Autism Ontario 2022 PRE-BUDGET CONSULTATION SUBMISSION
February 11, 2022
Honourable Peter Bethlenfalvy
Minister of Finance
c/o Budget Secretariat,
Frost Building North, 3rd Floor
95 Grosvenor Street
Toronto ON M7A 1Z1
Submitted by Email: firstname.lastname@example.org
Dear Minister Bethlenfalvy,
Autism Ontario is grateful for the opportunity to have verbally presented key highlights of this submission to you and your team on January 28, 2022.
As the province again reacted to the coronavirus pandemic for another year and with no clear end in sight, Autism Ontario continues its many programs online. We found innovative ways to support and engage with our communities. As we enter our 49th year, Autism Ontario’s vision is for Ontarians on the autism spectrum to have the best life, a better world, and one that makes autism matter. The families who formed Autism Ontario in 1973 would never have imagined the prevalence rates for autism to grow to 1 in 66 children in Canada. In Ontario that represents over 135,000 citizens.
Autism Ontario continues with its mission of creating a supportive and inclusive Ontario for autism. We advocate for a province that recognizes the need for seamless supports across the life course, reflecting the diverse nature of Ontarians with autism, their unique lived experiences, and the needs of their caregivers and families who love and support them as they grow from infancy to and throughout adulthood.
Autism Ontario is encouraged by the continued roll-out of services for the needs-based Ontario Autism Program this past year and for the investment in Ontario’s autism diagnostic hubs, the Information kit for families of newly diagnosed children, Foundational family services, Caregiver-mediated early years programs, the Entry to School program, and the announced Independent Intake Organization. Thank you for continuing to support Ontario families through Autism Ontario’s Service Navigation Program this past year, for those accessing OAP funding, March Break and Summer 1-1 funding, and for the continued financial support towards the OAP Provider List. Combined, these programs directly support over 20,000 people in Ontario. Surveyed families have repeatedly told us that these supports matter to them.
Investments that support people on the autism spectrum and their families make life more affordable, help autistic people prepare for jobs, and encourage the return to work for parents who wish to, but who must remain at home as primary caregivers for their children. This represents an investment in Ontario’s tax base and its citizens’ well-being.
Top 5 Priorities Rated by Caregivers
In late 2018, Autism Ontario conducted a province-wide survey, resulting in 10 top areas identified by caregivers and autistic adults. In November 2018 we asked our survey respondents to rate these top ten items in order of priority and these top 5 emerged:
1. Education Support
According to caregivers, the #1 area of need for a child on the autism spectrum is support with the education system, even though 77.8% of caregivers of high school aged children feel listened to by their child's school.
2. Long Waitlists
According to caregivers, long waitlists are the largest barrier for accessing service, with 73.6% of caregivers identifying waitlists as a large or very large barrier.
3. Financial Hardship
Finances has been a large or very large source of stress in the last year for 50.7% of autistic adults and 56.3% of caregivers. According to caregivers, finances are the 2nd largest barrier to accessing services.
4. School Transitions
87.4% of caregivers of high school aged children say that it is stressful to plan for their child's transition out of high school. 59.2% are not confident their child will have a smooth transition out of high school.
5. Adult Services
According to adults, the largest barriers to service are: 1) A lack of necessary services, 63.4%. 2) A lack of professionals who understand autism, 63.1%.
Investment Recommendations for the 2022-2023 Ontario Budget:
1. COVID-19 Vaccinations: As people with developmental disabilities, such as autism, have been identified to be more vulnerable to the COVID-19 infection (Majnemer and McGrath, December 4, 2020), we ask that priority be given to them and their caregivers with the roll-out of the province’s COVID-19 vaccination program, including booster vaccinations.
2. Ontario Autism Program: Last year’s announcement regarding core-services of the new needs-based Ontario Autism Program (OAP) is a promising step, however, access to these core services needs to be expanded without delay. The majority of autistic children remain on waitlists for access to OAP services. Reduction of these waitlists remains one of Autism Ontario’s Top 5 Priorities, where in 2018, 73.6% of caregivers identified waitlists as a large or a very large barrier.
a) There remains an urgent need to develop a plan to build professional capacity in a province, currently unable to support the current demand for the 4 core services in Applied Behaviour Analysis, Speech Language Pathology, Occupational Therapy and Mental Health intervention and supports.
b) Work with the Colleges and Universities, businesses, and autism service providers to reverse the current trend of an exit of professionals from the autism field that are needed to keep the very programs being implemented through a needs-based OAP in place and functioning both now and for years to come.
c) Collaborate with northern Aboriginal and other First Nations leaders to respond to their own culturally informed approaches to supporting Indigenous persons on the autism spectrum in their local communities.
3. School Years: Students on the autism spectrum do not receive consistent educational supports across Ontario. It has been over 12 years since the report “Making a Difference for Students with Autism Spectrum Disorders in Ontario Schools, From Evidence to Action” was released. Meanwhile, the number of Ontario Human Rights cases to address these gaps in learning needs and access to appropriate supports is growing.
In Autism Ontario’s recent parent/caregivers survey they indicated that the #1 concern out of the top ten concerns parents had were Educational Supports. Although many notable gains have been made in the past 10 years, supports for Special Education are insufficient to meet the assessed need and Individual Education Plans for students with autism, even as currently defined in Ontario legislation and education policy.
a) Autism Ontario responded to the K-12 Education Standards Development Committee Recommendations in fall 2021. We applauded the excellent work and recommendations of the committee. In our response, we noted important changes that should be made for students on the autism spectrum, the need for funds to be attached to implementation, rigorous accountability the importance of an external evaluation of measurable results on identified goals.
Autism Ontario also responded to recommendations of the Transitions Sub-committee for Accessible Transitions for Students with Disabilities in Kindergarten to Grade 12.
We are concerned we will never get any further ahead with this conversation until there is measurable and consistent outcome tracking for all pathways within the K-12 education system, not just for secondary schooling, which is the case currently and is only partially helpful. Currently there are students who have aged out of secondary extension options without a clear next step. More careful tracking and accountability would provide the kind of data required to a) assure that completed programming has been successful and b) clarify post-secondary options. Consistency, measurability and accountability at every level would build the groundwork required for successful transition out of the K-12education system and toward meaningful and productive lives for people with disabilities.
b) Many autistic students have lost educational gains during the pandemic as they simply could not participate in on-line learning. We ask that the Ontario Government immediately implement a new Autism Education Committee as recommended in the OAP Panel Report in the section with specific recommendations for the Ministry of Education. This group could meet virtually during pandemic times to achieve the identified outcomes of the report and consider new information contained in Findings from the 2020 Autism Ontario Education Survey.
“…we are burnt out. Having schools closed, keeping routine, plus trying to manage day to day responsibilities has put so many families like mine into burn out mode. Trying to assist with school and be an Education Assistant to my sons as well as the role as their mother, has proven to be a challenge, and to also be mom to a typical child, wife, employee, and all the other hats we as parents wear. Caregivers in a non-COVID world have large amount of burn out as we put ourselves last, but adding the challenge and stress of not being to leave the home, have our children in school, not being able to be with friends and typical peers, not having normal routine has added so much stress to not only the caregiver, but our children who are autistic as well.” (Ontario parent)
c) Require mandatory pre-service training in evidence-informed education practices and Applied Behaviour Analysis for all educators.
4. Health and Mental Health:
a) Provide supports and incentives to grow provincial capacity for mental health professionals who understand autism.
b) Implement the Mental Health Committee identified in the OAP Advisory Panel’s Report in order to address the many gaps in providing health and mental health supports to people on the autism spectrum and their caregivers.
c) Continue to financially support the world-class research efforts of the Province of Ontario Neurodevelopmental Disorders Network (POND).
d) Continue to fund the ECHO Ontario Autism program which provides virtual training and capacity building by videoconferencing for more than 2,000 providers and over 700 organizations to deliver high-quality, evidence-based mental health care in local communities across Ontario.
e) Continue to invest in the health, mental health, recreational and informational/training needs of children and adults and the families who remain the primary caregivers of their loved ones. Programs such as OAP Service Navigation and have access to Provincial community events have demonstrated benefits for children and families. We have shown that the OAP Service Navigation Program and access to Provincial community events benefit autistic children and their families. Investing in similar supports for transition aged youth and adults can lead to better health and quality of life outcomes.
f) A Seamless Approach to Care: All too often, families and autistic people must navigate through different provincial ministries, placing an additional burden on them. We recommend, as noted in the OAP Panel’s report, key Ministries – Children, Community and Social Services, Education, Health work together in a non-siloed, collaborative approach with families and autistic people.
5. Older Teens and Adults: Autism’s prevalence rates are not only an alarming statistic for children and youth, but we are now seeing these numbers grow along with the children as they become teens and adults. More importantly, these students are now beginning to exit high school unprepared and unsupported for life as adults in higher numbers than ever before.
a) Invest in high school and transition programs that directly assist students on the autism spectrum with their transition to adult life including successful transition to work, college/university, building adaptive skills for greater independence, and access to supported and meaningful daily activities.
b) Implement the recommendations in the Ontario Ombudsman’s Report, Nowhere to Turn.
c) Eliminate the waiting lists for Special Services at Home and respite funding.
d) Conduct a review of Ontario Disability Support Payments and Passport Funding to address the continued ineligibility of many autistic adults, insufficient funding levels and unacceptable waiting lists. Claw back penalties for engaging in real work for real pay must not serve as disincentives for attempting varying degrees of employment towards something more sustainable.
e) Create employer incentives to hire autistic adults capable of a wide range of skilled jobs, not for charitable reasons, but because it makes good business sense. Create opportunities for employer learning and creation of psychologically healthy workplaces to employ and support all of their employees, necessarily including neurodivergent employees.
f) Housing: In the absence of increasing supportive housing options, the number of adults with autism who are in crisis will continue to grow. Supporting a model that is primarily crisis driven is a far more costly proposition than focusing on prevention of the circumstances that result in more restrictive responses. We also worry about seeing children with disabilities, including autism, in long-term care facilities, effectively replicating an institutional model of care which is neither appropriate nor necessary.
Invest in and collaborate with various disability and neurodevelopmental disability groups and all levels of government to make the process of short, medium, and long-term planning for the affordable and supportive housing needs of adults on the spectrum. Support the work of the Housing Through an Autism Lens project blueprint in realizing the creation of affordable, flexible, desirable, supportive housing which necessarily includes genuine choices based on individualized and changing living requirements throughout adult life. This process must be less daunting for individuals and families.
6. Coordinate national collaboration and knowledge sharing mechanisms between provinces and territories within a framework of a National Autism Strategy, where lessons and collective evidence can be shared to inform policy decisions related to autism.