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

And very sadly, your area may be one of the better ones for children at least. My DD was diagnosed and discharged immediately, with no support other than a couple of website links. And that was despite the fact that at that point she had experienced significant trauma, taken an overdose, and been unable to attend school for nearly three years.

This is a very accurate description of the life my DD has to lead.

I was heavily involved in doing the paperwork to get her into uni. I don't think that she's gonna come away with a first class degree and she misses more than the average amount of classes.

Those those talking about DSA, yes, I will try and convince her to let me help with the application.

I don’t want to sound negative OP, but my autistic DD in her 1st year of Uni was also turned down for PIP and we have chosen not to fight it.

My DD also has ME so her mobility is quite limited- so needs an en-suite- as even having energy to get to a toilet can be a challenge to her if she has a flare-up. She can either walk or have energy to do her uni classes. The Uni have put her in accomodation that is directly across from the building where her classes are. She is also in a ground floor, en suite room that is closest to the dining hall and is on the fully catered accomodation contract so she doesn’t have to do any cooking.

There is also a shuttle bus stop literally just past the dining hall and she can ride it free all over the campus as a disabled student with limited mobility.

Anyway, we had hoped to use PIP to pay for the higher cost accomodation as the maintenance loan is nowhere near enough. Since we could not get PIP, the Uni housing office has given us her room for same cost as a regular room with no en-suite and free catering due to both her autism and poor mobility. It’s not a cash bursary but worth over £4k/yr and was thrilled to get it.

DSA used to provide more, all they are providing is a printer and cost of ink/paper.

So point of all this is try everyone who can think of to help with her costs and needs, may be her Uni can do something similar

DSA is a tick box in UCAS when you apply for student finance.

Are there any criteria for applying other than the student declaring they have difficulties? What I mean is how do they award it if someone does not have PIP in place as most access to extra money would be determined by being in receipt of a disability benefit. I assume being in receipt of PIP is not an essential criteria for claiming DSA ? Does it go just on diagnosis ? Just asking as friend's son has private ADHD diagnosis but no PIP so was wondering if it is something he could claim whilst at Uni ?

Well lucky you. In MY area, services for all types of disabilities have been cut to the bone. Services to support ND children and their carers are practically non existent.

I don't want to be negative - good on her for having ambitions and wanting to expand her life but perhaps smaller steps than full independence and a uni degree might be easier? From your posts it doesn't sound like she is coping with the demands of uni (3 different attempts at 1st year, missing classes and struggling to live independently/unable to sort out her paperwork/cook and eat regularly when alone, or deal with unexpected issues without struggling) and it doesn't sound as though you either expect her to get useful qualification or be able to use it.
I am sure you are desperately trying to help her and make up for the skills shes currently lacking - like applications/paperwork which helps to a point - but she needs to transition to doing what she can for herself/adult tasks herself and perhaps this expectation of her going and getting a degree/living independently is too much right now (and repeated struggles and failures may only compound her difficulties and stress).

Could she look at studying nearer home/perhaps part time with allowances for her situation? Moving out but not miles away eg a shared or supported accomodation situation where she can build independance/executive skills with support and you can more available for visits/backup? I dont know whats available in the UK - but a young relative of ours with serious mental health problems, anxiety and lack of self care used a similar supported adult living set up in his late teens/20s when most young adults would be expecting to move out independently. It really helped him both learn how to navigate his anxiety and stresses in the face of everyday life, while giving him a gradual degree of control, a supportive group of friends and a few successes under his belt as he became more adept at managing both his condition and his life. Hes gone on to do work experience, a degree and travel independently, buy a flat and have good relationships. Currently hes in his 30s and his life is not too different from most of his peers, though he still has his anxiety/stresses and issues with executive function, and needs to do things in his own way. The life he leads now seemed impossible when he was in the worst phase of his illness - but the gradual and supported transition to aid him in managing being an adult and dealing with his stressors was a huge part of why hes doing so well.

@Babyroobs PIP and DSA are totally different systems. DSA is based on diagnosis, you submit copies of the diagnosis to Student Finance, they decide eligibility and then conduct an assessment of need. DSA is not a cash benefit, it pays directly for the support needed, eg mentoring, equipment, software etc. It is all about the academics though, extending to transport and accommodation if applicable, but it won’t help them with eg cooking and managing finances.

As for the whole “if they can manage uni they don’t need PIP’ point of view. this is just not true If their impairments mean that they needed a parent’s help every step of the way with the application process, dealing with student finance and DSA, opening and managing their bank account, going to open days and appointments with them then that is evidence of need in understanding complex information, mixing with other people, managing money which all fall under PIP. If in addition they cannot use public transport reliably or cook adequately for themselves that is further evidence. Whether they are at university or not is completely irrelevant.

@ForLessThanALatte I wish you luck. We are in the middle of my DC’s review (I am appointee) and it is stressful. There is help out there, the Benefits and Work website already mentioned is a great resource, the CAB are good too.

Thanks for the explanation, much appreciated.

Yes they should be eligible for DSA. It's not awarded as cash. He would have an assessment & awarded assistance & aids. For ADHD that's likely to be a laptop with assistive software & a 1:1 mentor to help with planning etc. depending on the college/uni it could also be access to a separate library/study area.

I haven't read whole thread so maybe someone has explained but autism can 100% effects eating. You need Executive functioning skills which adhd and autistic people can struggle with. I'm sure I read u have children with adhd or autism, u seem to not know much about Neurodiversity! My older daughter has high needs autism and is on high rate DLA . My younger daughter is being assessed for autism and adhd and I'm not applying DLA for her as she doesn't have high needs. Autism is such a broad spectrum that some people don't even consider themselves disabled, when others are very disabled by it like my older daughter and will need one to one care probably her whole life.

There are groups that help you appeal PIP, and have extremely good success rates. One my friend used got her award changed from nothing at all to high rate care and mobility (which she needed). The group has lawyers and such like in it. Yes she had to pay 300 pounds I think, but that just covers some of their costs

Asking for benefits advice on mumsnet… you’re brave!
In all seriousness I really hope you and your daughter can get it sorted, your best bet is the previously mentioned places for advice like citizens advice ect.
I have ASD and have never claimed PIP but when I was at uni I had 1 to 1 mentoring and my mentor actually suggested I apply for it. They could refer me to a charity for autism who would help me with the application ect. My uni was really good for autism support, and I know so many aren’t, but I got that 1 to 1 through DSA I’m pretty sure. The reason I didn’t apply for PIP is I know how horrible the assessments can be and unless I absolutely had to I didn’t want to go through it. I’d say gather all the evidence you think could be relevant and then see if you can get someone who knows the system to go over it with you and prep to fight for it. All you can do right now is prepare and get your ducks in a row. Good luck! And I hope your daughter is okay!

I get pop for autism, as others have said appeal and be very detailed with letters and doctors notes.

also I know you said she didn’t want help applying for dsa but I’d definetly approach that with her again, there are all sorts of softwares and help she can get if she applies

OP’s daughter is at Uni - she will get laptop, printing, books cost through the uni DLA - as anyone with autism, dyslexia etc does. Therefore, the PIP money is not needed for this - as she will get this anyhow.

It was a general point but thanks for singling that out @TheMoment 👏

The op's dc doesn't currently get help through dsa as they haven't been able to complete the forms.

My point still stands that there are lots of costs that people might not be aware of.

I work in an area of the UK that has the highest rates of people on PIP (due to inter generational trauma). It is a disaster and as I have said before has simply held people back and kept them in a particular mindset. This is the issue with awarding it without a clear need.
It also is very unclear which of the issues identified for this girl are mental health attributed and which are ASD. If the former I absolutely stand by my point that addressing these is the starting point.

I think as others have said focus on the here and now not the past. I see the relevance of the past stuff as it explains why she struggles. Medication may have made a difference but she cannot tolerate it so is hampered by this.
Keep a diary of the support she needs each day from you or others as this will give more information to the assessor.

My son has just had a second PIP application sent in, most of it is no change as he has learning disabilities so I am not expecting his to change.

it is harder when they are trying to achieve stuff to move ahead in life, it can look like they are coping when they may only be doing so with a great deal of support.

You've been given a hard time on here but a lot of your points are very valid.

@Notamum12345577 will you be able to find out the name of this group?

how exactly is getting PIP going to help with the not eating for days issue?? That is mental health and should be addressed by the mental health services.

I haven't read whole thread so maybe someone has explained but autism can 100% effects eating. You need Executive functioning skills which adhd and autistic people can struggle with.

I think people absolutely see that this person needs help but its hard to see how money even solves the issue.

If its that the person needs a parent etc to order food, the money that they already have for food can be used for this.

As anyone who gets pip and tries to hire carers can tell you, what many people need is time - another person to help do things, and money doesn't buy this- you can't get people as PAs for love nor money!

Great explanation by @EasilyDeterred of the difference between DSA and PIP.

Thank you.
I honestly have sympathy for the OPs daughter and hope she gets the correct help she needs. Not money as a sticking plaster.

Parents' time is not free. It costs money to the parent to take the time out to help. It is the opportunity cost of the time the parent could otherwise spend earning money. If the money is not enough to hire a PA, that is a function of the PIP award not being enough, not that money cannot solve the problem. This is not even taking into account all the additional costs which @checkedshirts listed below. You are just focusing on one symptom when autism presents with many issues.

In any case, once dd gets PIP, OP can get a carer's allowance if they spend 35 hours or more a week caring for dd, including helping with washing and cooking, taking dd to a doctor’s appointment and helping with household tasks, like managing bills and shopping.