Rhiannon Gogh is an award-winning SEND Chartered Financial Planner, author, and mother to an autistic son. In this article, she shares her personal and professional insights into how families can plan financially for the long-term care and protection of SEND children. Drawing from years of experience, she offers practical guidance to help parents feel informed, empowered, and prepared.
For parents of a child with disabilities, it can be hard to think beyond Friday, let alone far into the future. However, the question “what will happen to my child when I’m no longer here?” weighs heavily and, for some, is too hard to think about.
My son with autism was six years old when I first started researching special needs planning. He’s now 15, and after learning how to put a plan in place for my son, I’ve helped thousands of families do the same.
Family members often come to my seminars scared for the future, feeling defeated and disenfranchised, faced with what feels like an impossible scenario. Many simply don’t because it is so difficult to think about and plan for. But failing to do anything can result in the most significant harm.
Parents are often unaware of the blind spots, traps, and pitfalls when planning for a child with additional needs. Some approach me for help, having succumbed to a planning disaster, meaning they lose essential means-tested care, benefits or support and with strangers in control of their money. Once it’s happened, it’s almost impossible to rectify the damage. By then, it’s too late.
Empowering families through trusts: a safety net for SEND children
So what’s the solution? It’s empowerment. In my experience, it isn’t that parents don’t want to plan for the future; they don’t know how. They seem locked out of the knowledge they need. Parents don’t know who they can trust for credible information, where to start and how to feel out of their comfort zone. It’s a tragedy because there are planning tools and strategies that work beautifully for the families of those with special needs, but they don’t know they exist.
There are three hard truths, and not all apply to every family, but one common concern I hear time and time again is around vulnerability.
It resonates with me, too. My son cannot talk, can’t understand what others are saying, and is quite happily operating within his own little world, but finds ‘our world’ very hard to interpret.
Let’s face it, the financial profession is heavy with jargon, regulation and process – I find it challenging, but my son wouldn’t be able to open his own savings account or pension. He’s reliant on others, and he would be incredibly vulnerable.
If I died on a Monday and my son inherited on a Tuesday, would he understand that the new friends who approached him on the Wednesday might not have his best interests at heart? In my opinion, no.
What’s this got to do with financial planning?
Parents can use trusts, quite often set up in their will, to protect their young people. The protection provided by trusts is frequently misunderstood. By leaving money to a trust, rather than to my son directly, I make others, whom I know and trust, responsible for it.
In my case, my mother-in-law and good friend are my two trustees, or gatekeepers. My son would have access to the money I leave behind in trust, without worrying about managing it himself. If anyone else wants to access the funds in the trust, they’d have to approach my mother-in-law and friend, which would be an interesting conversation to witness!
My trustees look after the trust fund and stop others from accessing what I have left for my son. Trustees are chosen because they are someone we implicitly trust, so I feel confident that my trustees will act in my son’s best interests. I know that no one would be able to steal from my son or take financial advantage of him, while the trustees are there to guard the fund. The trust I set up for my son is set within my will. It comes into being only when I die.
Bridging the Financial knowledge gap: giving parents the confidence to plan well
To set this arrangement up, a parent must visit a solicitor, which can be another hurdle.
Not only do parents not know how to protect their children using trusts, but they also don’t know the choice of trusts available to them and find themselves at a disadvantage when meeting professionals.
For this reason, when I advise parents, I list questions to ask solicitors to ensure the recommendations given are fit for purpose.
When I first arranged a will and trust for my son, I didn’t know what options I had, didn’t want to ask too many questions (out of embarrassment) and therefore received what I feel is the wrong recommendation.
If that happened to me as a Chartered Financial Adviser, imagine how a parent who isn’t qualified and experienced in such matters might fare.
Trusts are not only for the wealthy. They are an often-misunderstood tool that can provide protection and financial security for those with special needs. There are even specialist trusts offering favourable tax treatment called ‘vulnerable’ or ‘disabled’ persons’ trusts.
I see a change within our profession and amongst the parents I meet. The appetite for this knowledge is growing among financial advisers and parents.
Financial advisers want to know how they can help and better advise the families of those with disabilities; parents want to level up their knowledge and command the conversation, rather than being in reactive mode.
It’s a dream to think that, with my advice, parents will now know how to secure the financial future of their young people. Money isn’t everything, but with money comes choice, security and the ability to express preference. Empowering parents to be able to leave such a legacy is a privilege.
To find out more about Rhiannon Gogh’s work and get advice on how to financially support your disabled child, follow Rhiannon on Instagram and LinkedIn.