Family Legal Guide: Wills, Trusts & LPAs

Guide to financial planning

Wills, trusts & lasting power of attorney for families of people with Down syndrome: a comprehensive guide

We understand the importance of planning for the future, especially when supporting a loved one with Down syndrome. This guide provides essential information and practical advice about Wills, Trusts, and Lasting Power of Attorney (LPA) to help families make informed decisions.

Writing a will

A Will is a legal document that lets you decide what happens to your money, property, and possessions after your death. For families of people with Down syndrome, creating a specialist Will is vital—it ensures your loved one’s inheritance is protected, doesn’t affect their means-tested benefits, and shields them from financial exploitation. Learn how to create the right type of Will and why simple Wills might not be enough.

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Using trusts for financial protection

Trusts are a powerful way to protect your child’s financial future. They hold money or assets on behalf of your loved one, ensuring their means-tested benefits and care packages aren’t affected. Discover the types of Trusts available—like Disabled Person’s Trusts and Discretionary Trusts—and learn how to set one up. This section helps you understand how to provide financial security without unintended consequences.

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Lasting powers of attorney (LPA) and deputyship

A Lasting Power of Attorney (LPA) lets a trusted person make decisions on your behalf if you lose capacity. For families of people with Down syndrome, LPAs are essential for managing financial, health, and welfare decisions. If your loved one lacks capacity, you might need to apply for a Deputyship Order. This section explains LPAs, when and how to set them up, and what to do if an LPA isn’t possible.

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Understanding the Mental Capacities Act

A common misunderstanding is that if a person has a learning disability, their family or caregivers automatically have the right to make decisions for them throughout their lives. However, this is not the case under the Mental Capacity Act. Once a child reaches the age of 18, they are considered to have full legal rights, even if they have a learning disability, therefore for someone to make decisions for another individual (even a close family member), there must be an official legal document like an LPA in place. Without this, a person does not have the automatic legal right to make decisions, even if they are close to the individual, and even then it is not a carte blanche to make all decisions.

The Mental Capacity Act (MCA) ensures that:

Capacity is presumed unless proven otherwise.
Individuals are supported to make decisions.
Decisions made on behalf of others are in their best interests and the least restrictive.
Decision-making is time- and situation-specific.

Means tested benefit allowances (Aug 24)

Once your LD child is over 18 years (16 years for ESA), their income and capital need to be below a certain limit for them to be eligible to claim any means tested benefit.

DWP benefits
You should be aware that if they have less than £6,000 of capital (eg savings), then they should be able to claim the full benefit. If they have between £6,000 and £16,000 then they would get a reduced amount.
Over £16,000 they will not receive any benefits.

Local Authority services
Be aware that if they have less than £14,250 of capital, then the Local Authority should pay the full cost. If they have between £14,250 and £23,250 then the Local Authority will pay a reduced amount and your child with Down syndrome will have to contribute. It is worth noting that they will not be entitled to financial support for social care, if they have more than £23,250 and will have to pay for all their services.