Future planning for a child with special needs?

Seek out an expert who gets it

One family shares how they planned for their daughter’s future with the help of a specialist.

Every parent worries about what will happen to their children after they’re gone. When your child is vulnerable due to disability or special needs, that worry only gets bigger. How will an inheritance affect their funded support? Who will ensure they get access to the right financial advice? How will they cope with being in charge of their own wealth?

Maria and Steve have a 15-year-old daughter with a rare genetic condition called DDX3X syndrome. They approached Rhiannon Gogh at PlanIt Future Financial after a friend heard her deliver a talk on wills and trusts for children with special needs.

“Our daughter Alex’s condition is a rare one that affects her in many ways.

She has autistic traits around behaviour and communication; she has learning disabilities, and she has sensory processing difficulties too. She’s also got a CVI - a cerebral visual impairment - which means she can’t judge the speed or distance of cars, for example, so she wouldn’t be safe crossing a road on her own. And she has high anxiety, mostly around sounds, which creates a fight or flight reaction in her.

The result is that she is unlikely to lead an independent life. When we’re gone, she’ll need other people to administer her money for her because she’ll be vulnerable to predators and to just giving away all her money. She currently has a very limited concept of both money and time. and time.

Cutting through the legal jargon

It was a friend of ours who heard Rhiannon speak about creating wills and trusts for children with special needs at a local support group. She told us about what had been covered and, as we’d been thinking about how to plan for Alex’s future for some time, we thought that Rhiannon sounded like exactly the person we needed to guide us.

What struck us particularly was the difference between her and the solicitor we’d seen previously to write our original wills. When we came away from the meeting with the solicitor we thought, “What on earth is she talking about?” We’re educated, intelligent people but she used so much legalese and jargon and obscure terminology that we couldn’t understand her explanation about setting up trusts at all.

Rhiannon talks in a way that we can understand and explains everything so well. If we don’t understand something it’s easy to say: “Rhiannon, I know I’ve asked you this twice before, but please explain it again because I just don’t get it.”

When it came to setting up the wills and trusts, she knew the hurdles that we were likely to face, the problems we might have and the options that were open to us. She didn’t dictate to us but gave us her considered thoughts and recommendations, which was really helpful.

Continued support in changing circumstances

Having explained everything to us, Rhiannon recommended us to a specialist solicitor who drew up new wills which incorporated a discretionary trust. She also helped us protect our pensions in trust and arranged our investments, she still continues to do so and hopefully will do for a very long time!

We originally had our pensions elsewhere, but we realised that the financial advisor looking after them wasn’t really keeping us informed. Now that Rhiannon oversees our pensions, we are confident that she checks regularly to make sure they are always performing the way we need them to. Our circumstances have changed since then too. We went through a relationship break-up and needed support to help the solicitors separate our finances while still providing for Alex and not impacting what we’d set up for her. We called Rhiannon and she actually spoke to the solicitor for us to make sure it was all handled correctly.

When you’ve got a child with special needs it’s rare to find anyone who can genuinely empathise with your situation, someone who you feel is really on your side and there to help. But with Rhiannon we feel so lucky because that’s exactly who we’ve found.”

Rhiannon Gogh FPFS is a Chartered Financial Adviser, Founder and Director of PlanIt Future Financial Limited. She regularly presents to parent associations, charities, foundations and special schools.

To receive a complimentary guide covering wealth management, retirement planning or Inheritance Tax planning, please email planitfuture@sjpp.co.uk or call 01458 555078.