“The system doesn’t make sense” – Mum of disabled child can manage daughter’s benefits but not her savings
Tammie Squire, a mother from Wolverhampton, kindly shares her family’s personal story and how she feels about the fact that she will have to apply to the Court to access her daughter Hollie’s Child Trust Fund savings.
We spoke to Tammie as part of the ongoing #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.
Tammie, can you tell us a little bit about your daughter, Hollie?
Hollie requires 24-hour care which I provide myself, along with her father and older sibling. Hollie has a number of disabilities including ataxia and epilepsy due to a rare gene mutation called STXBP1. She’s unable to walk, she needs constant support, she’s non-verbal…. and, crucially in respect of this campaign, she does not have the mental capacity to manage her own finances.
We understand a Child Trust Fund was set up for Hollie by the Government when she was born, have you continued to pay into the Child Trust Fund since then?
I opened the CTF account with Natwest with the voucher from the government, but didn’t add any funds myself initially. A further two vouchers were issued from the government due to Hollie receiving Disability Living Allowance (DLA) at the time and were added to the original voucher that was used to set up her CTF.
These savings remained where they were until 2015 when we received a letter from NatWest announcing changes to the Child Trust Fund scheme and details of a new option to for a Junior ISA. I’d already set up a Junior ISA for Hollie’s older sister, so it made sense to have both girls’ savings set up in the same way. If my memory serves me correctly, I think in total Hollie was given £650 and when I transferred the CTF to a JISA, it had gone up to £962.
Are you happy to disclose how much is in Hollie’s Junior ISA (formerly her CTF) now?
There is £7,500 in Hollie’s savings account. Before I was aware of the issues we would have accessing Hollie’s money in the future, I had closed a number of other savings accounts and moved them into the Junior ISA. Because I’m Hollie’s Appointee and manage all of her welfare benefits for her, I assumed savings would be dealt with in the same way. Looking back, I can’t believe how naïve I was.
When you started saving into Hollie’s Junior ISA, what did you envisage she might spend the money on in the future?
When Hollie was young, we had no idea what she might want or need but we knew we wanted her to have savings so that her future could be as comfortable and as fun as possible. She doesn’t need it right now, but the next significant purchase for Hollie would be a new bed and this can cost on the region of £3500 to suit her requirements. This is the sort of purchase that would make an enormous difference to her and I feel upset that we might be in a position where we can’t access money that otherwise might have paid for it.
When did you first realise that you would not be able to access Hollie’s savings when she turned 18
I visited Nationwide with my older daughter to access her own Junior ISA once she had turned 18. I asked the member of staff who was assisting us what would happen when Hollie turned 18 and after explaining that she cannot manage her own money as a result of her disabilities, was told that I would ‘need to get Power of Attorney’. As a Power of Attorney can only be set up by someone with mental capacity, this was the first red flag as to the fact that the ‘system’ might not recognise Hollie’s circumstances and that providers had no idea what to advise parents of either.
What did you do then?
I stopped paying into the account immediately. I turned to Google and did an extensive amount of research which led me to find out that at the stroke of midnight on Hollie’s 18th birthday, that her £7,500 savings will essentially be ‘locked’ unless we make an application to the Court of Protection.
How do you feel about this?
Pretty outraged. Quite simply, the Child Trust Fund and Junior ISA system doesn’t make sense when it comes to disabled children and their families.
As Hollie’s Appointee I manage her benefits every single month, I always have done and I will do so for the rest of her life. As a result of her disabilities Hollie qualifies for both the care component and higher mobility component under the PIP scheme, and so in total I manage approximately £605 a month in benefits. As she gets older she will also qualify for Universal Credit (UC). The way I see it is that the total value of the benefits I manage each year is in the region of £7,200, almost exactly the same amount as the savings in Hollie’s Junior ISA. So why can’t I manage the latter without applying to the Court when I’m dealing with this value of money every year and ensuring it is used in Hollie’s best interests?
When you have a disabled child, you have a lot of people involved in your life, from the school, to the local authority, benefit assessors, medical experts and so on and so forth. I simply cannot see that there is a risk of savings made by a family for their child’s future being abused or unlawfully spent when the family’s life is so ‘visible’, and the due diligence has been (and continues to be) done for the purposes of safeguarding young peoples’ benefits?
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?
Absolutely not, there are gaping holes in the information provided online via the government and from providers. I spoke to the Citizens Advice Bureau who were helpful, as well as my local solicitor who has agreed to look through the mountain of forms that I will need to complete. But there is definitely a double whammy of a lack of awareness and a lack of information – there must be thousands of families across the country who have no idea what they will face in the future when their child turns 18.
What would you say to other parents who are thinking that they can’t face going through the process of applying to the Court?
My personal advice would be to get informed. I understand entirely that some parents may not feel able to face jumping through these hoops (yet more hoops….). The process is scary, and can be daunting. I’m working through Hollie’s forms now, and finding the energy and time feels impossible some days. Like all government forms the documentation is long and laborious but there’s one thing I know – when you’ve got a disabled child you have to become an expert at filling out forms!
When it comes to the court application, many families are likely to want, or need, a solicitor to check the forms. However, it seems completely unfair that families may find themselves in the position of spending money on legal fees which technically eats into their child’s savings funds.
What message would you send to the Government about access to Child Trust Funds for disabled children?
The Child Trust Fund scheme was, at heart, a wonderful scheme, but the lack of foresight as to the needs of disabled children is staggering. Hollie will eventually need to go into full-time residential care, but not yet. She is a sociable young lady and loves being around people. However, her condition shows no mercy when it comes to her daily struggles. When Hollie turns 18 in a few months’ time we simply want to be able to access the money we saved (and were incentivised to save) all those years ago, and do something great with it for her and to make her life brighter.
My overwhelming emotion is one of sadness and empathy with other families in a similar position. It’s hard enough getting through every day without needing to enter into a complex, drawn-out ‘battle’ over savings – something that should have been purely positive.
For more information about the #ChildTrustFundAccess campaign and to sign the petition please click here.