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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

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.

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.

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

In Canada, health care is a right. Unfortunately, many autistics in Ontario face barriers in access to:

• Basic health care, such as a family doctor.
• Mental health services.
• Dental care.
• Emergency treatment, such as the ER.

AAC Access
Many providers do not understand how to communicate with AAC users or assume “incompetency” when they meet an AAC user. This creates a barrier to care and can prevent someone from seeking health care when they need it.

As A4A member Derek Burrow, an adult AAC user, notes: “I have had medical staff look at me using my device, and then ask if I needed a guardian to sign it a form for me. Despite me walking in, by myself, and advocating for myself.”

We recommend teaching incoming and established health care practitioners:

• to understanding the broad communication capacities of AAC users;
• how to communicate with an AAC user (such as waiting for them to finish typing, rather than talking over them); and
• the need to keep AAC accessible during any medical care visit.

The Emergency Room
Because some practitioners don’t understand AAC or other autistic communication methods, autistic people may receive sub-standard care in emergency medical situations.

The environment of the ER is very stressful to autistic people, because we take in every single sight, sound, word/click/beep/door slam/yell/sob/whisper, smell and feeling (often including others’ emotions) when we enter the ER. We have heard that NTs can internally block these things out (seems weird, but ok) and many of us have our own external methods for helping to block these out so we can function in this over-stimulating environment. These include:

• Noise canceling or muffling earphones and ear plugs
• A stim toy to stay grounded (usually held in our hands or kept close)
• Talking about a special interest
• Echolalia
• Rocking jumping or spinning, as a form of self-regulation
• Our phones, to connect with other autistic people and friends/family

When these are not available to us, or if they are and things are going badly, we may go into sensory overload. This can look like:

• Shut down: going selectively mute, not looking up, seeming unresponsive, being unresponsive.
• Meltdown: crying, yelling, screeching, flailing, falling, swearing (Note: some of us also have Tourette’s).
• Any versions of the above and others.

These responses could usually be prevented with sensory considerations and communication. They are frequently misunderstood. As one of our members, who had reached the breaking point, recalled “The EMTs thought I was having a meth withdrawal.” Autistic people are vulnerable to abuse, systemic violence or denial of care in these situations, especially those who are Black, Indigenous, People of Colour or Trans.

We heard from members than some are afraid to give their autism diagnosis when receiving EMT care or even decline to seek care because of stigma and fear. Ontario Bill 168 (2010) which allows health care providers greater leeway in refusing to treat, is also a factor. “I want to share my diagnosis because it could help in my care,” says a member, “but I’m afraid it could affect whether I get care.”

Inclusion in the ER
Here are some simple ways that ERs can make their spaces accessible to autistic patients.

• Follow our AAC guidelines for communicating with AAC users
  • Acknowledge the AAC, to help the patient feel comfortable.
    • Say “I see you use AAC. I’m glad you can use it to talk to me.”
  • Ask for clarification.
    • If you didn’t see what the person pointed at, or if you missed some words, ask for clarification. “Sorry, could you repeat that?”
  • Calmly wait. If a patient is using a system like ProLoQuo, it will take some time for typing and having the voice speak the words. Avoid talking over them or starting up new topics; just be quiet and wait till they are done typing.
• Implement anti-racism/anti-bias education with related policies.
• Noise canceling or muffling earphones and ear plugs available for use by patients.
• Phone chargers on site so that autistic patients can stay connected to support people.
• Stim toys available — offer them to patients.
• Never take someone’s special object away. If medically necessary, keep it within sight or have a plan of where it goes, so the person feels secure.
• Ask about a special interest.
• Let the person know that they don’t need to make eye contact, that you understand.
• Provide written information of everything said, as many of us will not process everything and this can affect aftercare.

The Problem of Stigma
Sensory overload, previous bad experiences and PTSD can also create fear of seeking services. For example, past restraint in pediatric dentistry or abusive autism “therapies” can make autistic people avoid seeking health care.

Stigma prevents many of us from acknowledging sensory overload, from explaining our communication methods or sometimes even from giving our diagnosis. We worry about being judged and then treated poorly especially if we’ve had bad experiences in the past. At the same time if we don’t give this information, practitioners may misinterpret important communication, sensory or interoceptive factors among others.

Stigma disconnects us too: for example, some practitioners assume autistic patients aren’t engaged without eye contact, so they only address the patient’s parents. Autistic patients may feel stigmatized, left out and are less likely to return for care.

If we can be open about these factors, it can help make it a better experience for everyone. Most helpful is when practitioners meet us halfway, by showing knowledge and acceptance of autistic ways of communicating, moving and being.

Recommendations: Health Professional Education

• Training for both homecare support workers and staff in long-term care facilities for understanding how to best support autistic people as they age.
• Partner with medical schools to create an education module for health care practitioners (especially ER) on how to communicate with AAC users.
  • Alternative: support and promote independent efforts at these education modules.
• Recommended unit for medical schools: “Ask an Autistic,” where autistic people discuss their end-user experiences to educate incoming professionals on communicating with autistic patients.
  • Alternative: support and promote independent efforts at these education modules.
• Recommended education unit for dental students: trauma-informed care for autistic patients. Evaluate and update existing programs.
• Support online tools for autistic youth and adults on communicating with health providers and institutions (Tools should be created by autistic individuals in partnership with medical institutions).

Human Rights and Autism Pseudoscience
Autism pseudoscience (or so-called “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.

All autism pseudoscience causes psychological damage 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 family.

As the Westminster Commission on Autism (UK) writes in its report recommending improved policy and practice on autism pseudoscience: “Health care fraud is big business and autism is one of its many targets.”

The United Kingdom has recognized the problem of autism pseudoscience and is working to create more regulations around it. (We encourage you to read their informative and engaging report). Canada lags behind, still largely relying on so-called “self-regulating” colleges to keep practitioners in check. The problem is, this doesn’t work and children are in danger.

Testimonial: Autism pseudoscience
This year, when one of our members, a mom, complained about an MD performing chelation on autistic toddlers in Ontario, the College of Physicians and Surgeons of Ontario (CPSO), the regulating body of physicians in Ontario, rejected her complaint and took no action. She had shared with them a case where a child had died from chelation for autism; a case that inspired the UK to reform its regulatory system, as well as stacks of medical evidence from autism experts that chelation for autism has no evidence of benefit and clear evidence of harm, pointing out that chelation for autism is banned by the FDA and the NHS for these reasons.

Nevertheless, 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 that fit within their guidelines. The physician, who has sat on several CPSO committees, continues to practice chelation on autistic children today, despite universal condemnation of the practice by autism experts, the FDA and the NHS. The complainant, Anne Borden King, told us:

“I thought I would get a letter back saying they would stop him from doing this. I am still in shock that they have done nothing.”

This case demonstrates the need for provincial oversight into autism pseudoscience. Self-regulating bodies are not taking action to stop pseudoscience on children. Policymakers must reconsider our province’s overly-broad definition of proxy consent, in the interest of child health and safe.

Recommendations: Regulate Autism Pseudoscience

• Genuine government oversight of medical professionals to ensure that autistic children are not exposed to dangerous quack treatments.
• A provincial “do not use” list of autism “cures” such as chelation
  • This can be modeled on the NHS’s Do Not Use For Autism list and the FDA’s list of banned autism “treatments”.
  • Right to consent laws that protect children from harmful autism pseudoscience like chelation.

 

 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

A 2008 study of Toronto autistic youth by the Redpath Centre and University of Toronto showed that just 16.5 per cent of respondents were working full or part time. Without employment, it is not possible for most autistic people to live independently. With employment that has marginal pay, it is also impossible. Autistics who can’t live independently are at risk of abuse and many lack the freedom of movement to break free of abusive situations. Safety is a serious issue in some households and in group home settings.

There are some simple steps that the public and private sector can take, to make employment more accessible for autistic Ontarians. We outline them below in our recommendations.

Testimonials
One challenge we face is assumptions based on functioning labels: where we are either deemed too ‘low-functioning’ to live/work with the degree of autonomy we deserve or deemed so ‘high-functioning’ that we don’t need any supports. In reality, our support needs vary and can even fluctuate according to life events and other factors.

The best way to understand what we need is to ask us. One of our members put it this way:

“Many people believe that the autism spectrum has two ends with the two ends considered to represent IQ. However, this is not an accurate reflection of how autism presents in individuals; it is a generalization based on observations of outsiders. Autistic people experience varying degrees of issues with motor coordination, understanding nuances of language, ability to filter sensory information, and executive functioning skills.

“I have good language and motor coordination skills, but very low executive functioning skills. Yet, I am still considered ‘high-functioning’ despite years of continuing struggle with employment and relationships.”

Another member, Derek Burrow, wrote:
“I cannot stress enough just how much of a problem the current hiring process is for disabled people in general, but particularly for autistics. Interviews don’t make sense, and are less based on your actual ability to do the job than your ability to talk yourself up…which, again is difficult to do when speech isn’t always easy, and when it’s something you have to work at.”

Recommendations: Employment and Economic Security

Life Transitions: Employment

• Make the successful transition from school age to adulthood a priority in autism funding.
• Create employment-search support for those who want to work part time but can’t do full time due to disability.
• Audit ODSP to ensure people are not being economically penalized for going from unemployed to part-time, which has happened under other governments.
• Flexibility in service support for disabled employees who need to transition between unemployed and employed throughout their lives.
• Include autism in all disability support and funding policy.

Job Searching and Employee Retainment

• Online how-to information for autistic job-seekers on how to navigate disclosure and requesting accommodations.
  • Can be built from existing resources in other jurisdiction, with consultation from local autistics.
• Education for employers on workplace accommodations, to ensure more retention of autistic employees.
  • Can be built from existing resources already in place by the private sector (for example, Microsoft’s hiring and accommodation protocols).
• Mentorship between working autistics and job seekers.
• More partnerships with the private sector.
  • Leverage the knowledge of the private sector in creating accessible workplaces.
  • Learn from the best practices in private sector for the job interview process.
  • Encourage private sector to hire autistic employees at competitive wages.
    

Sheltered Workshops
In the late 20th century, as part of de-institutionalization in both the US and Canada, many communities opened up sheltered workshops, where workers with intellectual or other disabilities were placed in factories and other workplaces to do jobs for sub-minimum wages, often just a few dollars a day. The low wages were often accompanied by the myth that it was “training” for future employment at a living wage.

But it turned out sheltered workers weren’t being trained; they were trapped. “Training opportunities” translated over the decades into dead-end jobs for low wages. IDD workers were not learning skills for the paid workforce and remained unable to earn enough to live independently.

Last year, the provincial government decided to close all sheltered workshops, following the lead of many communities in the United States.

We’ve authored a statement with Community Living about the closures, supporting the transition away from sheltered workshops towards including community participation supports and employment opportunities at and above the minimum wage. The Canadian Down Syndrome Society also supports the closure of sheltered workshops and the development of new alternatives and leveraging of existing partnerships and programs.

Employment Recommendations: Dignity and Sustainability

• Follow through on the provincial ban on sheltered workshops.
• Replace sheltered workshops with meaningful options that maximize opportunities for autonomy and dignity.

 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

Housing –The impact of poverty
While Sections 6 and 15 of Canada’s Charter of Rights and Freedoms guarantee the rights of persons with disabilities to freedom to choose their residence on an equal basis with others, the impact of poverty prohibits many autistic, IDD and disabled Ontarians from achieving the dream of independent/autonomous living. Poverty is a health and human rights issue impacting every aspect of life. As psychologist Ajit K. Dalal states: “Disability and poverty tend to go hand in hand, forming a cycle of cumulative causation.”

We do not have statistics on how many autistic Canadians live in poverty because no one is keeping track. As well, autistic adults are not mentioned in Ontario government benefits legislation. Some benefits require an IQ test, which some autistics can “pass” while still needing assistance and thus end up without needed benefits, left in bureaucratic limbo.

The Ontario Disability Support Program (ODSP) monthly amounts for food, shelter and other basic needs for recipients of ODSP were frozen from 1993 until 2003, and the subsequent increases do not correspond with inflation and the cost of living, especially in cities, so current ODSP rates do not cover average basic needs. Some disabled recipients who work part time or are starting back in the job market also feel they are penalized for working while on ODSP. We are hopeful the new government will revise the ODSP system for more fairness in this and other areas.

Housing: Abuse in group (“residential”) homes
Group or residential homes in Ontario are a vestige of institutional life. The ideal of independent living for IDD and autistic individuals, beyond residential homes, has not been fully realized in our province. And the situation in some Ontario group homes is desperate and terrifying. Between 90 and 120 children and youth connected to Children’s Aid die every year in Ontario, many living in group home (“residential”) settings. An investigation by the Toronto Star showed that physical restraint is common in Toronto group homes and youth residences. Sexual and other physical abuse by staff is not prevented nor dealt with uniformly, as there is almost no regulation.

As an Ontario government panel on residential services concluded in 2016: “At this time, the Panel notes that there are no universal, or even common, set of indicators, standards or concepts that might lend themselves to the measurements of quality of care in residential services across sectors.”

Because there is no adequately tracking of 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 in a group home. Months later, he was arrested for hitting a client across the head and face with a metal water bottle.

Our Province currently 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.

To live in Ontario residential care is to feel helpless, much of the time. For autistic residents, this can be amplified by a lack of access to appropriate means of communication and sensory accommodation. The needs of autistics in residential care has not been studied in any depth, nor have Ontario’s autistic group home residents ever been surveyed as a demographic to understand their communication and sensory needs in the group home setting.

Service providers and social services policymakers must move towards an understanding of autistic realities in residential care, in order to develop trauma-informed care that works for all residents. In addition, we need regulation and enforcement to prevent abuse and recidivist violence.

Recommendations: Housing, Safety and Autonomy

Safety in Group Homes

• Government standardized regulation for vetting and hiring of privately-run group home staff, to prevent abuse and recidivist violence.
• A Bill of Rights for all group home residents in public or privately-run group homes.
• Standardized training for all group home workers on de-escalations and safety.
  • Restraint is currently the “first resort” for too many group homes.
• Universal record-keeping on incidents of restraint in group homes, modeled on the United Kingdom’s tracking tools for this.
• Audits of private group home corporations to ensure fairness and transparency in their rules and policies, with oversight by community members and independent living experts.

Towards Maximum Autonomy

• Consult with experts on independent/autonomous living to create a Framework for Autonomous Living, to empower more autistic and IDD individuals to achieve supported autonomy.
• Look at best practices as well as pilot projects in other jurisdictions and communicate with our federal government about new ideas and potential partnerships in working towards more autonomous living.
  • The Money Follows the Person pilot project in the US is one promising example.
• Look to the best practices of Ontario service organizations (beyond “autism services”). Study the work of agencies such as LiveWorkPlay for models of fostering housing autonomy.
  • LiveWorkPlay offers support in areas requested by individuals such as financial management; meal planning; social gatherings; and co-ordinating supports.