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

Pip is not awarded "without a clear need", as everyone has tried to point out to you several times, although you refuse to waver from your opinion.

There is no way you can separate what is the autism and what is the mental health issue; the two things are linked and an autistic person will not experience mental health issues in the same way that a non-autistic person does.

Sounds great! Let’s completely disempower her!! Never worry about learning how to manage on her own, she can have a carer who can sort her taxis so she doesn’t have to organise her time to be able to use public transport or have a strategy in place to plan to eat!

No I am not going to waver from my opinion because I have seen it so many times and know it isn’t the answer.

Eh? Genuinely no idea if this is passive aggressive response or not..?

I was just pointing out that OP’s daughter will be able to get laptop, software, printing costs through uni DLA. Your post could confuse others and it’s good for people to know they will get laptop software provision if they have SEN to support them with their studies.

Unsure what you mean re: forms. She can just go to Uni office and they will help her to access this. This isn’t the same as the PIP process.

I know that would rile you and your likes. You took the bait.

Carer's allowance is absolutely available (if the criteria is met) once dd gets PIP. Even the DWP told me that.

Money does not disempower. It frees a disabled person from worrying about how to fund their extra expenses and enables them to focus on gaining independence. OP's dd is a young adult going to university and giving independent living a go. The money will support and shelter her to do that until she matures as an adult and finds her own coping strategies and ability to self-manage in her own time.

I have seen my own dd blossom at university because of DSA and PIP. She does not need to take on a part time job which she would find very difficult with her communication difficulties. So I am glad we persevered with PIP. Once she gets her degree and a way to earn a living, we will revisit and hopefully my dd won't need PIP anymore.

I personally have no idea and quite frankly no one else does either! of this particular girls is entitled to pip. But money can absolutely makes eating much easier. It can buy some sort of catering . That just a regular loan wouldn't be able to cover.

If this person would be better managed more closers to home considering the time and effort the mum does to support her and how much added support it seems she needs, regardless of whether the daughter wants to be more independent or not, is another question that obvious people can speculate but only parent will know. I have a highs needs disabled autistic daughter , she may never be able to be independent. So definitely worry about future and would love for her to be independent, but sometimes if something isn't working , it doesn't matter how much money u throw at it it won't Work and that's not to be rude that just life when living with disabilities. I'm not saying she should never be fully independent and away from home
But maybe it's not the right time if she is Relying so heavily on her parent.

Also just something I've thought of and also is opposite of my last point. While myself was at uni for teaching I was diagnosed dyslexic and I was given laptop some other learning aids and had a weekly session with a lady who helped organise my work. I mean in general living using money to pay someone to be a home carer to organise life admin/budgeting /cooking could totally benefit a person who struggles with life admin/cooking/taking general care. Which makes them be independent where maybe they wouldn't be able to to be otherwise

DSA yes. Pip no. Not having to work is helping no one. Work is ultimately the best way to ensure long term independent living. Yes- it might be hard but that is why we have disability legislation and employers are required to make adjustments!!

Some of her symptoms aren't really 'cognitive impairment', so I do a free with them on that.

It does sound as though you are still wanting her to be treated as a child.

It's good to advocate for her, but if she doesn't want to take medication, and she needs to be re-assessed or phone the helpline, then she will have to do that. Unless you have power of attorney for her, no-one will discuss your daughter's health with you.

It's sounds like this 3rd attempt at a 3rd university probably wasn't a good idea, and perhaps some time at home, relaxing and getting better may have been a wiser choice.

"While myself was at uni for teaching...."

@chicken2015

While MYSELF was at uni?!?

Surely you mean "While I was at uni..."

It's shocking you even went to university with those poor grammar skills, let alone for teaching.

Sorry, but it's poor.

In ideal world yes employers would make reasonable adjustments and disabled people would be employed as much as non disabled people. However we don't live in an ideal world. I don't think people who can work shouldn't but let's be honest about the real issues disabled people have to actually be accepted into employment. U seem to have a very idealistic view. That just isn't realistic.

employers are required to make adjustments!!

Only if the adjustments are deemed reasonable.

I literally said in my post I was diagnosed with dyslexia, so my grammar and spelling is very poor! But it's literally my condition and when ur up 5 times in the night with ur disabled daughter tireness makes it worse! Im guessing u missed that! ! U will be pleased to know I'm unable to teach now as have to be a parent carer for my disabled daughter, Jesus people really can't help but being unnecessary!

Yes, not every job is suitable but many are. I am sure someone who is capable of going to university can manage some form of part time employment.

I think the lack of PIP is not the most pressing problem your DD is facing. Her poor mental health is. I agree with others that University isn't working and isn't the best place for her right now. I don't know how you would talk to her about that, but it leaps off the page to me and others on the thread.

3rd attempt at a 3rd university - I really don't understand why she hasn't been advised at any point to apply for DSA.

PIP helps with work.

Employer adjustments (if they are made, but you live in cloud cuckoo land so that is not an issue to you) are not cash payments. The persons still needs to get dressed, come into work and feed themselves. PIP gives the person an allowance to help with extra costs of that if their condition affects these daily activities.

@ForLessThanALatte

There is an organisation called Fightback4justice who are experts in fighting Pip claims. They charge a fee but they're legally qualified and a charity so very reasonably priced. They have a brilliant success rate and are well worth contacting for advice

Thanks @Davina69

This is just unnecessary and mean 😒

If your daughter is going 4 or 5 days at a time without any food then I seriously think she shouldn't be away at uni but back home where both of you can concentrate on her mental health and coping strategies for her ASD so that she is in a better place. The not eating is putting her health in danger and is a sign that she isn't coping. No degree is worth that.

@Davina69 thanks for signposting. I had a look at the FightBack4Justice website:

https://www.fightback4justice.co.uk/learn-about-us/

They seem to be based in Lancashire. Do they offer their services across the wider country?

That’s irrelevant. It’s about needing it, no more. Thats the criteria it’s awarded (or not) on.

Can I really recommend Fightback4justice who helped me and my son when he was turned down. Honestly, the reasons for turning him down were ludicrous for example it went on about toileting and he had no needs but we didn't apply for that - that part of the form was left blan - he has no issues there. Like your daughter, we have to do all paperwork and bills, etc for him. He has capacity but no initiation or decision making abilities. Anyway. Fighback enabled us to reapply and go for tribunal and it was reconsidered and granted. Do look at them. It costs a little but worth it.

People are constantly saying how difficult high rate PIP is to get, and yet what I’m reading here about OPs situation does not seem to be so bad to warrant it? Seems to be coping, albeit with some help, but I would imagine nowhere near bad enough to get high rate PIP?