02.02.17

Following the launch of 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 Louise and Craig – parents of Thomas who has Fragile X syndrome.

Can you tell us a little bit about your son, Thomas, and his additional needs?

Thomas has a condition called Fragile X syndrome, which is a genetic condition that causes developmental and cognitive delay. Thomas has speech and language difficulties and as a result of this, and also being diagnosed with Autistic Spectrum Disorder, he finds social interaction difficult. Fragile X children often have low muscle tone which means Thomas gets tired very easily.

He’s now thirteen and half and was diagnosed with Autistic Spectrum Disorder at three years old and Fragile X at three and a half.

We understand a Child Trust Fund was set up for Thomas by the Government when he was born, have you continued to pay into the Child Trust Fund since then?

Yes, we did. The initial contribution from the Government was £250 as we weren’t aware of Thomas’ disabilities at that point we didn’t receive the additional amount allocated to disabled children. In 2005 we started paying in £50 a month. Then the Government paid in an extra £350 in May 2010 when Thomas was seven. This comprised the £250 that every child received and an additional £100 as Thomas was registered as disabled by then. We also increased the amount we were personally paying in to the fund each month to £100.

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

We have £5,267.35 saved for Thomas as of 29^th January 2016.

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

We receive statements and also regular letters saying we can add an extra £1200 a year, so encouraging us to put more money into the Child Trust Fund.  It is also an investment trust fund so even though we are no longer paying in the amount should continue to increase over the remaining years until Thomas is 18.

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

No, Thomas will be fourteen on his next birthday and has no concept of numbers. This is common with Fragile X children, they have a limited understanding of sequences and numbers and often have problems with maths. For example, Thomas can say his 2, 5 & 10 timetables, but doesn’t actually understand them especially if they are out of context or sequence. He currently has a reading age of a seven-and-a-half-year-old.

A complete cure of Fragile X would need to be found for Thomas to be able to properly understand and manage this money when he reached eighteen and that isn’t going to happen. To have this money within Thomas’ control would make him extremely vulnerable, he would have no idea if someone was taking 50p or £100 from him, he doesn’t know that £20 is more than £10, for example.

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

We went to a Mencap talk in Croydon about three years ago, where Philip Warford from Renaissance Legal was talking. There was an article in the Fragile X newsletter about the talk and as it was local we decided to attend. Updating our Wills was on our ‘to do’ list for this year so we contacted Philip. When we first saw Philip to help us write our Wills, we were still paying in £100 a month to the Child Trust Fund and he let us know about this issue so we decided to stop paying money into the account.

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

It’s just another hurdle to climb and another fight to fight, especially when you feel that you are fighting all the time. It’s also another negative issue surrounding what Thomas can’t do and not a positive thing he can do, of which there are many.

When you’ve done something which you thought would help your child we honestly didn’t think this would be an issue. The thought of even having to go down this line is frustrating and like many parents in a similar position we would stick our heads in the sand until we actually had to deal with it. This is one thing we could definitely do without.

Also, after speaking with other parents we know the transition time at eighteen with Thomas is going to be extremely difficult and this will come at the worst possible time.

If we had just left the initial, minimal amount of money from the Government in the account and not added to it we would probably write it off, but we can’t with the amount that is there now. This is another thing at the back of our minds that we will have to deal with at some point.

What are the main concerns you have when Thomas reaches 18, in relation to the money held in the Child Trust Fund?

Other than the issues we have mentioned with gaining access to the savings and managing those for Thomas, our other concern is how this money will affect his means tested benefits. There is money there for Thomas and it may impact on the benefits and social care he can access and how much he may have to fund himself. We don’t have an issue with providing funding to help with Thomas’ care, but if he isn’t able to access the services he needs because, he has this money, then this could have a negative impact on him.

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?

There is no information, unless you go out and find it or happen to talk to an experienced and specialist person. We would have been none the wiser if we hadn’t been to the talk and spoken with Philip. We had a little bit of an understanding about savings and benefits and the impact one can have on the other, as we have an elderly aunt who required care. Had we not had that background we wouldn’t have known anything. Even with this limited knowledge we still didn’t relate it to the Child Trust Fund and its implications for Thomas.

A lot of our friends and other families in similar situations don’t know anything about the issue either. It’s extremely worrying.

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

That decisions need to be thought through fully. Of course it was a great idea to try to encourage families to save for their children, however please think about every family’s situation and not just the ‘average’ family. Parents and carers of disabled children need something for them that doesn’t fit into ‘normal’ but allows them to help their child access the money in another way.

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