2018 Human Rights Report to the UN: Introduction

NOTE: We have split our UN report on Human Rights for Autistics in Ontario into sections and are blogging them. This is the intro. 

Introduction
In this report, we discuss current human rights abuses against autistic Canadians. We start with a history of autistic life in Canada and a discussion of issues in data collection, then move on to our areas of focus. We will focus most specifically on Ontario (where we are based), with some data from other provinces and territories.

Our areas of focus are: schools (exclusion, restraints, isolation rooms); medical settings (lack of consent, inaccessible care); employment (access, exploitation in sheltered workshops); and housing (the impact of poverty, abuses in group/residential homes).

We write this report with a keen awareness of how intersectionality (the interconnected nature of social categorizations such as race, class, gender and neurotype) deeply impacts our lives, as well as the impact of trauma and the need for trauma-informed best practices in schools, medical settings, housing and social services.

Appendix 1 contains a list of institutions you may wish to contact and visit when you are here because they have been the subject of human rights complaints or are otherwise referenced. [redacted from online version]

About us
Autistics for Autistics Ontario (A4A) is an autistic self-advocacy organization. We are autistic youth and adults from a range of professions and backgrounds, advocating for the rights of all autistics in our province.

Since our founding a year ago, we have become involved in campaigns on issues such as: sheltered workshops; schools and housing; access to medical care; abusive “treatments” on children; violence/murder by caregivers; sexuality education; autism acceptance; and the need for Canadian policymakers to consult autistic people in the decisions that affect our lives.

For more information about A4A, please read our Annual Report (attached).

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2018 Report to the UN, pt.1: A Brief History of Autistics in Ontario

NOTE: We have split our UN report on Human Rights for Autistics in Ontario into sections and are blogging them. This section provides some historical background into the barriers we face today.

A brief history of autistics in Ontario: The residential institutionalization era
In the first half of the 20 century, Canada institutionalized many IDD and autistic people. Under the medical model of intellectual disability, many families viewed institutionalization as essential and very few parents had the good sense to keep their children out of institutions.

In residential institutions, abuse was common and there were no genuine systems in place to prevent it. Indeed, it can be argued that abuse was built into the institutional model, where an unachievable level of compliance was demanded from all residents. Residents were not allowed freedom of movement, were forcibly committed/or lacked any means to live freely, were overly-medicated with extreme drug regimes, were abused physically, sexually and emotionally and were forced to do unpaid manual labour to earn profit for the institutions under the auspices of “training”.

For autistic residents, PTSD and a host of so-called “behaviours” resulted from these experiences. These behaviours, which communicated the very inhumane conditions under which residents lived, were received with further punishments from institution staff. This pattern of abuse led to a lifetime marked by fear and pain for autistic and IDD residents. As autism historian Steve Silberman writes, “Behaviours caused by institutionalization under brutal conditions were then viewed as part of the ‘natural’ course of autism.”

The institution at Huronia, located in rural Ontario, is an example. Huronia was opened in 1877 as a “home for the feeble minded”. In the early years, residents lived and slept in wards with as many as 50 residents; in the 1970s, the facility was divided into smaller units with 12 residents living side by side. Beatings, isolation, restraints and humiliation were a part of everyday life. Forced sterilizations were routinely performed, despite it contravening Ontario law. Patients were forced to work for no wages in farming and piecework. Due to this practice, the institution ran at a profit. Most residents did not have the freedom to leave the institution; at first due to commitment laws and later due to poverty, fear and other factors.

Except for schooling or outings, male and female residents did not interact. However, male attendants had unregulated access to both female and male residents. As the later class-action suit documented, rape was endemic at Huronia.

In the early 2000s, Huronia was the subject of a $35 million dollar class-action lawsuit over the allegations of widespread physical and sexual abuse. The lawsuit brought new information to the surface and was a moment of reckoning for Ontario’s institutional system. The lawsuit was fully settled in 2013 and included apologies from the governmental parties under whose watch the abuses occurred.

In March 2009, the Government of Ontario officially closed the last remaining institution in the province. A period of “de-institutionalization” in Ontario followed, where the government re-introduced institutionalized persons to the community. The period included the birth of a vibrant Community Living movement, which still exists today – advocating for independent living, free of institutionalization and free of poverty.

In the 1980s, disability became a protected category under the Canadian Charter of Rights and Freedoms. Very slowly, policy has begun to turn towards an accommodation model of disability and away from the medical model. In March 2010, Canada ratified the UN Convention on the Rights of Persons with Disabilities (CRPD). The CRPD commits Canada to a series of measures and principles to improve the social and economic condition of people with disabilities while taking steps to improve their legal and political rights.

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2018 Report to the UN, pt 2: The Institutional Mindset in Autism Services in Ontario

NOTE: We have split our UN report on Human Rights for Autistics in Ontario into sections and are blogging them. This section builds on pt.1 (History) to discuss how services today relate to those of the residential institution era.

Present-day: The Institutional Mindset in Autism Services
Although our province’s institutions were closed down, an institutional mindset migrated to the non-profit organizations that now work with IDD and autistic Ontarians.

For example, although Huronia’s farm –where residents would labour without pay—was closed down, it was replaced by farms and factories in the community who collaborated with non-profits to run “sheltered workshops” where IDD and autistic workers help companies turn a profit by working for pennies per hour. And the promise of true housing independence has not come to pass for many autistic and IDD Ontarians, who languish in group homes that foster the same punitive approach towards residents that institutions did.

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. As one parent told us: “the fact that we choose whether or not to sign a ‘do not restrain’ option at schools each fall is pretty messed up.” Where other jurisdictions are building on concepts of inclusive design to make a safe and welcoming environment for autistic students, these classrooms do not exist in Ontario, save the ad hoc efforts of a few teachers usually spending their own money.

There are nearly four million Canadians with “physical, sensory and cognitive impairments” (about 14 per cent of the Canadian population). Yet we have not been allowed to fully “integrate” following de-institutionalization Instead, many of us lack access to employment, education, housing and adequate medical care. This segregation comes at a huge cost to our mental and physical wellness, as well as our safety.

Autistic people are more likely to be victims of hate crimes, sexual assault and other violent crime. Autistic children and adults are also some of the main victims of violence within schools and group homes. And parents have committed filicide against autistic children in Canada. This abuse is reinforced societally when we are portrayed as burdens on parents, and on society. The research focus on finding an “autism gene” – which would mean parents could discover and abort autistic fetuses – is also a human rights issue. We are deeply concerned about eugenics and its frightening impact, demonstrated currently in Iceland, where parents abort nearly all fetuses screened as having Downs syndrome.

The title of a recent Government document on autism and early interventions used the phrase “pay now or pay later” to describe our life course. The phrase belies the bureaucratic idea that those autistic adults who don’t earn a living wage are merely a burden on the tax system, rather than people with thoughts, feelings, needs and ideas. It is stunning in 2018 that Canadian policymakers would use this approach – and that they would develop any disability policy without consulting the group the policy is supposed to serve.

The institutional mindset is part and parcel of the non-profit autism services model across Canada, which too often marginalizes our community from involvement and consultation, keeping us – and the information we need to share – siloed from the broader discussion. Although there has been some progress in this area, it is still too common for nonprofits to endorse statements like “I am my son’s voice,” or for reports to contain mostly the musings of CEOs and therapists but no autistic voices.

For example, a recent campaign (for national ABA) claims “to speak up for the kids who can’t speak for themselves.” Autistic and disabled people of all ages can express what we need through a variety of communication platforms. And we are saying: don’t speak for us.

In Ontario, many service providers’ approach to autism still follows the medical model of autism, attempting to “fix” behaviours rather than understanding behaviour as communication and then responding to the message (the social model). The medical model, based on the same ideologies that informed our residential institutions, trickles into the broader society. It translates into abuse and exclusion. It hinders good policy. It also creates a code of silence about abuse.

Read the full report

2018 Human Rights Report to the UN, pt 3: Issues with Record-keeping and Reporting Mechanisms in Ontario

NOTE: We have split our UN report on Human Rights for Autistics in Ontario into sections and are blogging them. This section discusses issues of data collection in Ontario. 

Issues in data collection: If there is no record of abuse, how can you stop it?
Ontario and its school districts have generated a number a lot of statements and guidelines about disability inclusion, but the Province and school boards lack  meaningful tracking mechanisms for how autistic/disabled students and residents are actually being treated. 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. Ontario school boards and other agencies 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.

Because our government does not adequately track abuse within or across systems, perpetrators are able to re-offend. One recent example from Barrie, Ontario: a teaching assistant was convicted of attacking an autistic student and breaking his leg. He served time in prison and was out on parole when he was hired by a home care company to care for autistic youth. Months later, he was arrested for hitting a client across the head and face with a metal water bottle. Our Province has no reliable record-keeping or communication system in place to prevent violent offenders from being hired into home care or other settings –nor adequate enforcement policy for agencies who make these placements.

There are ways to prevent these incidents and there is no excuse for Ontario not to have appropriate systems in place.

Within our government, conversations about IDDs and autism tend to dwell within “safe” territory such as inclusion and diversity statements, but avoid discussing physical abuse and other human rights violations. We need to ask: why is this? How can we change the culture to one of accountability and fairness?

In addition to a lack of core data on abuse, the needs and circumstances of autistic Ontarians have not been meaningfully studied. in fact, there isn’t even a basic demographic picture of autistic people here other than “1 in 66”. Research into our economic and social realities is essential to inform any useful policy. Put simply: policymakers have to talk to us, and they haven’t. This disconnect is one factor behind failed policy such as the Ontario Autism Plan, a $500 million project rolled out last year without any consultation from the group it is intended to serve: autistic people.

Read the full report

2018 Report to the UN, pt 4: Ontario Schools – Segregation and Exclusions

NOTE: We have split our UN report on Human Rights for Autistics in Ontario into sections and are blogging them. This is our section on exclusions and segregation in Ontario schools.

Schools: Segregation and exclusions
While special education programs have made progress in many countries, in Canada there has been relatively little change in the structure, methodology and mentality of the education setting in the past 40 years. Ontario special education students are routinely segregated from mainstream students at lunch, recess and many school activities. School exclusions are also common, where 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.”

These exclusions are given for a range of reasons, from “behavioural” issues to, more commonly, schools not having unionized aides available to help in the classroom that day. The union has forbidden outside workers in the classroom: so when families offer to bring in their own aide worker, the aides are kept out. As one mom put it: “In the US, my understanding is that kids can have their own support person but this private person isn’t allowed here and the board won’t provide one, so it’s a hopeless situation sometimes.”

Ontario schools do not have a uniform approach or training on AAC and other communication methods. “I want to be in school but need a facilitator,” writes a member whose aide was not allowed in the classroom in Toronto. The government also doesn’t support continued education beyond age 21. Yet continued education is key for many autistics, speaking and non-speaking, in Ontario.

Under Ontario’s new $500 million autism plan (OAP, 2017), only ABA-trained support workers are allowed in schools. Some families are pulling their children from Ontario public schools and paying out-of-pocket for evidence-based non-ABA services – services that are funded without issue in other jurisdictions. A father shared: “We are forced to homeschool our son because they won’t let us use a non-ABA support worker. [The PSW] is absolutely wonderful and knows him well but they wouldn’t let her into the school.” A member who has worked in schools notes: “There are professionals working in schools who don’t support ABA, but aren’t free to say so if they want to keep their jobs.”

Much like the bureaucrats in the era of residential institutions, the architects of the current provincial “autism plan” made a massive investment without consulting the people it claims to serve. When autistic individuals, parents and therapists brought this concern up at a March 2018 Tele-town hall with the Ministry of Children and Youth, the visibly irritated Minister cut their questions off. We wondered where this one-sided approach came from. We looked a bit and learned that the market dominance of ABA/IBI is rooted in ABA/IBI investments in the provincial budget in the early 2000s and picked up strength in 2017, when the Ontario Association for Behaviour Analysis hired Pathway Group to lobby eight Ministries at Queen’s Park and effectively shut out most stakeholders from the funding discussion.

Within the special education classroom, lack of access to the outdoors, free play and physical activity is a problem that is not being addressed by districts or the province. As one mom of a 6-year old autistic boy in the GTA 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.”

Oftentimes, it comes down to who is watching and whether a parent has the strength to go against a Board and try to take action. A child in the York Region School District was denied the right to use the toilet and forced to wear a diaper, as well as restrained in her wheelchair by Grade 2 teachers who didn’t “have time” to take her to the washroom or ensure her safety in her wheelchair. As a result, she began to hate her wheelchair, which is essential for her mobility. Her mother switched her to a new school (a common workaround when a Board won’t take action), and there the teachers made the time to offer her proper supports.

Within our school boards, IDD, autistic and/or disabled students are often lumped into a broader discussion of “diversity” when in fact their needs are unique and require distinct attention that they are not receiving. Speaking of “inclusion” and “diversity” in Ontario schools, 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.

Read the full report

2018 Report to the UN, pt 5: Ontario Schools – Use of Restraint and Isolation Rooms

NOTE: We have split our UN report on Human Rights for Autistics in Ontario into sections and are blogging them. This is our section on restraint and isolation rooms in Ontario schools. 

Restraint and isolation rooms.
As far as we know, there is no provincial or federal organization that tracks the degree and frequency of restraints and isolations in special education classrooms. In fact, it appears most studies of autistic youth by the government and autism non-profits avoid discussion of this issue. What we hear from our members, from caseworkers and from families (as well as media accounts) is that violence, especially restraint and isolation, is common, and increasing.

Regulation is completely inadequate. Medical and other organizations publish “guidelines” on the use of restraint and isolation, but do not have enforcement against providers who cause harm, instead putting the onus on vulnerable individuals and their families to report to professional regulators or the public advocate. Cases that do go through the rigours of reporting are sealed and only rarely leaked to media. There is no publicly-accessible data on the degree or amount of abuse, so there is no way to codify, study or solve the problem.

Isolation. Isolation abuse in special education exists across Canada. In September of this year, an autistic boy in Alberta was stripped naked and locked in an isolation room. As the CBC reports:

“The room had paper taped over the window and was locked from the outside. The boy’s teacher later emailed the parents a photograph of the 12-year-old that showed him naked and covered in feces. When the father arrived at the school about 45 minutes after receiving the email, he found the classroom empty. When the father took the paper off the isolation-room window, he saw his son and heard him whimpering.”

Inclusion Alberta (an advocacy group) called on the province to ban or regulate the use of seclusion rooms, as no regulations existed. The Province of Alberta has now promised to enact regulation within weeks. It took an extreme situation to motivate the province to regulate. We wonder: what will it take to motivate other provinces?

In another reported case this year, a six-year-old student was locked in a storage room by a teacher who walked out of the room and left him there alone. She was punishing the child for a “meltdown”.

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. The School Board calls these kinds of spaces “alternative learning environments,” or ALEs.

“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. Soon after, school administrators called his mother and told her to keep Christian at home.”

Restraint. Ontario school workers also use sedatives and restraints in place of de-escalation techniques. This year, a student in Ontario reported being put in restraints and injected with a sedative after walking out of school following a disagreement with another student. “They said when you calm down, they’ll take one (restraint) off one by one,” he said. “ I calmed down, they didn’t take one off. They put it tighter. I freaked out again and that’s when they put the needle in me.”

One of our Toronto-based members, who is now 20 years old, recalls his experience with restraint: “In Grade 3, I was physically restrained by school staff on an almost daily basis. Frightened, I would often try to escape by screaming, kicking…This of course made it only less likely that I would be released from the hold. At some point in time, it got so bad that I was temporarily expelled and homeschooled by someone sent by [the school district].

“The trauma that I endured in Grade 3 has stayed with me throughout my life and is at least partially responsible for several severe issues, such as c-PTSD, depression, Dissociative Identity Disorder and even problems in my sexual life due to the fact I had no concept of my bodily autonomy.”

Parents of autistic students in Ontario are given the option of sending a signed Do Not Restrain statement to the school. The fact that this kind of statement exists is a testament to the commonness of restraint in these classrooms. It gives proxy consent for restraint to the parents, begging the question: what happens to the children whose parents do not send the statement? Are they treated as a different class of child? Are schools and other settings making the best effort –or any effort –to create a trauma-informed classroom that doesn’t use restraints?

Children in special education also feel trauma at the impact of seeing classmates being restrained. A mom reports to us that she witnessed a violent restraint of a student that caused her to pull her own child from school. The program wouldn’t let parents visit the classroom, but one day she “snuck” past the receptionist and stepped into the classroom. In the centre of the room, a boy was being restrained and everyone was watching. She took her son home that day and began home educating him.

The fact that a parent would have to sneak in to see her child’s classroom may seem shocking, but it is not unusual in Ontario. At many schools the special education classroom is segregated and even parents are not allowed to enter. There are no rules requiring teachers to open their classrooms to parents. Because the classrooms lack transparency, a teacher can abuse vulnerable children with relative impunity.

When children do not have the capacity to report it and there are no witnesses, no action is taken to stop the abuse, year after year.

Read the full report

2018 Report to the UN, pt 6: Autism Pseudoscience in Ontario

NOTE: We have split our UN report on Human Rights for Autistics in Ontario into sections and are blogging them. This section is about the impact of autism pseudoscience on children in Ontario.

Medical settings: Autism pseudoscience and proxy consent
Lax notions of proxy consent are not just a problem in Ontario schools; they also have devastating consequences for autistic children whose parents invest in “biomedical treatments”, otherwise known as autism pseudoscience. These businesses claim to “cure” autism or “recover” autistic children through unproven and often risky procedures and diets.

Autism pseudoscience flourishes in Ontario due to a lack of regulation of both proxy consent and complementary medicine. In our province, minors do not have consent rights in their health care; parents are legally allowed to proxy consent to any “medical” procedure on their children. Since there is almost no regulation of biomedical “cures” for autism (even those that are risky or life-threatening), this creates an especially unsafe environment for autistic children.

Autistic and disabled children’s rights to appropriate health care, safety and comfort are being routinely violated here with little to no legal repercussions for the clinics that promise the false cures.

As the Westminster Commission on Autism (UK) writes in its report recommending improved policy and practice on autism pseudoscience: “Healthcare fraud is big business and autism is one of its many targets.” Biomedical autism treatments do not have any positive effect on autistic children and there is no medical basis for any of them. They are dangerous and potentially deadly to autistic children. They cause psychological damage, including PTSD, to the children who are forced to endure them.

Also, the myth that autism can be removed from a child leaves no room for parents to accept their child for who they are. A child who is being told they will be “detoxed” until no longer autistic, is not given the opportunity for healthy self-acceptance. When the miracle cure doesn’t arrive, it can have devastating consequences for the child and for the family relationship.

Examples of biomedical “treatments” offered in Canadian clinics include chelation (the removal of essential minerals and metals from the blood); injections and vitamin IV drips; off-label prescription drugs such as long-term antibiotics and antifungals (32 clinics in Canada); chemical castration; phony “stem cell” treatment (24 clinics in Ontario); herbal and vitamin supplements; hyperbaric oxygen tanks; “gene therapy”; bleach enemas (MMS); severely restrictive diets; “translational therapy”; and other regimes that are sometimes called biomedical treatment.

Other than MMS, which Health Canada is cracking down on, none of the other treatments are regulated. Anyone can practice them on a child of any age and the government will not generally take action.

This year, when a parent complained about an MD performing chelation on autistic toddlers in Ontario, her concerns were turned away by the College of Physicians and Surgeons of Ontario (CPSO), the regulating body of physicians in Ontario. Despite being given data on the risk-benefit ratio of chelation for autism, the CPSO rejected her complaint and took no action, indicating that it accepts proxy consent despite safety concerns.

She had shared with them a case where a child had died from chelation for autism; a case that has inspired the UK  to reform its regulatory system. Nevertheless, in a letter to the mom, the CPSO gave its endorsement for chelation to be performed on autistic children, stating that chelation for autism was a “valuable and evidence based” form of complementary medicine.

The fact that some autistic children in Ontario are treated like guinea pigs in biomedical experiments –and that this was recently endorsed by a professional regulating body– is extremely alarming and demonstrates the need for provincial and federal oversight into autism pseudoscience. Policymakers must reconsider our province’s overly-broad definition of proxy consent, in the interest of child health and safety.

As it stands, in our view there is a two-tiered system of risk management within children’s medical care in Ontario, where it is acceptable for a provider to do things to autistic children that regulators would not allow to be done to neurotypical children. We will discuss this below as well in the context of more traditional care.

Read the full report