Why planning for end of life is important
Planning for end of life and making sure you have an updated Will and other important legal documents can provide peace of mind that your loved ones will be protected.
If you have a child living with physical and/or intellectual disability, this can add complexity as there are more things to consider. Most importantly, planning how to provide for, and have suitable care organised for a child with disability when you are gone.
This process can be overwhelming and it can be difficult to know where to start.
We hear so frequently...in recent years of that 'midnight anxiety' felt by parents and siblings as they navigate what the future might look like...this is further compounded when making considerations for a family member with disability.
Emily Caska, CEO of Down Syndrome NSW
What legal documents you will need
There are 3 important estate planning documents you need to have to ensure proper plans are in place for your loved ones following your death. It’s also important to ensure your own personal and financial affairs will be looked after in the event you lose capacity to manage your own affairs. These documents are:
End of life planning guide
Our step-by-step guide, developed with Down Syndrome NSW, will help you get started.
What to include in your Will
Appointing an executor
Your executor administers your estate when you die. They will be responsible for identifying, securing and protecting your assets, finalising your taxation affairs, selling your assets (if required), and distributing the assets as outlined in the terms of your Will.
Your executor must be someone you trust, who is comfortable dealing with legal and financial matters, and has the time and willingness to do the job. Your executor can be a family member(s) or friend(s), or a trustee organisation like NSW Trustee and Guardian.
Setting up a trust for your child
In certain circumstances, setting up a trust for a child in your Will might be a good option if you have particular concerns about your child managing their inheritance. Setting up a trust is a way to ensure their inheritance will be looked after.
Your Will sets out how the funds are to be used for your child’s benefit, and what happens to any remaining funds after your child’s death. You will need to choose a trustee. The trustee is the person(s) or trustee organisation who will manage the inheritance. Most people choose to have their executor also act as the trustee, but it is possible to have someone different if you wish.
Getting financial advice
It’s a good idea to get financial and taxation advice before making your Will so that you’re informed about any taxation implications of gifts you're making and any impact the inheritance may have on the Centrelink entitlements of your beneficiaries.
Your child may be receiving a disability support pension and/or other social security entitlements, and it is good to know if and how this will be impacted after your death as it may influence how you decide to provide for your child in your Will.
Testamentary Guardianship
If you have a child under the age of 18 years, you can appoint a guardian for your child in your Will (known as a “testamentary guardian”). A testamentary guardian is responsible for the welfare and upbringing of children until they turn 18 years of age.
How to choose an Enduring Power of Attorney
When choosing someone to be your attorney under your Enduring Power of Attorney, you must choose someone who is good at dealing with financial matters, and who will act in your best interests. Unfortunately, financial abuse does happen, which can result in significant stress and financial loss, so you must ensure your attorney is trustworthy. Some people appoint family members or friends and others may appoint NSW Trustee and Guardian if there is no one else.
Your nominated attorney can only use your money and assets for your benefit and not for anyone else unless your Enduring Power of Attorney document states otherwise. If your child (or indeed anyone else) depends on you financially, it will be important to ensure the document provides instruction that your attorney is authorised to use your money and assets for the benefit of your child and/or other dependents.
How to choose an Enduring Guardian
When choosing who to appoint as your Guardian under your Appointment of Enduring Guardian, consider who you would trust to make decisions about your healthcare, lifestyle, accommodation, and medical treatment, in the event you couldn’t make the decisions yourself.
These are very personal matters. You may decide to appoint the same person as your Attorney and your Enduring Guardian, but you can also appoint different people to each role if you wish.
Get professional advice
In most cases, providing for a child with disability is too complex for a DIY Will and is not recommended. There are strict legal requirements for making a valid Will.
If you make your Will without professional assistance, you risk making a mistake and miss out on getting proper advice about all the matters to consider when providing for a child with a disability.
In NSW it is not possible to make an Enduring Power of Attorney or appointment of an Enduring Guardian without professional assistance, as those documents must be witnessed by certain prescribed witnesses, which include a solicitor or an approved NSW Trustee and Guardian staff member.
If your child is an adult
What if your child is over the age of 18 but does not have the capacity to manage finances or important documents?
There are different legal tests to be met for different documents. For example, to have capacity to make a Will, a person must:
- understand what a Will is and how it works
- have a general understanding of what their assets are and how much they're worth
- be able to think about the people in their life who might claim part of their estate
- not have any delusions (false beliefs) that affect their decisions about their Will.
It’s possible a person may have the capacity to make one of these documents, and not the others. Your child’s capacity to make these documents would usually be assessed by their Solicitor or accredited staff member at NSW Trustee and Guardian, and a medical report may be needed.
Learn more about what it means to lack decision-making capacity.
Special Disability Trusts
If your child is over 18 and depends on you for care
If you have a child over the age of 18 years or, once your child reaches the age of 18, it’s not possible to nominate a guardian for them in your Will, even if they are dependent upon you for care at the time of your death. Some important considerations include:
- If you currently assist your child in looking after their finances (including receipt of any pension or other income and payment of expenses) as well as health, lifestyle, accommodation, and medical treatment who is likely to step into this role after your death, or if you can no longer do it due to illness or other reasons?
- Are there other family members (for example, siblings) who would take on this role?
Otherwise, it can be necessary for an application to be made to the NSW Civil and Administrative Tribunal (Guardianship Division) to have a financial manager appointed. If there's a family member or close friend who is willing to take on this role and who would be suitable for the role, the Tribunal prefers to appoint such a person. If there is no one suitable then NSW Trustee and Guardian can be appointed by the Court as the financial manager as a last resort.
Next steps
We know there's a lot to understand and consider.
First, we suggest researching more about some of the topics discussed above and talking to others you know who may be facing similar decisions.
Then start having conversations with your immediate family about the options available to you and decisions to be made about these important documents.
When you have an idea of what you’d like to do there are 3 options:
- Contact your family solicitor or a solicitor who has been recommended to you to start the discussion about what is best for you and your child.
- Contact the Law Society of NSW Solicitor Referral Service to find solicitors in your area who are estate planning and trusts specialists.
- Contact NSW Trustee and Guardian, who have a dedicated team ready for you to start your Wills and Estate Planning journey. You can call us on 1300 102 030 or email: dsnswenquiries@tag.nsw.gov.au
Resources
Contact NSW Trustee and Guardian Wills
For Wills and estate planning enquiries, call:
1300 102 030 Monday to Friday from 9am-5pm.
More options to contact us.