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What if it’s too late? An interview with a family whose child with a life limiting condition has money held in a Child Trust Fund

25.08.20

Following the recent media interest in the #ChildTrustFundAccess campaign, which is shining the spotlight on the issue of families and carers with disabled children being able to access their Child Trust Fund, we interview Andrew and Jenny – parents of Mikey who turns eighteen shortly.

Can you tell us a little bit about your son Mikey?

Our son Mikey is 18 years old in September. Mikey was diagnosed with a rare genetic condition back in 2011 and sadly it is degenerative. Since the age of four Mikey has slowly lost more and more of his ability. He is now profoundly disabled and requires 24/7 support. He retains some cognitive ability but is no longer able to speak, walk or use fine motor skills. He is able to engage in basic communication using eye-gaze technology and head nods. Mikey is now a full-time resident at a care facility in East Sussex. In spite of his condition he enjoys a good quality of life and is able to engage in a range of activities which he enjoys. He likes cycling on his adapted bike and enjoys shopping trips.

We understand that a Child Trust Fund was set up for children by the Government which Mikey was able to participate in. Did you understand at the time how it worked and what would happen to the money in the future?

When we activated the Child Trust Fund investment, Mikey was a healthy child who we believed was simply experiencing some delayed development issues. The government offered incentives to invest in a Child Trust Fund, so it seemed like the right thing to do. Obviously, we had no idea that we would find ourselves in the position where he would be unable to access the savings in his account. We now want to use the money in the Child Trust Fund to purchase him a new bicycle but because of his disability we cannot access the funds without applying to the Court of Protection, which will take many months. Our time with Mikey is precious and we should not be having to spend time on this type of legal activity just to access money that we invested in our son’s future

Are you happy to disclose how much is in Mikey’s Child Trust Fund now?

We have a modest amount of money in the fund, but it is enough to buy him a new adapted bike, which he really wants. However, when Mikey turns 18 his savings will lay dormant. There won’t even be the ability for us to protect the funds in this ever-changing financial market or change the investment profile to a more beneficial account. 

What communications, if any, have you had from the Child Trust Fund company?

We’ve had all the paperwork, addressed to Mikey congratulating him on turning 18 imminently and letting him know that he can now access the money. We have contacted the provider and explained our situation. They are sympathetic but really do not understand the access issue, or its impact on families with disabled young people. There seems to be very little awareness in the financial services world about this situation, which means most firms are going to struggle to provide the correct advice and information to parents like us.

Currently do you feel that Mikey will have the mental capacity when he reaches 18 to sign and manage the money held in his Child Trust Fund?

As things currently stand, Mikey will not be able to access these funds as he is unable to communicate effectively and is entirely reliant on us to support him with financial decisions. We are trusted with important decision making around all other aspects of his life, including health and well-being. It seems ridiculous to us that in order to access a small amount of savings to buy Mikey a new bike we have to face the cost and delay of applying to a court. He has a life-limiting condition which is neuro-degenerative. The sooner we can access the funds the greater the benefit Mikey will get from his money.

When did you first become aware that there might be an issue with Mikey accessing the money held in his Child Trust Fund when he reaches 18?

When Mikey turned 16, we received a letter stating he could take control of the account and we called the Child Trust Fund provider and explained the situation. At the time they advised that Mikey wouldn’t be able to take control of the account unless he was able to sign the legal paperwork. This would have been impossible for Mikey to do. Since then we have been hoping that common sense would lead to a resolution of this issue.

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

 No, we don’t think other parents realise the implications. This is not surprising when there is such little advice and information available to them, even from the firms that look after their savings. Plus, caring for a severely disabled child is a full-time responsibility and there is already a lot of administration associated with managing their affairs, which can put a huge strain on families. We feel so frustrated about the situation we are in. We invested money for our child’s future with good intentions and we could not have imagined that Mikey would face the challenge of being disabled. He loves cycling and currently has an adapted bike which he is growing out of. The money held in his Child Trust Fund could pay for his new bike, helping him to continue enjoying the experience of cycling for as long as he is able to.

Do you feel that there is information available for families to help them understand how Child Trust Funds work for disabled children? Do you think people know where to go to find help and guidance?

 No, if it hadn’t been for Philip Warford at Renaissance Legal we would be in a complete quandary right now. Our provider is really not geared up to help people in our situation and although they offer well-meaning ideas over the phone, like obtaining a Power of Attorney, this just highlights that they really do not understand the circumstances. What would parents do without Renaissance Legal!

How do you feel about the fact that you may have to apply to the Court of Protection to access the money on Mikey’s behalf and that this might be a long and costly process?

The situation is that unless we pay for a court to decide on who could manage the funds then they cannot be removed for Mikey’s benefit. The cost of this legal action would represent the value of a large chunk of Mikey’s money and completely defeat the original purpose of saving for our child’s future. It is a nonsense that we are prohibited from supporting our son with investments we made, which were designed to benefit his future. This is compounded by the fact that sadly Mikey’s future will be shortened by his rare condition. The longer the funds remain locked away the less they will benefit Mikey.

There are so many other things to worry about with a disabled child that it is disheartening to have to face a long delay in accessing the funds. Time is critical and by the time we are able to utilise the funds, Mikey might not be able to do all the things he can do now. We really should be enjoying our time with him not having to fight to access his money.

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

When you have a disabled child, you become very familiar with having to fight for what should ordinarily be sensible outcomes. The Child Trust Fund issue could be easily solved by the government and if it takes a campaign to achieve this resolution then we want to be involved. This is not just about Mikey but also the many other families in a similar situation to ours. The impact of this situation will be especially hard on any families that are already struggling financially. Why should children be deprived of the benefit of their Child Trust Fund, when parents have done the right thing in saving for their child’s future.

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

This situation really does need to change. We invested into the Child Trust Fund for Mikey in good faith, but circumstances have meant that things have turned out very differently for us as a family. It is clear that no consideration has been given to the difficulties facing families with severely disabled children. Enduring the cost, effort and delay of applying to a court just to access a child’s savings account is a sledgehammer to crack a nut. Common sense should now prevail and the mechanism should urgently be changed in order to allow parents to easily access Child Trust Fund savings on behalf of their disabled child.

For more information about the #ChildTrustFundAccess campaign and to sign the petition please click here.

 

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