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end|thewaitontario

Parent-led advocacy for Ontario families waiting for autism services.

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end|thewaitontario

Parent-led advocacy for Ontario families waiting for autism services.

Getting Started

  • Browse All Pages
  • Search
  • Diagnosis Guide
  • While You Wait
  • Facts (Citation Ready)

Common Questions

  • All Questions
  • How Long Is the Wait?
  • What Is the OAP?
  • How Many Are Waiting?
  • Options While Waiting
  • Funding Amounts

Tools

  • Next Steps Tool
  • Wait Estimator
  • Funding Estimator
  • Therapy Budget
  • Waitlist Tracker

Providers

  • Provider Directory
  • Choosing a Provider
  • Submit a Provider

Funding & Support

  • OAP Overview
  • Funding Guide
  • Eligibility
  • How to Register
  • DTC & RDSP

Your Region

  • Toronto
  • Ottawa
  • Hamilton
  • London
  • Mississauga
  • All Regions

Evidence & Data

  • Evidence Library
  • Data Hub
  • Waitlist Data
  • Cost Calculator
  • Data Stories
  • Where Does the Money Go?

Take Action

  • Action Hub
  • Write Your MPP
  • File Complaint
  • Advocacy Toolkit

About

  • Our Story
  • Transparency
  • Media References
  • Founder
  • Press
  • Contact
end|thewaitontario

Parent-led advocacy for Ontario families waiting for autism services.

  • Browse All Pages
  • Search
  • Diagnosis Guide
  • While You Wait
  • Facts (Citation Ready)
  • All Questions
  • How Long Is the Wait?
  • What Is the OAP?
  • How Many Are Waiting?
  • Options While Waiting
  • Funding Amounts
  • Next Steps Tool
  • Wait Estimator
  • Funding Estimator
  • Therapy Budget
  • Waitlist Tracker
  • Provider Directory
  • Choosing a Provider
  • Submit a Provider
  • OAP Overview
  • Funding Guide
  • Eligibility
  • How to Register
  • DTC & RDSP
  • Toronto
  • Ottawa
  • Hamilton
  • London
  • Mississauga
  • All Regions
  • Evidence Library
  • Data Hub
  • Waitlist Data
  • Cost Calculator
  • Data Stories
  • Where Does the Money Go?
  • Action Hub
  • Write Your MPP
  • File Complaint
  • Advocacy Toolkit
  • Our Story
  • Transparency
  • Media References
  • Founder
  • Press
  • Contact

Legal Disclaimer: This website presents advocacy arguments based on publicly available data and legal frameworks. While we strive for accuracy, this content is for informational purposes only and does not constitute legal or medical advice. Nothing on this website should be construed as a guarantee of any specific legal outcome.

Independence: End The Wait Ontario is a parent-led advocacy group. We are not affiliated with the Ontario government, the Ontario Autism Coalition, Autism Ontario, or the World Health Organization. We cite FOI data obtained by the Ontario Autism Coalition as a matter of public record. This does not constitute affiliation. References to these organizations are for informational purposes; no endorsement is implied.

Non-partisan policy advocacy: We advocate on policy outcomes for children and families and do not endorse any political party or candidate.

Statistics are current as of the dates cited and may change. For specific legal guidance, consult a licensed attorney. For medical advice, consult qualified healthcare professionals. Last updated: 2026.

Legal|Privacy|Terms|Cookies|Accessibility|Corrections|Authority

Advocacy, not anger. Data, not speculation.

Carroll v. Ontario · HRTO 2025-62264-I

© 2026 End The Wait Ontario. All rights reserved. · Parent-led advocacy · Not a government agency

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Is the Ontario Autism Program underfunded?

Yes. The Financial Accountability Office (FAO) determined that **$1.35 billion annually** is needed to serve all registered children at 2018-19 service levels. The 2026-27 Ontario Budget allocated **$965 million**, leaving an estimated **$385M+ annual shortfall**. [FAO, Ontario Budget 2026] This gap is the primary driver of the perpetual 88,175+ child waitlist.

Source: Financial Accountability Office of Ontario [FAO]

How much does Ontario fund for autism treatment?

Core Clinical Services funding ranges $6,600-$65,000 per year based on age/needs (with a total OAP budget of $965M for 2026-27, up from $779M in 2025-26, per the Ontario Budget tabled March 26, 2026). This is direct funding—families choose public or private providers. However, intensive ABA therapy can cost up to $95,000 USD/year (2020 US cost estimate cited in FAO 2020 report; Canadian costs vary), leaving significant out-of-pocket gaps.

Source: 2026 Ontario Budget, FAO Report 2023-24

What are the lifetime costs of autism without early intervention?

Research indicates lifetime costs for individuals with autism and co-occurring intellectual disability can reach US$2.4 million in 2014 US dollars (Buescher et al., JAMA Pediatrics 2014). Early behavioral intervention is associated with reduced long-term support costs (Cidav et al., JAACAP 2017), demonstrating the economic value of timely access to services.

Source: Buescher et al., JAMA Pediatrics 2014; Cidav et al., JAACAP 2017

Financial Planning

Estate Planning for Ontario Families with Autistic Children

Estate planning for families with autistic children in Ontario requires careful coordination between wills, trusts, government benefits, and guardianship provisions. A standard will that leaves assets directly to a disabled beneficiary can inadvertently disqualify them from Ontario Disability Support Program (ODSP) benefits. Specialized tools — particularly the Henson Trust and the Registered Disability Savings Plan (RDSP) — allow families to provide for their child's future without jeopardizing essential support programs.

This information is for educational purposes only and does not constitute financial advice. Consult a certified financial planner or accountant for guidance specific to your situation.

  1. Home
  2. ›Financial
  3. ›Estate Planning for Families with Autistic Children | Ontario

Key facts at a glance

  • ODSP individual asset limit: $40,000
  • Maximum lifetime RDSP grants: $70,000 in matching grants
  • Maximum lifetime RDSP bonds: $20,000 (low-income families)
  • Cost of a Henson Trust will in Ontario: $2,500-$5,000 typical

$40,000

ODSP individual asset limit

Ontario ODSP Directive 4.1, 2024

$70,000 in matching grants

Maximum lifetime RDSP grants

Canada.ca RDSP program, 2025

$20,000 (low-income families)

Maximum lifetime RDSP bonds

Canada.ca RDSP program, 2025

$2,500-$5,000 typical

Cost of a Henson Trust will in Ontario

Ontario disability law practitioners, 2025 survey

Why Standard Wills Are Insufficient

If an autistic adult inherits assets directly, those assets count toward ODSP's $40,000 asset limit (rates as of 2024–25). Exceeding this limit can result in suspension of ODSP income support, drug benefits, and other essential services. A Henson Trust, by contrast, gives the trustee absolute discretion over distributions, which means the trust assets are not considered the beneficiary's own and do not affect ODSP eligibility.

Ontario families should also consider what happens if both parents die simultaneously. Without a proper estate plan, the court will appoint a guardian and the child's inheritance will be managed under the Children's Law Reform Act — often resulting in the Public Guardian and Trustee overseeing funds, which limits flexibility for autism-specific spending.

Key Estate Planning Components

A comprehensive estate plan for autism families includes: (1) a will with a Henson Trust provision for the autistic beneficiary, (2) designation of a substitute guardian if the child is a minor, (3) a plan for transition of guardianship at age 18, (4) life insurance to fund the trust, (5) RDSP contributions to maximize government matching grants, and (6) a letter of intent detailing the child's needs, preferences, routines, and support requirements.

The letter of intent — while not legally binding — is one of the most valuable documents a family can prepare. It communicates critical information about the child's daily routines, sensory needs, communication methods, medical requirements, and personal preferences to future caregivers and trustees.

Choosing Trustees and Guardians

The choice of trustee and guardian is the most consequential decision in the estate plan. Trustees should understand both financial management and disability benefits rules. Many Ontario families use a professional trust company as co-trustee alongside a family member to combine financial expertise with personal knowledge of the child.

Guardianship requires careful distinction between guardian of the person (responsible for care decisions) and guardian of property (responsible for financial decisions). These roles can be held by different people. Ontario's Substitute Decisions Act, 1992 governs the process for adults who may need continued decision-making support.

Frequently Asked Questions

What is a Henson Trust and why do autism families need one?
A Henson Trust is a discretionary trust recognized in Ontario law that allows assets to be held for a disabled beneficiary without disqualifying them from ODSP. The trustee has absolute discretion over distributions, which means the trust assets are not counted as the beneficiary's own. Without one, a direct inheritance could eliminate ODSP eligibility.
At what age should we start estate planning for our autistic child?
As soon as possible after diagnosis. Early planning allows you to maximize RDSP contributions and government matching (available until age 49), establish life insurance while premiums are lower, and ensure guardianship provisions are in place. Many Ontario disability lawyers recommend starting the process within the first year after diagnosis.
Can my autistic child make their own financial decisions as an adult?
It depends on their capacity. Ontario law presumes capacity unless demonstrated otherwise. Many autistic adults manage their own finances independently. For those who need support, options range from informal arrangements to formal powers of attorney or court-appointed guardianship under the Substitute Decisions Act, 1992.
Does an RDSP affect ODSP eligibility?
No. RDSP assets and withdrawals are fully exempt from ODSP asset and income calculations. This makes the RDSP one of the most powerful savings vehicles for families with autistic children who may need ODSP in adulthood.

Sources

1

Ontario Ministry of Children, Community and Social Services

ODSP Policy Directives, asset exemptions for discretionary trusts, 2024

2

Employment and Social Development Canada

Registered Disability Savings Plan program terms and contribution limits, 2025

3

Henson v. Ontario (Director of Income Maintenance)

Ontario Divisional Court, 1989 — foundational case establishing Henson Trust

Related Financial Resources

The Henson Trust: A Complete Guide for Ontario Autism Families

Life Insurance Considerations for Ontario Autism Families

RESP Planning Considerations for Ontario Autism Families

Disclaimer:This page provides general information, not financial advice. Consult a qualified financial advisor familiar with disability planning for decisions specific to your family's situation.

Verified References & Sources

Updated: Mar 2026

Government Reports & Data

[2023]
Exclusion of Students With Disabilities — 2023 SurveyVerified FAO Data
Community Living Ontario • Report • 2023-10-01
View
[2024]
Inclusion Without Proper Support Is AbandonmentVerified FAO Data
Elementary Teachers' Federation of Ontario • Report • 2024-06-01
View
[2020]
Autism ServicesVerified FAO Data
Financial Accountability Office of Ontario (FAO) • Report • 2020-07-21
View
[2024]
Ministry of Children, Community and Social Services: Spending Plan ReviewVerified FAO Data
Financial Accountability Office of Ontario (FAO) • Report • 2024-02-29
View
[2025]
Ontario Autism Coalition FOI update on Ontario Autism Program registrations and fundingVerified FAO Data
Ontario Autism Coalition • Report • 2025-12-10
View

Commitment to Accuracy: Our data is verified against official government reports (FAO, MCCSS), peer-reviewed scientific literature, and accessible public records. Last updated: March 24, 2026.

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About This Article
Written by:Spencer Carroll - Founder & Autism AdvocateParent of autistic child navigating OAP system
Featured in CBC News Investigation
FOI Data Verified
Clip in WHO Social Media Reel
Active HRTO Advocacy
FAO & Legislative Assembly Cited

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Verified Facts

Facts cited on this page

$200/month, The Canada Disability Benefit provides up to for eligible Canadians with disabilities

Gov / Peer-ReviewedGovernment of CanadaVerified: 2026-03-19

88,175, children are registered in the Ontario Autism Program

SecondaryCBC FOI Jan 2026Verified: 2026-04-29

1 in 50, According to the 2019 Canadian Health Survey on Children and Youth, about children and youth aged 1 to 17 in Canada had an autism diagnosis

Gov / Peer-ReviewedPublic Health Agency of Canada (2024)Verified: 2024-03-26

23.4%, Only 20,666 children have active funding agreements () — less than one in four

SecondaryCBC FOI Jan 2026Verified: 2026-04-29

WHO recommends accessible, community-based early interventions for children with autism — timely evidence-based psychosocial interventions improve communication and social engagement

Gov / Peer-ReviewedWorld Health Organization (2023)Verified: 2023-11-15
View our methodologyView all sourcesNext data update: 2026-07-28