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

I used to work for Citizens Advice. The daughter would not be able to make a new claim for ESA while at university.

Listen- I am not a witch. I have worked with vulnerable young people for years and getting signed on to PIP is not the answer. It traps them in the benefit cycle as they have maybe 1k a month and their housing paid. Which is grand at 21, but isn’t when older. They then become more socially excluded and mental health deteriorates further.
rather than looking for a quick fix the girl should be being supported to get the mental health support needed to sustain university and get a proper job to support herself in the long term. Not this.

You just have to do Mandatory Reconsideration (which is usually the same outcome) and then appeal at tribunal.
I'm similar to your daughter, and when switched from DLA to PIP got 2 points. Tribunal awarded me enhanced care before I'd even got into the room and just asked me questions to determine the mobility rate.
CAB wrote a letter explaining the discrepancies between the report and their own points allocation, and added other things.
It is extremely distressing and you go for months without the money, and there's nothing you can do but wait. Because the system does this all the time to people.
Please tell your daughter it is not personal. That, as she is still the same autistic person with the same issues, her entitlement has not changed. And, unfair and distressing as it is, she is not alone. She can survive this and she deserves to.

Yes she's struggling but is managing to cope with uni. She doesn't meet the criteria for pip, I've known people with many more needs being declined including Parkinson's patients and people who are under secondary mental health services.

PIP is to support help that OPs daughter may need, EVEN IF SHE IS NOT GETTING THAT SUPPORT, so all those saying ' well she is at uni so must be doing those things' - is she doing those things or is she failing to do so, compared to the average Uni student. Id suggest not if she has attempted suicide whilst trying to cope with being independant. Yes she can cut vegetables - but DOES she? being able to do something as a one off and being able to repeatedly and regularly do something so as to sustain yourself is a whole different ball game.

Is she getting DSA - they must have done an assesment about support she needs whilst at university, and has she recieved any of that support - this will give a current analysis of the help that she needs - my daughter was awarded 2 sessions of 1-2-1 support per week plus alot of software but she is still struggling to do the written work, even though if you met her you would think she was the brightest spark - although you dont actually see her when she isnt able to perform the brightest spark routine.

With an ongoing condition like ASD if they down grade you, they need to demonstrate how she has 'recovered' since the previous assessment - there is a bit of law from a tribunal decision that can be quoted. I suggest joining the FB ESA / PIP/ DLA support group and asking there, as people who have alot of knowledge about the legalities

Thanks for all the replies. A few have been deleted which is nice as I assume we're horrible. She is at uni but honestly I don't think that she will ever be able to work as her executive function is dreadful.
In terms of expenditure she does get a lot of taxis as she runs late for the bus. Or she cannot board it if it's really busy because she gets overwhelmed. When she has been on a bus that's busy she has had a meltdown when she gets home. Then she can't function for days as the meltdown is exhausting. She implodes rather than explodes. @Mydoghealsmyheart the entire benefit has been stopped!! Mobility and care.
For those asking about free services she has been on waiting list for local group but wait is about 3 years.
There is an ND group at uni but it's not great.

When she isn't eating, this will be for 4 or 5 days at a time, she got sent home from class because she fainted. She just can't cook for herself when she is like this - I end up ordering food for her address once I have found out.
I am very worried that she went to uni away from home but this was her decision and I can't change her mind on this.

Also she cannot manage her finances at all. I'm not giving examples because I am already worried about this being outing but essentially she has asked me to manage them for her. Although I am not her appointee although I will ask if she will let me be.

Same for paperwork. I open all her mail (at her request, as she finds it stressful), do virtually all her life admin. Which is difficult as she is not living near me!

For the poster who keeps going on about MH support - she has sought this and is seeing a therapist through the university/ student union. This has taken ages as there is a waiting list.

She described good days and bad days to the assessor but they have completely twisted her words - it is like reading about a completely different person.

The worst was that it said she was articulate on the phone and sounded fine (paraphrasing) when she was absolutely hysterical beforehand then went into shutdown for several days after

I repeat, you don't understand PIP, but you think you do, which makes your "advice" very dangerous.

If someone is eligible for PIP, they can claim it whether they are working or not. There are some people who claim PIP and in addition they are not able to work, so they claim means-tested benefits (usually Universal Credit, but some people can be on ESA and HB instead). However, it is perfectly possible to be in paid work and to claim PIP as well. It is to help with the additional costs of having a disability, yes, but that's not how you qualify for it. And your rhetoric about a PIP claim leading to benefit dependency is misguided at best, offensive at worst.

The point about any disability is that it is perfectly possible to manage some things and not others.

This is a completely obvious point and I should be surprised that it has to be made, but sadly I'm not surprised any more. There is so much ignorance about disability and benefits on mumsnet, especially lately

Interesting that you asked me this question and I answered but you were not willing to answer the question in return.

????

That's completely incorrect information. I'm on enhanced care & enhanced mobility PIP & it's under £700 a month. That's the maximum amount! . I work & do not get any other benefits. No one pays my rent for me.

Are you confusing PIP with UC/ESA

Highest rates for both components are well over £700 with new rates. That is every four weeks . Do you maybe use your mobility component for a vehicle?

You really have no idea what you are talking about when it comes to PiP do you? It does not "trap" anyone into the benefit cycle. It can actually help people not to be reliant on benefits by helping them get to, and remain, in work. Taking away PIP from those people could well see them end up trapped in the benefit cycle.

I think she should be getting PIP.

These are all things you need to document. You are clearly providing her with alot of support which is allowing her to survive. Ignore the ableists telling you she can cope. She only copes because you are dedicated to supporting her. You just need to evidence that for PIP.

The support for PIP does not have to be provided by a paid for carer or professional. Keep a record of the support you provide & the number of hours a week she needs it & keep a record of instances where it has gone wrong. Eg calls/emails from uni raising concern. Try to communicate with the uni & services by email so there is evidence.

You can write a statement detailing the support you provide & this is very good evidence for PIP.

Keep the pressure on the services to provide support, they are under huge strain so anyone who slips off their radar due to support from family tends to get left with thst. You have to keep chasing social services & mental health. Ask the GP why she's not on C(E)TR. Even if no support is offered it will be clear documentation of unmet needs that will help with PIP.

Thank you
What is CE(T)R? Thank you

PiP is for help they need to live a "normal" life. Its not about the help they DO get is for the help the should or could yet. You need to show that there are things that she struggles with regularly.

I don't know why they've focussed on medication - many people with autism don't take any medication.

Moving forward, you can request a mandatory reconsideration, you can add any information you think might help your claim and when you win it will be backdated. "If" the mandatory claim isn't successful you can still go to tribunal I believe.

Look at what sort of support your daughter could benefit from - reminders to eat, drink, support communicating with others (selectively mute) help with cooking, washing, picking appropriate clothes. My experience with the DPW is generally most of the staff want to award you the money but just need the right information to do it.

As your daughter is at uni, have you looked at the Disabled Students Allowance?

Big hugs, its a very stressful time.

You need to:

• request mandatory reconsideration of her claim
• then take it to the tribunal stage if needed and make sure you go with her so they can see that she needs support to make her case.

PIP is a shamble and it is very, very common for the DWP to find any way they can to deny claims hoping that people will just give up.

You need to show how your daughter condition affects her in term of her daily life. this could be:

• she needs someone to remind her to take her medication
• she can't use public transport because of her anxiety/she gets disorientated and needs to use and pay for things like taxis or have someone with her to make a journey
• she is struggling to cook and feed herself and need someone to remind her to eat and/or to cook for her
• she is self-harming and a suicide risk and therefore needs someone (healthcare professional, yourself, pastoral care at university) to keep an eye on her and intervene when she is at her worst
• She can lose the will to speak when distressed and therefore someone has to communicate for her and advocate on her behalf when that happens
• She can't always attend lectures and need someone to record them for her (so she needs to pay for extra equipment).

Basically you need to list what she is dealing with (autism, self harm, mental health issues) but also how it directly affects her daily life, state the support she needs from you and others to get by and the fact that it adds additional costs to her daily outgoings.

Pip is shit. If you don't have physical and mental issues they imply because you don't have one of them you must be fine. I.e. 'but there's no mental difficulties so they must be able to do x', or if there IS mental difficulties 'but there's no physical difficulties stopping them from doing this' 🙄

She's away from home at university? I can see why they stopped it then. If she was that bad surely she would need to stay home and go to one nearby?

Thanks for all the really helpful replies. She doesn't get / use DSA; she was insistent she wanted to arranged this herself but didn't get round to doing it. She really can't do or arrange paperwork/ life admin at all.

Think that disabled student allowance might be a good option.

Could you help her with that perhaps?

The rates obviously increased in April:
Enhanced rate daily living: £101.75 to £108.55
Enhanced rate mobility: £71 to £75.75
So for someone on both, the 4 weekly payment would have increased from £691 to £737.20

🤦🏻‍♀️

It's definitely worth helping her to sort this if she'll let you. My mum is a DSA assessor, she is lovely with the students and there's quite a bit of help she can recommend.