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Planning for a child with additional needs isn’t just emotional – it’s financial. Leaving money outright can unintentionally put their benefits at risk or leave them vulnerable to exploitation. The right will and trust can protect their future and give you peace of mind.
From choosing the right type of trust to writing a letter of wishes, this guide explains the smart steps every family should take. With expert advice and practical tips, you’ll learn how to safeguard your loved one’s security for the years ahead.
What’s on this page?
Families should start by working with professionals to put the right legal and financial structures in place.
This is important because depending on the individual, someone with a learning disability may not even be able to receive the money left to them in a regular will. Instead, the Court of Protection could require a deputyship order before anyone can manage it, and they might make decisions that aren’t what you would wish.
It means that doing nothing or taking a ‘wait and see’ approach won’t cut it when it comes to planning for a vulnerable loved one’s future. Instead, families must be aware of the pitfalls and intentionally make a plan to sidestep them. That often means confronting the question that every SEND parent dreads most: What will happen when I’m no longer here?
Rhiannon Gogh, chartered financial adviser, author of Planning with Love and mother to a 15 year old with complex autism, explains: “No family wants to think about this, but once they start to create a vision for the future and take steps to make that possible, they often feel a huge weight lifted off their shoulders.”
Emma Cadey, a wills and trust manager at the charity Mencap, says: “It can be daunting to think about what will happen when you are not here but acknowledging what has to be done is a great first step.”
Attending a talk, in person or online, can help you to understand what to do next. Mencap runs regular ‘Planning for the Future’ webinars for parents, carers and advisers, in person and online.
With that knowledge in place, you can plan what you would like the future to look like, asking yourself:
Addressing it, rather than putting it in a mental box marked ‘too terrifying to think about’, can start to make it all seem more possible. Many solicitors will provide you with a list of things to think about, so you can feel prepared before any discussion with a professional.
Gogh explains: “Really think about your vision and nail it down. Prepare yourself for the questions you are going to be asked. Think about what you want to know and be prepared to voice it. And crucially, acknowledge and process how hard this feels, so you don’t get too upset when you need to keep a clear head.”
But don’t feel you have to have all the answers. The professionals are there to guide and support you.
Philip Warford, managing director of Renaissance Legal, which supports families of disabled and vulnerable people and also runs seminars, says: “We work with the family to think very practically about what their child’s future looks and feels like. We encourage them to speak to other families, as well as the schools and charities they have connections with.”
David Raeburn, director of Mencap Trust Company, suggests making two lists: What you want to happen and what you don’t want to happen. “Once you have an idea in your mind, you can learn about the mechanisms that are available to your family to make it a reality.”
A will is the mechanism to transfer assets to someone else after you die, while a trust is the legal “container” that can hold those assets for your loved one, without handing them money outright.
Warford says: “A trust allows you to provide for your child without making a gift directly to them. Instead, the gift is placed under the control of trustees to use for the benefit of your child with SEND and any other beneficiaries.”
A trust can hold assets including money, property and investments for the benefit of your loved one with a vulnerability. At the same time, it protects them from the very serious pitfalls of directly receiving an inheritance.
A trust can be created in your will, only coming into effect when you die, or you can set one up in your lifetime to take immediate effect.
Setting a trust up in your lifetime lets other people transfer money into it and allows you to give instructions to pension companies or employers about where you’d like any payouts to go in the event of your death.
A trust in your will means you can hold on to your assets until you die and can mean less grappling with complex tax issues during your lifetime.
A Trusts and Estate Planning (TEP) solicitor will be able to guide you about the best route for you.
A solicitor can also help you decide which of the two main types of trust suits your circumstances. The options are:
While that sounds relatively straightforward, nailing the details can be complex, and needs specialist advice.
“But don’t let the minutiae stop you taking the big, important first step of setting up trust,” says Warford. “Once they have done it, families say to us ‘I can sleep at night, knowing my child will be safe’.”
While your will lays down what you want to happen to your property, money and investments, pensions and workplace benefits such as death in service payouts aren’t covered by a will. They usually pass by nomination or expression of wish.
Ask a solicitor or financial adviser with knowledge in this area how best to align these with your trust and update the forms accordingly.
There’s also the issue of making others aware of the pitfalls for a vulnerable person of receiving a direct inheritance.
Cadey from Mencap explains: “Having as little as £6,000 in savings can impact their means tested benefits and around £16,000 could stop them completely.”
Tell anyone likely to leave money to your child about the trust you set up so that they can direct any inheritance into it. Alternatively, they can set up a trust in their own will.
Alongside every trust, there should be a letter of wishes, setting out how you’d like trustees to use the funds. Warford explains: “The letter should be in-depth guidance to the trustees. It's a letter that contains your thoughts, your preferences, your wishes in relation to the decisions that the trustees are taking in the future.”
While not legally binding, it can have huge influence.
Gogh explains: “It makes all the legalese much more personal and points your trustees in the direction of what you want to happen. When they are thinking, ‘I wonder what she would have wanted’, you can tell them by putting it in your letter.”
It can range from big life decisions like where they live to relatively small things, like ensuring your child still has access to the football club they love. You can update the letter of wishes as often as you like, as a person’s needs and circumstances change.
Having the right team in place is crucial.
If you are setting up a trust in your lifetime, you may choose to be a trustee yourself, but you will also need others in place for when you are no longer here. A balance of family or friends and legal professionals often works best for trustees. Some charities, including Mencap, offer a trust company where it acts as a trustee.
To find the right professionals, The Society of Trust and Estate Practitioners has a directory on its website. You can also request a list of specialist professionals from Mencap by calling 020 7696 6925 or emailing willsandtrusts@mencap.org.uk
While this is an area of planning that many SEND families dread, the benefits of getting the right support in place can be huge.
Raeburn from Mencap says: “I spoke to one mother who told me that planning for the future had kept her up at night for the last 20 years. Every night this is what she thought about. Until she contacted us, she hadn’t heard of trusts and didn’t know there was a solution.”
Jane* and her husband are in their late 60s and they have an adult son, Harry, whose future they are planning for.
Harry, who lives at home, has his own bank account and Jane supports him with running his own dog walking business, but she says he has limited understanding of money.
A Mencap talk about wills and trusts prompted them to make an appointment with a ‘brilliant’ solicitor who helped them set up a discretionary trust. When it was set up, the trust was dormant, but Jane’s mother has since died and left some money in it.
The trust, Jane hopes, will allow Harry’s support from the state to be protected, while also taking a future burden off his sister’s shoulders.
However, Jane is still working to understand exactly how to make the trust work effectively. She has been frustrated, for example, at finding it hard to open a bank account in the name of the trust.
“Setting it up did initially give us more peace of mind, but it’s an ongoing process of trying to understand how best to make it work, including things like tax issues.
“It’s a very hard system to navigate and we keep running aground.”
*Name has been changed
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