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List of Our Recommendations to the Ontario Government

This is the list of recommendations from our full Report to the Ontario Government about inclusion in school; housing; employment and access to medical care.

Printable: A4As List of Recommendations for Autism Policy

Full Report

Background into the Recommendations
In early 2019, we authored a Report to the Government of Ontario’s autism policy advisory panel, entitled Inclusion is the New Gold Standard. It outlines many of the issues that autistics in Ontario face, and the ways that institutions, including Ontario’s autism service providers, have failed autistic youth and adult.

This document contains our recommendations only, listed under the categories of: General Administrative; Early Years; AAC; School-age; Transition to Adulthood; Health Care; Employment; and Housing.

Administrative Recommendations

  • Undo the former governments’ silo-ing of “autism services” into a single portfolio. Integrate the needs and interests of autistic people into multiple, relevant portfolios.
  • Follow the lead of Scotland, who has made it law that autistic people be consulted when the Government crafts autism policy, in perpetuity.
  • Financial auditing and oversight of all organizations offering “autism services” to prevent skimming, sweetheart deals, pork barrelling, price-gouging, monopoly, pseudoscience and unsustainable service models.
  • Create safeguard rules around lobbying and autism service monopolies, so families begin to have flexible options and public funds are no longer funneled to one industry as under the Ontario Autism Program (2018).
  • Do not endorse the establishment of a “self-regulating body” of BCBAs.
    • True regulation can only happen via outside oversight entities. Those entities already exist and should be leveraged rather than wasting resources on a new one that will only serve to stymie enforcement.

Recommendations: AAC—Flexibility in Services

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

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

Recommendations

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

 

Recommendations: Early Years

Funding Flexibility/ End the Service Monopoly

  • Fund AAC, OT, PT 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.
  • AAC access for all who need it, without delay.
    • Please see our AAC section, in the full Report for specifics about AAC access support.
  • De-fund IBI centres and all ABA in favour of inclusive approaches.

Community Education — An Inclusion Mandate

  • AAC education programs for healthcare providers, teachers and others in the community so that they can communicate directly with their students/clients who use AAC.
  • Create a mandatory inclusion education program for Ontario Early Years Centres and other programs for the early years, so that autistic children do not get excluded in these spaces.
  • Promote inclusion of autistic and all disabled children in public spaces through a public awareness campaign, ideally in partnership with the private sector.
  • Education program/website for parents of newly-diagnosed children, promoting an acceptance and inclusion approach.
  • Meaningful consultation with nonspeaking adult autistics and those with high support needs about what needs to change for autistic children with high support needs.

Recommendations: School-Age

Universal Design in Schools (the New Brunswick Model)

  • For public schools, follow the model of New Brunswick, who 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.”
  • Remove PPM 140 (2007) and allow families to use classroom support persons other than the districts’ ABA providers. Industry bullying and antiquated union provisions should not be dictating whether students can attend school with the right supports for them.
  • 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.

School Exclusions: Tracking & Accountability

  • 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).
  • Assess learning outcome measures and think outside the box. Consider alternative measures of success, per the model of New Brunswick schools.
  • 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).

Human Rights in Special Education

  • 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 that the Province is watching for neglect and other abuse in their classrooms.
  • 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.
  • 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. 
  • 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 and Inclusion BC).

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!
  • Province-wide peer (autistic) mentor program with online options in remote areas.
  • Consult with SCERTS and other inclusion models to understand best practices for community involvement.
  • 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 involvement in in sports/extra-curricular activities at schools.
    • 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.

 

Recommendations: Transitions 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/materials 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 and accommodations that promote student retention and success.
  • Commit to reforming the “school-to-guardianship pipeline”, where too many 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.

Recommendations: Access to Health Care

Health Care: Practitioner Training

  • 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.
  • 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.
  • 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).

Regulating Pseudoscience

  • Genuine government oversight of self-regulating colleges (chiropracty, CPSO) 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 (see Health Care section for case law).

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 (example: Apple).
    • Encourage private sector to hire autistic employees at competitive wages.

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.

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 (see Housing, page 41).
  • 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 to the best practices of Ontario organizations 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.
  • 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.

Thank you for reading these recommendations. We hope you will read our full report, available on our website: a4aontario.com or by email: a4aontario@gmail.com

Our Quarterly Report: Spring-Summer 2019

flag
Photo by Anne Lesserknaus

Our spring and summer was full of activities and advocacy. Thank you to everyone who was a part of it!

Neurodiversity Flag Raised at City Hall
On April 15, for the first time in history, the Neurodiversity Flag flew at a City Hall in Ontario! Taking a cue from activists around the world, we gathered and raised the rainbow infinity flag to celebrate our pride. Afterwards, we had an awesome hangout–with cake–making this historic moment even sweeter.

Thank you to all our members for helping to make it all happen and special thanks to Nancy Marshall for getting our flag screenprinted! Read more about the event here.

A4A Member Appointed to Government of Ontario’s Autism Policy Consultation Panel
In June, Matthew Jason Dever, an active A4A member from rural eastern Ontario, became one of two autistic advisors on the Ontario Government’s Consulting Panel on Autism Policy, which is on-going this month. Matthew is an autistic self-advocate, a web and graphic designer and a father of five children, including an autistic teen, tween and adult.

This is the first time in Ontario history that autistic people are included on the autism policy panel. This fact was recognized by CBC Radio, which interviewed Matthew about the panel and a range of issues. We would like to thank our Government for supporting equity and including autistic voices. Read more about it here.

A4A’s Autism Policy Recommendations submitted to the Government of Ontario
The government of Ontario requested reports from stakeholder groups including A4A and we submitted our Report and Recommendations early this summer and received positive feedback for our proactive approach. Our report was the only one that meaningfully addressed issues such as housing, employment, inclusive education and access to health care, with examples of best practices in other jurisdictions and a systems-thinking approach based on our members’ lived experience as end-users.

We also presented our specific Education Policy Recommendations in a very productive meeting with Education Minister Stephen Lecce in July. Thanks to Minister Lecce and everyone in his office for making this important conversation happen.

SpectrumWorks Job Fair
In April, A4A had an info table at Toronto’s annual SpectrumWorks job fair. The job fair brings hundreds of autistics together with companies to interview for jobs such as banking, service, IT, admin and others. Organizers Neil and Xavier are committed to creating a better environment for autistics to find, enjoy and retain work in our province and across Canada.

Thank you for inviting us to be a part of it, Neil and Xavier!

Health Access Workshops
This spring, our members led another successful health care access workshop at the Centre for Addictions and Mental Health. Thank you to Yona Lunsky for arranging them and for all who participated.

Over the summer, we have been planning for fall workshops at CAMH, University of Toronto and McMaster University. In these workshops, we will be talking about how medical practitioners can provide accessible care for patients who use AAC and autistic patients generally. Join us on social media to learn more about these workshops!

Counter-protesting Autism Speaks
In June, some of our members bravely stood and leafleted at the counter-protest to Autism Speaks. Autism Speaks supports research into eugenics and “preventing” people like us from being born. In fact, Autism Speaks Canada also gives more than $500,000 per year to MSSNG, the world’s largest Whole Genome Autism Study, attempting to identify autism-linked genes which, if found, would be part of prenatal testing, abortion and eugenics. In addition, it does not effectively support autistics living today: few of their donor dollars go to services and in fact 51 percent of their Canadian budget is consumed by overhead costs, well beyond the reasonable range according to charity watchdogs.

This is our most difficult event of the year and not everyone can endure it. Counter-demonstrators face harassment in an atmosphere that is anything but sensory-friendly and it can bring up bad memories and difficult feelings as well. We are thankful to A4A co-founder Rishav Banerjee for organizing it and for all those who attended: it is important to be a presence there and we will continue to be.

Employment Workshops at Viability
On July 29, A4A members Talia and Gaby delivered a presentation about Neurodiversity and the workplace to the team at Viability Employment Services. Viability is an organization that works with neurodivergent job-seekers and has been doing amazing outreach in the community. This was the first of a series of workshops that our members will be collaborating on giving workshops to schools and other interested groups in 2019 and 2020.

We were so glad to meet everyone at Viability and see the great work they are doing. Thank you to the Viability team for reaching out!

York Region Pride Parade and Other Hangouts
A4A members marched at York Region Pride Parade in June. It was awesome to make connections between members who live in York Region and some Toronto members who sought a quieter and more relaxed (accessible) Pride atmosphere that Toronto’s.

At another meetup, members met and described the kinds of activist and arts projects they are doing, which was very interesting. We also had another informal hangout in Toronto, and some of us who are rail fans are meeting up for Day Out with Thomas this month. For fall, there are more hangouts planned as well as an RPG meetup. To learn more, join our autistic chat group on Facebook.

Thank you to Mandy, Jeremy, Kim and all organizers of these awesome events.

Our Families Project
Our parent committee is preparing a series of social media posts about the joys of parenting!

Parenting a neurodiverse child, like parenting any child, is a gift and should be celebrated. Unfortunately, much of Ontario media and some organizations portray parenting an autistic child as a burden. This is hurtful and also dangerous because it dehumanizes autistic children and this can be used to justify abuse. We are seeking to re-humanize ourselves through a positive social media campaign, much-needed in Ontario. Watch our Twitter and Facebook for more info in September.

Donations
Several generous people came forward to donate for the printing of our Neurodiversity Flag, as well as the ASL interpreter for the event. We received another donation which helped to cover the costs of printing handouts for our flag event.

We have some associated costs with printing copies of our government report, as well as local travel costs and server and domain registration fees. We may have some small expenses coming up for the Neurodiversity Library as well. None of us are paid for our labour. If you would like to make a donation to help with our projects, it is always appreciated. Donate here.

Learn More
If you are an individual or a member of the media who would like to learn more about A4A or get involved in projects, please contact us. Thanks!

From our report and recommendations to the Ontario government: Introduction to the report

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

One snowy day last March, a group of autistic Canadians walked up the steps at Queen’s Park in Toronto to meet with MPP Amy Fee, who graciously welcomed us into her office to talk about autism policy. In that moment, we realized that we were making history. It was the first time that the Government of Ontario had ever consulted with autistic people about autism policy.

It seems unbelievable, doesn’t it? After all, hundreds of millions of dollars have been spent on autism programs and services in our province: could it be possible that our provincial governments had never asked autistic people about autism policy? It’s true. Our former governments had only ever consulted with a select group of service providers and parents, never with autistic people.

We would like to thank our current government for correcting an inequity and consulting with autistic people about the policies that affect our lives. Not only are we key stakeholders, (obviously) but as end-users of services, we have a lot of insight into how existing programs are run and what can be done to reform the system towards a more effective and sustainable model of service, with new paths for care and a new ethos emerging: inclusion.

Precedent for Inclusion
While Ontario may be one of the first provinces in Canada to be moving towards inclusion, it is not the only one worldwide. In this report, we will show the example of the UK, Scotland, New Zealand, parts of Canada and parts of the US, who are all moving away from the old segregationist approach towards including autistic people as valued members of the broader society (See Appendix 3, If Not ABA, Then What?).

We know that when autistic–and all disabled people–are included, it lifts our entire society. As we explore in this report, universal/inclusive design is good for everyone. Also, inclusion is the right thing to do. (See Appendix 1, Letter from New Brunswick’s Former Education Minister, for an example of the power of inclusive design.)

A Note on Terminology: We are autistic. As such, you won’t be reading hurtful terms like “epidemic”, “tragedy”, “burden” or “pay now or pay later” in this report. We know that we are who we are and we like and value ourselves. We are not a problem to solve (or to shove out of the way): we are a part of society and we strive for inclusion and respect. We want to fully be a part of the broader society and we seek to find the best ways to make that happen.

Overcoming a Legacy of Segregation
The former government’s model for autism services was based on segregation of autistic people and the foundations of its funding model were monolithic. All autism services and funding were grouped under one Ministry (Children and Youth Services) and all funding was directed to one program ( ABA, which is built on a segregation model). All funding decisions were made with the input of one lobby (ABA providers), without input by end users or any other stakeholders.

Under the old model, autistic toddlers and preschoolers were streamed into full-time, segregated ABA/IBI schools while their peers were playing and getting to know one another at community centres and Early Years programs. By virtue of their geography and ideology, the IBI centres separate the autistic children and stigmatize them as broken versions of normal, not truly a part of their communities.

It is no surprise then that autistic children in Ontario have been starting school at a social disadvantage: they are not a part of their neighbourhood community (because they attended IBI centres, not their local community spaces). It should be no surprise that their peers (who don’t have experience playing with autistic kids) likewise lack the social skills to relate to them.

No one should be shocked that spending the day racing through mazes for M&Ms and “school readiness” such as cutting up business cards with scissors likewise does not prepare autistic children for the complex social world of a school in which everyone else has known each other for years and has culturally-specific ways of communicating unrelated to the therapist’s prescribed lexicon of “no-no” and “good boy”.

Without a social context or social bonds, nor the life skills that they could have developed through the normal free play and community activities of early childhood, many autistic students in Ontario primary schools are doomed to be out of place and adults (ever-eager to place them) too often stream them into special education classes and consign them to 13 years of segregation within school. Those students who do remain in the mainstream classroom are typically paired with an ABA aide (and only ABA aides are allowed in Ontario schools, per the former government’s PPM 140), with districts still seeing ABA as the solution –when in our view, it is really the heart of the problem.

Once school has finished, students in special education or those who experience institutionalized stigma within a mainstream class, are less likely to attain any type of post-secondary education and more likely to end up living in segregated group homes and unemployed or working in a segregated workplace. This outcome, also, is completely predictable. By contrast, students who are integrated into the mainstream in a meaningful way are more likely to thrive and achieve autonomous living with or without varying degrees of support.

So why has the IBI system maintained such dominance in public funding in Ontario, when it clearly leads to a life of segregation?

This has in part to do with our province’s legacy of residential institutions, but also with the marketing of the ABA system and the way politics was done in Ontario under previous administrations. ONTABA is quite simply the most powerful (and until recently, the only) lobby on this issue. Their marketing has hinged mainly on fear – frightening parents with the false claim that theirs is the “only evidence-based” method and providing phony reassurance to policymakers that all they need to do is “pay (tax dollars) now” to avoid having to “pay later” (at the polls).

We hope that, to whatever degree possible, new administrations can push back on this fear and open up our province for choices in service and better inclusion of autistic youth and adults.

Our Background and Resources
We recognize the strengths and limitations within our own knowledge as a group. We have no paid staff to prepare this report (nor any financial stake in the recommendations we are giving). Unlike ONTABA, who hired the Pathway group to lobby eight Liberal ministries in 2017, we obviously don’t have paid firms doing our lobbying and PR! We are autistic adults, who once were autistic children, and we just want to help make things better.

Our members comprise both verbal and nonverbal/semi-verbal communities, represent a broad range of ethnicities; racialized identities; disabilities; economic class; genders; sexualities; education levels; and level of support. Our group spans the full expanse of political and social views. As an organization, we are firmly non-partisan.

Beyond our immediate group, we also have partners such as our parent auxiliary who are very active and helped with this report. As an international affiliate of the Autistic Self-Advocacy Network, we also have their mentorship and example. And we called upon a broader group of experts on inclusion in schools, housing and employment to inform our policy paper.

Organization of Report
We have organized this report into three sections:

  1. RECOMMENDATIONS
    • Administrative
    • School Inclusion
      • Early Years
      • Public Schools
      • Transition to Adulthood
    • Health Care Access
    • Employment
    • Housing
  2. OUTLINE OF THE PROBLEM AND POTENTIAL SOLUTIONS
    • Schools: Making Inclusion Work
    • Health Care: Access and Safety
    • Employment Fairness and Economic Security
    • Safe Housing and Housing Autonomy
  3. APPENDICES

We appreciate our government’s taking the time to read these sections and look forward to hearing your feedback.

 

 

From our report to the Ontario government: Administrative & policy 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

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

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

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

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

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

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

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

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

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

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

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

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

Recommendations

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

 

From our report and recommendations to the Ontario government: AAC in the early years and school age

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

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

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

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

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

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

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

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

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

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

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

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

A parent from Scarborough, Cathy Wright, wrote:

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

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

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

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

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

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

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

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

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

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

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

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

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

Recommendations:

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

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