The question that never goes away.
It the question that sits with you. It’s been there since diagnosis, maybe earlier. It gets quieter some days and louder on others.
Who will look after everything when I’m not here?
If you’re the parent of a special needs child or a child with profound disability — whether that child is seven or forty-seven — you’ve done more planning than most families do in a lifetime. Guardianship. Housing. Support plans. Wills. Trusts. But there’s one piece of planning almost nobody talks about. And left undone, it lands on exactly the wrong person at exactly the wrong time. Their funeral.
Who arranges the funeral if you’re not here?
When a person with profound disability dies — before you or long after — the people left to arrange things may be a sibling already carrying guardianship and care coordination, an aging co-parent managing alone, or someone appointed who never met your child.
Nobody in that list should be starting from a blank page. Not for this.
Pre-planning means the decisions are made by the person who knows your child best. You. The wishes are written down, and whoever is standing there in ten or thirty years isn’t left guessing.
Does the NDIS cover funerals?
As of today, the NDIS does not fund funerals. It funds supports for living — therapies, equipment, accommodation — and when a participant dies, their plan ends. No funeral component, no payout. Scheme rules can change, so it’s worth confirming the current position with your support coordinator. But as things stand, whatever your child’s funeral costs, it comes from somewhere else: your estate, their estate, their siblings’ pockets — or a plan you put in place now.
Where funeral planning fits in your bigger plan?
You already know the landscape: wills, trusts, guardianship nominations. Funeral planning sits
alongside all of it — and does a different job.
- It captures the decisions. A will deals with assets. It doesn’t say what music plays, the special shared memories, the special moments or that the service should happen at the little church your child loved. A funeral plan records all of it.
- It can address the cost. There are different ways to set money aside for a funeral, each withdifferent implications for your family’s circumstances and any payments you or your child receive. our financial adviser can walk you through what suits your situation.
- It doesn’t rely on anyone remembering. Instructions in a drawer need someone to find thedrawer. A documented plan, held where the right people can find it, works differently.
How any of this interacts with your trust and estate structures is a conversation for your adviser or solicitor. This article is a starting point, not financial or legal advice.
Questions to ask when the funeral may be decades away
You genuinely don’t know when a plan will be needed. Next year, or forty years after you’re gone.
So whoever you speak to, ask:
- Is the price fixed, and is that in writing? And exactly what’s included?
- Where is any money held, and how is it protected?
- Can the plan transfer if you move?
- Who can activate it? Make sure copies sit with your will, your child’s care file, and the people most likely to be there.
- Can the wishes be updated as your child’s life unfolds?
The answers matter more here than in any other kind of funeral planning — because of how long
this plan may need to wait.
Making it theirs
A funeral for a special needs child should be exactly as individual as they are. You’re the one who
knows the music that always got a reaction, the colours and objects that meant something, the
carers and therapists and bus drivers who should be thanked, and the stories that show who they
really were — beyond the diagnosis.
Write it all down. In your words, ready whenever it’s needed.
Telling the siblings
If your child has brothers or sisters, they may already be carrying quiet expectations about the
future. Telling them a plan exists — where it’s held, what it covers — lifts something real off their
shoulders.
You don’t need a family summit. A sentence will do: “It’s organised” Here’s the folder and the Funeral Directors name”.
The quiet relief on the other side.
Many parents expect this planning to be devastating — and find something closer to relief. Not because the sadness goes anywhere. But because the 3am question finally has an answer.
You’ve spent your child’s whole life making sure they’re looked after. This is the last piece. And it’s the one thing you can finish completely, now, while it’s yours to decide.
Frequently asked questions:
Can I pre-plan a funeral for my special needs child while they’re still a minor?
Yes. A funeral plan can be arranged by a parent or guardian at any age, and it simply waits until it’s needed — whether that’s soon or many decades away.
Why should parents of special needs children plan a funeral in advance?
Because your child may outlive you — and without a plan, the arrangements fall to a sibling, guardian or appointed decision-maker starting from a blank page. Pre-planning means the decisions are made by the person who knows your child best.
What happens to the funeral plan if I die first?
That’s exactly what a documented plan is for. It’s held where the right people can find it, and
whoever is responsible at the time can act on your wishes — no guessing required.
Why talk to a funeral director rather than just my solicitor?
They do different jobs, and you’ll likely need both. Your solicitor looks after the legal side — wills, trusts, guardianship. But a will is often not read until after the funeral has happened, which makes it the wrong place to record funeral wishes. A funeral director works on the practical side: what the service looks like, what it involves, and how your wishes are documented so they can be acted on straight away, by whoever is there. Solicitor for the estate. Funeral director for the farewell.
Specialist Services
Funeral Pre-Planning for Over 50s
Pre Planning Funeral for Special Need Kids
Pre Planning Funerals for Nursing Home Patients
Pre Planning Funerals for People with Dementia
Pre Planning Funerals for Terminally Ill Patients
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