02.11.17

Following the launch of the #ChildTrustFundAccess campaign, which is shining the spotlight on the issue of families and carers of children with disabilities being able to access their Child Trust Fund, we talk to Natalie Campo, mother of Anna-Maria.

Can you tell us a little bit about your daughter, Anna-Maria, and your family?

Up until the age of 3, we didn’t know anything was different about Anna-Maria. Shortly afterwards she was diagnosed with leukaemia, and went on to have 2.5 years of treatment.

When she reached 3.5 years old she was diagnosed with autism and a learning disability, which we struggled with as a family given everything we were going through with her illness. However, she is now 11 years old, has been given the all-clear from leukaemia and is thriving at a wonderful specialist school.

We understand that a Child Trust Fund was set up for Anna-Maria by the Government when she was born. Did you understand at the time how it worked and what would happen to the money in the future?

We didn’t put any money in to the fund ourselves, there may well have been information but we didn’t know enough about it and how the scheme worked. We are now grateful that we didn’t, and that only the minimum amount is in the fund as we are certain we would have difficulty accessing it.

Do you think parents know about the potential issue that may have with accessing their child’s fund in the future?

Philip Warford at Renaissance Legal was the first person who mentioned the issue of Child Trust Funds to me, and I couldn’t believe it. Because we hadn’t saved any money in Anna- Maria’s fund ourselves, we hadn’t given it a second thought. I am pretty sure that there are families out there who have paid (and continue to pay!) money into their child’s fund which they have no idea will be difficult and costly to access in the future.

What does it mean in practice for parents who may have to apply to the Court of Protection to access the money on their child’s behalf in the future?

I get so annoyed the more I find out about issues like these. When you’re expecting a child, you have no idea if they’re going to have a disability or not. Parents who find themselves in this position can be blind-sided with shock and the emotions of dealing with the situation, and making decisions about their child’s future which are at best stressful, and at worst utterly impossible.

When it comes to financial decisions and savings, this can feel like a minefield and all anyone really wants is for things to be straightforward and clear to understand. My gut feeling is that for other parents like us who only have the minimum amount in their child’s fund, that they would rather wave goodbye to the money than go through the process to access it.

Your head is full, you’re permanently exhausted, you’d give anything for one thing to be easy. If any of the families impacted by this issue are anything like me, then they can’t even face filling out a form some days!

But for people who have put money regularly into their child’s account, it must be infuriating to know that accessing it will involve more time…more money…more effort. When really, it should just be a case of is releasing the money in the most efficient way to help the child in the way it was intended.

Why are you supporting the Child Trust Fund campaign? What does it mean to you?

I wholeheartedly support the campaign. It is simply not good enough that the Government set up a scheme which puts a proportion of UK children and their families at an immediate disadvantage.

In my experience, and listening in on conversations among other parents I meet through various support organisations, it’s simply not on the radar for families. Greater awareness is needed to ensure people get the right information about accessing their child’s fund, and the options available to them in the event their child lacks capacity when they reach 18.

What message would you send to the Government about access to Child Trust Funds for children with disabilities?

What is most disappointing is that the Government set up the CTF scheme with no regard to the disabled community. It is a Government’s responsibility to consider the needs of the entire population, not assume that life is ‘perfect’ for everyone and dismiss the needs of a group of people experiencing extremely difficult challenges. As a parent of a child with disabilities, it makes me extraordinarily cross that assumptions were made about child savings.