Toronto, Ontario, February 12, 2021
Autism Ontario 2021 Pre Budget Submission
Autism Ontario 2021 Pre Budget Submission
February 12, 2021
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 25, 2021 and from our York Region Chapter on February 05, 2021.
This year, as the province reacted to the coronavirus pandemic, Autism Ontario took our many programs online. We found innovative ways to support and engage with our communities. As we enter our 48th 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 135,000+ citizens.
Autism Ontario continues with its vision 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 was encouraged by the recent announcement regarding the start of core services for the new needs-based Ontario Autism Program in March and for the increased investment in Ontario’s autism diagnostic hubs. Thank you for continuing to support Ontario families through Autism Ontario’s Service Navigation Program, 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 2021-2022 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.
2) Ontario Autism Program: Continue to support the work of the Implementation Working Group on the recommendations contained in the OAP Advisory Panel’s 2019 Report. The recent 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 families with children with autism 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.) Release the results of the province-wide capacity assessment of service gaps in order 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.) 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.
b.) 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.
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 more than ever.
a.) Invest in high school and transition programs to directly assist students on the autism spectrum with their transition to adult life that include programs that support successful transitions to work, attend college/university, and build adaptive skills needed for adult living and access to supported and meaningful daily activities.
b.) Implement the recommendations in the Ontario Ombudsman’s Report, “No Where 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.
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 a new trend of 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 housing needs of adults on the spectrum. The process must be less daunting for their families. Create genuine choices based on individualized and changing living requirements throughout adult life.