Planning for a child with disability

Everything else on this page assumes the people you leave things to can manage what they're given.

When that isn't true, a straightforward will can cause real harm — money left directly to someone on a disability support payment can affect that payment, and money left to a person who can't manage it has to be managed by somebody.

This is also why the NDIS guides don't answer it. Those are about the plan of a living person. This is about the twenty or forty years after you.

Services Australia describes a Special Disability Trust as a way for families to plan for the long-term care and accommodation needs of someone with a severe disability.

The shape of it:

• One principal beneficiary, who has to meet the eligibility criteria
• The trust must provide for that person's accommodation and care needs
• It needs a compliant trust deed
• It needs an independent trustee, or more than one trustee
• There are restrictions on what it can invest in
• Annual financial statements, and audits when required

There are assets test and gifting concessions attached to these trusts. The figures change, and Services Australia doesn't put them on the overview page — check their site or ring them, and don't rely on a number you read anywhere else, including here.

Most people leave the money to a sibling, with an understanding that they'll look after their brother or sister.

It often works. It is also the arrangement that fails most visibly when it fails, because an understanding is not enforceable, and because the sibling's own life — a divorce, a bankruptcy, an illness, their own death — can take the money with it. Money left outright to a person belongs to that person, and to anyone who later has a claim on them.

If that is your plan, it is worth at least knowing that's what you've chosen.

Whatever structure you use, somebody will need to know how to care for your child, and you are the only person who knows.

Write it down while you can. Routines. What food they will and won't eat. What a bad day looks like and what helps. The names of people who know them — the support worker who's been there nine years, the GP who understands. What frightens them. What they love.

This has no legal standing and it may be the most valuable document you leave.

This is genuinely complicated — it touches wills, trusts, pensions, the NDIS and guardianship law, and getting it wrong costs the person you were protecting.

Pay a solicitor who does this specific work. Ask them directly how many Special Disability Trusts they have set up. Your state's public trustee also does this work and is worth a conversation.