Should I even bother applying for PIP for my daughter?

[Mizzi]

I never applied for DLA because it took years to get her diagnosis and I didn't really know much about it.

But she is now 16 and diagnosed with Autism and an eating disorder. She doesn't go out with her friends. Won't eat in public. She suffered SA trauma and is having therapy for that. She's had 3 different types of therapy via the NHS.
She won't go out alone, we have to drive her everywhere. She barely eats, is seeing the eating disorder clinic. Covered in self harm scars.

She doesn't attend school anymore. She just goes in for a wellness check with the counsellor 1 hour a week.

But I keep reading about how PIP is getting culled and reduced and I don't know if i can put her through an assessment for it to be denied or removed after a few months?

Yes, you should apply.

Definitely apply. Otherwise you're making it harder for her to get in the future. It's easier having a current claim renewed than proving a new need.

Yes apply - but be prepared for the battle. My DC has ASD, ADHD and an eating disorder and was rejected initially. We appealed, and were rejected on mandatory reconsideration. We went to tribunal, but before it even got to tribunal someone from phoned and said they had reviewed the case and would be awarding PIP. So don't expect it to be easy but it's worth it to get them the support they need.

It's a shame you did not claim dla for her . You don't need a diagnosis. That's gone now though. But definitely do claim pip for her. It can take a while to go through but it will be back dated.

You have nothing to lose by applying. No one knows at the moment, what is going to happen with PIP going forward, so why let idle speculation put you off?

Ask to become her appointee when you make the initial claim. That means you will deal with the claim on her behalf and she won’t need to speak to the assessor,
you would do it for her.

I did for my daughter - late diagnosed autism and more recent anorexia. Similar sounding circumstances to you. Didn't even need a face to face assessment, they called me to ask a few more questions ie what would happen if I didn't supervise her meals (she wouldn't eat) and a month later she's been awarded.

The key IMO is to ensure your answers cover the criteria.
https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system
You're looking for what your young person can manage safely, repeatedly and without supervision more than 50% of the time.
I found it helpful to keep a diary for a week and write down all the support I gave - even down to having to give daughter her toothbrush because by the end of the day, she's exhausted and would easily skip teethbrushing without prompting.
Gather all written reports, diagnosis reports, anything from therapy. Anything that helps back up your statements. My pack was 4cm thick!
Type your answers separately rather than fill out the form. Means you can keep it and easily review if circumstances change.

Start with getting yourself registered as her appointee. When you call for the form, you'll have 4 weeks to return it although they will extend for 2 weeks if you call them.

It makes a huge difference - I'll be able to get daughter private therapy now because the CAMHS waitlists are running to years even for the ED service.

If you don't try you'll get nothing. I didn't think it was traumatic at all. It's not like going to therapy where they ask you to relive painful events. They just want to know how your condition affects your day to day life.
I found it just fine. It takes anything up to 6 months to get so you're better off applying now.
I got it straight away. I do work so I got £400 a month and a blue badge and it's made a huge difference to my life.
Also we don't know yet what cuts or changes are going to be made or whom it will affect so just do it.

Of course you should. But I would have a proper conversation about where the money goes if she gets it as it will go directly to her. I'd use it for quality private therapy and something really nice that gets her out of the house. Does she like animals? Horse therapy or riding. Something like that

I am worried about what will happen when my dc switches from DLA to pip as I don't think most autistic teenagers are up to using the money wisely for their health. I think it should go to the parents as long as they are living at home.

If your child is unable to handle own affairs then simply become their appointee and have the money into your account.

I didn't really know about it and she was diagnosed late. I didn't know you didn't have to have an official diagnosis and I've had so much going on the last few years I wouldn't have had the heads pace to do it either, I don't think. It's only now that she's finished battling with school that I can breathe and think about it.

I will be her appointee and it will go to me.
Depending on what she receives part will go towards her food (she doesn't eat what the rest of us eats and is very selective so there's a large cost on top of the family food bill for her specialist foods) Some will go to her savings (just a small amount) Then she has started taking interest in horses lately, so weird you said that, but I can't afford anything other than grooming sessions so it would pay for her to have riding therapy and then give her some independent money.

I can't pay for private therapy for the foreseeable as she is in long term therapy and you aren't allowed to see 2 separate practitioners

Have you done this yourself? Does the child have to agree to it? I know my DC won't agree to it, but also isn't actually capable of organizing it alone. 🙄I expect the money to be spent on cosplay and sweets.

Someone from PIP comes out to see both appointee and claimant to make sure there's no coercion.

Do you find the therapy to be decent quality? We've not been lucky unfortunately with CAMHs etc and had to pay privately for anything genuinely beneficial.

Yes she said she feels like it's helping.

She definitely meets the parameters for pip. It isn't given for specific medical conditions, it's awarded to meet the extra costs of meeting her needs compared to an "average" young person her age (or for dla a child). If you have to drive her as she's unable to use public transportation, including just blanket refusal for mental health reasons, if you need to supervise her eating to ensure she actually eats, close supervision for self harm it seems she's definitely ticking boxes. Read up on claiming for mental health purposes as there definitely is a difference when completely the forms, don't lie but don't underplay the situation and make sure you have people who will be willing to act as the specialist reports section, we also included DD's diagnosis letter, a copy of her discharge from hospital etc).

My dd no longer can claim because once she was out of her teens she began to cope a lot better with life, I suspect that combination of underlying autism and teenage hormones was a lot of the problem in our house.

Yes apply but make sure you get advice on how to fill out the form. A good place to start is:

www.benefitsandwork.co.uk/

You can pay a small fee to do a training course on how to fill in the form. Sounds crazy but it is well worth it.

No, the child doesn’t have to agree. DLA will send a form out close to your
child's 16th birthday asking if you would like to become the appointee. Just fill it in and return.
If for some reason they haven’t sent you that form then just ask to be the appointee when you make the initial phone call for the application form.
An officer will come out to check their is no coercion and approve you becoming appointee.

So what makes you think that PIP will help her? I mean obviously more money is always welcome, that's a given, but what can she currently not do now, that will change with PIP awarded?

She doesn't have mobility issues. She is capable of washing, dressing and feeding herself. She isn't staying indoors because she has no means or support to leave the house. PIP isn't going to pay for taxis because I'm guessing she doesn't want to get in a taxi with a stranger and go anywhere without you, anyway. And you already have a car.

She doesn't want to leave the house alone or socialise with friends. It's not that she can't for physical or practical reasons, she just doesn't want to. PIP isn't going to cure her of that. Nor will it help with her school refusal. It isn't going to make her eat more and it isn't going to encourage her to eat in public. It isn't going to stop her self harming. All the psychological/psychiatric help she needs with those issues she is currently receiving from the NHS.

You say you have to drive her everywhere but I had to drive my 3 DC everywhere too, because we didn't live where there was decent public transport. If she doesn't want to go out and socialise, and she doesn't go to school then how much driving can there be, compared to other parents of average 16 year olds? You drive her to her counselling appointments I suppose, but if she didn't need those you'd no doubt be driving to pick her up late from parties and all that normal stuff that we parents do. It's part of the job.

So what specific problems will PIP solve for her?

I have applied and am waiting for the forms to be sent out. Thanks for all the encouragement to apply. Its worth a shot

Yes, they can only say yes, or no. See what happens, and take it from there.

Oh that's good, just be prepared to go around the houses a bit as they don't award it lightly!

My cousin must have had the fastest assessment ever, he had an autistic meltdown in the waiting room and the assessor came out to call him in, took one look and didn't want to sit with him for long. It wasn't contrived it's just what he's like.

Good luck with it.

I’m glad you applied. My dd has similar issues to yours and I applied for her in December. I am her appointee and I filled out her forms. I sent in her EHCP, camhs letters, therapy letters.

my dd didn’t need a phone assessment. Everything was done as a paper assessment and she was awarded pip last week.

dd is thrilled as we’ve found camhs therapy for her self harm and eating issues very hit and miss. So she’s using her pip to access some DBT that Camhs refused. The money will also enable her to get to college and back safely. She’s very vulnerable and public transport isn’t an option for her right now.

best of luck x