How to Choose Trustees for Your Disabled Child's Trust

By Neha Mehta | Chartered Accountant, Financial Coach and SEND Parent

I have three trustees. It took me a while to get there, and for a while, I did fall into a trap I see a lot of parents fall into too. But more on that in a moment.

First, what a trustee actually is, and what they are taking on when you ask them.

What trustees actually do

Trustees are the people who will manage the money inside the trust for your child. They make decisions about how and when funds are used, guided by your Letter of Wishes. They are responsible for, and deal with the annual administration, the solicitors, the accountants, the financial advisors, and any other professional advisers involved. They meet, discuss, and agree.

Agreeing is crucial: trustees must act unanimously. Not by majority. All of them must agree, every time. If they cannot reach agreement, the matter goes to court. This is not a theoretical risk, it is a legal requirement and reality that shapes everything about how you choose your people.

The trap I fell into

When I started thinking about who to choose, I went down a rabbit hole of trying to solve for everything. What if this person isn't around? What if circumstances change? What if they fall out? What if I pick the wrong one? What if, what if.

I nearly paralysed myself trying to anticipate every possible future scenario. And I know I'm not alone in this, because when I speak to other SEN parents, this is exactly where they get stuck too.

So what did I do? I did self-administered CBT and rationale that I can only work with what I have now. I cannot anticipate and provide for everything. What I can do is choose the right people for this moment, build in provisions for replacing a trustee when I'm no longer around to do it myself, and trust that the people I've chosen will figure the rest out together.

That last part matters a lot. They need to be people who can actually work together.

My three trustees — and why I chose each one

I have three trustees for Udi's trust, and I chose them deliberately to cover three different things.

The first is family. Someone with a legal and personal stake, who is bound to Udi by blood and by love. They however do not live in the UK, that adds its own complications. But since I can't solve for everything, I know I will have to come back to it later. But for now, I picked from what I had. And whom I could trust.

The second is someone who knows Udi personally, loves her for exactly who she is, and will fight for her the way a fierce older sister would. She is younger than me, which matters! She is more likely to still be around when Udi needs her most.

The third understands the SEND landscape in a way the other two don't. She would know what to fight for, what Udi is entitled to, and how the systems around her work. That knowledge is irreplaceable in a trustee.

Between the three of them, I have family loyalty, personal devotion, and specialist knowledge. No one person could bring all three. Together, they make a whole.

Before you name anyone — have the conversation first

This is something I feel strongly about. Do not assume someone will say yes. Do not assume they will even know what you are asking of them. And no one wants things done to them, but with them. So talk to them first.

Some people will say yes immediately. Some will be cautious. Some will find the whole conversation overwhelming — not because they don't love your child, but because the weight of what you're asking them to carry is real, and they feel it.

Have the conversation before you name anyone. Tell them why you want them specifically. Tell them what you value from them that you don't get from the others. Help them understand that they are one part of a team, not the sole person responsible for everything. That framing alone changes how people receive the question.

Practical things worth thinking about

Age and longevity. Two of my three trustees are from my generation. I'm aware that this may need to change over time. It's not set in stone, and the trust can be updated to reflect new trustees as circumstances change. What I have now is a safety net — in case something happens before I've had the chance to put everything perfectly in place.

Setting the trust up while you're still alive. This is something I will be doing for Udi in the next decade, it's worth a look as an option. Setting up the trust during your lifetime means you can iron out the processes, appoint the professionals, establish the annual routines, and make changes if something isn't working. It makes things considerably easier for the people left behind. A living trust also gives you the chance to see how it works in practice - which is something a Will-based trust, by definition, can't offer.

What happens if a trustee needs to be replaced. This is something to build into the terms of the trust itself, not leave to chance. Your solicitor can help you draft provisions for how a trustee can be added or removed if the need arises after you're gone. The terms of the trust are one of the most important parts of the whole arrangement and deserve careful thought.

Choose people who get along. Because decisions require unanimous agreement, trustees who fundamentally don't get along, or who have existing tensions, are a significant risk. This isn't about choosing people who agree on everything. It's about choosing people who will have the right approach, can have a disagreement and still reach a decision together.

What if you don't have many people to choose from?

I don't have a large pool of people to draw from. So I did the best I could from what I have. Most SEN parents I speak to are in a similar position. Our social circles can be smaller, our family situations more complex, and the number of people who truly understand our child's world is limited.

If that's your situation too, don't let the perfect become the enemy of the good. Choose the best you have now. Be open to, and build in the ability to change it. And consider whether a professional trustee, working alongside your personal choices, might fill a gap that the people in your life genuinely can't.

A STEP qualified solicitor can talk you through the options for professional trustees and what that involves in practice. For your own unique circumstances, please speak to a solicitor specialising in disability and estate planning.

If you are trying to decide between a Disabled Persons' Trust and a Discretionary Trust, I have written about the differences in detail here: Disabled Persons' Trust vs Discretionary Trust: What Is the Actual Difference?.

If you are just starting to think about the whole plan, I cover the Will and trust questions I asked first in What Happens to My Disabled Child When I Die?.

If you want to talk through how trustees fit into the wider plan for your child, I offer a free 30-minute discovery call. Book a free 30-minute discovery call.

Next in this series: what goes into a Letter of Wishes — the document that puts your voice in the room long after you're gone: [What Is a Letter of Wishes and Why Does Your Disabled Child Need One?]

For educational purposes only. Not regulated financial or legal advice. For personal recommendations, please consult a solicitor specialising in disability and estate planning.