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From our report and recommendations to the Ontario government: Early childhood programs and services

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.

 

From our report and recommendations to the Ontario government: School inclusion that works

 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).

 

From our report and recommendations to the Ontario government: Human Rights in special education

 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.

From our report and recommendations to the Ontario government: Bringing community into schools

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

Education advocates have (for decades) pointed out that schools are healthier when communities and families are involved. This is as true for autistic students as it is for all students.

Yet many parents of autistic children note they are discouraged from being involved or even sometimes being able to enter the physical space of their child’s classroom. Access is entirely dependent on the individual environment of a specific district since there are no provincial guidelines on parent access to school or inclusion of families in schools.

The quality of inclusion is linked to a district’s openness to a parent’s input and involvement. This points to an overarching truth: inclusion is an attitude, not a product. Some districts and unions have balked at the “costs” of inclusion. But in reality, inclusion comes mainly at the expense of a shift in district culture, towards acceptance and openness to diverse students and the broader community. It is also true that without buy-in from administrators, even the most expensive inclusion programs will not succeed.

Deanna Shoyer, a member of our parent auxiliary, noted a change in her children’s school experience, that will impact their entire lives, when she moved districts:

“From Grade 1 to Grade 5 my children were in the TDSB. They attended a regular school but were in an autism specific class and a developmental disability class. My understanding was that there would be inclusive programming but that never seemed to transpire. I agreed to Owen being in a DD class because I believed they would be more committed to helping him learn to use AAC. On the contrary, despite being supportive of his AAC in person and in writing (his IEP), they undermined its use by taking his talker away from him for most of the day and on the bus.

“From Grade 6 my children have been in HWDSB and I was very insistent that they be mainstreamed. Both boys are now in regular classes for their age and provided with support and accommodations. They are both visibly much happier and excited to go to school. Owen always has his talker with him and he is using it much more. They are extremely popular kids, both amongst the staff and their peers. Oliver is actively mentoring children in lower grades with respect to both play and helping them with reading.

“Both boys are improving their academic, art and sport skills and strengths at a much faster rate. They are not only happier but more confident in themselves and more comfortable with their peers. I should note that both their classes are mainstream but also include other disabled children.”

Wherever the government can, it should use tracking data to hold schools to high standards for inclusion. At the same time, the government can encourage school/community connections in several ways, outlined below.

Community Involvement in Schools

  • Inclusion is an attitude, not an out-of-the-box program. While mandates are essential, so is education to meaningfully change the environment.
    • Have all students in the classroom provide input into inclusion. They have wonderful ideas and this empowers them.
    • Allow families to get to know each other and be a part of inclusion. Community-based schooling leads to better success socially and academically.
    • Inclusion lifts the whole community: celebrate it!
  • Create a rule prohibiting schools from banning parents from classrooms.
  • Consult with SCERTS and other inclusion models to understand best practices for community involvement.
  • Offer incentives for community involvement in schools—never de-incentivize it.
  • Provincewide peer (autistic) mentor program with online options in remote areas.
  • Education about self-regulation and autistic ways of moving, to reduce stigma and improve classroom success.
  • Education about AAC so that school social workers, staff and other parents are comfortable communicating with students who use it.
  • Helpful supports for families who home educate.
    • Remove barriers to being involved in sports or other extra-curricular activities.
    • Online tools to modify and provide feedback on the Ontario curriculum.
    • Educate community centres on ways to include and welcome this growing population during school hours.
    • Autistic students who cannot currently attend school due to barriers should not face further barriers in being involved in community life.

From our report and recommendations to the Ontario government: Autism services and transition to adulthood

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

Our province needs to build a useful system to help autistic youth transition to adulthood. Too often, youth are tracked by well-meaning school programs into “school-to-guardianship” plans that underestimate their capacity for autonomy.

We agree with the National Coalition on Disability (US) on the need for “ensuring that guardianship be a last resort imposed only after less-restrictive alternatives have been determined to be inappropriate or ineffective; and …recognize the serious implications of guardianship and encourages schools to recognize less restrictive decision making supports,” during the transition from school to adulthood (Read the full Report).

To make a more positive policy environment for transitions to adulthood, policymakers need to do more than extend funding for existing programs (although this is also positive, especially when paired with more flexibility). Policymakers must also audit and overhaul existing programs and develop new programs and partnerships that promote supported autonomy.

Following are some of our recommendations. We hope the government will take the time to assess needs, through data collection. We also hope the government can meet with our core group as well as our Parent auxiliary to discuss the future shape of transition services.

Recommendations: Transition to Adulthood

  • Cut wait times and other restrictions on Special Services at Home (SSAH).
  • Offer flexibility in Passport funding plans and options.
  • Ensure that autistic youth are specifically included in the language of all job program opportunities for IDD youth, so resources are clearly available and accessible.
  • Work in partnership with colleges and universities to develop a framework for inclusive post-secondary education that includes AAC & promotes student retention and success.
  • Base AAC funding for new acquisitions on changing communication and developmental needs rather than an arbitrary “5-year” timeframe.
  • Commit to reforming the “school-to-guardianship pipeline”, where youth are placed under guardianships from their earliest years of majority.
    • Research best practices in less restrictive decision-making supports.
    • Implement these practices to increase autonomy for autistic adults.
  • Please see our “Employment” and “Housing” sections for more specific recommendations.