21 Yr old DD's PIP has been stopped. Desperate for advice

[ForLessThanALatte]

Hoping if I post here lots of people will see it. DD is autistic, has sensory processing disorder, history of suicide attempts and self harm. She is at uni and on her 3rd attempt at 3rd uni. She tried to overdose in her 1st year, woke up after taking pills and really surprised to be alive. She has very severe anxiety and cuts her arms when distressed. Last serious attempt at cutting was a year ago; she ended up getting stiched up in the hospital at 3 am. She never got DLA as CAMHS were useless and didn't diagnose her till very late. We immediately applied for PIP after she got her letter saying she is autistic and initially she got low rate mobility and I queried this and she then got high rate care. The letter was totally crazy - said she says she struggles to cook for herself when she shuts down but 'the telephone assessment showed mo evidence of cognitive impairment'??? Nobody said she had a cognitive impairment she has autism and anxiety and depression. Letter says she showed "adequate memory" and that she "coped well with the assessment and did not sound anxious" - she went mute for 3 days after the assessment cos it made her so distressed. It's like they haven't heard of masking. It says she is not getting any specialist mental health support - she got referred for therapy through the student union. It says she is not taking any medication. This is true but she was on prozac at 14/15, sertraline at 16/17 and quetiapine at 16 also. She hated how these made her feel, bad side effects etc. It is just awful. The letter came today and now it is the bank holiday weekend. Tried calling them today the line would just ring then cut off. She's going to be sick with worry all weekend. It's like the assessor has never heard of masking. She goes for days without eating as executive function is so poor and her mood gets so low but they say she can cut vegetables so that means.. I don't even know. Has anybody got any advice please help x

You must have answered this but I can't see it.

Why was it stopped?
A change of circumstances / a review / they think she no longer needs it???

I reported a change I had Autusm and anxiety already but then had a dyspraxia diagnosis.

For some reason they thought I no longer needed it and took my £23 a week away which was the only money I got.

I had to go to the tribunal and I got it back. But obviously you are without money all of that time and it's very stressful.

They get ESA on top. Bringing it to close to 1k.
of course there are many people who claim PIP and also work- however it is a different scenario often with younger people who have no incentive to work as they are, at the time, comfortably off.

No I don’t have ASD.

Yes- but what is extra money needed for!!!
taxis because runs late??? That’s typical of many young people!!

How did she manage to get into uni/start uni 3 times while not being able to ´do life admin´ - how significantly were you involved in applications/paperwork for these? What is she studying and is she able to keep up with the demands of her course?

I'm be interested to know.

I'd**

https://www.england.nhs.uk/learning-disabilities/care/ctr/

Its a review of autistic peoples support & treatment where there is a risk from their mental health (a suicide attempt & ongoing mental health problems would make her eligible)
It's not support in itself but it's a meeting with the local commissioner to make sure autistic people receive the support they need & don't end up in hospital. Even if it does not result in services being provided it will give you very clear documentation of unmet needs which will help with accessing support at uni and for PIP. It should also give you both a clear idea of what support would be helpful. There may be services available that you are not aware of.

You've nothing to lose by trying to get this through GP. They are quite new so they may not be aware.

DSR is dynamic support register which is a register of people with autism and/or learning disability.

They were both introduced by NHS England following the Winterbourne care home scandal. It aims to stop autistic people slipping through the cracks between services.

Ignore the ableist nonsense people are posting. You are doing the right thing trying to get support for your dd. Getting her the support she needs (including PIP) is not a gateway to a life on benefits.

This is what you need. You will need to pay a small fee to become a member but it’s totally worth it.

Download their PIP guide and guide to appeals. You also need the guide to how PIP is scored which can be downloaded from government website.

Once you have the written assessment you need to go through it point by point and show where it was wrong.

if you genuinely work with vulnerable young people you ought to know how stupid and unhelpful it is to try and dictate without knowledge of circumstances. You seem utterly incapable of even absorbing and processing the information you do have. Time to back off.

Look, you clearly have issues with what you see as the problem of benefit dependency but this is not the place to ride your political hobby horse. For gods sake go and shout at the wall if you have to but leave distressed people alone.

PIP is really important to those who also work - it can be that safety net for when they have more than the average amount of time off and it ends up being unpaid. It also allows them to work PT and manage their needs rather than making themselves sick trying to work FT and not managing.

I really sympathise - this must all be very stressful. I claim PIP for my son with complex needs and it is a stressful and difficult process. You have had mixed responses but within it all good advice. However at 21 and 3rd try at University I am guessing she is at the end if year 1. Has she settled this time? Is it working? 3rd uni in 3 years is a lot. If not she's not settled it isn't something a successful PIP application is going to fix.

Yes taxis are one way the money could be used, also if she is needing a high level of support from her mum then travel between home & uni.

If she struggles to cook & prepare food then food costs will be higher. If she struggles to organize herself & struggles with shopping then being able to buy food from the closer & smaller shop (nearly always more expensive) rather than our of town supermarket.

Ordering food etc for delivery rather than going to a shop will come at a premium.

If you think of all the essential things you spend money on & then imagine your choices were seriously limited & the cheaper options were out of your reach then you will start to understand the hidden costs every disabled person faces.

OP, you have to help your dd get DSA. Can you talk her round to agreeing?

It involves filling in DSA forms and then, for my dd, a video call assessment. The DSA assessment was a total walk in the park compared with the PIP assessment. I attended it with my dd.

The DSA assessor just asked dd what her needs were and offered everything on the menu that fit. I believe the cost of equipment, counselling sessions awarded can go up to 20,000 but that may have been a few years ago. The DSA assessor was supportive and made you feel heard, quite the opposite from the PIP assessor who is just looking to trap you into saying the words to deny the claim (i.e. because dd goes to uni, lives on her own, travels to uni on her own), she can do anything and ignore what she said/evidence on her application of her struggling.

Once my dd got DSA, I used the approval letter to support the PIP application. So DSA (easy to get) is a gateway for PIP (hard to get). Of course DSA is only one piece of evidence and not enough for PIP, but it helps to build a picture that is more compelling if your dd has to go before a tribunal. Don't give up before the tribunal. Your dd has to go through the process and get there. Expect to be refused by DWP at Mandatory Reconsideration as that is how they make you lose hope.

Go To The Tribunal. Rinse and repeat.

The tribunal judges are an independent panel and not DWP. DWP is only the other party. DWP will be embarassed by their fuckery being exposed to the tribunal and may even settle before. But you have to make it clear you are very serious and will appeal all the way. Your dd has a 70% chance of success at the tribunal because these 70% have all been screwed by the DWP.

Do not lose hope. I would really recommend you being her PIP appointee. Hopefully your dd will agree. It is a fairly easy process. The assessor comes round to see both you and dd, asks a few questions and that's it. Then as appointee you can take the burden off dd, gather the evidence and do all the paperwork, read up and write the application. As her mother, that is all you want for her, isn't it, to relieve her distress?

Aw my dd's DSA assessor was so lovely and kind. Maybe it was your mum.

I wish I could claim
People with my condition have tried and nobody has got PIP. I take more than the average time off work and it would allow me to drop from working 40hrs which helps then with fatigue too

Technically mobility and everything are fine, I can exercise, cook etc. But on a bad day I just go to bed and don't eat

Well said.

It is not what your condition is, but how it affects you that is important. Someone with your same condition could be affected totally differently to you, basically more, or less severely.

Do your bad days happen more than 50% of the time? If so, you could come within the PIP criteria if you don't cook/eat, wash, communicate or engage socially or travel without help on those days.

So they can get all this DSA money and PIP ?

The OP isn't asking about ESA. Her dd wouldn't be eligible for ESA as in full time education. Its PIP she was seeking advice about which her dd could be eligible for.

I'm offering advice as receive PIP myself (and DLA as it was then when at uni) I'm also not eligible for ESA or UC as I work.

Receiving PIP would help her complete her course & gain a qualification (as it did for me) and the more skills and qualifications (and independence skills she will learn living away from home) will leave her MORE likely to find a job & be independent.

I've been in hospital so not had a full payment since the new rates came in.
My understanding is the maximum would be about £700 on the new rate. Definitely nowhere near the 1k plus rent the poster was claiming

Because she wants to have a normal life? Because she doesn't want to stay at home forever due to her disability? Because she wants to do a course that she likes which isn't offered locally? I don't know much about PIP but I don't think that you need to be living at home with your parents in order to be eligible!!

Exactly this. Clue's in the name, Personal INDEPENDENCE Payment 😃