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 said that your DD has "no mobility or self care issues". Clearly some people with autism and mental health issuesdohave mobility and self care issues. i would have thought not eating for days would be a clue?!

Not eating for several days wouldn't, in isolation, generate enough points for even the standard rate of the daily living component @AnotherEmma. You appear to consider yourself somewhat a PIP expert so I'm surprised you don't know this.

That may be true but getting PIP isn’t the solution. It is not what it is intended for.

OP, I'm really sorry I have derailed your thread. I hope you have found the rest of it helpful. Good luck to you and your DD. Most of us get it, and of course none of us can say for sure whether she is entitled to PIP, hopefully a benefits adviser can reassure you on that score.

Yes, I do know that not eating for days does not by itself qualify you for PIP. Hence referring to it as a clue.

Yes- a clue she is depressed and should go to the GP!!

There is nothing here for anyone over 18.

Mine were discharged from community Paeds, targeted mental health services, autism therapy, hydrotherapy, occupational health, physio and the council run services to join a waiting list of at least 2.5 years for adult help.

This.

And better still, apply to be her appointee. This means that for all assessments, you can speak for your dd and she does not have to say a word.

The PIP assessors will try and catch her out and draw unfair conclusions from the things she can do. So you have to be very careful what you say about dd as they can twist your words. For example, if she is in university, the assessor says she must be able to manage her finances when in actual fact, her finances may be a mess because she is distressed and unable to focus. Also, if she can drive, according to the DWP, she can do anything. The assessors can blatantly ignore your evidence that she cannot manage.

Hence you have to go for mandatory consideration and then appeal. It is only on appeal that your dd will get a fair hearing. But she must come within the strict PIP criteria and your application must specifically address the criteria.

My dd has autism and she has PIP. I was her appointee and absorbed all the stress of the application for her. I read up loads and consulted an independent PIP adviser/charity (do not ever get advice from the DWP). My dd finally got PIP (enhanced award) when the DWP settled just ahead of the tribunal hearing. But by then, I have already got my evidence ready to go.

This is a comprehensive guide to filling in the PIP form, gathering medical evidence and challenging PIP decisions, including for autism:

https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-claims

It costs 19.95 per year but has detailed sample language throughout, including how to ask your GP for a letter. I read a lot of online guides, including CAB's. This one really worked for dd because it literally tells you how to write it.

It was also recommended on mn.

OP, I read your OP again.

Looking at the PIP criteria, you could try to go for these. Caveat I am not an expert and my info may be outdated so follow the latest guides:

She says she struggles to cook for herself when she shuts down. 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.

PIP Criteria: "Needs prompting to be able to take nutrition 4 pts". If she has shut down and cannot cook or eat and needs to be reminded, that could count.

If she does not get out of bed because she is depressed, then this could come under PIP Criteria: "Needs supervision or prompting to be able to wash or bathe 2 pts"

she went mute for 3 days after the assessment cos it made her so distressed.

PIP criteria: "Needs communication support to be able to express complex or basic verbal information - 4 or 8 pts" or "Needs social support to be able to engage with other people - 4 pts".

All these conditions must happen more than 50% of the time during the course of a week otherwise she cannot come under this criteria. Get her to keep a diary.

The more medical and other evidence you can get, the better. I got reports from my dd's teachers and her driving instructor, not just doctors. Autism is not really a physical or medical condition, but a neurological condition. I found I did not have any medical reports just observations from ourselves and others. Depression however, can be debilitating and medically managed and you can get medical reports for that.

I don’t think she will qualify for pip, I’m surprised she managed to get it in the first place. What is the money used for? If she’s a full time student why would she need PIP? How does that help her mental health/anxiety??

This. I had to go down this path for my DD after a telephone assessment (which was done by me as DD couldn't speak to them).

Thankfully, we were successful.

Will you give it a rest! She is looking for advice not your unhelpful judgements. Read and move on if you have nothing nice or helpful to say! You are saying the same thing over and over again for your own satisfaction. Bore off.

Hi OP

If your daughter does not already get it then it may be worth applying for the disabled students allowance (DSA).

This is deliberately very easy to get because the government want disabled people to get degrees and get into work.

My DD has physical disabilities and it had paid for an adjustable desk and chair for her. It also passports through to the university and she is entitled to an hour of study support a week which helps her organise her study,

Other friends with disabilities have taxis paid for (autism and agoraphobia).

If your DD doesn't get this I would recommend it. I believe it is through student finance.

Another commenter has already detailed the various extra costs that an autistic person might pay for using PIP. But the assessment is not based on what you use the money for, it is based on your needs and abilities around daily living and mobility. If you are entitled to PIP you can use the money for anything that will make your life easier.

OP your daughter is doing brilliantly in so many ways - she has the tenacity to attempt university 3x. The anxiety and self harm she experienced in late adolescence is abating. I hope this turbulence and distress is being seen by her as something in her past.
The fact that she does not eat for days would be significant for PIP I think. Even though she can chop veg, in practice (functionally) she doesn't. Would she see a GP about this? Such limited food intake I would expect has led to weight loss. Would the GP do bloods to look at nutritional status? Has she explored this issue with anyone from mental health services or the University Welfare service who could provide supporting evidence of interventions or care plans whether or not these have helped. Have you flagged it as a concern? Did she discuss this with the person from the Students Union who made the Therapy referral? I think this sort of evidence would help.

Depression is seldom likely to be the main reason an autistic person struggles with eating regularly. Executive dysfunction, differences with interoception, and sensory issues around food/ARFID are all common. Autistic people are very prone to not noticing hunger signs and forgetting to eat unless prompted. Especially when hyperfocused on an activity/special interest. I experience this as a “low support needs” autistic person. I can go all day without eating because I don’t experience hunger like most other people and I simply forget that eating is something I need to do. Needing to be prompted to take care of one’s basic needs is part of the qualifying descriptors for the daily living component of PIP.

I see already the latest benefits green paper mentality is seeping into peoples consciousness. Sickening.
OP we also had an assessor say my daughter “didn’t appear depressed” and that she didn’t need support to communicate even though I was supporting her, rephrasing questions throughout.
we did MR which wasn’t upheld then applied to tribunal. Before the point they needed to submit their evidence, DWP changed their decision. It took around six months from the original decision.
Benefits and Work is a great website and worth the subscription.
good luck

This is the scary thing. The government green paper is saying exactly that - they want to change the eligibility to only take into account actual costs. One suggestion is to actually have a catalogue of “aids” to choose from rather than cash.

PIP is awarded on the basis of points scored for the support needed for daily living care & mobility needs & that's what she needs to evidence. It's not awarded based on what you actually spend it on.

Oh FFS.

its the knowledge that people like this are in charge of assessing benefit entitlements that makes me worry so much for my own autistic child.
I have no advice to add, OP, but I am sorry you are having this stress and send my best wishes to you and your DD. It sounds like she has achieved much despite her difficulties and she deserves much credit.

PIP is NOT compensation for having a disability. It is money to help with additional costs accrued. I am genuinely struggling to grasp what is difficult to grasp about this. There are thousands of people who are neurodiverse who live happy successful lives. Stop disempowering them!!!

Ok so take a step back

Presumably she's going to be sick with worry because the money pays for things she needs due to her disability.

Even if she can appeal it will take time so you need to plan for how she gets through the intervening period.

There are some charities etc which can help fund therapies, is there anything she currently accesses privately that she will need to try to get via nhs? Get the ball rolling with GP. Some universities have money available to offer specific interventions/support for disabled students.

What things would she need for her disability?? This is nonsense.
There are lap tops etc available from universities via specific funds for those with learning needs.
Stop feeding this woman false hope that her daughter will get PIP.

I didn’t say it was. I don’t know what you’re getting out of behaving like this on this thread, where a woman in distress is looking for support. But you need to take a step back now. She has been signposted to people who can advise her. Take the hobnailed boots off.

Keep a record of what happens when she struggles as that is good evidence eg on X date dd was mute for 3 days & I had to pick her up/she had no food & hadn't eaten. I informed the uni (keep copy of emails) and the uni did X to support. Keep a record of instances where you have had to step in & provide care & what happens when you don't. Eg. I provide an hour a day prompting dd to cook, eat etc when I wasn't able to do this I had a call from the uni saying dd hadn't eaten. I provide an hour a week assisting with cleaning & laundry. When I don't do this dd has no clean clothes/is wearing inappropriate clothing.

It makes it easier for PIP assessor to award the points if it is very clear to them.

Separate to the PIP claim it doesn't sound like she is getting the support that she needs. Can you go with her to the GP & push for referral to community mental health teams. If her mental health is putting her at risk she should be under C(E)TR & DSR for the area where she is living. This will also put pressure on mental health services to offer more support.

Is she accessing everything she can through the uni? There's often support for disabled students that isn't available in the community.