Blog

2018 Report to the UN, pt 7: Health Care – Lack of Access to Appropriate Care

NOTE: We have split our UN report on Human Rights for Autistics in Ontario into sections and are blogging them. This is our section about access to health care, including dental care.

Health Care: Lack of Access to Appropriate Care
According to a study by the Redpath Centre and University of Toronto, in Toronto between 1998 and 2008, 14 per cent of the autistic youth surveyed had a hospital stay (lasting longer than 12 hrs) and 20 per cent accessed emergency services for “psychiatric or psychological problems.” When autistic Ontarians access services, their experiences are mixed.

Since the passage of Ontario Bill 168 in 2010, which allows health care providers greater leeway in refusing to treat, more autistics are being turned away from appropriate medical care once their diagnosis is revealed. “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.”

A parent recalled: “When my son was experiencing suicidal ideation, we called a crisis hotline. Because he is autistic, they didn’t offer help; instead they referred him for ‘behavioural services’ (ABA). I know of two other teenagers who are autistic who were taken to Emergency during suicidal episodes and were discharged because the psychiatry unit in ER was not ‘equipped’ to help autistic people.”

Autistic people in Ontario can also face a lower quality of care due to medical professionals’ lack of understanding about AAC and other communication methods in appointments. Some have also had difficulty getting timely care due not having communication access to the phone. This is slowly improving with increased availability of online appointment-making.

Lack of accommodation for processing time is also an issue in care and after-care instructions. As one member wrote: “Before I know it I’m being pushed out the door. I have no time to process information, ask follow-up questions or even the questions I planned to before coming in.” Many autistics prefer written to verbal communication and can get better care if they email the MD prior to the appointment and receive written, not just verbal, instructions.

Other autistic patients face barriers due to interoceptive differences or the way they communicate their symptoms to medical professionals who may not understand. One of our members writes: “When I’m in pain or distress, I speak louder, quicker…and it’s read as aggression, anxiety, or (in the case of an incident with the paramedics last year) meth overdose.”

Some autistics do not access dental care due to its prohibitive cost (it is not covered under provincial health care and may autistics do not work full time/have supplemental insurance). In addition, for autistic adults who may have experienced drugging or straightjacketing earlier in life, PTSD is a barrier to dental care. Luckily, some dentists have the knowledge to provide sensitive care, but they learn these skills outside of dental school, where it is not required.

Unfortunately, there are also dental clinics that state they “specialize” in treating autistic children but who really specialize in giving expensive general anesthetic procedures for a range of dental needs, including regular cleanings. One mom reports: “We visited an ‘autism expert’ dentist who said our daughter had 4 cavities and would need to come back and go under a general [anaesthetic]. We said no. We took her to a regular dentist who was relaxed and eased her into cleanings. She didn’t need to be knocked out and she also didn’t have four cavities!”

This points back to the two-tiered system of risk management within medical care in Ontario. General anaesthetic on young children carries significant risk. Why is a dentist promoting an expensive, last-resort option as the only way to treat autistic kids? Is there a watchdog who inspects the clinics for questionable practices, or is the onus solely on individual families to go through a formal complaint process that may lead nowhere?

Clinics make a lot of money offering “easy” solutions to worried parents in place of healthier, cheaper, feasible options. They are part of what’s known as the autism industry, where adding a puzzle piece to one’s company logo allows a company leeway in costing and in the quality of the services provided… because “autism”. These providers view the parent as the client and the needs of the autistic person – who is the patient!– are brushed over for the sake of convenience and profit.

Read the full report

2018 Report to the UN, pt 8: Employment and Human Rights in Ontario

NOTE: We have split our UN report on Human Rights for Autistics in Ontario into sections and are blogging them. This section deals with employment and sheltered workshops in Ontario.

Employment: Marginalization and exploitation
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.

The Ontario government’s autism plan doesn’t fund any services for job-seekers, nor for continuing education. In fact, employment, higher education and housing are not mentioned once in the plan. While some non-profits run annual job fairs and the private sector does some recruiting there, it is not enough to address the magnitude of the problem. There is no province-wide data about the number of IDD and autistics who are seeking employment, nor about the specific needs, qualifications and barriers to employment. Without this data or any funding, autistic job-seekers remain marginalized in our province.

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.

For this reason, many communities in the United States discontinued sheltered workshops and replaced them with positive alternatives. Following this lead, the former Government of Ontario under the Liberal Party decided to close all sheltered workshops, effective January 2019.

Unfortunately, with a new (Progressive Conservative) majority recently elected to Ontario Parliament, this legislation is now under attack by regressive forces in our province and it is unclear if the sheltered workshops will close in January.

The Torchlight sheltered workshop, which has been scheduled to close in 2019, states its purpose as: “to establish and operate workshops and sheltered workshops for the purposes of providing treatment, education and vocational training for handicapped persons.” But a Toronto Star investigation showed that in sheltered workshops, the workers were doing the following: “building wooden crates for 50 cents an hour; packaging student exam care packages for a few pennies each; and assembling windshield wiper tubes for roughly a nickel a piece.”

As Globe and Mail columnist Andre Picard has written: “What these workers – who by all accounts do their jobs well – need is not pity, but respect. They need to be afforded the same rights as other Canadians, including the protection of the country’s labour laws.”

We 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, noting that they have been phased out successfully in many parts of the US. As it stands, all of our organizations are bracing for a fight to keep them closed in 2019.

Read the full report

2018 Report to the UN, pt 9: Housing in Ontario – the Impact of Poverty

NOTE: We have split our UN report on Human Rights for Autistics in Ontario into sections and are blogging them. This section deals with housing and the impact of poverty.

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 liberty of movement and 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 living.

One potential path to housing independence is social assistance. The Ontario Disability Support Program (ODSP) was created in 1997, as was the welfare-to-work program known as Ontario Works (OW). However, the amount of support the program allow guarantees that many recipients remain in a cycle of poverty. The 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. In fact, the current ODSP rates do not cover average basic needs. A recent report by the Daily Bread Food Bank indicated that people with disabilities on ODSP represent a growing proportion of those who require emergency food supports from food banks.

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. Currently an ODSP recipient can earn only $200 in any month without penalty. Anything over $200 gets “clawed-back” at a rate of 50 per cent. While the maximum allowable earnings were scheduled to be doubled, this change was “paused” by the former government and the new government shows no sign of enacting that change.

Poverty is a reality for many autistic, IDD and/or disabled Canadians. It is a health and human rights issue impacting every aspect of life. As psychology professor 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.

Overall, our adult population is invisible in government and policy. The portfolio for “autism services” is held by the Ministry of Children and Youth Services. The image of “autistic” in our province’s autism-related documents are young children, the “pay nows”. Have autistic youth and adults been dismissed as “pay laters” and thus rendered invisible in programs and services? What is the larger impact of this on our communities?

Read the full report

2018 UN Report, pt 10: Housing Issues in Ontario Group Homes

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

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. We have also heard from case workers about human trafficking in Toronto homes, where vulnerable youth are targeted. Sexual and other physical abuse by staff is not effectively prevented nor dealt with uniformly, as there is almost no regulation or accountability. 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. Given the rich diversity of service providers, the applicability of universal indicators across sectors may be limited, although the Panel believes that some foundational indicators can be articulated.”  (emphasis added.)

In 2015, when 17 year old Justin Sanguiliano died after being restrained in a group home, Child Protection authorities concluded that neither criminal charges nor an inquest were warranted.
“It is stunning to me how these children… are rendered invisible while they are alive and invisible in their death,” said Irwin Elman, Ontario’s independent advocate for children and youth. Elman was unaware of Justin’s death until informed by the Star.

Elman authored an excellent report by the Provincial Advocate for Children and Youth’s office on youth in residential care. It covered many issues, including the arbitrary and unregulated use of restraint. The report noted: “Punishment seemed to be applied without explanation or any attempt to understand the reasons for the young person’s behaviour. We were told that in many cases staff never asked ‘why’ and just administered punishment.”

According to the Report: “The issue of the use of restraints and what the system calls ‘serious occurrences’ says more about the culture of a residential setting and the level of skill of staff than it does about the young people themselves.”

One former group home resident who went public shared his story about a staffer who “would try to pick fights. He knew that if these kids punched him, he would have the right to restrain them and he would use excessive force. He would bang their head up against the floor and they would be bleeding.” Bullying and restraint by staff was common in 3 of the 4 homes he was sent to in a year. “It was very scary,” he said. An autistic girl who also spoke to the Toronto Star told of being neglected and locked out of her group home. She is now struggling with PTSD.

As the Panel report suggested, solving the problems in our residential care system starts with clearer standards and regulations. Safer and more user-friendly reporting mechanisms would be incredibly beneficial as well. As one youth stated in the Provincial Advocate’s Report: “Who do you report to when you don’t know who to report to?” Children told the Advocate’s office that they were not made aware of their rights and did not have the information to self-advocate. “They were not just unaware of the Office of the Provincial Advocate for Children and Youth, but unaware of any individual who would be interested in speaking up for them or acting on their behalf.”

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 punitive approach to autistic “behaviours” has remained a reality long after Ontario’s residential institutions closed. The needs of autistics in residential care has not been studied in any depth, nor have autistic group home residents been surveyed as a demographic to understand whether their communication and sensory needs are being met.

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.

Read the full report

 

 

2018 Report to the UN: Conclusion

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

The future: Institutional retrenchment or autism acceptance?
This week, Ontario Premier Doug Ford introduced the possibility of re-opening sheltered workshops. Somehow, we knew this was coming. The long-due closure of sheltered workshops was a key element in the 2015 Fair Workplaces, Better Jobs Act (Bill 148) passed by the former government. The sheltered workshop closure was phased, set to complete in January 2019. It remains to be seen what the new rollbacks in labour laws will look like and how it will impact our lives.

The new government’s dismissal of Bill 148, like so much other legislation, points to the trend of retrenchment, favouring business interests over the needs of residents while saying that the changes are being made “for the people,” (a popular talking point of Ford Nation). Sheltered workshops (like the farms at Huronia) make a profit for the business at the expense of the employees. Yet as with the fields of Huronia, workshop owners portray an opportunity for development and “training”, a favour being done for the employees.

In 2018, this patronizing rhetoric feels as gaslighty as it likely did to our forebears in residential institutions. Workers in sheltered workshops do not have the same freedom of movement and economic choice as other workers. The jobs don’t advance them. Their rights are not being honoured. Sheltered workshops should have been closed here years ago. When will they be?

What is going on in our province right now? How do we, as rights advocates, steer this boat?

We’ve started by collaborating and communicating with agencies that are open to change, that will listen. At the same time, we are also making our presence known in spaces where most don’t want to see or hear us. We are building capacity within our own communities and dialoguing to understand our diversities and intersectionalities. We are working to give a broader legitimacy to autistic voices throughout Canada – in media, in the non-profit world and in policymaking. We’re getting the facts out there and having hard conversations, joining on common issues wherever we can, and glad to see other groups joining us.

Despite the negative political climate in Ontario, the conversation about neurodiversity is opening up in the broader culture. Globally, autistic self-advocates and researchers are disrupting the autism industry, claiming space as agents for the ideas–and the data–that will move us in a positive direction. Increasingly, autistic self-advocacy groups and autistic researchers are advising not-for-profits and policymakers as part of best practices. Autistic researchers are also gathering information on the many topics that matter to us but haven’t been studied. Self-advocates and researchers have also had success in building project partnerships that fall completely outside of the industry. A recent research example here is the AIDS Committee of Toronto partnering on one of the first-ever studies of autistic sexual health, developed by an autistic researcher with input from the community.

We disagree with Coker Capital group, which describes the autism industry as “poised for consolidation”. As it stands, the autism industry generates billions for companies worldwide, but attempts at consolidation (as is happening in Ontario with ABA dominance) have led to disastrous breakdowns in useful supportive services. Just two per cent of autistic people support the use of ABA, making it a true standout as a therapy being forced on a disabled population that doesn’t want it.

The autism industry has largely maintained the idea of us – autistics – as an abstract: a gene to splice, a set of behaviours to correct, our entire childhoods a measurable outcome in a Gantt chart. But life isn’t really like that. The Coker report states that the “fragmentation” of autism services is a problem for investors. Yet what the consolidation proponents call fragmentation is often actually flexibility, essential to keep (or make) services workable for us. Services for autistics need to be flexible and diffuse.

In contrast to the medical model, consider the flexible approach that reflects autism acceptance and the social model. It includes innovations such as inclusive design in classrooms, sensory-friendly spaces, improved workspaces for retainment, as well as meaningful demography, human rights regulation and enforcement, de-escalation alternatives & trauma-informed care, autistic inclusion in social assistance and jobs legislation, and education for teachers, providers and policymakers that is informed by autistic people. These are all being implemented by governments and non-profits outside of Ontario.

But Ontario remains mired in the idea that services for autistics should be delivered in a consolidated, top-down package. That idea isn’t working. And the stakes are high for our community. Many of us are poor, in pain, and not receiving the services we need. Still others are victims of horrific abuse, patterns that trace back to the era of residential institutions.

The government of Ontario needs to tap into the energy and creativity of the neurodiversity movement. Our policymakers must engage less with the autism industry and more with the actual stakeholders. The Province should be documenting and taking action to prevent human rights abuses through regulation and enforcement, while making it easier to report abuse and encouraging transparency. Finally, the Government needs to engage autistic Ontarians in meaningful consultation as it develops the policies that deeply affect our lives.

Read the full report

 

Our Report to the UN: Human Rights for Autistics in Ontario

We submitted a report to the UN about human rights for autistics in Ontario, to be incorporated into their international reporting. We will be meeting with the Rapporteur in November in Ottawa and will update with more information about their report as we receive it.

Please click below to read our report and share this link with anyone who may want to read it. Thanks.

Human Rights Report by A4A for UN,public version

 

Report on our first year – and looking ahead

by Anne Borden, co-founder

A year ago, we launched our website/social media and planned our first direct actions and campaigns. Our small group of founders–who discovered each other on social media–had come together to build the first province-wide autistic self-advocacy group.

In the year since our founding, we’ve focused on capacity-building and campaigns around health, employment, education and human rights.

In doing so, we are challenging the assumption of many Ontario policymakers that our needs can be understood by talking with our parents. In fact, our needs are best understood by talking with us. As an activist/self-advocacy organization, we are here to claim our space in the autism policy dialogue in Ontario.

Here are some of the ways we made ourselves heard in 2017-18.

Coalition and Community

Supporting the Closure of Sheltered Workshops. In 2017-18, we stood with Community Living Ontario and other advocates in a statement supporting the end to “sheltered workshops” in Ontario, where disabled workers are exploited, working at a fraction of minimum wage. Following the Ontario Government’s decision to close them, Ontario Bill 148 also guaranteed that the term training cannot be used by companies as an excuse for unpaid labour.

With other disability and labour organizations in our province, we will continue to stand united against any attempt to re-open sheltered workshops or to undo Bill 148.

The Disability Day of Mourning is an event founded by the Autistic Self-Advocacy Network (ASAN), a US self-advocacy group. On March 1, around the world, disability rights advocates hold vigils in honour of disabled people who were killed by their parents or caregivers. The vigil honours those lost and draws attention to the injustice that murderers of autistic and/or disabled people are routinely given lighter sentences by the criminal justice system.

A4A held vigils in Newmarket and Toronto. Many thanks to Mandy Klein, Sarah McFadyen and Raya Shields for leading these vigils.

The SpectrumWorks Job Fair is held every spring in Toronto, to bring autistics and employers together for interviews and information. Employment is a major issue in our community, in terms of both opportunity and accessibility. We were glad to be there to speak with autistic attendees, parents and employers about employment in Ontario.

A big thank to the SpectrumWorks organizers for inviting #actuallyautistic groups to the event and for asking us to advise on next year’s event!

In June, we marched in York Region’s LGBT+ Pride Parade. It was a super-fun event and welcoming space for all sexualities and neurotypes! Thank you to the YR Pride for welcoming us, we will be back next year.

We also co-ordinated an autistic-specific seminar with the Ontario Disability Support Program Action Coalition. Director Kyle Vose spoke about how to apply for ODSP, specifics of the benefits and how to appeal a decision. Thanks to Brandon Wulff and the AIDS Committee of Toronto for organizing and offering free space for the event. We are proud that ODSP AC has invited us to sit on their Action Committee (thanks Never Poplar for volunteering!) and we look forward to articulating the issues specific to autistics, and to supporting this important advocacy group.

This weekend (Sept 22), we marched in the Toronto Disability Pride March. The purpose of the march is: “To be visible and show that we have a voice in our community and a right to be heard. …To celebrate and take pride in ourselves as a community of people with disabilities.” We are looking forward to being a part of the march and other disability pride and advocacy events throughout our province.

Claiming Space
In Ontario, public autism events have usually been led by parent groups, with no meaningful input from autistic people. We are changing that. Here are a few events we organized in 2017-18.

Raise Our Own Flag – action. The annual Flag Raising at Toronto City Hall for “Autism Awareness Day” is triggering for many of us. This event is organized by non-autistic people who use terms like “epidemic” to describe us. SIGH….So we decided to show up with our own flag: the Neurodiversity Pride flag. Nic Hull silkscreened up a beautiful flag and we were on our way!

As Talia Johnson wrote: “The counter-rally was not against Autism Ontario, but for showing diversity and ensuring inclusion of autistic people in discussions.”  Prior to the AO event, four of our members spoke (via megaphone, because we were sidelined) about their experiences in the broader autism community and what needs to change. The event organizers did listen and we hope that next year the Neurodiversity flag will be raised and our realities no longer on the margins at City autism events.

Autism Speaks Doesn’t Speak for Us – action. A few months later, some of us counter-leafletted at the Autism Speaks Walk-a-Thon. We held a big banner which read: “Autism Speaks Doesn’t Speak for Us” (thanks to Jeff Chislett for making it!) and handed out our leaflets, which outlined facts about A$ on one side, and facts about neurodiversity on the other. We also handed out hand-made stimmy toys to kids attending the Walk, because the event was not at all sensory-friendly. Thank you to Sarah McFadyen for the idea and for making them! People liked the stimmies and we hope it helped: it felt good doing something that could have an immediate effect.

Even though it was hard to stand there and we did get some harassment, it’s important to be a presence and we will continue to be.

The International Day of the Stim. As A4A co-founder Rishav Banerjee writes: “Stimming brings us comfort and it brings us joy. It helps us deal with our pain. It helps us connect with the world and the universe around us in a unique and special way. Most importantly, it is a form of self-expression. An Autistic person’s stims are as unique as them, and they deserve to be respected as such.”

In that spirit, a group of us decided to start an international day to celebrate stims, with gatherings by London Autistics Standing Together and Canadian Autistics United in Winnipeg, among others. We used #stimday to get a discussion going on Twitter and ran a Stim day blog. Like most pride events, Stim Day is fun but exists for a serious reason. Under ABA, autistic children’s stims are often weaponized, taken away or “extincted” through physical or psychological abuse. We hope that in the future, autistic stims can be honoured for what they are: an important part of our lives and our health.

Our Positions

Sheltered workshops. We co-authored a statement in favour of our government’s closure of sheltered workshops. As MP Joel Hardin’s stated in his response to our Candidate Questions in November: “Sheltered workshops, which segregated and often underpaid their workers must continue to be a thing of the past. So-called ‘training’ under these (and other) circumstances has been too often a euphemism for exploitation. In addition, integration into the wider community, rather than hiding people away in this fashion, is clearly a preferred option—this is, after all, 2018.”

We couldn’t agree more. Unfortunately, the NDP did not get a majority and with “Ford Nation” in office, we may once again be fighting on this issue. We’re ready.

Autism Pseudoscience.We authored 2 reports on autism pseudoscience. In our first, on autism cure regimes, we documented the presence of these scams in our province and the lack of regulation around it, reaching out to pediatricians with specific tips for how to respond if a parent is using pseudoscience on their autistic child. In our second report, we discussed the specific risks of chelation for autism. When a story about autism pseudoscience broke on the CBC, many providers reached out and this started a broader discussion about how to improve the patient experience for autistic children and adults.

We will continue to educate and advocate around autistic patient issues in 2018-19.

ABA and the Ontario Autism Program. In 2017, our group formed in a particularly grim policy climate, where the ABA lobby was about to gain total dominance in our public education system. As the Government’s new Autism Program (OAP) mandated that all autistic public school children receive only ABA, it also gutted all services for autistic adults. The hateful expression: “Pay now or pay later,” was used to create policy that harms autistic children, youth and adults in our province. We will never forget this sad chapter in our Provincial Government’s history.

The OAP is a symptom of the broader problems in the Special Education system in Ontario, which hasn’t changed in 40 years –despite progressive evolutions in other parts of our country and the world. To that end, we wrote and advocated in opposition to the Ontario Autism Program and to ABA in general. The OAP needs to be scrapped and Ontario needs to catch up with the 21st century. We hope to move forward on this in 2018.

Looking Forward

Neurodiversity and Stim Toy Library. Based on a model developed by Lei Wiley-Mydske and Lana Thomas that is used internationally, we will be making our own neurodiversity library, starting in the Greater Toronto Area. We are also inspired by the work of Canadian Autistics United and activists at Simon Fraser University who have developed a Stim Toy Library at SFU!

In 2018, we will work with the Toronto Public Library to create a housed collection that is also mobile to community events. It is an amazing way to outreach and share neurodiversity resources with all who are interested.

UN Envoy visit. In November 2018, we will be meeting with the UN Special Rapporteur on the Right to the Highest Attainable Standard of Physical and Mental Health, during his visit to Canada. His office requested a report from us on the status of autistic people in Ontario, with an emphasis on housing/institutional life and human rights.

We look forward to discussing the report and other issues in international context and connecting with other activists on this.

Education Reform. On the heels of the Ontario Human Rights Commission’s scathing report on Special Education, we hope in 2018 to be part of the public discussion on equity and human rights issues in schools for autistic and all disabled students. Only through addressing the realities and naming them can we as a province move towards meaningful reform.

While other education systems around the world are incorporating universal design and other important measures for accessibility, inclusion and dignity for all students, Ontario’s education system hasn’t made meaningful change in special education in decades. Restraint, segregation, isolation, school exclusions, verbal and physical abuse are part of the fabric of special ed in Ontario. Ontario needs a complete overhaul of its special education system. We hope to help in every way we can.

Employment. We will be advising SpectrumWorks and other job fairs and agencies about accessibility and other issues in the job search process and in the workplace. We also hope to work with the Ministry of Labour as well as the private sector to identify areas for improvement.

While the private sector has been working to create an interview and workplace environment that accommodates autistic employees, we need government buy-in to bring better standards across industries. A handful of IT jobs or some service positions don’t solve the problem for most of us. Many of us have limitations to how many hours we can work as well: thus, maintaining ODSP and other benefits are tied directly in with employment retention, poverty and wellness. We hope to gather more data and work directly with policymakers on employment issues in 2018-19.

Health Care Access. Our health care access initiative will begin with an open-ended survey of autistics in Ontario, focused around the Social Determinants of Health model and intersectional identities. We seek to present the results, with analysis, to health policymakers as well as physicians and create a better, more accessible health environment for autistic patients in Ontario.

Gratitude!
Thank you to all members–autistic and allies–who have been a part of the conversations on neurodiversity; human rights and autistic representation in Ontario as our capacity has expanded this past year.

Thank you to everyone in the group who has been involved in planning actions; making strategic decisions; moderating our groups; designing  materials; writing blogs, statements and reports; managing our website; building partnerships and coalitions; and keeping our group so cohesive, organized and active.

It’s been amazing to watch what has come from our core group’s early conversations just over a year ago. Autistic self-advocates are now a part of the policy landscape in Ontario, growing more visible and powerful around the issues that affect our lives. There is light at the end of the tunnel. We are shining it forward. Nothing about us without us.