Writing a Letter of Wishes Your Trustees Can Act On

A letter of wishes is how you tell the people who will be in charge of your disabled child's money and care everything you know that they do not. It sits alongside your will and any trust you have set up, it is not legally binding, and that is deliberate. What makes a letter of wishes for a disabled child work is not how moving it is — it is how specific it is. Trustees can only act on detail concrete enough to use.

The instinct is to write something heartfelt and general: keep her safe, make sure she is happy, look after her. None of that is usable by a trustee reading it in a solicitor's office after you have gone. What they need to know is how she tells you she is in pain when she has no words for it, which sounds send her into distress, who she trusts and who she does not, and what you would spend the trust's money on if you were still here to decide. That is the material a trustee can actually act on.

This page gives you a working structure, section by section, so you are not staring at a blank page. Then it makes one blunt point that is easy to miss while you concentrate on the words: a letter telling trustees what to do with the money only helps if there is money in the trust for them to do it with.

What a letter of wishes is, and the one thing it is not

A letter of wishes is a private document addressed to your trustees, and usually to your executors and any guardians as well. It explains what you want, why, and how — in a level of detail that would never fit inside a will. Unlike the will, it is not a legal instruction. Trustees are expected to read it, take it seriously and follow it where they sensibly can, but they are not compelled to.

That non-binding quality feels like a weakness until you see why it is there. A discretionary trust exists precisely so that the people in charge can respond to circumstances you cannot predict — a change in your child's health, a new benefit rule, a home that turns out not to suit them, a chance that only appears in fifteen years' time. If the letter bound them absolutely, the flexibility that makes the trust useful would be gone. So the letter guides, and the trustees decide. In practice a clear, specific, dated letter is what trustees lean on hardest, and professionals treat it as strong evidence of what you intended.

It is worth knowing that the same tool exists for a different audience. If you also have younger children, the people you appoint to raise them need their own version, and we have set out how to write it in the guide to a letter of wishes for the people raising your children. The letter for your disabled child's trustees is a close relative of that document, but it is about money and long-term care rather than day-to-day parenting.

Why specific beats heartfelt

Imagine the trustee. They may be a sibling, a trusted friend, a solicitor, or some combination. They care, but they have not spent every day of the last twenty years learning what you know without thinking about it. When a decision lands on them — whether to fund a particular placement, how to respond when your child is refusing to eat, which of two support workers to keep — they have only what you wrote down and what they can piece together.

A sentence like "I want her to be happy" gives them nothing. A sentence like "she settles when the same two carers work with her, and becomes very distressed with agency staff she does not know, so I would rather the trust pay for continuity than save money on cheaper cover" gives them a decision. The whole craft of the letter is turning the things you do on instinct into instructions someone else can follow. Write it as though the reader has never met your child, because one day the person reading it may not have.

Writing down who your child is

The first half of the letter is a portrait. Take it a piece at a time.

How they communicate. How does your child tell you they are happy, frightened, in pain, tired or unwell? What do they understand of what is said to them? Do they use words, signs, a device, or behaviour you have learned to read? Spell out the signals a stranger would miss — the specific behaviour that means "I am overwhelmed", or "something hurts and I cannot tell you where".

A good day and a bad day. Describe both. What does a good day actually look like, hour by hour? What tips a day into a bad one, and what pulls it back? A trustee funding support needs to recognise when things are going well enough to leave alone and when to step in.

Health, medication and the people who treat them. List the conditions, the medication and what it is for, the clinicians and services involved, and the appointments that must not be missed. Name the GP, the consultants, the therapists and the social worker. Say what has been tried and abandoned, so nobody wastes a bad year rediscovering it.

Food, routine and sensory needs. What they will and will not eat, the routines that hold the week together, the textures, sounds and lights that help or harm. These are the small things that decide whether a placement works, and they are exactly what gets lost when a parent is no longer there to mention them.

The people who matter. Who does your child love and trust? Who should stay in their life, and who should not be given a role? Name siblings, friends, carers and relatives, and be honest about relationships that are difficult. Trustees cannot preserve the important connections if they do not know which ones they are.

Writing down the decisions you would make

The second half of the letter is about judgement — the calls you would make yourself and now have to hand over.

What you would spend the money on, and what you would not. Be specific. Would you fund a car and a driver so they can get out, a better room in a chosen home, a support worker for activities the council will not pay for, a holiday, dental treatment, hobbies? Equally, is there anything you would refuse — a placement you distrust, spending that would only benefit someone else? Trustees are far more willing to spend well when they know they are doing what you wanted, and far more likely to hoard the fund uselessly when they are guessing.

Where you want them to live. Set out your preference — staying in the family home with support, supported living, a particular kind of setting, or somewhere near a named relative. Explain the reasoning, because circumstances may rule out your first choice and the trustees will then need to know what you were really trying to achieve.

How disagreements should be handled. Say what you want to happen if the trustees and a family member disagree, or if two trustees cannot settle a decision. Naming the person whose view should carry the most weight on your child's day-to-day life can prevent a stalemate that leaves your child stuck in the middle.

The blunt part: a letter with no money behind it changes nothing

You can write the finest letter of wishes ever drafted and it will achieve nothing if the trust is empty. Trustees act on the letter by spending the fund. No fund, no action. This is the point that goes missing while everyone concentrates on the will and the trust deed, and it is the point that decides whether any of this works.

So the letter must say, plainly, what is meant to pay into the trust — which savings, which share of the estate, and above all which life insurance policy. And the nature of that policy matters more here than almost anywhere. Your disabled child's need does not end on a birthday; it lasts their life and, quite possibly, decades beyond yours. The cost of the support that replaces what you do for free is set out in our look at funding fifty more years of care after you are gone, and it is rarely small.

A term policy that expires at 70 or 75 pays nothing if you die later, which is why families in this position turn to cover that cannot lapse before they do. We have set out the logic in the piece on cover that has to outlive you, and the wider decision between tying up an asset and simply insuring your life is compared in a life interest trust against life cover for the children. If you want the funding side priced against your own trust and your own child's needs, you can get life insurance quotes and have an FCA-authorised broker size it so the trust is actually funded when the letter is finally read.

Keeping the letter alive

A letter of wishes is not a write-once document. Store it with the will and the trust deed so it is found at the same time, and give copies to the trustees now, while you can still sit with them and explain it in person. That conversation does more than the paper does; the letter is the record of it.

Then keep it current. Date every version, and rewrite it whenever something real changes — a new diagnosis, a house move, a carer who leaves, a relationship that shifts, a trustee who can no longer act. An out-of-date letter can be worse than none, because it sends the trustees confidently in the wrong direction. Ten minutes once a year to check it still describes the child you have now is time well spent.

Scotland and Northern Ireland

A letter of wishes is guidance rather than a legal instrument everywhere in the UK, so its purpose and the way you write it do not change from one nation to another. What sits underneath it does. Trust law and the rules of succession differ in Scotland, and Northern Ireland runs its own system, so the trust the letter supports should be drafted with local advice. If guardianship or the appointment of someone to act for an adult who lacks capacity is part of your plan, those regimes differ too across the three legal systems. The letter itself, though — the portrait of your child and the decisions you would make — carries the same weight wherever you live. You can read the surrounding issues in our guide to dependants and unusual family shapes.

Frequently asked questions

Is a letter of wishes legally binding?

No. It guides your trustees rather than instructing them, and that is deliberate: a discretionary trust works because trustees can respond to circumstances you could not foresee. In practice a clear, detailed letter is what trustees rely on most, and professionals treat it as strong evidence of what you intended, so it carries real weight even without being binding.

What should it actually contain?

How your child communicates, what a good day and a bad day look like, their medication and the clinicians who treat them, food, routines and sensory needs, the people who matter to them, what you would spend money on and what you would not, where you want them to live, and how disagreements between trustees or family should be handled.

Where should I keep it?

With the will and the trust deed, and give copies to the trustees while you can still explain it to them in person. Date every version and rewrite it when things change. Tell them which assets or policies are meant to fund the trust, because a letter with no money behind it changes nothing.