Wills and Trusts for Parents of Children with Special Needs
The below article from the Guardian may be of interest to some parent carers.
‘I’d named my autistic son in my will – I didn’t realise that would only cause problems’
In this extract from her book, Rhiannon Gogh says parents often aren’t aware specialist planning is needed if you leave money to a vulnerable dependant
Rhiannon Gogh
Sat 19 Apr 2025 11.00 BST
As parents to an autistic son, my husband and I found it hard to accept his diagnosis. Developmental milestones were missed, and the difference between Tristan and others became stark. It could not be ignored, denied or explained away – our beautiful son was profoundly autistic.
Tristan was offered a place at a school for children with autism, and every Wednesday morning for a year, I was invited into the school to learn how to interact, play and communicate with our boy. It helped me understand what his future might look like. I could see that he might never talk, work, drive a car or have his own family – he could be dependent on us for the rest of his life.
Naturally, we would look after him for as long as we could – until, of course, we couldn’t. What would happen to our son when we were no longer here? That worry consumed us for years.
I stumbled upon special needs planning in 2016 when Tristan was six. A chartered financial adviser at the time, I heard the phrase “disabled person’s trusts” at a networking event, and my ears pricked up. I’d not heard the phrase before.
I know now that a disabled or vulnerable person’s trust is one of the two most common types of trust used to protect and support disabled people. Rather than being given or left to the vulnerable person themselves, money can be held in a trust, with others (the trustees) responsible for looking after it.
The other most common type is a discretionary trust, and the type of trust that a family uses will depend on their aims and circumstances.
A will and trust are the crucial foundation of any special needs plan, but documenting your wishes is an important step, too
At that time, I didn’t know there were specialist trusts that could protect my son – who is now 15 – and, honestly, I felt ashamed that it had taken a chance meeting for me to learn about them.
At the same meeting, a solicitor told a story about “a beneficiary unable to take valid receipt for an inheritance”. She was describing those who lack the mental capacity to receive their estate. If someone doesn’t have the mental capacity to receive an estate, a court-appointed deputy or attorney would have to accept it on their behalf. This threw me again – I’d not even considered whether Tristan would fall into this category and had assumed that if I named him in my will, he’d receive his inheritance, no matter what. These were terms that had not been in any financial planning manual I’d read. I wanted to know more, so I picked up copies of whatever slides, brochures and leaflets I could and left.
On the journey home, I thought about our will, finances and plans for the future.
I’d named my son in my will – I didn’t realise that would only cause him problems. I didn’t understand what would happen if he didn’t have the mental capacity to receive his inheritance. He’d undoubtedly be vulnerable with money in his hands and unable to work or provide for himself. I had so many questions. How could we provide for him safely? How could we protect him, and who would care for him? Would responsibility for him be left to my older son? Did we need to secure his means-tested care? What else had we missed?
To view the remainder of the article please use the below link.
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