DLA to PIP at age 16, should I be appointee?

[mummeeee]

I've looked on the children's Heath and special needs boards, so apologies if this has been answered elsewhere but I haven't found the answer yet.

My DD is 15, turns 16 in June in the middle of sitting her GCSEs.

I've had the letter about transitioning from DLA to PIP and need to decide whether to apply to be her appointee or not.

She does not have any learning difficulties or diagnosed ASD/ADHD or similar. She 'just' has medical needs. Currently receives DLA at high rate care and low rate mobility.

Her condition is such that she has a CVC (central line, sometimes called a Hickman line) and is connected to an iv drip at home for variable numbers of hours per day/week. She is a capable young person but still requires adult supervision for the procedure and overnight/during the day whilst connected to the drip. Risk of infection is high and she did have a central line infection in December '23.
For example, she cannot go on a night away at GPs/residential school trip without me/DH going with her (or a carer we have trained). That's not just our opinion but the hospital have said this is not allowed. They have had to assure themselves the carer is suitably trained. We hope by 18 she will be able to leave home for uni if required, with some medical support such as nurse attending at times and us supporting her with the ordering of her supplies from her homecare company.

In this case, would you ask to be appointee and on what grounds?
I feel she cannot really appreciate all of the risks etc of her condition and what extra needs she has compared to a similar age teenager. eg if they asked her about her condition and how it affects her, she would minimise generally - not through any deliberate attempt to minimise, but because she deals with the day to day and we support to minimise the impact of problems/risks.

On what grounds is it reasonable to apply to be her appointee or should i be encouraging her to take responsibility for the pip application herself? The way the form is worded it makes me feel a bit like as appointee I'm 'taking' her money instead of her having it paid directly to her bank account. But she still lives at home and in reality the extra costs of having a child with a complex condition are being paid by DH and I, as she doesn't have much financial responsibility.

I talked to DD about it and she said she can't take on anything like this until after her GCSEs (she's a focussed student) and she doesn't mind me being her appointee, particularly until she's 18.

Wwyd?

You can be an appointee if the young person lacks some mental capacity or has a severe physical disability but I think the DWP have to agree.

You don't have to be her appointee to help her. You can be her appointee and she can still get her benefits paid into her bank account. The DWP has to agree that there is a need for an appointee. I think you need to think about why she needs one - if she is mentally competent and generally well, then she doesn't need an appointee.

I would be encouraging her to claim the pip herself, but obviously support her with the application process. As there are no learning difficulties and the problem is purely a medical one I would also ( after her GCSEs) be working with the hospital staff for her to be able to manage the line independently ( this is probably already your plan). Then she’ll be able to head off to university an independent young woman with lots to look forward to.

It doesn’t sound like she needs you to be her appointee, I would be encouraging her to be independent. You can still help her with the application.

I was made appointee for DS, it was very quick and easy. I just filled out the form they sent and that was that. He has ASD though and currently lacks capacity to manage these things for himself.

Also, if about you needing the money as you are the one paying out for everything then just ask her to give you money for keep. I don’t think there’s anything wrong with that.

This is all really useful. It sounds like not being an appointee is the right way to go. If they called DD for a discussion would I have chance to discuss the medical care we provide for her? Input into the assessment?

I can't help thinking this change from DLA to PIP would be more appropriate at 18, rather than 16. At 16 I still need to take her to all her frequent medical appointments (regional specialist hospital 1 hr drive away), she's still in paeds so I still have to attend appointments and order all her prescriptions etc. She can't have a credit card and couldn't have all the bills in her name. It just seems a bit bizarre.

She is actually very competent at certain aspects of her care and we have worked hard to help her as she moves towards independence, but we're still a couple of years off her being responsible for it all. Medically wise it's a bit like being on home dialysis.

You can speak for her or give input at the assessment or any calls. She just needs to be there to give permission.

Oh that's reassuring. I was thinking they'd chat to her and whilst she's absolutely lovely, if she wasn't in the right mood to talk about her condition (which she understandably doesn't like discussing with strangers) she'd just tell them minimal info and say that it's not really a problem, because we encourage her to overcome the problems that it does create.

I’ve applied to be appointee for my DD as she has ASD to cope with as well as her life limiting medical condition and she obsesses about items. She can’t have money sitting in her account as she spends it on whatever item she’s obsessing over at the time whereas in my opinion, the money should be used for travel costs and I’m hoping to get her a tutor as she’s missed so much secondary school where she’s been so unwell and in hospital a lot.

I agree with you and think it should be 18. The money sounds like it would be useful for you if you incur many travel costs?

Your DD can give permission for you to speak on her behalf to the PIP people without you being her appointee. So you can help support with the application and phone assessments etc

If she can agree for me to speak on her behalf, that would be good.

In her appointments/when we've had nursing assessments etc I encourage her to speak directly/be involved but for some aspects she just looks a bit blank and asks me to fill in. She's never experienced anything different to her life the way it is with the medical care and I find the way the questions are written they are more suited to someone with learning or behavioural needs, making them difficult to answer.

For example, in the DLA form for the questions about meals, yes, she can prepare simple meals and eat them, but her gut cannot absorb nutrition so most of her nutrition has to be given intravenously. This means the point of the question - can this person obtain nutrition without adult support, the answer is no.

Thanks all, I'm feeling reassured

If she has full mental capacity she doesn't need an appointee. You can still advise and guide her but the money should go into her own bank account. She can then pay for things she needs instead of you buying them for her. I'm the appointee for my Foster Son because he has a moderate/severe learning disability so can't tell the time, tie his shoe laces, wash his own hair, is hopeless with money and if I give him a fiver pound note to go buy a bar of chocolate he hands over money to person in shop and just walks out leaving his change behind but clutching his chocolate.

@mummeeee lots of people have someone else completely fill in forms for them and advocate for them in appointments. Appointeeship comes into play when the person isn't able to manage their own affairs.

I'm hearing your worries about losing the money because of the cost of providing care to your DD. She can still give you money for travel, etc., and she can still choose to have the money paid into your account if needed. But you can't get an appointeeship just because you think it would be better.

If you or she thinks she isn't able to manage her affairs, that's different.

FYI, she absolutely can have a debit card and pay for things she needs at this age. Kids can have debit cards from the age of 11 now.

Her points for PIP regarding nutrition will come down to whether she can manage her IV nutrition herself, or whether she needs support to manage it, more than 50% of the time. She'll get 2 points if she can manage it herself, and 6 points if she needs assistance to manage it.