Terminal Diagnosis and a Son Who Has No Deputy

You have been given months, not years, and your disabled son has no deputy, no trust and no one lined up to take over. That is a frightening place to start from, but it is a workable one, because the tasks in front of you have an order — and doing them in the right order is what makes the time you have count.

The single most important thing to understand is that some of these jobs need you. A will and a trust have to be drafted to your instructions, and the terminal illness benefit sitting inside an existing life policy can be claimed and settled while you are still here to direct where it goes. Those are the tasks that die with you if they are left. The rest — a deputyship application, a care reassessment — take months to grind through the system, so they need starting now precisely because they will not be finished quickly.

This page sets out that order plainly: capacity first, then deputyship, then the will and the trust, then the local authority, then the money already inside your policies. Work down it, and hand as much as you can to the people who will carry it after you.

Start with the question that decides everything: does he have capacity?

Before you can work out who takes over, you have to be clear about what your son can decide for himself, because capacity is the fork the whole plan turns on.

Capacity is decision-specific. It is not a label a person carries for everything; it is assessed against a particular decision at a particular time. Your son may have capacity to decide where he lives day to day but not to manage a large sum of money, or the other way round. That matters here because it changes the route entirely.

Where he has capacity for a decision, nobody needs to be appointed to make it for him — he makes it. If he wants someone to help with his finances or his welfare in future, he can choose that person himself by making a lasting power of attorney, which is quicker and cheaper than the alternative and, crucially, is something he does rather than something the court imposes. Where he lacks capacity for the decisions that need making, someone has to be given legal authority to act, and that means the Court of Protection.

If he lacks capacity: start the deputyship application now

Where your son cannot make a particular decision for himself, an application to the Court of Protection is how someone is authorised to make it. That person becomes his deputy — for property and financial affairs, for health and welfare, or occasionally both. There are court fees and usually a solicitor's cost, and the process is not fast: a straightforward property and affairs deputyship commonly takes several months, and it cannot be hurried simply because your prognosis is short.

That timing is the reason to start today rather than to get everything else perfect first. If you are able to be appointed deputy yourself while you are alive, the arrangement is running and understood before you go. And you should think one step beyond your own appointment, because a deputyship ends when the deputy dies. The court can be asked to name a successor, and who that person is deserves as much care as the first choice — we cover the mechanics in who becomes your son's deputy when you die.

Draft the will and the trust while you can still give instructions

The will and any trust are the tasks that most need you, because they exist to record your intentions and no one can supply those afterwards.

For a disabled son who relies on means-tested support, leaving his share to him outright is usually the wrong move: it can push him over the capital limits and cost him the benefits he depends on. The standard structure is a discretionary trust, written into your will, with trustees you choose and a letter of wishes describing how he lives, what settles him, what frightens him and what the money is for. That letter is not legally binding, but it is the closest thing to your voice the trustees will have, and it is worth the hours it takes.

Choosing trustees is its own decision, and control is often the real point of it. Where family relationships are difficult, a discretionary trust is also the tool that lets a parent keep an ex-partner away from the money without keeping them away from the children. Instruct a solicitor now, tell them plainly what timescale you are working to, and they will usually prioritise the work.

Tell the local authority so a reassessment starts before the crisis

If much of your son's support is you — the prompting, the appointments, the cooking, the chasing — then a great deal of what he needs has never been written down as a formal care need, because you have quietly been meeting it. When you die, that support vanishes overnight unless something has been put in its place.

Telling the local authority now, and asking for a Care Act needs assessment (or a review of an existing one) that takes account of the fact you will not be there, starts the machinery moving while there is still time to shape it. A reassessment after a sudden death is a slower, colder process that happens to a family in shock. One begun now, with your knowledge feeding into it, is far more likely to land somewhere that works. It also surfaces any gap between what the council will fund and what your son actually needs — and that gap is the figure the rest of your planning has to cover.

Check whether an existing policy pays out early

Many people in this position are already insured and do not realise the cover can help now rather than only after death.

Most individual term policies include terminal illness benefit as standard. The insurer pays the sum assured early once a doctor confirms a life expectancy of under twelve months, and the policy then ends. Claiming early is not just about speed — it lets you see the money arrive, settle where you intended, and be handed to the trustees while you can still confirm that is right. Read the policy documents or simply ring the insurer and ask.

Two cautions. First, cover provided through your employer usually behaves differently: registered group life schemes generally pay only on death, into a scheme trust, so it is worth knowing that group life rarely pays out early on a terminal diagnosis before you count on it. Second, a pension is a separate decision with its own tax consequences, and whether to draw it or leave it after a diagnosis is finely balanced — we set out the trade-offs in drawing or leaving your pension after a diagnosis. If you find there is no personal cover in place and you are still insurable, an FCA-authorised broker can talk through what is realistic, though options narrow considerably once a diagnosis has been made.

Getting the money to the trust, not to your son

However the money arrives — an early terminal illness payment, or the sum assured on death — it should land in the trust, not in your son's own name. A policy can be written subject to the discretionary trust, or an existing one placed into trust, so the proceeds are held by the trustees from the outset rather than becoming his capital.

This is the step that protects everything else. A payment made directly to a disabled adult can take him over the capital limits for means-tested benefits and change what he pays towards his care, which is the exact opposite of what you are trying to achieve. Money held in a properly drafted discretionary trust is generally disregarded, because he has no fixed entitlement to it, while the trustees can still meet the real costs — including any recurring shortfall such as a supported-living top-up, the kind of monthly commitment that otherwise collapses when the person paying it dies, covered in what happens to a top-up fee after the payer is gone. Tell the trustees the policy exists and where the documents are; a trust nobody knows to claim on is no help at all.

It is worth thinking, too, about who else should know what you know. A sibling, a close friend, or a support worker who understands your son's routine can be told, in outline, what is planned and where the paperwork sits, even if they hold no formal role. A deputy or trustee working alone, weeks after your death, benefits enormously from someone else who can confirm what your son needs day to day and how he communicates it. Writing that down now, alongside the letter of wishes, is a small task that saves the people who come after you a great deal of guesswork at the worst possible time.

Scotland and Northern Ireland

The order of tasks is the same across the UK, but the names and the routes differ where the court is involved.

In Scotland there is no Court of Protection. Where an adult cannot make decisions for himself, someone applies to the sheriff court for a financial or welfare guardianship under the Adults with Incapacity (Scotland) Act 2000, and, as in England, that takes months and cannot be rushed. In Northern Ireland the framework is different again, moving towards the Mental Capacity Act (Northern Ireland) 2016, with financial matters historically handled through a controller appointed by the High Court. Means-tested benefits are UK-wide, so the discretionary trust point holds everywhere, and terminal illness benefit is a feature of the policy rather than of the nation. If you live in Scotland or Northern Ireland, the single change to your plan is to start the local guardianship or controllership route in place of a deputyship — and to start it just as early.

Frequently asked questions

Who takes over decisions for my disabled son if I die?

Nobody automatically. Where he lacks capacity for a decision, somebody must apply to the Court of Protection to be appointed his deputy, and that application takes months. Where he has capacity, he can appoint an attorney himself under a lasting power of attorney, which is quicker and cheaper. In Scotland and Northern Ireland the equivalent routes are guardianship and controllership.

What is terminal illness benefit and how do I claim it?

Most individual term policies include it as standard: the insurer pays the sum assured early once a doctor confirms a life expectancy of under twelve months, and the policy then ends. Check the documents or ask the insurer directly. Claiming early lets you see the money settled where you intended, ideally into the trust while you can still confirm it.

What should I do first?

Get the will and any trust drafted, because they need your instructions while you can give them. Start the deputyship application. Tell the local authority so a care reassessment begins before the crisis arrives. Then check whether an existing policy pays early, and make sure the trustees know it exists and where the paperwork is kept.