCYS, following a utilitarian mechanism, did not fundamentally reflect on best interests of the children on the autism spectrum as the primary consideration.
In the introduction of the New Ontario Autism Program, MCYS failed to
(1) “To refrain from engaging in any act or practice that is inconsistent with the present [UN ]Convention [on the Rights of People with Disabilities] and to ensure that public authorities and institutions act in conformity with the present Convention” (Article 4d of the UN Convention on the Rights of People with Disabilities, 2006, n.p.);
(2) And protect “the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others” (Article 10 of the UN Convention on the Rights of People with Disabilities, 2006, n.p.)
Furthermore, with the New Ontario Autism Program, MCYS failed to
(1) “respect and ensure the rights set forth in the present Convention to each child within their jurisdiction without discrimination of any kind, irrespective of the child’s or his or her parent’s or legal guardian’s race, colour, sex, language, religion, political or other opinion, national, ethnic or social origin, property, disability, birth or other status” (Article 2 of the UN Convention on the Rights of a Child, 1989/1990, n.p.).
(2) “ensure to the maximum extent possible the survival and development of the child” (Article 6b of the UN Convention on the Rights of a Child, 1989/1990, n.p.).
Aside from creating a form of “oppression Olympics” (Smith, 2006) among families with children on the autism spectrum, this divisive strategy of the MCYS (2016a) violates the “recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family” (UN Universal Declaration of Human Rights, 1948, n.p.), by focusing and providing intensive behaviour modification programs and support to only a few children. All children regardless of age or any social category of their identities are entitled to government services and programs if it is for the best interest of these children.
On another significant tangent, Statistics Canada (2015) citing Bryson, et.al. (2003) and Bloch-Rosen (1999) states that, “although the onset is typically prior to age three years, most children are not diagnosed until the age of four” (n.p.). This makes one infer and ask how can the MCYS give IBI to children aged two to four years old, when on the average the official diagnosis, such as the Autism Diagnostic Observation Scale (ADOS), are only given when children are aged four years old?
Yet of course, the MCYS (2016b) Action on Autism webinars mention that autism diagnosis can now begin at 1 year old (MCYS, 2016b, Slide 17), which can be direct challenge towards the clinical practice and fields of development paediatrics, psychology and psychiatry. Furthermore, two initial questions can be raised:
(1) Is the medical profession and field prepared to diagnose children on the autism spectrum disorder at age one? The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) presents that although early diagnosis for autism spectrum disorder is possible, the diagnosis cannot be firmed up until the children fully engage in social demands and real-life settings, and this happens fully when they participate with people not familiar with them and their peers. And diagnosing children as young as one or even up to three years old may be possible but too random. Sometimes, paediatricians are also careful about the diagnosis, knowing that this has a lifelong impact on the child and the family;
(2) As a society, are we prepared to diagnose children to be in the autism spectrum as at age of one? I have spoken to many parents and families who have had similar situations and parents can be initially in denial. For some parents, especially those first time parents, they do not even have a clue. This is not because of sheer ignorance but because even their own parents (grandparents of the child) and other family members either have no clue or are denying that the child maybe possibly on the autism spectrum. In this time that we have an incessantly rising number of children on the autism spectrum, with one in 68 children in North America diagnosed to be in the autism spectrum, it is only now that research about this condition is starting to take-off. Furthermore, it is only now that as a society, we are slowly learning about autism and accepting how these children have exceptional needs and abilities, that when are given the opportunity to thrive and use these skills, they have meaningful lives and are of great value to the society. By the time that parents and families realize that the child is on the autism spectrum, and with the MCYS (2016a) age cut-off, the child already loses his or her opportunity to have early intervention.
On the second highlight mentioned above: “Gradually transitioning children five years and older currently receiving IBI to more clinically appropriate Applied Behaviour Analysis (ABA) services” (MCYS, 2016a, n.p.).
I think this is a mockery of the science of psychology, specifically ABA. The webinars hosted by the MCYS states that:
“Slide 3: More moderate interventions need to be more flexible and intensive to meet children’s diverse needs
Slide 8: Beginning in May 2016, based on the most recent evidence, the Ministry will focus intensive intervention so children receive it when they will benefit most (between two and four years of age)
Slide 14: The Ministry is partnering with clinical experts and four children’s services organizations to demonstrate four models of new, pre-diagnosis early intervention services in Ontario over the next three years. The models are play-based and are delivered in naturalistic settings (e.g., the child’s home or the playground) to help very young children meet individualized goals” (MCYS, 2016b).
Why are we doing moderate intensity ABA? Eikeseth et. al (2002), along with over 40 studies in the field of Applied Behaviour Analysis claim that, “intensive, long-term, applied behaviour analytic (ABA) treatment enables many children with autism to make significant gains….cognitive, language, adaptive, and academic skills” (p. 49).
When “moderate interventions following the method of ABA” were conceptualized by the MCYS, did they consult the BCBA as experts? From what I understand, intensity and quality firm up an ABA program that is not a cookie cutter and instead fulfills the goals for the child and for the best interest of the child. Furthermore, while ABA as a method of behaviour modification also utilizes play-based methods and naturalistic environment training, zeroing into these methods alone will place some children on the autism spectrum at a disadvantage, i.e. those who need discrete trial training initially and significantly to attain skills necessary for other methods of teaching should be given this type of intervention according to need.
On the third highlight: “Providing families with children five years and older on the IBI waitlist with $8,000 in one-time funding to immediately purchase community services or supports based on their children’s specific needs as they transition on the IBI waitlist” (MCYS, 2016a, n.p).
Initial questions and concerns can be raised against this highlight:
(1) If the transition period will take two years and the New Ontario Autism Program will start officially in May 2018, why are you transitioning or taking children five years old and above off the wait list, sooner? Why do you rob children of the opportunity to learn if the New Ontario Autism Program is still in the planning stage and within a very leaky pipeline? If our children are the future of this country, then why are you allowing them to fall into the cracks of the system and traverse within a very leaky pipeline?
(2) MCYS also fails to honour the contracts that the Ministry, through their AIPs, have signed when the children who are five years old and above, will be discharged on the grounds of age and not based on what was agreed upon, i.e. gains and how the child is progressing with the program, when the contracts were offered to these families and signed as a binding agreement.
(3) There is an obvious miscalculation between the $8,000 dollar one time support and the two years wait for the new program to officially begin. IBI is 20 hours a week and with my basic math skills it tells me that a child at least needs $81,120 for those two years to have an effective IBI program (assuming that the rate is current at $39 per hour, which is the MCYS/AIP rate for Direct Funding Option x 20 hours a week x 52 weeks in a year x 2 years). This amount does not cover transportation fees and any materials needed for the IBI therapy. The $8,000 one-time offer is an insult to the children who have waited for years and who are still waiting for a program that is still up in the clouds.
(4) It was also mentioned that “The funding can be used to purchase eligible community services and supports during the transition to the more flexible and intensive autism program that better meets their needs.” (MCYS, Ontario Autism Program, 2016, n.p.). Unfortunately, this will bring more disadvantages to children in the rural areas who have little or no access to community supports. It is obvious that when this New Ontario Autism Program was created, it was not considered about how location is a significant factor towards getting community services and supports.
Significantly, in any case that the MCYS has a some sort of historical amnesia, we can help them recall and realize why many children who are aged five years old and above are in the IBI waitlist or were held in the waitlist for a long time before they were picked up for funding.
The children five years old and above “aged out” of the MCYS IBI services not because of their willing, but because how the bureaucratic and corrupt system constructed this problem. The Auditor-General’s (2013) report News Release mentions that “due to long wait lists, Ontario children do not typically start IBI until almost age 7” (Auditor General Ontario, 2013, p. 1).
After the ADOS, families had to submit ourselves to the various gatekeepers’ mechanism such as the eligibility test, to determine whether the child is qualified and this is performed by the contracted nine regional Autism Intervention Program (AIP) providers or lead agencies in Ontario. When a child on the autism spectrum is determined to be eligible for IBI program and funding, children and families are and were asked to have patience and wait for our turn to be serviced. However, with the 29 March 2016 MCYS announcement, the government penalized children and families for being patient. If patience is a virtue and one of the first things we teach our children is to wait for their turn, I just could not understand why the MCYS and the government are penalizing children and families for being patient?
Furthermore, a significant question would be: why the children with autism properly diagnosed and found eligible for IBI funding were not served sooner? Why there is a waiting list of children waiting for IBI services in the Province? The Auditor-General Report (2013b) manifests the intense corruption within the system. There are so many wastes of money and resources. Furthermore, there is also a conflict of interest in the nine Autism Intervention Programs (AIPs) or lead agencies in the Province (The Star, 2013). The AIPs, in capitalist mechanism, are the “middlemen” that are delivering the services created by the MCYS for some children who are diagnosed and found eligible for IBI services. These AIPs also run centres which are considered Direct Service Option (DSO) centres. Another option is the Direct Funding Option (DFO) where families can choose a private team of providers to work with their children. In the 2013 Auditor-General’s report, it was mentioned how so much power is given to these lead agencies despite the reports of corruption. If the MCYS is really investing 333 million dollars for children on the autism spectrum, why do need to maintain the “middlemen” and not give these amounts to children who really need it most. The case of Alberta as a Province which has no waiting list for children on the autism spectrum needing services is a testament of how DFO can really serve the children more (CBC News, 2006; Gordon, 2015). If the MCYS wants to ensure that children and families get the service they need, then a healthier competition among private providers should proliferate and not intervened by a conflict of interest from lead agencies. In that way, the MCYS will instantly resolve corruption as stated in the Auditor General’s (2013b) report and also, can claim that by now there will no longer be any wait lists, and not by 2021, as the MCYS mentions in their webinars, “by 2021, [their goal is] to achieve average wait times of six months or less in the new autism program” (MCYS, 2016b, Slide 12, words in brackets mine).
Based on the discussion points and questions, I have raised above, I can firmly argue that New Ontario Autism Program announced by the Ministry of Children and Youth Services last 29 March 2016 and will be implemented in May 2018, is a violation of the basic human rights of children with disabilities and a mockery of science, the science of Psychology and of Applied Behaviour Analysis.
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