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

Lots of posts urging OP to spend money. Please be wary OP or anyone else reading.

Also there have been some comments implying it is easier to get PIP for physical disabilities. This is not true. If you have no cognitive or mental health issues at all, you have to be very physically disabled to get PIP.

DWP here - just retired after 40 years... PIP is massively frustrating from an assessor's point of view because they don't know the applicant and can only go on the information given in the paper against the individual set of behaviours asked.

Just to be absolutely clear. A diagnosis of any kind is not an automatic qualification unless a DS1500 (terminal illness with less than 12 month life expectancy has been signed by a consultant).. everything else is against the descriptor's.

Autism is such a wide spectrum that can mean a person could be managing life with everything from non verbal , to savant.. with every ability in between. Including co morbidities such as no mobility and cognitive impairment.

You need to go through the steps already mentioned and ask for a reconsideration. Provide additional evidence for everyone you can.

For example. Can she prepare a meal. ? This doesn't mean can she cook from scratch , it means can she put a meal in the microwave and eat. ? Physically can she get the lid off ? Mentally can she set a timer and eat the food cooked. ?

Can she communicate with her studies ? Does she understand when assignments are due and complete them ? What additional help I'd required to do this. Provide evidence of student support .. without which she would not manage Uni ?

Can she get to lectures in specific buildings without a helper .. if she can then no points , if she has a helper then provide that info .

Does she socialise ? If she can then no points but if she uses a specialist assistant to facilitate this then provide the evidence.

And so on. For each question.

Autism is not an automatic qualification. I have ADHD and would not qualify as would only amass 6 points for managing finances.. (older kids do this for me and set me a budget and deal with post)

To be brutally honest based on the CURRENT info she would not qualify. All I know is from what you have written which is not unlike an assessors remit and I see a girl who looks after herself away from home, feeds herself, lives without immediate care (although I have no doubt you do a lot remotely so THIS needs to be added) . go to the loo alone, gets to lectures, doesn't currently miss medication (not sure about this but if she does it needs mentioning ) and basically lives her life.

Am very happy to advise via DM if that assists . I will be honest with you.

What I don't understand is why she had it awarded before and now its been taken away. Her needs / behaviours haven't changed and she isn't more able to do anything since she was last assessed.

Also during the reassessment, is she eligible for anything at all? She was briefly on UC and was LCWRA I think it's called. Her GP said she can't work and didn't have to attend appointments in her journel.

Not entitled to anything if a full time student beyond what the university can offer. Also obviously can get a loan.

Purely from observation, it seems easier to get PIP for children than adults, especially if those adults are not living with their parents.

Children don’t get PIP, it starts at 16, and is then reviewed a few years later. Obviously many people do a bit of growing up and becoming more capable from 16 upwards so there may be some changes simply due to that. Equally the gap between the claimant and their peers can become more noticeable as they get older, any 16 year old might not cope with household bills etc but once they get into their 20s they normally can unless they have disabilities which impair them.

16 is a child.

Was she still living at home when first awarded?

If she's now living independently then the assessor will use that to say she has improved.

She was 19 I think when she got it. Or nearly 19. She had never claimed any benefit before then (not sure if that is relevant or not). She got it after the first time she dropped out of uni and tried to kill herself. So yes, she was back home at that time, recuperating.

Yes I think they do

initially she got low rate mobility and I queried this and she then got high rate care.

I'm genuinely surprised that she ever got high rate care. That's usually for severely learning disabled or physically disabled people who need toileting support, feeding, and all kinds of different physical care. Your daughter is living independently (though with difficulty) at university.

I think you might have to come to terms with that earlier decision being the erroneous one, rather than the note recent one.

That makes sense. She was recuperating after a serious suicide attempt. She was presumably in a worse state at that point.

Dont know if anyone answered you yet, just now back and catching up.

PIP is for daily living, DSA is based on supporting education while at Uni. You tick the box on UCAS and then whichever Uni you go to, their SEN people initiate contact. We got letters from my DDs consultants- autism and ME- outlining what support she needs for Uni. The letters cover diagnoses, impact and ALL support they think your DC will need, not just what DSA funds but things the Uni can do too. For autism this even included for my DD blanket exemption from group projects where the group gets one grade they all share- she is to be given a chunk of work and only graded on her work within a group project. Her class schedule is set up too so she can have a long break between morning and afternoon classes so she can get away from “people” and nap in her room as socialising all day causes a meltdown. So your consultant should know based on knowing your DC what they need, the Uni also usually gets a packet of info from the sixth form as to what accommodations they had there too and that informs them and DSA as well.

Early in the school year, your DC meets with a DSA team or rep and they go through specific things that your DC needs to support their education for Uni. DSA only funds certain things- printers, voice software, scribes. They used to fund extra accomodation needs like my DD has, but not anymore, they sent her on to Uni housing office who then did a credit against her account.

Yes, he could claim DSA for his ADHD…at the very least it may mean ability to ask for extensions to deadlines for essays and coursework.

The only money we have seen from DSA is reimbursement for printer, paper and ink. My DD has a friend which dyslexia and she chose printer credit on school printer service instead of a physical one in her room, but then she is physically abled.

My DD did not get a laptop as that is considered to be a standard cost ALL students bear today. DSA would only cover specialised software or adaptations if linked to your disability- ie touch pen, voice activated writing, digital recorder built in, screen magnifier etc.

She was talking about how her disabled DD who is a full time student cannot also work on top of being a full time student. Not having to work AND be a full time student DOES help many disabled students complete their degrees. Many do go on to be full time workers. It’s hard enough for a fully abled person to do full time Uni AND work on top, bit silly of you to think that they don’t have an advantage over a disabled student. Almost like you think disabilities don’t limit or affect the number of hours or energy a person has available to them.

@Doyouhonestlyexpectmetobelieve
No wonder DWP has been losing 75% of appeals with assessors like you.

Some of your examples are just plain wrong, the can you prepare a meal doesn’t mean put a ready meal in the microwave.

The can she get to lectures in a building, if so no points isn’t correct either. She can get points if she can only go to a lecture in a familiar place, somewhere she has been before. The need a special helper for all journeys is for maximum points,

Social interaction- she doesn’t have to have a specialist helper for this either. Social support can include a friend or roommate, and that scores points,

Dsa does cover a laptop if you don’t have one or it isn’t compatible with the software that’s going to be provided, a laptop was including in mine so I could run the software.

How long ago was this? We were told like you she would get one, but she didn’t and DSA said they’re not doing them anymore because all students need them these days. Could be a postcode lottery for all I know.

last summer

Hmm. This was last autumn. (Oct 2023).
Sounding like a lottery to me

This is a really good point. DD gets a lot of emotional support from her friends at uni (who she knew at school, before anyone says anything) e.g. if she has a panic attack or meltdown they will support her. She did make the assessor aware of this.

You're right of course. Some people think that disabled people shouldn't be students though. As it's a "waste of taxpayers money" or whatever. Fwiw DD would dearly like to work and not being able to is a source of great shame to her because she sees her friends working. But she just can't do it. She just does not have the energy/ "spoons"

I sympathise but don't want to give you too much hope - my dd lost her pip at 21 (she had a 5 year award from 16-21. It was not reinstated on appeal because the points system really isn't fit for purpose when it comes to autism. My dd had been hospitalised twice that year but it wasn't deemed relevant because emergency mental health team had signed her off and handed back to the gp who was struggling to get her taken on by adult mental health. To be honest it simply wasn't worth continuing to fight