As parents of children with additional needs, one of the biggest fears we carry is: what happens when I am not here to protect them? For many families, that fear comes to the surface when thinking about wills and inheritances.
I know this deeply because I am a mum myself. My son has profound autism, and like many parents, I have been kept awake at night wondering who will care for him and how he will be provided for. These worries are not abstract. They are personal, urgent and real.
One of the most common questions I hear from parents is:
“If I leave money to my disabled child in my will, will they lose their benefits?”
The short answer is yes. But the risks go even deeper than that. Let’s break this down.
The Three Problems With Leaving Money Directly
- Capacity
If your child has been assessed as lacking capacity, they may not be able to access or manage money left to them. In this situation, the Court of Protection would need to appoint a deputy to make decisions on their behalf. This can mean cost, delays, and the heavy question of who to appoint. - Vulnerability
Even if your child does have capacity, a sudden lump sum could place them at greater risk. Sadly, people with disabilities can be more vulnerable to financial abuse or exploitation. A large inheritance can sometimes cause more harm than good if not carefully structured. - Benefits
This is the concern most parents raise first, and for good reason. In the UK, means-tested benefits are affected once someone has more than £6,000 in their name. At £16,000, they usually stop altogether. Losing benefits is not just a temporary setback. Reinstating them can be complicated and stressful, especially when the parent who usually advocates for the child is no longer there.
For many disabled people, benefits are not a luxury. They are a lifeline, ensuring access to
housing, care, and essential day-to-day support.
So, What’s the Solution?
The safest and most effective option is to use a specialist trust.
- discretionary trust or a disabled person’s trust can hold and manage money on your child’s behalf.
- Trustees, people you choose and trust, will manage the funds for your child’s benefit.
- Because the money is not in your child’s own name, it will not be treated as their
savings and will not impact their benefits.
Alongside your will, it is essential to write a Letter of Wishes. This is not a legal document but acts as powerful guidance for your trustees. It sets out how you would like the money to be used, details of your child’s routines, and your hopes for their future.
📥 If you are not sure where to start, you can download my free Letter of Wishes Guide. It includes a template and practical steps you can take today.
Taking the Next Step
If this feels overwhelming, you are not alone. I have walked this journey myself, and I know how complex and emotional it can feel. The good news is that you do not have to navigate it alone.
My strongest recommendation is to speak with a solicitor who is STEP (TEP) qualified and has experience in this area. Together, you can create a new will and trust arrangement that gives you peace of mind and ensures your child’s benefits and security are protected.
👉 If you would like personalised guidance, you can book a Secure Futures Consultation with me. In just one hour we will map out your options and next steps clearly, so you leave knowing exactly what to do.
Final Thoughts
Many parents are unaware of the pitfalls of leaving money outright to a vulnerable child. By asking these questions, you are already taking a positive step forward. With the right wills, trusts, and guidance, you can protect your child’s benefits, secure their future, and gain the peace of mind that comes from knowing you have done everything possible for them.
💡 Want more SEND planning insights? Follow me on Instagram @carersacademy. I share regular tips, stories, and resources for families like ours.
