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What was the problem identified in 2018?
In Autism Ontario’s 2018 Provincially Speaking Survey 56% of caregivers reported that finances had been a large or very large source of stress in the past year. Similarly, 51% of autistic adults said that finances had been a large or very large source of stress in the past year.
Why is it still relevant?
Financial hardship continues to be a source of stress for many caregivers of children with autism and autistic adults. The Ontario Autism Program (OAP) is only available to children under the age of 18 and distributes a minimal amount of funds to each family ($20,000 for each autistic child under the age of six, and $5,000 per autistic child aged six and older). Government funding for autistic adults is limited both in availability and eligibility, and the scope of what it can be used for.
Financial Impact on Families and Caregivers According to the 2019 Report by Conservative MPP Roman Baber, depending on the needs of the child, the cost of Applied Behavioral Analysis (ABA) therapy ranges from $5,000 to $80,000 per year, amounts he notes are “simply unaffordable to even high-income families... At $5,000 per year, most families of children with moderate to severe diagnosis would be destitute.”
Depending on the child, the Ontario Association for Behavioral Analysis ONTABA) estimates that annual support costs can range from $26,639 to $130,000. According to the 2019 Laurier Autism Research Coalition (LARC) Report, an average family with an autistic child in Ontario can be expected to pay the following yearly out-of-pocket expenses for these services:
Behavioral Therapy: $8,6888 - $60,000
Specialized sports and recreation programs: $1613
Speech Language Pathology: $2,797
Respite care: $2,884,
Occupational Therapy: $1,685
Psychological services: $2,415
The report’s authors note that the money spent by individual families likely reflects the amount the family felt they could afford to spend, rather than the amount of support needed by the child. The authors also warn about the emergence of a “two-tiered system of care,” where high-income families can pay for more and earlier access for their children., resulting in “children’s outcomes...likely correlated to families’ socioeconomic status.”
While many of the services listed above are not covered under the Ontario Health Insurance Plan (OHIP), some are partly covered under private or employee insurance plans. This leads to an even wider gap for those without this coverage.
The authors of the LARC report warn that parents and caregivers continue to find themselves under great financial pressure. Homes are sold, savings are spent, and many parents must either work extra jobs to afford services or quit jobs to act as full-time caregivers.
The 2014 Report from the University of Calgary’s School for Public Policy observes that for autistic individuals requiring 24- hour a day support, the cost of hiring necessary caregivers would require an annual family income of $200,000 – which is beyond the reach of most Canadian families. “... So, in most cases,” write the authors, “the responsibility for care falls largely, if not entirely, on the family, or in a worst-case scenario, the autistic individual is left with inadequate care.”
Aging Out... and Falling Through the Cracks
The OAP is only available to children under the age of 18. Once an autistic person ages out of the system, they face a whole new set of obstacles. The report from the University of Calgary’s School for Public Policy notes that many autistic people require supports throughout their whole lives. The report’s authors estimate that when an adult with severe support needs in Canada is placed into long-term care or supportive housing, the daily costs, including caregiver time, can amount to $400 a day or upwards of $150,000 a year. Furthermore, they conclude the “lifespan value of caregiver time alone to support a severely impacted individual with ASD (Autism Spectrum Disorder) to be approximately $5.5 million above the costs of a neurotypical individual.”
As the number of adults on the spectrum grows, responsibility for their care, and the associated costs, continue to be borne by parents or other family members, and in many cases by parents who are themselves well-past retirement age, producing stress on families and caregivers.
According to the 2017 study, Describing heterogeneity of unmet needs among adults with a developmental disability: An examination of the 2012 Canadian Survey on Disability, most autistic adults (78%) are not in the labour force (either working or looking for work). Of these, Of these, 63% relied upon government transfers as their primary source of income. The same study notes that autistic adults who do find employment are often at a financial disadvantage, as individuals with a developmental disability such as autism are more likely to make one-third less income than their neurotypical counterparts .
Further adding to potential financial woes is the August 2020 report from Statistics Canada that over one third of respondents with long-term conditions or disabilities experienced a temporary or permanent loss of employment during the pandemic.
What is Autism Ontario Doing About it?
Autism Ontario continues to draw attention to the issue of financial hardship. In Autism Ontario’s Findings From the 2020 Education Survey, 10% of parents and caregivers reported that the pandemic and ensuing lockdown had impacted their employment or work. In our continued conversations with the Ontario government and other stakeholders, we continue to make our concerns heard regarding the financial hardships felt by families and caregivers of children with autism and autistic adults.
In Autism Ontario’s 2020 Prebudget Consultation Submission, we stressed the importance of financial hardships facing families and adult autistics as one of our Top 5 concerns and wrote in detail about viable solutions to this issue.
We are also working with allied agencies and like-minded organizations to provide affordable housing solutions and employment supports for autistic adults to remove some of the financial strain from families and caregivers, and help adults gain independence.
Autism Ontario also continues to provide scholarships and funding from both the chapter and provincial office levels to assist families and caregivers and autistic adults with some of the financial burden they face:
The Elennor Ritchie Education Scholarship; the Jeanette Holden Educational Scholarship; MacDonald Family Educational Scholarship; David Conforti – Reach for the Stars Award (York Region); Hollylynn Towie Scholarship (Durham Region)
Low-cost and free programming from Service Navigation and chapters
Webinars and workshops about finance (saving the for the future, making the most of OAP funding, etc.)
Support groups so families can meet others who are going through similar situations
Additional funding opportunities may be available based on the region where people live in Ontario. Please visit our Find a Chapter Page to see what may be available in your area. Connect with your local Service Navigator to learn about any additional programs and funds that you might be eligible for.
What can we... and you do about it?
The best way to create positive change is to make your voice heard.
One of easiest ways is to respond to Autism Ontario surveys. Although your participation in our surveys remains anonymous, your voice, along with others, can inform and potentially influence decision-makers. Be sure to connect with your local Autism Ontario chapter as there is strength in numbers.
Contacting your local Member of Provincial Parliament (MPP) to discuss the financial hardships felt by the autism community is one of the most important things you can do to promote positive change. All MPPs maintain offices in both the provincial legislature and in their ridings and make time available to meet with their constituents. Handy tips are included in Autism Ontario’s Political Advocacy Toolkit, which is a non-partisan resource.
Other Financial Resources
As a parent or caregiver of a child with autism, or an autistic adult, you may qualify for these other provincial and federal resources:
CPP Disability and CPP Children’s benefits
Private scholarships for students with disabilities:
As a post-secondary student, you may also qualify for these scholarships, although not specific to autism.
Where do our Top 5 Priorities come from?
In May 2018, Autism Ontario conducted a survey of 1,514 caregivers and 87 autistic adults. To more accurately pinpoint what the autism community itself believed to be the most pressing and important areas for action and study, we conducted a secondary survey so the community could rank the results in order of perceived importance.
Introduction to the Top 5 Priorities
Priority #1: Education Support