1. What happens to my child if I die without a plan in place?

Generally, informal caring arrangements end when a parent can no longer act, whether through incapacity or death. Without documented guardianship, trust, or will arrangements, decisions about your child’s care, housing, and finances may fall to whichever family member steps in, often without clear legal authority, and this can take considerable time to sort out properly.

It’s not that nothing happens. It’s that what happens is decided by circumstance rather than by you.

2. Who will make decisions for my child if I can’t?

This depends on whether your child has capacity to make their own decisions. Where they don’t, an appointed guardian and attorney, arranged while you’re well enough to do so, can generally step in without a tribunal application. Without this in place, a family member may need to apply to a tribunal, which is often a slower and more stressful process, at exactly the point when things are already hard.

Guardianship for a child is automatically lost at 18. If nothing is set up afterwards, re-establishing that authority later, after a loss of capacity or death, generally means going through a tribunal process. Setting up enduring guardianship and power of attorney while you’re well is what allows someone to step in for you without that step.

3. Where will my child live if I’m no longer able to care for them?

Housing is consistently named as the biggest unknown for the families we speak with, more than the financial questions. Options can include staying in the family home, moving into NDIS-funded Supported Independent Living or Specialist Disability Accommodation, or living with a sibling or other family member. Each of these generally needs real lead time to arrange properly, and none of them resolves itself through a will alone.

This is often the piece that gets put off the longest, not because it’s less important, but because it’s the hardest to picture.

4. Will my child lose their pension or NDIS support if they inherit money from me?

It’s worth separating these two, because they work differently. NDIS access and plan funding are not asset or means tested, so an inheritance generally doesn’t put NDIS support itself at risk. What it can affect is a Centrelink payment, such as the Disability Support Pension, since that is assessed under an income and assets test. A direct inheritance can reduce or end that payment depending on the amount and how it’s held.

This is one of the main reasons families consider a Special Disability Trust or similar structure rather than a straightforward bequest, since it can affect how an inheritance is assessed for pension purposes. The specifics depend on your child’s circumstances and current rules, so this is one to work through with someone who can look at your situation directly.

5. Should I set up a Special Disability Trust?

A Special Disability Trust can hold and manage assets for the benefit of a child with a severe disability, and may receive concessional treatment under the Centrelink means test that applies to the Disability Support Pension, for both your child and, in some circumstances, for you as the contributing parent. This is separate from NDIS eligibility, which isn’t means tested. Whether an SDT is the right structure depends on your child’s needs, your family’s assets, and how it fits with the rest of your estate plan, so this genuinely needs individual advice rather than a general answer.

It’s also worth knowing that a trust is only as good as its recognition. We’ve seen situations where a trust existed on paper for years without ever being formally recognised by Centrelink, which meant it wasn’t providing the protection the family believed it was. Deed wording, timing, and process all matter here, which is why this part of planning for a child with disability is rarely something to draft alone.

6. Should I leave my estate equally between my children?

Not necessarily. An equal split can unintentionally disadvantage a child with disability, particularly where a direct inheritance affects a Centrelink payment they rely on. Wills often need to work alongside a trust structure rather than being drafted separately from it, so that the two pieces are actually pulling in the same direction.

7. What happens if my other children can’t or won’t take over caring for my child?

Where a sibling is expected to take on a future caring or financial role, that expectation is often assumed rather than actually discussed, which can create real difficulty later, sometimes resentment, sometimes a role nobody agreed to. Naming the plan clearly, and having the conversation while you’re able to lead it, tends to produce a much clearer outcome than leaving siblings to work it out after the fact.

And where there’s no sibling, or that role was never confirmed, formal guardianship and a documented care plan become more important, not less, since there’s no informal backup to fall on.

8. What if I become unable to care for my child before I die, not just after?

This is just as important to plan for as death, and it’s the piece most families haven’t thought through. Illness, injury, or ageing can end a parent’s caregiving ability well before death does. Guardianship and support arrangements generally need to cover both scenarios, incapacity and death, not just the estate side.

For many of the parents we speak with, this is actually the more frightening question. Death, at least, has a plan attached to it in most people’s minds. A stroke, a diagnosis, or a slow decline in your own health often doesn’t.

9. How do I start this conversation with my child?

Where your child has the capacity to participate, involving them in the process, to whatever extent is appropriate, is generally recommended over deciding everything on their behalf. Many families find it easier to raise the topic gradually, and to do it alongside a professional who can help frame the conversation in a way that’s honest without being frightening.

There’s no single right answer to how much to share, or when. But the tension between wanting to prepare your child and wanting to protect them is one almost every family in this position feels.

10. When should I start planning for this?

Research consistently shows that most parents worry about this question for years before doing anything about it. Planning generally works best well before it’s needed, since it preserves more options and avoids decisions being made under pressure during a crisis.

There’s no perfect moment. But there is a real difference between planning while you’re well and able to lead the process, and planning under pressure, later, when choices have narrowed.