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

@AnotherEmma on fire on this thread 🔥 👊👌

Ha thank you! I have the rage, can you tell

It doesn’t make it any harder to give advice. What the money is used for does not matter, the people doing the assessments and making the decisions don’t ask that question, because they don’t need to know.

It may be difficult for your DD to do but keeping a detailed diary of her week might show how her symptoms are affecting her daily routine

It will be harder to get PIP if not on any current meds, as they can't seem to see past that.

Send in the referral to student counselling and a report from her counselor if possible. Send as many medical letters as possible - try and get her notes from GP or student drs as they will note how often she has needed to see then, referrals and notes regarding her admissions.

Send the copy of her autism assessment

Refill in the form adding any extra information to each section NB remember it has to be done safely, promptly and in a reasonable time frame to count as being actually able for her to do.

You can Google to find the law around the wording of what the actual pip legislation is.

Ask for the full report of the decision making and see why points were given or not. Look up the points given for each activity and be realistic as to if she is able to do these.

Don't lie or exaggerate but word your answers so there is no ambiguity. Repeat yourself. If she struggles with timing say....this may make it hard to make a meal....but then don't assume they will remember this point in a later question. Repeat, repeat, repeat

You can ask and I would almost guarantee be given an extension on a written appeal to gather as much evidence as you can.

Repetition and evidence are the keys I've found.

https://www.moneyhelper.org.uk/en/benefits/benefits-if-youre-sick-disabled-or-a-carer/personal-independence-payment-an-introduction#:~:text=Personal%20Independence%20Payment%20(PIP)%20is,Disability%20Living%20Allowance%20(DLA).

Autism is neither an illness nor a mental health condition as you state in your next post. I know she has comorbid mental health issues but these are not the disabilities being discussed and you are making yourself look, at best, naive.

Autism is a lifelong disability and has multiple additional costs. The OP doesn't have to list them for you because her life has no relevance to yours, be thankful that your life doesn't come with these additional costs. I can assure you they are multiple, and expensive. The DLA I claim for my daughter does not cover them.

But please, carry on badgering this mother about her disabled daughter while she's asking a question. You're doing a fantastic job.

Well I actually have a child with ASD and ADHD. And no many others- none of whom are getting DLA. The benefit is clearly intended to help with extra costs and there is nothing in the OPs post to suggest that there are any, and clearly the assessor agreed or they would still be getting it! Yes, SOME people with ASD need it but not all!

You can say to them that your daughter is unable to attend the assessment as it will cause her overwhelming psychological distress and ask them to see her at home.

Why?? My child is on medication and doing well with the services she can access for free and the normal extra curricular activities most teenagers access. Why would she need ‘extra’ money?? She is being treated by the NHS.
We can’t just keep handing out money for things simply because someone has a diagnosis. That isn’t how it works. Plus, particularly with younger people it keeps them trapped in the benefits system which is even worse for mental health in the long term.
I appreciate that there are many people in genuine need of PIP, but we are in a mental health crisis in the UK and handing out money isn’t the solution. This girl isn’t even taking medication as a starting point to help herself better cope.

Autism is not a mental illness @Janedoe82

What the money is used for is not relevant but, as you seem to be hard of thinking, some of the things it might be used for are listed below;

Taxis to enable travel (this is not a luxury as another poster keeps claiming!) many with with autism can't cope or use public transport or need help out and about and can't not plan a journey.
Laptops and specialist software to aid with
study
Clothes that don't cause issues with sensory disorders or multiple items of the same clothes as that all they will wear.
Water and washing costs.

Food that again might be more expensive to deal with the lack of motivation to prep or eat it with sensory issues or arfid or a special diet
Increased heating costs
Specialist gym or swim sessions
Therapy as it's not readily available on the NHS
Etc. etc.

If you have a child with AuDHD then you would be aware that different people have different needs. I'd also think that you'd be supportive to another parent rather than arguing with them

Oh and PIP is not an out of work benefit.

I think think it is really bad to give this parent false hope that the child is entitled to PIP and the kind thing to do is explain why it has been removed and suggest a plan B.

ForLessThanALatte has your DD’s award stopped completely or for just one of the components? If you can, obtain a copy of the Disability Rights Handbbok as there is useful information in there about the assessment process, role of assessors, challenging decisions etc. It can help to go through each question one by one and compare what you’ve written in her form to the assessor’s comments. Pick out everything you can find which doesn’t add up in terms of the assessor’s conclusions or which perhaps needs further clarification or evidence supplied by your DD/family/social worker/doctor etc.
Benefits and Work is a really helpful resource and so is Contact. Please don’t give up on this. Apart from a few misguided or malicious posters, most on here know that your DD is in need of this benefit. It’s not awarded in relation to a specific condition but rather to help with the effects on daily life and costs to meet additional expenses. To be honest, even if your DD spent her benefit on videos or books to help her cope or distract her from life’s challenges, then good on her and why not? Nobody should judge you or her!
A Mandatory Reconsideration is essential but time is of the essence so please don’t delay requesting one. Also describe your DD’ s worst day and what type of help she needs then. This can vary from emotional to physical to mental health support. Even paying for ready meals is a justifiable expense if it means the physical and cognitive burdens are reduced. PIP can pay for this type of assistance.
Do you have the full report from the assessor following the phone call? Do you also have the scores from the assessor’s work on your DD’s PIP form? It’s vital to go through everything the DWP have written as well as your own answers. Can more evidence be produced? It’s incredibly hard work and takes its toll but vulnerable, anxious like your DD deserve to have their needs properly understood and recognised. You sound like a wonderfully caring mum and I wish you both lots of luck.

I think people are being unnecessarily rude to each other on this thread. I also have a daughter with ASD who is medicated, self harms,has attempted suicide twice and is medicated. It has never crossed my mind to claim PIP for her. Maybe I should but she washes and dresses herself and walks or catches a bus. She can cook if she chooses too but spends too much on pre prepared meals. She uses the disabled pupil fund to get some help with managing University but has no mobility or self care issues. I don't see how a diagnosis of ASD meets criteria for PIP unless their condition causes them to need support with washing/ dressing/ toiletting/ eating/walking etc.
So I actually think it is fair enough( especially for those of us with children who sound similar) to ask what it is about her condition that makes life more expensive( which is what PIP is supposed to be for)

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

It isn’t about a specific condition.

There are many other resources available for those with ASD that don’t include PIP.

🤣🤣🤣
Pray tell, I'm sure it would be helpful for everyone with autism, or with an autistic child, to know about them!

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.

Do you have ASD yourself?

No. Do you?

In my area there are many autism support groups/ activities/ family support in the home/ training courses for parents/ family members. Plus support within the NHS and social services. None of which require payment.

Isn't that lovely for you that you and your child have been able to access them.

I myself have really struggled to access any of this for my child and our family, and I know a lot of other people (autistic adults and parents of autistic children) who have also struggled.

Perhaps you haven't noticed that the NHS and social services have very few resources and very high demand, so thresholds are high, gatekeeping is a problem, and even if they accept there is any need, waiting lists are ridiculous.