Priority #2: Long Waitlists

#2 Long Waitlists

What was the problem identified in 2018? 

 In 2018, in Autism Ontario’s Provincially Speaking Survey, the majority of caregivers (73.6%) surveyed reported long waitlists as the largest barrier to services provided under the auspices of the Ontario Autism Program (OAP). Caregivers classified waitlists as a large (23.9%) or a very large barrier (49.7%) to accessing services. Among adults waiting for services, a majority (60.3%) reported long waitlists as a large (20.6%) or very large barrier (39.7%). 

Many parents feel a sense of urgency because of their belief that intervening early is important for the paths their children follow later in life (Gentles, 2019). This means parents experience the delays caused by waitlists as a particular source of stress. 

Why is it still relevant?

Unfortunately, the situation has not changed. Long waitlists continue to be a barrier to Ontario families looking for an autism diagnosis and subsequent services. On average, families in Ontario can expect to spend upwards of year on a waitlist. Even after a diagnosis, families face yet another waitlist to access the services from various providers, which can range from three months to two years.   

Long waitlists also remain as a major source of stress for families of autistic children and adults. Not having access to these needed services can lead to higher and higher levels of family turmoil. People on the autism spectrum are continually excluded by a system that does not understand their specific learning needs. As a result, families and children are left waiting for accommodations they need to learn and grow that never seem to come. 

Oh, the Places You'll Wait (to name a few):

  • Autism and other neurodevelopmental diagnostic services 

  • Developmental Services Ontario (DSO) 

  • Ontario Disability Support Payments (ODSP) 

  • Healthcare services, particularly for adults who are no longer able to see a Paediatrician 

  • Subsidized or supportive housing  

  • ABA therapy

  • OAP funding 

  • Passport Funding  

  • CPP Disability  

  • School services such as educational assessments or other in-school supports such as Speech-Language Pathologist’s services. 

According to a report released by the Province of Ontario’s Financial Accountability Office (FAO) in July 2020, Autism Services, A Financial Review of Autism Services and Program Design Considerations for the New Ontario Autism Program, the problem has only grown. According to the FAO, between the 2004-2005 fiscal year and the 2018-2019 fiscal year, the waitlist to access services provided by the Ontario Autism Program  grew at an average annual rate of 35.4%. Represented another way, according to the FAO, the number of children on the waitlist grew from 1,600 in 2011-2012 to 24,900 in 2018-2019. By 2019-2020, the number of children on the OAP waitlist had grown to 27,600. 

A partial solution:

In March 2020, the Ontario Ministry of Children, Community and Social Services (MCCSS) stopped allowing families onto the OAP waitlist. Instead, it elected to offer funding to families in the form of interim one-time funding of $20,000 for a child aged 1 – 5 and $5,000 for a child or youth aged 6 – 17. In April 2019, the province had announced childhood budgets for families on the OAP waitlist with the same funding formula. As of October 2020, according to MCCSS, 42,437 children had been registered for the OAP, 27,103 invitations have been issued for interim one-time funding, and 11,444 invitations had been sent for childhood budgets. Unfortunately, these numbers do not make it clear  how many children registered for the OAP are actually in the program and how many are still on a waitlist. 

What is Autism Ontario doing about it?

In addition to the presentation of the results of its 2018 Provincially Speaking Survey   to the Ministry, which first discussed the Top 5 Priorities of families and self-advocates in Ontario, Autism Ontario continues to constructively engage with the provincial government regarding the issue. In its 2020 Pre-Budget Consultation Submission, Autism Ontario expressed its concerns over the state of waitlists for access to the OAP and pressed for the elimination of waitlists for Special Services at Home and respite funding, which had since become crucial for many families during the COVID-19 lockdown. Autism Ontario also continues to keep the issue in the public eye by actively pursuing the discussion of long waitlists as one our Top 5 Priorities. 

What can we all (you) do about it?

It is important as parents, caregivers, and siblings of people on the spectrum to make your voice heard regarding this issue. Long waitlists create unacceptable delays, especially in the lives of young children with autism, where early intervention is a key to later success in life. 

The first and easiest way to make your voice heard is to respond to Autism Ontario surveys or many other partner surveys. Although your participation in our surveys remains anonymous, your voice along with others can influence decision-makers. 

As a parent of an autistic child on a waitlist, you may also wish to reach out to your local Autism Ontario Chapter to inquire about being placed on its media contact list. This way, by working with Autism Ontario staff, you will be able to successfully share your experiences with a wider audience. 

Contacting your local Member of Provincial Parliament (MPP) to discuss long waitlists 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. 

Where do our Top 5 Priorities come from? 

In May 2018, Autism Ontario conducted a survey of 1,514 caregivers and of 87 autistic adults.  In order 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

Priority #3: Financial Hardship