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

Oh gosh this sounds awful. I'm so sorry I don't have any advice other than to appeal. Is there an autistic charity you can ask for support?

I'm so angry on yours and your daughter's behalf.

I can see you're very upset. To help your daughter, you need to look at this more dispassionately. It will take some time to resolve this. First you need to request mandatory reconsideration. You need to provide evidence of your daughter's daily living and mobility needs now. The information you've given in your op about her history of self harm isn't going to be relevant to a pip award. Neither are historic prescriptions for mental health medication. You should assume that you will need to go on to appeal after the mandatory reconsideration. Plan for the whole process to take 12 - 18 months.

So sorry to hear about your daughter's difficulties, for her sake and yours.

I know it's upsetting but try not to panic because she can definitely challenge the decision, and there should be support available to do so.

Try contacting her local Citizens Advice, which you can find at https://www.citizensadvice.org.uk/about-us/contact-us/contact-us/contact-us/#h-find-your-nearest-citizens-advice

It would be helpful to gather as much paperwork as possible:

• a copy of the PIP review form she did, if she kept a copy before sending it off
• any medical evidence that she has already, plus think about whether she could get any more evidence
• call the PIP helpline and ask for a copy of the full assessment report (there will be references to the assessment in the decision letter but it's not the full report)

Hopefully Citizens Advice can help; if so they will want to look at all the paperwork before they advise.

The first step is to request a Mandatory Reconsideration and you can find out how to do that here https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/appeals/mandatory-reconsideration-pip/

This is the kind of medical evidence that's helpful:
https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/your-supporting-evidence/

She needs some recent evidence if she can get it.

Benefits & Work are another organisation that can help (though you do have to be a member to access the specialist PIP guides etc)
https://www.benefitsandwork.co.uk/

This might help, from The Autistic Society? https://www.autism.org.uk/advice-and-guidance/topics/benefits-and-money/benefits/benefits-appeals

Hi OP. Can you explain what the PIP is being used for needed?. I think this is missing from your post and it makes it difficult to give advice.

I think what medication she was on at 13, 14, 15 and 16 if she's no longer on these medications are irrelevant now. If she's living in halls or away from home and feeding herself it will be hard to say she can't do it herself because who else is doing it for her, it's not like she's at home with you doing it for her? If she's at Uni I assume she won't get points for reading, managing finance and things like that. Can she shower herself? I'm assuming so if away at Uni. Any incontinence issues? Does she go out to attend lectures or collect food? If so it will be hard to claim social issues. Having a diagnosis of being autistic is not enough to get a PIP award. It's getting evidence of how she manages in the set questions and her mobility. Can she walk? Is she currently under a consultant for treatment? If so she could request a letter from them. Letters from when she was a young teen won't help if she's 20 now. She can request a mandatory reconsideration but I don't see where she'd get many points. How many points did they give her?

I know a lot about PIP actually and I am struggling to see why it would be needed in this situation. If unable to work she can access ESA. But without mobility or physical health needs/ help with heating costs etc why would it be needed? Presumably if at uni the long term plan is employment but no physical disability so can get there herself.

This. And for scoring points on any descriptors then she needs to be affected for the majority of the time. So for example you say she may not eat for a few days every so often but does this constitute the majority of days ?
You need to go through each descriptor, work out where you think she should have scored points, then provide evidence to show that the descriptor applies.

Sympathy to you and your daughter. Sorry about the unhelpful messages. Ignore them.

Obviously autism and anxiety and depression can be very disabling. But not for everyone all the time. PIP is meant to fund the costs of any extra care or mobility support needs a disabled person needs. As @Nonametonight has already explained the diagnosis and any previous prescriptions are irrelevant. What matters is how your daughter is affected by her conditions day to day now.

You have been given excellent advice on how to appeal already.

In the meantime please try to frame this as a setback, and a very common one, which you will get help and challenge. Try to make it clear you are not anxious or angry.

The assessor will not know about autism and they definitely won't award points on the basis of masked symptoms. They only award points for what they actually see. This is why it's a really hard benefit for people with autism to get, as many people do have strategies for coping with some situations they find hard, but this places them under stress and they need a lot of care and support from loved ones to cope afterwards.

Good luck with your appeal, the majority are successful. But mostly I hope your daughter knows people are rooting for her and want her to get good care.

No physical disability?! Oh that old chestnut. So it's only physical disabilities that count now, apparently

OP has clearly stated that her daughter has autism, SPD, severe mental health issues to the extent that she has a history of self harm and suicide attempts, and she can go for days without eating.

Yet you have decided - without any further information - that she is definitely not entitled to PIP?! That's bullshit.

The only way to be sure either way is for a trained adviser to go through the descriptors with her, and review the medical evidence.

Who do you think you are, honestly?! Because if you did actually know about PIP you'd know that plenty of people with the problems OP has described are entitled to PIP and do get it; rightly so.

You need to provide evidence of your daughter's daily living and mobility needs now.

This^
To appeal this you really need to provide evidence of the tasks your DD needs help with now, preferably a HCP or someone from the university.

First step is to ask for a copy of the assessors report and do a mandatory reconsideration. Did you send current evidence? Therapist, GP?

they will want to hear about her current needs and they need to be there the majority of the time. Have a look through the assessors report and the PUP activities and points and see where you think she should have scored then highlight the evidence that backs it up.

The PIP assessments are horrible, my 16 year old who has Down syndrome had to do a face to face. The assessor blatantly put words in his mouth (she asked what bills there were for a house, he had a think and eventually came up with electricity, she prodded and prodded and eventually asked him what him came out of the shower “water” he replied. So now he “knows” 2 bills). He said he liked reading, I clarified that he liked looking at a book about Aladdin that was aimed at 5 or 6 year olds, this became him being able to read and understand complex information.

If the mandatory reconsideration also fails then you can take it to tribunal. Lots of cases get overturned at this point.

you just need to remember that it’s not about the diagnosis, it’s about her daily living skills and what she can do safely and repeatedly.

Yes- but what exactly of the above warrants extra benefit beyond what she would get on ESA??? She is a full time student. The money is provided to help with the ADDED costs of an illness to alleviate the pressure. What extra costs does she have?

As in does she need to buy in care? Attend a day Centre, go to a specific activity? There are thousands of people with mental health conditions who manage it with medication or free social prescribing type activities, they don’t all get PIP.

What it's used for is irrelevant to the claim. What matters is meeting the scoring criteria for level of help needed, whether it's given or not and whether it costs anything or not.

PIP assessments are awful. The letters they send after are often full of lies as well. Ask for a mandatory reconsideration, that has about a 20% success rate. If not successful, go to tribunal. The success rate there is about 70%.

What did Jane say?