Think carefully about whether you actually want to become a Deputy” – advice from a parent on applying to access a disabled child’s Child Trust Fund

Michele Creed, a mother from Sussex, kindly shares her family’s personal story and the journey she has been on to become a Deputy in order for daughter Alana to be able to benefit from her Child Trust Fund savings.

We spoke to Michele as part of the ongoing #ChildTrustFundAccess campaign, which is looking to raise awareness and help families and carers of disabled children who are not able to access their Child Trust Fund.

Can you tell us about your daughter, Alana?

Alana was born with an extremely rare chromosome condition called Trisomy 9 mosaicism, meaning she is severally mentally delayed, physically delayed and non-verbal. We were told she would either live to around 18 months or be severely bedridden, thankfully she is now 19 and an active and healthy young person. She has no understanding of the real world and needs 1-1 support, but she is very sociable, has a great sense of humour and loves going out, this could be on the train, in the car or for a walk and always involves having a cappuccino and people watching, particularly in Caffe Nero. She can communicate by using Proloquo2go on her iPad and using some Makaton.

How much money was saved in her Child Trust Fund, and what had those funds been saved for?

There was just over £7500 in her Child Trust Fund (CTF). We started adding to her CTF because we wanted to save for whatever she might need in the future. It was only as Alana got older and we set up our Wills and a Discretionary Trust with Renaissance Legal, that we began to realise that she wouldn’t need the money for a car or a house and that her benefits would provide her with everything she needed to live in a residential setting when she was an adult. The CTF would provide money for any extras for her, such as going on holiday.

When did you first realise that you would not be able to access her CTF?

A few years before Alana turned 18 through my contact with Renaissance Legal and their campaign on raising awareness about accessing a CTF if a young person has limited mental capacity. This was the first I had heard about the issue.

What was the process of applying to the Court of Protection like? What did it entail?

There are four forms to be completed which you can download from the internet (I understand they can be completed online now), including one on Assessment of Capacity which Alana’s doctor completed. We also had to send a cheque for £365.00.

How long did the whole process take from start to finish?

We submitted the application in August 2021, when Alana was 18 and in April 2022, we received notification that my husband and I had been made joint deputies for Property and Affairs, subject to paying £25 for a deputy bond of £21,000. This is a type of insurance policy that protects the person who lacks mental capacity in the unlikely event that their deputies were to misuse their funds.

What is the Deputyship scheme? What is your role? How involved is it?

It means that we are supervised by the Office of the Public Guardian (OPG), there is an initial cost of £100 (we got this back as Alana receives Universal Credit, so she is exempt until we receive the next invoice in 2026). Then there is an annual supervision fee of £320 (general supervision fee) or £35 (minimal supervision fee).

There are several emails and phone calls with the OPG to explain the process and your responsibilities as a Deputy. All accounts have to be in Alana’s name, with myself and my husband named on the account. This means I can no longer be Alana’s Appointee and continue to have her benefits paid into my account, even though I am still recognised as an Appointee by the DWP.  It is important to know that as a couple, you must apply for Jointly and Severally, other than as Joint, you will have no internet access and will have to go to the bank in person to make any transactions or withdraw money.

I now have to complete and submit a yearly report online, along with monthly statements for the year. I can start the yearly report at any point throughout the year (the reporting process starts on the date the Order was issued until a year later) and add to it as and when.  The report is not straightforward and I made several phone calls to the OPG to understand what was required. I also have to keep either paper receipts or online receipts of everything that is spent on Alana’s behalf. I decided to set up a yearly spreadsheet split into categories so that I and the OPG could clearly see what the money was being spent on, and I sent this along with the statements. I also have to put on the report any changes, i.e. such as Alana moving colleges or changing address.

How do you feel about the outcome for you and Alana?

We thought we were applying to be deputies purely to access Alana’s CTF, we did not understand the implications of doing this and that this meant everything would change. It has created a significant amount of additional administration for me. Alana now has access to her CTF, but can’t spend it herself because of her limited mental capacity.

What single piece of advice, or message, would you like to give other parents who may be considering becoming their child’s Deputy? 

Think carefully about whether you actually want to become a Deputy as it overrides being an Appointee. If your child does not need the funds immediately when they turn 18, then you might want to consider waiting in the hope the Government introduce a less bureaucratic and streamlined way for parents to access the CTF without going through the Court of Protection.

Other comments/observations

I understand that when an older person loses capacity, then the COP is there to protect that person’s finances being misused. However, an older person may have savings, a pension and property. In Alana’s case, she is 19, the only money she has is the CTF which we paid into and her benefits which I have been managing since she was 2 years old. How can these two people be treated in the same way? They are completely different scenarios, with completely different ‘risk’ factors and practicalities and I don’t understand how the Government does not see that a different solution is needed for a child who has only just turned 18.

For me, a more streamlined process would be for a form to be completed, so that the CTF could be released to the parents and then maybe yearly statements sent to the OPG, so they could see that the money was not being misused.

Further information

Online petition

The Child Trust Fund Access online petition has in excess of 6600 signatures and has continued to grow steadily throughout the campaign.  The petition is a key element of the campaign, demonstrating the number of families who are disadvantaged by the current system and who feel passionate that change is essential.

We still need to encourage all parents – not just those with a disabled child or who are directly impacted themselves – to pledge their support to the campaign as it helps apply continued pressure.

If you would like to sign the petition, you can do so here.

Keep up to date

If you would like to read further updates about the Child Trust Fund campaign, and sign up to receive updates via email, you can do so here: https://www.renaissancelegal.co.uk/blog/category/blog/child-trust-fund-access/

Leave a Reply

Please note: our response to comments will be for general information purposes only and does not constitute legal advice.

Your email address will not be published. Required fields are marked *

2 Responses to “A Child Trust Fund Access Case Study – Michele & Alana”

  1. Paula Cripps says:

    We are in the same ludicrous position with our 20yr old autistic and severely learning disabled son Jamie. He has a CTF with £3000 and a savings account with £7000, neither can be accessed due to Jamie’s lack of capacity, he is non verbal and unable to communicate or understand speech or read and write.
    I am currently Jamie’s appointee, he receives universal credit and PIP, UC is reduced to to savings. His benefits go into an account solely for Jamie, held jointly by myself and my husband, accessed online, we have a debit card that Jamie’s enablers can use to purchase food etc for Jamie when out and about.
    I was considering getting Deputyship for finances and also health and welfare, but after reading Michele’s story, now I’m not so sure.
    I totally agree with Michele, the government needs to have new regulations for those with severe learning disabilities and still cared for by parents, when they reach 18. The transition should be far more straight forward, the parents will always have their adult child’s best interests at heart, there seems to be no common sense.

    • Katherine Miller says:

      Paula, thank you so much for sharing your experience here. Rest assured we will continue to champion and work in the best interests of families all across the UK who are in the same position. We would advise you to make contact with your son’s CTF and savings provider in the first instance, as we know some providers are enabling families to access their funds (subject to certain conditions). This would be a good recommended next step. There is also some excellent reading and information over with our friends at Contact charity here.