Every parent thinks about what will happen to their children after they are gone. For parents of a child with an intellectual disability, that question carries a particular weight. The desire to ensure your child will be cared for, supported, and financially provided for, long after you are no longer there to advocate for them, is one of the most profound responsibilities a parent can face.
Making a Will is an important part of addressing that responsibility. But for parents in this situation, a standard Will is rarely sufficient on its own. Coleman Greig has particular expertise in advising parents on the full range of planning required to properly protect the future of a child with an intellectual disability, and we understand that this process involves deeply personal decisions as much as legal ones.
There are many considerations for parents when making a Will. The most important aim is ensuring that your child is cared for and can access funds for their ongoing needs. The challenge is that many people with an intellectual disability cannot independently manage a significant inheritance, and a direct bequest may inadvertently affect their entitlement to the disability support pension and other government supports.
Coleman Greig are available to service your needs no matter where you are located in NSW. Our network of offices are supported by the latest digital technology, enabling us to work with you in a way that suits you best.
Why Making a Will Is Different When You Have a Child With an Intellectual Disability
For most families, a Will addresses a relatively straightforward question: who should receive what, and on what terms. For parents of a child with an intellectual disability, the planning is considerably more complex.
A direct bequest to a person with an intellectual disability who does not have the practical or legal capacity to manage a significant inheritance can create serious problems. Assets received directly may push that person above the assets test threshold for the disability support pension, reducing or eliminating a government support payment they depend on. There may also be practical challenges in managing and accessing those funds without appropriate structures and oversight in place.
Beyond the mechanics of the Will itself, parents need to think carefully about who will make decisions for their child after they are gone, what structures will hold and manage the funds over potentially many years, who will oversee those structures and in whose interests, and what happens as circumstances change over time. A Will alone cannot answer all of these questions. Comprehensive planning requires a broader and more carefully coordinated approach.
What Are the Key Planning Decisions?
Working through the right estate planning for a child with a disability involves a series of deeply personal decisions that benefit enormously from specialist legal guidance. The key questions parents need to consider include the following.
Who will care for and advocate for your child?
Identifying the right people to take on a guardianship or support role after you are gone is one of the most important decisions in the entire plan. These arrangements do not happen automatically – they need to be thoughtfully identified, documented, and kept under review as family circumstances change.
How will funds be held and managed?
A direct inheritance is usually not appropriate for a person with an intellectual disability. Parents typically need to consider whether to establish a testamentary trust, a special disability trust, or a combination of structures, depending on the size of the estate and the specific circumstances of their child.
Who will manage the trust?
The choice of trustee is critical. The trustee will be responsible for managing the trust funds and making distributions for the benefit of the child, potentially for many decades. This decision deserves as much careful thought as the choice of structure itself, and it is worth considering whether a professional trustee or a trusted family member is better suited to that role in the long term.
What letter of wishes should accompany the Will?
A letter of wishes is a non-binding document, separate from the Will, that provides the trustee and carer with practical guidance about your child’s needs, preferences, routines, and care requirements. It does not form part of the Will and cannot be enforced, but it gives the people responsible for your child’s care invaluable insight into what you would have wanted for them. It is one of the most important and most overlooked elements of planning in this area.
Testamentary Trusts and Special Disability Trusts
Two structures are most commonly considered when planning for a child with an intellectual disability: testamentary trusts and special disability trusts.
A testamentary trust is a trust established under a Will that comes into effect when the Will-maker dies. Rather than assets passing directly to the beneficiary, they are held and managed by a nominated trustee for the child’s benefit. Testamentary trusts offer considerable flexibility. They can be tailored to the specific needs and circumstances of the child, and they offer potential tax advantages for income distributed to beneficiaries. They are a practical and widely used tool for parents who want to ensure their child is provided for without the funds passing directly into their hands.
A special disability trust is a specific type of trust established under the social security framework, which carries additional concessions — including an assets test exemption up to the relevant indexed threshold and gifting concessions for family members making contributions. A special disability trust can be established during a parent’s lifetime or under a Will, and is generally most effective where the amount being left falls within or near the assets test threshold.
These two structures are not mutually exclusive. The right approach depends on the size of the estate, the child’s circumstances, and the government support entitlements involved. Our team can advise on which structure or combination of structures best suits your situation.
Planning Beyond the Will
Comprehensive estate planning for a child with a disability does not begin and end with the Will. Several other legal arrangements need to be considered as part of a properly coordinated plan.
An Enduring Guardianship appoints a trusted person to make personal and lifestyle decisions on your behalf if you lose capacity during your lifetime. Putting this in place ensures that your own affairs are properly managed and that planning for your child can continue without disruption should your health decline before you pass away.
A Power of Attorney authorises someone to manage your financial and legal affairs during your lifetime. Together with an Enduring Guardianship, it ensures that both your personal and financial matters are in trusted hands if you are no longer able to manage them yourself.
Superannuation also requires specific attention. Superannuation does not automatically form part of a deceased estate, but it is distributed separately by the fund’s trustee, and the outcome can vary significantly depending on whether a valid binding death benefit nomination is in place. For parents whose superannuation forms a significant part of their overall wealth, the consequences of leaving this unaddressed can be serious, and specialist advice is essential.
Finally, family dynamics and sibling relationships may need to be addressed within the estate plan. Where there are other children in the family, parents often want to ensure that their planning for the child with an intellectual disability does not create unfairness or conflict among siblings. Thinking through these relationships carefully, and reflecting those intentions clearly in the Will, can prevent misunderstandings and disputes later on.
About Our Specialist: Stephen Booth
Coleman Greig’s work in this area is led by Stephen Booth, a consultant who has been involved with intellectual disability issues since 1984 and has dedicated the majority of his professional life to legal planning for families in this situation.
Stephen has written extensively in this area. His book “When I’m Gone” addresses the full range of planning considerations for parents of people with an intellectual disability, and he has co-authored “Special Disability Trusts: Getting Things Sorted” and “Planning for the Future” with the Council for Intellectual Disability. He is a regular presenter at conferences across Australia on topics related to planning for people with a disability.
In 2022, Stephen was recognised as Most Outstanding Legal Practitioner in Special Disability Trusts in Australia at the Enablement Awards — a national recognition that reflects his exceptional depth of knowledge and long-standing commitment to this area of law.
Stephen can be contacted directly by phone or email via his profile page.
How Our Team Can Help
Coleman Greig’s team has extensive experience assisting families with wills for parents of people with an intellectual disability and the broader estate planning that surrounds them. Depending on your circumstances, we can assist with:
- Advising on the most appropriate Will structure, including testamentary trust provisions tailored to your child’s specific needs and circumstances
- Drafting compliant special disability trust deeds where that structure forms part of or sits alongside the Will
- Advising on the appointment of appropriate trustees, guardians, and support people
- Preparing Enduring Guardianships and Powers of Attorney as part of a comprehensive estate plan
- Preparing a letter of wishes to accompany the Will, providing practical guidance to those who will care for your child after you are gone
- Advising on superannuation death benefit nominations to ensure your superannuation is directed in the way you intend
- Reviewing and updating existing Wills and estate plans where circumstances have changed
Speak With Our Team Today
Planning for your child’s future after you are gone is not something any parent should have to navigate alone. The earlier specialist advice is sought, the more options are available and the more thoroughly the plan can be developed and reviewed over time.
Coleman Greig has been working with families in this situation for decades. Our team brings both the legal expertise and the genuine human understanding needed to help you make the decisions that matter most.
To speak with a member of our team, please contact us directly or visit Our Locations to find your nearest office. This page is general in nature and is not a substitute for legal advice tailored to your specific circumstances.
