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Budget 2026: $965M budgeted, 67,509 children still waiting. Read our analysis →

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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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How many children are on the Ontario autism waitlist in 2026?

As of January 2026, **88,175 children are registered with the Ontario Autism Program**. [FOI] However, only **20,666 (23.4%)** have an active Core Funding Agreement. This represents approximately 285% growth in the waitlist since 2019, with over 67,000 children still waiting for essential funding.

Source: CBC FOI Jan 2026, FAO Report 2024

How long do families wait for Ontario autism services?

Ontario autism wait times for core clinical services now exceed **5+ years** (2026). Most families currently receiving invitations registered in 2020 or earlier. This delay far exceeds the sensitive early intervention window recommended by developmental specialists. [FAO]

Source: CBC FOI Jan 2026, FAO Report 2024

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]

Guides

How to Set Up a Henson Trust for Your Disabled Child in Ontario

A Henson Trust is an absolute discretionary trust that allows families to leave an inheritance to a person with a disability without affecting their Ontario Disability Support Program (ODSP) eligibility. Named after the 1987 Ontario court case that established the legal precedent, the Henson Trust is the most important financial planning tool available to Ontario families supporting a person with a disability.

This is an independent advocacy resource providing publicly available information. It does not represent any government body, professional organization, or service provider.

How to Set Up a Henson Trust for Your Disabled Child in Ontario, Quick Summary

  • A Henson Trust is an absolute discretionary trust that allows families to leave an inheritance to a person with a disability without affecting their Ontario Disability Support Program (ODSP) eligibility.
  • Understand How a Henson Trust Works
  • Consult a Disability Estate Planning Lawyer
  • Choose Your Trustee Carefully
  • Estimated time: 4-8 weeks · Difficulty: advanced
  1. Home
  2. ›Guides
  3. ›How to Set Up a Henson Trust | End The Wait Ontario
Advanced4-8 weeks

Step-by-Step Guide

1

Understand How a Henson Trust Works

A Henson Trust is an absolute discretionary trust where the trustee has complete discretion over when and how funds are distributed to the beneficiary. Because the beneficiary has no legal right to demand distributions, the trust assets are not counted as the beneficiary's assets for ODSP purposes. This allows the beneficiary to maintain eligibility while having access to supplemental funds.

2

Consult a Disability Estate Planning Lawyer

Henson Trusts have specific legal requirements that must be met exactly, or the trust may be deemed invalid and the assets counted against ODSP eligibility. Engage a lawyer who specializes in disability estate planning — not a general practice lawyer. The cost typically ranges from $1,500 to $3,000 and is one of the most important investments you will make.

3

Choose Your Trustee Carefully

The trustee manages the trust and makes all distribution decisions. Choose someone who understands your child's needs, is financially responsible, and is likely to outlive you. Consider naming a professional trustee or trust company as a backup. Avoid naming the beneficiary or their spouse as trustee, as this can jeopardize the trust's ODSP protection.

4

Define the Trust Terms

Work with your lawyer to draft the trust document. Key provisions include: the absolute discretionary nature of distributions, trustee succession plans, investment powers, guidelines for how funds should be used (quality of life enhancements, not basic needs already covered by ODSP), and provisions for trust termination and residual beneficiaries.

5

Fund the Trust Through Your Estate Plan

Most Henson Trusts are funded through your will (testamentary trust). Update your will to direct the inheritance to the Henson Trust rather than directly to your disabled child. Coordinate with RRSP/RRIF beneficiary designations and life insurance policies. Consider an RDSP rollover upon death to maximize tax efficiency.

6

Communicate the Plan to Family

Inform other family members — especially grandparents and relatives who may leave bequests — about the Henson Trust. Well-meaning relatives who leave money directly to your disabled child could inadvertently jeopardize their ODSP eligibility. Provide them with the trust details so they can direct any gifts or bequests appropriately.

Frequently Asked Questions

Will a Henson Trust affect my child's ODSP eligibility?
When properly drafted, a Henson Trust does not affect ODSP eligibility. The key is that the trustee has absolute discretion over distributions, meaning the beneficiary cannot demand access to the funds. ODSP therefore does not count the trust assets as the beneficiary's resources.
How much does it cost to set up a Henson Trust?
Legal fees for establishing a Henson Trust typically range from $1,500 to $3,000, depending on the complexity of your estate and the lawyer. This usually includes the trust document, updated will, and powers of attorney. Ongoing trustee administration costs, if using a professional trustee, are separate.
Can I set up a Henson Trust while I am still alive?
Yes. While most Henson Trusts are testamentary (created through a will and funded upon death), you can establish an inter vivos (living) Henson Trust funded during your lifetime. This may be advantageous for tax planning or if you want the trust operating before you pass away. Consult your lawyer about which approach suits your situation.

Sources

1

Ontario Disability Support Program Act

Asset exemption rules for absolute discretionary trusts (ontario.ca/laws)

2

ARCH Disability Law Centre

Legal resources on trusts and estate planning for persons with disabilities

Related Guides

Transitioning to Adult Autism Services in Ontario

Advanced6-18 months of planning

How to Apply for the Canada Disability Benefit

Intermediate2-4 weeks

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