Need deputyship for our daughter…any tips please??

[BittenBunny]

hi all I’m new here. I have a wonderful 19 year old daughter with Lennox Gastaut Syndrome, complex epilepsy, development delay and autism. She is mostly non verbal.

We have just discovered we will need to get a deputyship to gain any control of her money and health as she lacks capacity.

I would be most grateful if anyone has any information or contacts to special solicitors etc or any recommendations. It seems very complicated and I’m not good with these things!

We have spoken to 3 solicitors who say it’s easy to get deputyship for wealth but we are unlikely to get it for her health and well-being?! This makes me very worried for her future.

Is there anyone out there who has successfully managed to get deputyship for their child’s health? How did you do it?

thanks

[Jofisher]

Hi the solicitors are wrong I was told exactly the same thing it’s not true. My son has the same condition as your daughter you can go on the gov.uk and complete the deputyship forms yourself for both it will be a hell of a lot cheaper than paying a solicitor. If you struggle with forms get someone to help you but believe me you know your daughter better than anyone else and your her only constant and the family you know her you know all her medical history and if you work on her best interests at all times you really can’t go wrong in my opinion you just need to prove you do and that’s not hard because I know Mums who have both especially those like our children so believe in yourself you can do this. But if you really don’t feel can maybe a family member could help or a consultant social worker and she will be a lot cheaper than a solicitor I can assure you. Good luck I have a contact for one if it would help otherwise check one out for yourself first if you don’t feel you can do the forms.

[BittenBunny in reply to Jofisher]

Hi Jo thanks for taking the time to reply, it’s very encouraging to know that others have been successful in applying for both. We will check out the gov.uk site, I abandoned the idea of doing it online after the solicitors advised we would probably not get it for health.

P.s. I think you are the first person that I’ve spoken to in these 19 years who’s child has the same condition as ours. All the best to you and your son 🙂

[Marzano in reply to BittenBunny]

Hi, my daughter also has Lennox Gastaut Syndrome but has fluctuating capacity. Several years ago she was able to give us Power of Attorney for Finance as well as Health & Welfare. Although you are going down the Deputyship route I can assure you that it is worth it. I agree with Jo's previous comment that you are the best person to do this because you will always be looking at your daughter's best interests. I would also enquire whether your local Citizen's Advice or Local Council can help. Sometimes they have contact with people who can help or just advise you during the process. For our daughter's Power of Attorney I looked at the process online, printed off bits I didn't understand & rang people for advice. Be confident. You have cared for your daughter with LGS for 19 years. You can do this. Very best wishes.

[BittenBunny in reply to Marzano]

Thanks so much for the encouragement. 19 years is a long time, I really don’t know where the time went I still remember her as a cute cuddly little 3 year old. I’m so glad for you that your daughter was able to give you power of attorney, although seeing her ability phase in and out to such an extent must be hard as a parent. Our daughters abilities do seem to fluctuate but she’s never been able to understand or communicate enough to give any kinds of verbal or written permissions. All the best to you x

[Jofisher in reply to BittenBunny]

Thank you any questions come back to me and if you ever want to discuss anything regarding the epilepsy side of things etc happy to chat to you anytime

[SpeedyH]

Hi there. I think the solicitor has given you good advice. Being a deputy with the Court of Protection is an important role; there are annual reports you have to produce, you have to keep accounts and you get visits from the Court Visitor to ensure you are complying with the Standards that apply to Deputyship.

Most people do not have deputyship for their adult children who lack capacity and in theory it shouldn't be necessary. It depends on your personal circumstances, for example if your daughter lives at home and you are happy with the support you get and there are unlikely to be any contentious medical decisions to be made, then h and w deputyship isn't really necessary. Likewise, if her only finances are benefits then you can just carry on being her appointee with the benefits people. If you need to do anything likely to be problematic because of her lack of capacity, for example sign some types of tenancy agreements or manage savings that are in an account in her name, then you probably will need finance deputyship. Her benefits and Direct payments if she gets them can be paid into a separate account in your name. Most people who have deputyship only have Finance as your solicitor said because in theory, decisions taken about your daughter's health and wellbeing have to involve a variety of people and be in her 'best interests'.

You can apply for deputyship yourself but you have to be very well organised! There are about 92 pages of forms that have to be completed and sent to a variety of different people within defined timescales.

Someone like Citizen's advice should be able to help you work out whether your specific circumstances mean that having Finance /H and W deputyship is a good idea.

[BittenBunny in reply to SpeedyH]

Hi thanks for your extensive reply SpeedyH.

Your advice/experience definitely makes the process seem daunting and unlikely to succeed. This has also given us much to think about.

She has had a child trust fund which we have paid into since she was born, we are just starting to look into how she can access the money now she is 18, i assume being her appointee will not be sufficient but we will find out.

Also she has daily seizures, sometimes they don’t stop and we have to administer rescue medication. This usually involves ambulance crew coming in to assess her breathing (which there has never been any problem with over many years). But the last time paramedics came in they said they would have to take her in even though seizures had stopped and she was stable. This can be a stressful process for her. The paramedic said if we had power of attorney for health then they wouldn’t be able to take her without our permission…which leads me here trying to find out how/if I can stop this happening to her.

[SpeedyH]

You are absolutely correct about the issue with the Child Trust fund, you will not be able to access it if your child does not have capacity. I have heard of some fund providers (don't know which ones) who are satisfied if a young person can say 'yes' to the question 'do you want your money' and have counted this as consent and released the funds but many won't. There is a huge campaign movement at the moment to change the law on the trust funds, have a look on twitter or Facebook or Google it. The government have recently changed the deputyship application if you just want trust fund money to allegedly make it easier/quicker but from what I have read it is still very hard to apply. My personal opinion is that if you are going through the pain of an application you might as well apply for full financial deputyship.

The seizure/paramedic issue is quite important and you would have to ask a solicitor about this. There is still the issue of 'best interests' and if a medical professional says it is in her best interest to take her in, I'm not sure if a deputyship would override that, I dont know enough about it. However, as your daughter has that level of medical complexity, it might be wise to apply for h and w as well. Such a worry on top of all else we have to do! 💐