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We are blogging each section of our Report and Recommendations to the Ontario Government’s Autism Advisory Committee. Read the full report here: Ontario Recommendations- Inclusion is the New Gold Standard

The problem of “feel-good” autism spending
There is an industry around autism services. Unfortunately, many in that industry are unscrupulous in seeking maximum profit by frightening parents into expensive, unsustainable treatments that have no real basis in evidence.

It is sometimes easy for them also to convince politicians to rubberstamp investments in such programs because of the “feel good” effect. This kind of spending can make a busy politician feel as though they are doing something to solve a problem without much effort or critical thinking, nor the political will to assess/audit its effectiveness. To put it colloquially, these politicians are throwing money at a problem in hopes of making it go away (or making a powerful lobby go away) until the next election. There is also the potential issue of pork barrel for some who have “treatment” centres in their ridings.

That approach to autism policy is extremely unfair to autistic people and their families, yet it has been a trend in Ontario politics. We are hopeful that our current government can address these problems and, through meaningful audits, create a better way forward.

The silo’ing of autism policy
Under the former government, autism policy was administratively siloed into the Ministry of Children and Youth, meaning little to no policy was focused on adults. The word “autism” rarely appears in provincial or federal government policies other than those targeting children and youth. The former government even used the term “pay now or pay later” suggesting that investments in programs targeting children have more inherent worth than supports for adults, (callously called the “pay laters”).

We are glad that our new provincial government is committed to autism services under multiple portfolios, a step in the right direction. This will not only reflect the reality that autistic people well,…grow up and become adulty-people for many decades, it helps to keep an eye on cheques and balances to ensure programs are running fairly, with equity across the demographic spectrum—and that they are economically sustainable.

Who Regulates ABA?
We have grave concerns over the suggestion that BCBAs strike a “self-regulatory body” to keep an eye on other BCBAs. This is equivalent to the foxes guarding the henhouse, in our view. Some self-regulating bodies can arguably serve to cover up misconduct rather than provide appropriate enforcement and we believe that is what could happen here.

There is incontrovertible evidence that the profession of ABA doesn’t just ignore abusive practices among its own members–it endorses them. For example, the Judge Rotenberg Centre, an ABA designed and run centre, has been using shock torture on autistic and IDD people, a practice which has now been banned by the FDA and is classified as torture by United Nations watchdogs. Yet the Association for Behavior Analysis International (ABAI) decided to feature the Judge Rotenberg Center (JRC) at their 2019 annual conference. As the Autistic Self-Advocacy Network writes:

“ABAI’s decision to give JRC a platform at their conference reflects a continued pattern of complicity in the torture of the very population that they claim to serve. Furthermore, the JRC’s presentation at this conference specifically focuses on the ‘merits’ of the electric shock device. This means that ABAI is more than complicit in the abuse taking place at the JRC: they are actively endorsing these practices.”

Any new regulatory bodies for ABA should be completely independent and arms-length from the industry, with no members of the industry represented in any advisory or decision-making capacity.

Oversight in Autism Services
It is crucial to have adequate oversight of funded “autism service” umbrella organizations to detect conflicts of interest, misuse of funds, sweetheart deals, pork barrel and service monopolies–as well as to assess the relevance, utility and fiscal responsibility of the programs our government is funding. Unfortunately, some organizations have profited from attaching the words “autism” or “children” to their brand as a way to avoid the type of scrutiny we expect of other businesses. Let’s put a stop to it.

On a related note, the government should ensure that all autism lobby organizations who handle money file appropriate financial statements annually, as this is currently not happening. What money comes in, and from whom, is a very important factor in assessing the recommendations of any lobby group.

We know that reforming autism services is, in part, about changing how politics works. We are encouraged by efforts in other jurisdictions, notably Scotland, to ensure that end-users (aka: autistic people) are consulted as a matter of course and measures are taken to curb any conflicts of interest. We are also encouraged by the Ontario government’s efforts to offer audits to previously under-audited areas of service. This is a good step towards ensuring that services are relevant, spending is sustainable, industry influence is curbed and conflict of interest reduced.

Recommendations

• Undo the former governments’ silo-ing of “autism services” into a single portfolio by integrating the needs and interests of autistic people into all relevant portfolios.
• Follow the lead of Scotland, who has made it law that autistic people be consulted when the Government crafts autism policy, in perpetuity.
• Financial auditing and oversight of all organizations offering “autism services” to prevent skimming, sweetheart deals, pork barrelling, price-gouging, monopoly, pseudoscience and unsustainable service models.
• Do not endorse the establishment of a “self-regulating body” of BCBAs.
  • True regulation of ABA can only happen via outside oversight entities, comprised of individuals not working in the profession. Those entities should be leveraged rather than wasting resources on a new one that may only serve to stymie enforcement.

 

We are blogging each section of our Report and Recommendations to the Ontario Government’s Autism Advisory Committee. Read the full report here: Ontario Recommendations- Inclusion is the New Gold Standard

DEFINITION: AAC
Augmentative and Alternative Communication (AAC) is any means of communication–aside from verbal speech–that allows someone to use language. AAC is used by people with various disabilities, including some autistic people. It can include:

• Pictures
• Gestures
• Sign language
• Visual aids
• Speech-output devices like phones or iPads

AAC Access in Ontario
Communication is a cornerstone of learning. One of the biggest steps our province can take for autistic children and youth is to prioritize access to AAC for non-verbal and partially-verbal students.

AAC gives these students an essential tool for communication and regulation, leading to a fulfilled life as a child and in adulthood. It also opens the door to many opportunities and the kind of autonomy that every person deserves.

Unfortunately, studies show that many schools and IBI centres wait far too long to give access to AAC. Ontario should lead the way in removing that barrier to communication.

Testimonials
Below is a testimonial from one of our members who needed AAC by did not get access to it until he was an adult. Derek Burrow now works as an information specialist for a major library in Ottawa:

“When I found AAC it was like throwing a drowning person a lifeline. It has changed my life. I was able to get employment supports through ODSP; they set me up with an employment support worker who helped me find and apply to jobs…I went from minimum wage, followed by unemployment, to a full time job where I am constantly getting praise for the quality of my work.

“I didn’t change. My skill set didn’t change. My work experience didn’t change. The way I look and act didn’t change. The only thing that changed was how I communicate. And, yes, part of that was also being taught how to properly communicate in a job interview. Instead of fighting to make cogent responses, I was able to sit down and just let my brain say its piece with my mind getting in the way. I aced my job interview and here I am now. I cannot stress enough how big a difference AAC has made for me.”

Deanna Shoyer, a Hamilton-based parent of a 12-year-old in Ontario public schools also wrote to us:

“AAC in its broadest sense (including visual supports like calendars for example) has made it possible for my children to thrive in an inclusive school environment. It is an essential element for inclusion to succeed.

“Fostering inclusion is not just the right thing to do, I believe it’s the most efficient way to support disabled people. In education, it lifts the academic performance and happiness of all kids, not just disabled ones. Growing up included in the community and given tools to succeed (like AAC) results in disabled adults who are less likely to rely on public assistance like ODSP.”

A parent from Scarborough, Cathy Wright, wrote:

“I have a 23 year old son, who is a non-speaking autistic man.  From early childhood, he was presumed incompetent at school.  As parents, we were given very poor professional advice. We were not told that a communication system might change our son’s life. … At 17, a support person who had experience with Supported Typing (a form of AAC) offered a letterboard to my son and we began having the first conversations with him ever.  We learned that he was a polite, empathetic, sensitive, funny kid who was interested in art, politics, world affairs and travel.

“If you’re inclined to think that a non-speaking autistic person who is discovered to have the capacity to think, learn and communicate in a sophisticated way is a miracle of some kind, know that we have met well over twenty people just like my son, who are using Augmentative & Alternative Communication devices to direct their own lives.  Yet the vast majority of non-speaking autistics are trapped inside their bodies with no communication tools.  They are institutionalized in high numbers.  Their support in school is primarily behaviour management.  Why not instead offer communication tools?”

As A4A member Ren Everett, wrote, when assessing a child for autism, professionals should be required to:

“take into consideration whether or not the child is speaking, and if not, communication-based treatment should be the very first thing they receive, as opposed to behavioural therapy.”

Jim Meunier, an AAC user from Coldwater Ontario discussed the need to recognize AAC for inclusion in society:

“Protecting the rights of autistic AAC users to communicate and be heard in the education system, in our workplaces, housing and healthcare, is pivotal to recognizing our full and collective participation in these areas.”

Problems and Challenges
Some parents worry that giving an AAC system to their child will prohibit the development of verbal speech. However, research shows that this is not the case – in fact, the opposite is often true. Access to AAC encourages all types of communication.

Many teachers and staff do not understand AAC and they need education on how to communicate directly with AAC-using students.

Other teachers do not know which type of AAC system is appropriate for a student, or they may not advance a student to a better system because of school administrative/appropriations issues.

Teachers may also implement a different system than the student uses at home, which is a mistake.

Some therapists hold back on providing AAC trying to “force” the child to talk. This is cruel and it must be ended. Any “therapy centre” taking this approach should be de-funded by our government.

There are also still preconceived notions that nonverbal people lack basic competencies, so nonverbal children who could thrive in a mainstream classroom with AAC are too often tracked into special education, with lifelong consequences.

Autistic children and adults may not have the type of AAC system that meets their needs, due to arbitrary guidelines based on age/years instead of changing development, needs and technologies.

Recommendations:

• AAC access for all who need it, without delay.
• Education programs for healthcare providers, teachers and others in the community so that they can communicate directly with their patients/students/clients who use AAC.
• Base funding for new acquisitions on changing communication and developmental needs rather than an arbitrary “5-year” timeframe.
  • If time-limit on AAC funding doesn’t change, allow families to use SSAH funds or other benefits to upgrade hardware or software when communication needs change.
• Train more SLPs that specialize in AAC.
• Teachers and other support workers need training to be effective AAC communication partners.
  • Schools should not be introducing an AAC app at school that is different from the one being used at home.
• Provide consistency across the province in terms of SLP clinics: which age group they serve, who can refer, what the diagnosis is.
• Press the federal government to remove HST from iPads prescribed as a dedicated communication device, to improve access.

We hope our province will create a mandate for AAC access, and education to ensure that all people who work with students understand and respect AAC. If you would like to connect with any of our AAC-using members, or members of our parent auxiliary, please Contact us.

We are blogging each section of our Report and Recommendations to the Ontario Government’s Autism Advisory Committee. Read the full report here: Ontario Recommendations- Inclusion is the New Gold Standard

Diversity of Services
Sadly, segregation of autistic preschoolers is the norm in some regions of Ontario, where they are streamed into full-time “intensive” ABA centres that remove them from their peers, even as their neighbours are developing the beginnings of lifelong friendships.

When the children go to school, in some sense their lot is already cast. The autistic children, having spent their days in ABA centres, are not familiar with the social world of their peers and likewise the neurotypical children are not used to including autistic peers in play. Segregation in the early years is thus a setup for more segregation in school years, when autistic children are stigmatized as outsiders within their own community.

This is in contrast to countries such as Scotland, who do not generally use segregated facilities for autistic preschoolers and have lower rates of special education referrals in the school years as a result.

Families Who Did it Differently
There are families in Ontario who chose not to put their children in the centres. However, under the former government, there was no funding for alternatives to ABA, such as developmental therapies (e.g., RDI,  DIR Floortime) or programs like the SCERTS program , or even services like Occupational Therapy (OT) and Speech Language Pathology (SLP).

These families were sidelined from funding and sometimes even stigmatized by schools—some paying out of pocket for services that helped their children. Some families also home educate their children because they don’t want ABA-mandated EAs for their children at school and no alternatives or flexibility are allowed at their local schools.

Although a fraction of the cost of ABA, alternatives to ABA were only available to families with disposable income to pay out of pocket, since the former government did not fund them. Families without the means to pay for these crucial services were left to DIY their children’s services or move to another province.

Testimonial
Two of our parent auxiliary members (married), who chose to remain anonymous, spoke of their efforts to include their son in the community by choosing different services than the IBI centre.

“We were told to send our son to an ABA centre. They said that he would never learn life skills without it. When we visited the centre we didn’t like what we saw at all. Then we learned that there was no funding for the services he did need, like OT and SLP. We were lucky to be able to pay out of pocket for them.

“By the way, he learned all his life skills [without ABA]! We hope the province will understand there are different ways than ABA and they work. I hope they will fund services like OT and SLP for families who can’t afford them. They should be given a chance because they work.”

Problems and Challenges
There are many families in Ontario who have wanted choices other than ABA. They have been wrongly stigmatised for making those choices by being told ABA was the “only evidence-based” method.

Also, many were unable to get enough of the supports they needed due to the funding monopoly of ABA services, where it was the only service covered. Families with wealth had good coverage –and non-wealthy families had to DIY, got patchy service, or even do without.

Some families ended up choosing ABA because it was their only “affordable” option since the government would cover the costs which, ironically, are higher than alternatives to ABA.

Services like OT and SLP typically do not mandate full-time, institutional settings but are done clinically, at far less expense than IBI. It would save parents and taxpayers money to explore alternatives to ABA.

It is also the right thing to do, because families deserve the right to make choices other than ABA.

Solutions

• End the ABA service monopoly and fund AAC, OT and SLP for autistics of all ages, as needed. Educate developmental pediatricians in the province on the benefits of these services and where/how to refer for them.
• Explore alternatives to ABA such as the SCERTS model and others (Halton School District has recently done SCERTS training).
• Consult with nonspeaking adult autistics and those with high support needs about what needs to change for autistic children with high support needs.
• Promote community inclusion of autistic children through an awareness campaign in partnership with the private sector.
• Study best practices in Scotland, England, Ireland and other jurisdictions who use alternatives to ABA.

 

 We are blogging each section of our Report and Recommendations to the Ontario Government’s Autism Advisory Committee. Read the full report here: Ontario Recommendations- Inclusion is the New Gold Standard

Within Ontario school boards, there is a lot of discussion about diversity and inclusion but rarely is it applied to disabled students. As Sheila Bennett, Education professor at Brock University states: “Those terms seem to apply to a lot of populations, just not this one.” Professor Bennett is the co-author of the excellent 2018 report If Inclusion Means Everyone, Why Not Me? which focuses on the unmet needs of disabled students in our province.

Ontario schools are some of the most segregated in North America for autistic children. This comes at a social cost: kids that are streamed into special ed have less opportunity to live up to their potential and are more likely to end up in segregated living and work settings in adulthood. Inclusion (when done right) creates opportunity for youth as they transition to adulthood. Ontario should follow the example of New Brunswick and break the cycle of segregation.

Problems and Challenges
Ontario’s autistic and IDD students are routinely segregated from mainstream students at lunch, recess and many school activities–and too often they are even excluded from attending school at all. Some autistic and IDD children are denied the right to attend and receive an education for days, weeks or in some cases even permanently.

A report by People for Education from 2014 showed that 1/2 of principals in the Toronto District School Board had phoned parents some mornings and told them to keep their children at home in part because there were not enough support workers that day. In a 2018 study, People for Education reported that 2/3 of their survey respondents report their IDD or autistic children being excluded from field trips and extracurricular activities and 1/3 reported that their child didn’t have access to an educational assistant when they needed one.

A survey by ARCH Disability Law Centre found that many students are excluded from school, with no official tracking or due process. According to Renu Mandhane, Commissioner of the Ontario Human Rights Commission, in 2017-18: “25% of parents reported being told not to bring their child to school, while more than half (54 per cent) said their child had to leave school early on a regular basis.”

Internal segregations—where autistic students attend classes but are excluded from recess field trips or the social environment of schools, is also endemic in Ontario schools.

When a stigmatized student “acts out,” they are often swept into the special education setting instead of administrators making simple, helpful changes to the learning environment.

Simple changes to the design of classrooms, such as a “quiet chill out” area (open to all), changing the lighting and adjusting acoustics in a room make a world of difference to many autistic students. Neurotypical students benefit from these changes as well. Sadly, as of this writing, these kind of accessible design choices are being made on an ad hoc basis by individual teachers, without any broader institutional commitment or planning.

Recommendations
Universal Design in Schools (the New Brunswick Model)

• For public schools, follow the model of New Brunswick, whose government led the way in 2010-2013, implementing universal design for learning, integrated services between departments, and a new policy for inclusive education along with modifications to the Education Act, through Policy 322.
  • NB has also transitioned away from the remaining contained special classrooms within schools.
  • This Integrated Services approach received national and international recognition as a model for transitioning to inclusion.
  • In the words of former NB Education Minister Jody Carr, “Policy 322 ensures that inclusive education is not a simple program or add-on.”
• AAC access for all who need it at school, without delay. Education for all staff on AAC so they can communicate with the student, not just with their EA.
• Amend the IPRC (O. Reg. 181/98) process to require students with disabilities to be placed in a ‘common learning environment’ as envisioned in New Brunswick’s Policy 322.
  • IPRC should also require school boards to adopt special education plans that are driven by an inclusive philosophy with the goal of placing disabled students in a common learning environment with other students.
• Develop an appropriate and comprehensible dispute resolution mechanism for all matters related to the education of students with disabilities, so families are heard.

• Modify the regulatory provision that allows a school board to shorten a student’s school day (O. Reg. 298 s. 3(3)) to require that it only be used when it is in the best interests of the student, with 2-month review to ensure it is still needed.

• Procedural protections for students who are excluded via s. 265(1)(m), giving families similar appeal rights as those available for suspensions and expulsions (see: Part XIII of the Education Act).
• Remove PPM 140 (2007) and allow families to use classroom support persons other than the districts’ unionized ABA providers. Industry bullying and antiquated union provisions should not be dictating whether students can attend school with the right supports for them.
• Assess learning outcome measures and think outside the box. Consider alternative measures of success, per the model of New Brunswick.
• Remedy the problem of internal exclusions. Autistic children should be included in recess and field trips, with appropriate support persons to ensure they have the same access to these developmentally-enriching activities as other children. (They currently do not).

 

We are blogging each section of our Report and Recommendations to the Ontario Government’s Autism Advisory Committee. Read the full report here: Ontario Recommendations- Inclusion is the New Gold Standard

Lack of Transparency Means More Abuse
According to a report by the Ontario Human Rights Commission, the province’s special education system has not changed significantly in 40 years. Special education classrooms in Ontario have many of the hallmarks of the institutional days: including restraints, isolation and systemic exclusions.

The Province and school boards currently lack meaningful tracking mechanisms to stop abuse. There is no publicly-accessible record of the number and degree of instances of isolation, restraint, sexual assault, exploitation and other abuse in Ontario schools and other institutions.

There are also no uniform codes across districts for tracking these.

Ontario school boards and other agencies also do not tend to share data nor report on general conditions; overall, they lack transparency. We were told by several government departments when we asked for statistics about abuse that “the content of individual complaints are private”; however, this explanation does not in any way address the dearth of general statistical data on this issue in our province.

By contrast, countries such as the UK keep records of complaints and even require workers to report the incidence of events such as the use of restraint. Because they do so, the UK is able to notice trends: for example, the recent spike in the use of restraints there could be reported in the media and acted on. This is not currently possible in Ontario.

Neglect is also a serious human rights issue that is not tracked. Within the special education classroom, lack of access to the outdoors, free play and physical activity is all too common. As one mom of a 6-year old autistic boy in a Scarborough school reports:

“I found out at the end of the semester the teachers had kept my son and his class indoors for recess every day since January, because they didn’t want to do recess monitoring. They gave the kids iPads to play with and never went outside once.”

The use of isolation rooms, which were recently banned in Alberta and should be merely a nightmare from the past in our province, is increasing. When Sheila Bennett a professor at Brock University in St. Catharines, learned of more school districts in Ontario building more seclusion rooms, she said:

“It really horrifies me…When an isolation room exists, it becomes a viable alternative for behaviour and inhibits our ability as experts and educators and compassionate people to find solutions that work better.”

Testimonial and Case
(cw: child abuse)
There is no excuse for the abuse that autistic and IDD students face. They are often afraid to tell their parents what is happening and in some cases can’t communicate enough of the details for therapists or parents to understand and take action.

One woman from Eastern Ontario spoke to us about her daughter (who is physically disabled) being confined for the convenience of staff in her classroom. A fellow student took a cell phone video of the incident and when confronted, school administrators demanded to know the student’s name so they could discipline her for having a cell phone in class!

In Peel District (Ontario) a family is suing the School Board for placing their autistic son in an isolation room frequently, sometimes for the entire day. According to an investigation by Toronto Life, his first and second grade teachers “confined him to a small room the size of a walk-in closet, with concrete walls and no carpets or padding.

“Teachers would sit on a chair in front of the door to prevent him from leaving, and they covered the small window of the room with construction paper, blocking out the light. ‘If I kept acting up in the room,’ said Christian Thorndyke, ‘they’d add on more time.’ If he had time left over at the end of the day, he was told he’d need to return to the room the next day.”

“At a new school in the same district, 9-year-old Christian was also isolated, despite a letter from his therapist asking the school to stop. Christian often begged for food or water, or to use the washroom, and was ignored. Once, he urinated on the floor; he says he was given a mop and told to clean it up. One day, the stress and humiliation became overwhelming. Christian broke down. He wrote on the walls and began choking himself with his hands.”

With parents banned from many special education classrooms and some teacher groups fighting against cameras in the classroom, there is no transparency. Without transparency, more abuse happens.

Recommendations

• Make existing special education classrooms transparent, to prevent abuse.
  • Have cameras in all special education classrooms to keep instructors and staff accountable (cameras-in-classrooms program).
  • Make it illegal for a special education program to ban parents from entering the classroom (as many programs do now).
    • Create an environment where families are welcome as partners in education, not “outsiders”.
  • Put teachers and aides on notice: there is no excuse for abuse or neglect.
• Implement universal systems (and codes) for tracking the following:
  • School exclusions (modeled on New Brunswick’s new Attendance Tracking Tool)
  • Use of restraint
  • Use the data to develop better approaches, to prevent exclusions and restraint.
• Ban isolation rooms in schools, as the Province of Alberta has done..
• Review human rights policies for our prisons. If anything is currently allowed to be used on children in a school that is not allowed on inmates: ban it.
• Educate all teachers and staff on trauma-informed care and appropriate de-escalation techniques, per best practices in other jurisdictions (for data and helpful resources, contact Inclusion Alberta or Inclusion BC).
• Consult with autistic youth in special education and with autistic adult who were in special education about what needs to change in our special education classrooms.