So what happens when I’m gone? A guide for parents of children with disabilities.

04 May 2022

More than half a million Australians have intellectual disability and a growing number continue to be looked after by their parents well into adulthood.

But what will happen to our child with disability when we’re gone, and who will take care and watch out for them?

The happy fact is your child is likely to outlive you, so planning for their future is important.

Much of the stress associated with making arrangements for a future without you can be alleviated by having the right advice and information to guide you.

In a 2018 study conducted by UK disability service provider, Sense, found an overwhelming 75% of research participants said they do not have a plan in place for what will happen when they can no longer support their loved one, and 67% live in fear of what will happen after that.

If you are one of those statistics, keep reading.

By planning now you will have peace of mind that everything is going to be OK. Before you start your journey, here’s a few things you should consider.

Please note: This is not legal advice. Always consult a lawyer before you develop your legal planning for the future.

1. Set your child up for success

Start taking necessary steps to achieve their ultimate goal of independence by trialing and enrolling into programs that promote growth and independence.

Preparing your child for employment might be one of the best ways to ensure they are supported in the future. We hear time and time again about how employment has helped people with disability gain new skills, feel part of a team and earn an income. If this is a goal for your child, take a look at our employment opportunities for people with disability.

If the ultimate goal for your child is to live independently, explore Supported Independent Living (SIL) options in your area. The benefit of SIL is the opportunity to trial the home, housemates, and see if it’s right for the individual. Our blog ‘Confused about Supported Independent Living?’ answers the most asked questions about SIL.

2. Join relevant support groups

Joining a support or community group in your area can provide you and your child an avenue to meet new people, network and find the people you can rely on. These groups can provide ongoing support to your family, and connect you with resources in your area. A great starting point is contacting your Local Area Coordinator, they will help you learn about support available in your local community

3. Add a disability trust to your will

A Special Disability Trust is a way that you can plan for the long term care and accommodation needs of your loved one with a disability.

Special Disability Trusts were created by the Federal Government in 2006 to allow parents and other family members to provide assets for a person with a ‘severe’ disability, without it affecting their entitlement to the disability support pension. But before you can establish a Special Disability Trust, the person with disability, who is the beneficiary, will need to be assessed as ‘severely disabled’ under the legislation for this type of trust.

4. Write a letter of intent establishing your wishes for future care and living arrangements

A letter of intent memorialises your knowledge of your child’s needs so that you may guide future guardians and trustees in providing the best possible care.

This letter of intent should include:

  • Family history
  • Future goals
  • Daily schedule
  • Diet
  • Medical history
  • Education
  • Employment
  • Living and social environment
  • Behaviour and interests
  • Other relevant information

For a template, take a look at the Department of Social Services booklet ‘Planning for the Future: People with disability.’

5. Further protect your wishes by seeking specialist legal advice

A legal representative in this area will be able to advise you on how to nominate an appropriate power of attorney or testamentary guardian you trust to act on your child’s behalf. We’ve created a guide - “What will happen when I’m gone?” in conjunction with La Trobe University Law School to help you legally plan for the future. This guide covers topics such as wills and estate planning, guardianship, power of attorney, trusts and special disability trusts.

6. Identify a support network

You may already have a network of support in place of people who you can count on.
But if you’re yet to establish a support network make sure to include your child so that they are comfortable with who will be there to support them when you’re no longer around.

The best tip we can give you to choosing the right people is finding that person who loves your child. No one can replace you as a parent but what you can do is assemble a number of people who specialise in various areas that will be required in your child's life. This could be a sibling or a close friend, but having a team in place means there are several people who will have your child's best interest at heart.

7. Establish a good relationship with an NDIS support coordinator

Having a good relationship with an NDIS support coordinator or other representative to assist with ongoing funding and plan management will ensure the necessary support services remain in place well into the future.

If you are still uncomfortable with undertaking this process, it’s a good idea to consider the alternative. What would happen if these things were not in place and you were to die suddenly?

How would it affect other family members if no plans were in place? Who would become their decision maker? Do you trust others to understand the needs and life goals of your child?

You cannot prepare your child for their sense of loss when you go but you can put things in place to minimise the instability and upheaval they are likely to face. Disrupted routines and the possibility of being uprooted from the familiar environment of home is very common when a loved one passes. If your child has reached adulthood, you may already have established some independence in their life. For someone who requires more support, it is an important exercise to consider how you will pass over information that is crucial to the continuity of their care and independence.

It’s hard for many of us to come to terms with our mortality. When we have dependents this is amplified significantly. And when those we love unable to look after themselves or live independently, well, that’s extraordinarily difficult to come to terms with. As you are able to provide a stable and secure life today, think of the opportunity you have to lock in the necessary support and funds to deliver protection and supports for tomorrow.

After all, a plan for a happy future is all any of us can ask for.

8. Where can I go for help?

The Law Society in your State or Territory will assist you to find a solicitor who has experience in working with people with a disability, or the Public Trustee is available to assist as well.

If you need support navigating the NDIS, we are always happy to help. Feel free to get in touch with us on 1800 112 112 if you have any questions about the NDIS.

Contact us to find out how we can support you


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