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What happens when I am gone?

“What happens when I am gone?” - This is one of the hardest and most frequently asked questions of parents of adult children with disabilities, especially if those adult children are still at home or being supported in a significant way by their parents. The thought of dying is scary for anyone, but it is petrifying to think you are going to leave the person you have cared for your entire life behind with an uncertain future.


This blog is for the parents of adult children with disabilities. Most likely adult children who have an intellectual disability, cognitive impairment, are non-verbal or are neuro-diverse. The reason I pinpoint those people is that they are still finding it extremely hard to access fundamental human rights of employment, housing, services and education in Australia. Without somewhere to live, somewhere to work or someone to help you with everyday tasks, the future can be especially uncertain. In the absence of the protection or promotion of these human rights, parents and families do more. They keep their adult children at home longer; they support their everyday care needs and plan for their housing future.


When in crisis, these families call out for help, and those calls can go unanswered or are sometimes semi-answered by funding bodies like the National Disability Insurance Agency or charity groups.


Before a crisis, though, parents and families know that the system they have in place might not survive their death. Something needs to be done, but a lot of the time parents do not know what. Thus the question, “what happens when I am gone?”. This big question has a couple of answers that need to work together to create a proper solution:

  1. The way services are funded and delivered, and I can’t answer that - I am a mere, mortal lawyer!

  2. Community attitudes. We need to have a better respect for the rights of people to live independently and have housing, access services, healthcare and employment. I write many blogs on this, so I won’t repeat it on this one.

  3. Legal arrangements. That is what I want to talk about!

Fact 1: Everyone dies.

Fact 2: Everyone anticipating dying should have a will.

Here are my two pro tips for estate planning if you have a child with a disability whose world will not survive when you’re gone:


1. Your will

As per ordinary, boring life practice parents of adult children with disabilities should have a Will. The Will will divide up their estate between the beneficiaries, and they can make arrangements as anyone else would. However, what parents do not always realise is that you can make particular provision for your children with disabilities (in the old-still-used-for-wills-and-estates language, “special needs”). There is capacity in your Will to account for some of those strategies that you have in place right now, which are holding everything together. For example, you can express specific wishes for their ongoing care or living arrangements.


Having all of this in place can save legal costs after you die but also can give you peace of mind knowing what how your estate will start to answer one-third of that big question!


2. Special Disability Trusts

A less ordinary way that families can provide for their children (adult or under 18) with disabilities after they are gone is through a Special Disability Trust (SDT). An SDT is a trust that provides for one beneficiary: the person with a disability to provide for their reasonable care and accommodation. An SDT can be set up while you are alive or as a testamentary trust through your will.


It is not an option for everyone because you need to have enough assets to put into to make it worthwhile and/or the beneficiary has to be assessed as ‘severely disabled’ through the “SDT beneficiary assessment process”. But it is an option worth considering. A lot of families do not know about them.


Families can use them in different ways, but they always have a focus to provide for the accommodation and care for a person with a disability. It is important to note at the outset that an SDT will not create new resources, so it is about structuring what assets you have for that specific benefit. There are some concession and tax benefits which are best discussed on an individual basis. An SDT can provide needed peace of mind to a family with an adult child with a disability.


There is a wealth of information on SDTs available here.


Of course, you can come and chat with Equality Lawyers if you want to explore this option further.


A final note …


The last important part of working through “legal arrangements” is picking a lawyer! It is important to choose a lawyer who understands disability and wills and estates. Understanding disability in the sense of diagnosis, day-to-day experience and also service systems like the NDIS is critical to getting the right “future legal arrangements” in place.


If you want to talk through your options, or finally get around to sorting your affairs out, give me a call to have a chat. My details are here.

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