Any advice regarding claiming PIP?

[EvenMoreFuriousVexation]

Hi all, I thought this would be the best place for this thread.

My son is 25 and has significant MH issues which have been affecting him for most of his life. He has never been able to work. He does hope to at some point in the future but will need a lot of support.

He has recently got his own place to live (he was driving me insane and vice versa) and he has been claiming UC since the beginning of this year (while still living with me.) He has had a work capability assessment over the phone, and the DWP have decided that he is not capable of seeking work at the moment, he will just continue receiving UC and won't need to have weekly appointments (which is good news as he found them very stressful.)

They have advised him that he should claim PIP. I thought this was part of his claim already but apparently it is a separate process. When looking how to claim, it seems this has to be done either by written form or on the phone, it's not possible to do online.

I have never navigated the benefits system and I'm finding the whole process incredibly confusing - it's very obviously designed to make it as difficult as possible for people to claim. I know several people who have given up claiming a benefit to which they were entitled as they found the whole process so demoralising.

DS has mild learning difficulties, severe anxiety and PTSD. He also has stress-linked IBS and GERD. He completely forgets to do any self-care unless I remind him. He forgets appointments, leaves letters unread, leaves a mess wherever he goes, forgets to check doors are locked, etc. He is terrified of getting lost and hates public transport so if he doesn't know where he's going he often has a panic attack if he's on his own. He takes a lot of taxis because of this.

Having read the PIP criteria I do think he qualifies for both parts of the award, probably at lower rate.

I suppose I'm just asking for advice - is it better to do a phone application or the form? I would have to help with either. What sort of questions would they ask? Is it similar to what he was asked for the capability assessment - eg is he able to cook a meal, get dressed, leave the house, has he attempted suicide, does he self harm, etc? Or is it something completely different?

I'd just like to know what to expect - DS finds "the unknown" very scary and he was very upset after the capability assessment asking about suicide etc.

Thanks in advance :)

Hi there
I applied for my daughter last year. I found this guide very useful
www.turn2us.org.uk/Benefit-guides/Personal-Independence-Payment/What-is-PIP
Ensure you are registered as your son’s advocate then they will speak to both of you. When completing the forms always think of what he is like on his worse days. After completing the application several weeks later we had a telephone assessment as it was in strict lockdown last April 2020 the telephone woman was lovely but did write down absolutely ever word either of us said. I understand that if you are called to a face to face assessment appointment they will watch your son from the moment he enters the building. My daughter got nothing for day to day living despite needing constant reminders to wash/eat and she cannot organise herself at all etc. She can heat something up in the microwave I remember a lot of emphasis being placed on food prep in the assessment. She got the lower rate for mobility despite not being able to go out on her own and not being able to plan a journey. She doesn’t have a learning disability though. I did a lot of research before filling in the application. Good Luck with it!

You might find this useful.

When completing the forms always think of what he is like on his worse days

It's far better to be honest, DWP know that conditions fluctuate, that's why it's good to submit a diary.

CAB have a good guide to PIP www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/fill-in-form/

Benefits and Work, you have to join, www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/fill-in-form/ but their guides and also guides on how to appeal are very good. Appeal for MR or Tribunal is likely, many are turned down on the first attempt, so you need to persevere.

If he's not able to fill the forms in himself, you can do it as his appointee.

I have no experience of the telephone system, so cannot advise,.
Idid the paper form, ,itt akes a long time to complete, you'll also need supporting evidence like all of his assessments for LD and medical diagnoses of his other conditions, details of treatments etc.

Formatting's not working, above should read About 3 years ago, I did the paper vform

Join www.a1benefitsupport.com/?fbclid=IwAR0W-PpS5tXsr-kSLUvc5HVgj8BsPmACmKoP-vbayWwF5tBrnX68-f0soBU

You join through fb but the guides are free ans they are so helpful with questions

Thank you very much everyone for the links, I will have a read through and ask for the paper forms to be sent, I think that's probably going to be the best way as we can think carefully about each answer.

They do seem to focus a lot on meal prep don't they? I've heard that before. He is able to heat things up in the oven/microwave but we have had problems with him forgetting to set timers etc and burning things to a crisp, setting off smoke alarms etc. He frequently misses meals as he just forgets to eat if I don't prompt him.

Initially the phone part is just ringing for the form. He has to do this himself, or at least be there to consent for them to talk to you. They will talk basic details then send the form out.

@EvenMoreFuriousVexation there is no telephone or form system. You ring up to ask for the form and that starts the process. You are best to apply to be his appointee with the Dwp for both pip and UC.

Also although you should take with the form (unless you get a paper based decision why you may due to Covid) , it what is said at the face to face that affects the decision.

*take care

As a previous poster said, when filling in the form answer questions as if it is his worst day. We were told to do this by our mh support workers and this was also stated on a guide that we were given to help fill in the form. Also, if he gets pip then whoever looks after him may be eligible for carers allowance if they meet the criteria. You could also look into whether he is eligible for income related ESA and some energy providers also give a grant of 140 per year to assist with bills for people on Universal credit which may be applicable to him. You can also request to have a carers assessment for yourself and an adult social care assessment for your son which may result in extra funding and support for your son. I knew nothing about the benefits system until 2 years ago when my husband became seriously mentally ill. There is help out there, it's just knowing where to look. Apologies if you already knew this information.

when filling in the form answer questions as if it is his worst day. We were told to do this by our mh support workers and this was also stated on a guide that we were given to help fill in the form

That is really wrong, it's lying.

Callywalls Do you have a link to that guide please?

For goodness' sake, tell the truth, there's plenty of opportunity to document bad days and their frequency.

@BlankTimes

when filling in the form answer questions as if it is his worst day. We were told to do this by our mh support workers and this was also stated on a guide that we were given to help fill in the form

That is really wrong, it's lying.

Callywalls Do you have a link to that guide please?

For goodness' sake, tell the truth, there's plenty of opportunity to document bad days and their frequency.

I was told by the assessor in person to fill the form in as if it was my worse day. Granted my claim isn't MH.

The advice given to 'write everything as if it's a bad day' is terrible advice. All that happens then is during assessment your answer cast doubt on the ' bad days' and the assessor will delve deeply into the actual frequency of them.

On the paper form it's useful to write good and bad days, noting how often these happen. Also note how good and bad days compare e.g. on a good day DS will make a pot noodle for himself but on a bad day he won't even grab a bag of crisps despite constant prompting. You can make notes about how you support him e.g. you do all his shopping but only buy meals that don't need to be prepped.
These examples cover activity one but I think you get the jist.

The scope for each category is very specific.

I was told by my daughters job coach at the job centre to write it thinking of your worst day. Also by her s/w. I understand PIP assessors are suppose to look at how you’ve managed over 12 month period and that they look at what you can do. I do not think it is lying at all to talk about your worse days. Obviously you can talk about both.

Citizens advice can usually help people fill in the form. They have specially trained advisors who do this. Seeing as he’s already been through so much distress with UC, it might be better to try and get support from them rather than try yourself, then not get enough/turned down, then have to appeal. Or is he getting support from anyone else apart from you? They might be able to help. When I applied for PIP my CPN filled in the form.

Citizens advice can usually help people fill in the form. They have specially trained advisors who do this.
Don’t do this, they are not specially trained and can make things worse. Far better to fill it in yourself or get help from a charity specialising in your sons disability. Also benefits and work is well the £20 .

@MyDcAreMarvel I volunteered for Citizens Advice! They ARE trained. Only specially trained advisors are allocated help people with the forms. Advisors have to attend special training in addition to the usual benefit training, in order to support people with the PIP forms or PIP appeals. I never went for the specialist training, so never helped ppl with those forms.

Citizens advice can usually help people fill in the form. They have specially trained advisors who do this.
Don’t do this, they are not specially trained and can make things worse. Far better to fill it in yourself or get help from a charity specialising in your sons disability. Also benefits and work is well the £20 .

I’d disagree, in our area we have specifically trained advisers in the local office who know exactly how to fill them out successfully. Also have the family intervention team with the country council who help with these forms. They are hard to fill out and hard to get the benefit for mental health, good luck.

Contact the welfare rights department of your local council.

@dangermouseisace Inever went for the specialist training, so never helped ppl with those forms. so you have no idea how poor it is.
I should have highlighted the word specially I will rephrase, yes CAB are “trained” but badly and in many cases will reduce the likelihood of a successful pip award.
The CAB can be very helpful for some things, dla/pip claims is not one of them.

I sit on PIP tribunals.

Don't write about your worse day. Anyone who has told you this is encouraging fraud. And as someone else mentioned CABs, some a crap, some are fab.

Fill out the form honestly.

Ac1- prepping a simple meal- does he need prompting to do this?

Ac2- taking nutrition- if you put a meal he likes in front of him will he eat it?

Ac3 - managing treatment & therapy
Does he reliably take medication that is prescribed?

Ac4- bathing- how often would he bathe if not prompted

Ac6- dressing- how often would he change clothing if not prompted? Does he understand weather appropriate clothing?

Ac7- communicating verbally- could he understand a simple verbal instruction from someone he knows? EG- yes ill have a cup of tea two sugars

Ac8- reading- could he read a simple sentence?

Ac9- mixing with others- does he suffer from overwhelming psychological distress when mixing with others 1:1?

Ac10- budgeting- can he do simple math? Does he know what comes in & out of his account?

Mob1- what would he do if he needed to complete an unfamiliar journey alone?

Get the last 6 months GP records & associated specialist letters EG psychologist/CPN/psychiatrist etc

Also would be useful to send a document that proves his LDs.

Also call DWP. Ask for a copy of the UC85. This is the HCP assessment that put him in the 'support group' for limited capacity for work. Send that in with the PIP2 form.

@MyDcAreMarvel I know my branch consistently had over 80% success rate at getting decisions overturned/positive outcomes at appeal (most people came to us due to being declined) so the training can’t have been that bad. Can’t recall any initial statistics off the top of my head. Plus I know that the basic training I had myself, helped when I applied for DLA for my son, successfully.

I applied for PIP and filled out the form with help from a charity; as I have Schizoaffective disorder (bipolar type) with negative symptoms which mean I often lack energy or motivation to carry out every day tasks like having a shower or even teeth cleaning (yuck I know but it's a struggle at times).
I only use the microwave to reheat basic food. I never cook proper meals.

I also have unstable photosensitive epilepsy which means I can't drive or cycle, & I have small seizures like petit mal when walking or travelling past sunlight.

So after my assessment I did not get any points. The assessor didn't seem to even understand my diagnosis.
The problem is that I manage to (only) work part time, despite the fact I told the assessor it's a huge struggle to get ready for work & I feel really paranoid at work it's taken as showing you don't need PIP.
Then she took the fact I'd been to university (long before my diagnosis!!) and used it against me.

I was invited to apply for Mandatory Reconsideration so the charity lady who was really angry with the assessor filled out the forms and sent them off.
I was shocked to then be awarded the low rate PIP for Mobility because of the epilepsy at £250 a month.
Looking back I should have held out for Appeal but I just wanted it over with.

I think that applying for PiP for MH & neuro conditions is soul destroying as the application is designed for physical not mental health problems.
Be prepared to get no points and for the 'nice' assessor to lie or twist your words.
Be prepared to go to Appeal where you will most likely win anyway.
Good luck.

@Blanktimes how dare you accuse me of lying. That's a very serious accusation. How can it be lying when that is actually what my husband's condition is like. He is psychotic and he tried to throw himself off a multi storey car park due to depression from having cancer and early onset dementia then stabbed himself through chest, injuring me in the process. He's been sectioned and now home, cannot be left alone. He is a shadow of the person he was. He is 56 and has worked and paid into the national insurance system for 40 years. A system created to help those in need, paid for by taxpayers. He obviously does not try to kill himself every day and some days the dementia is worse than others. We were told verbally to fill in the form as if it was his worst day and it was also stated in bold writing on a paper guide I was given by the early intervention team for psychosis, to help me fill in the form, so sorry I don't have a link to it. Symptoms can vary from day to day with any illness, be it mental health or otherwise and to get a true picture of how someone's condition affects their day to day living, which is what pip is all about, the assessor needs to know how bad things can get. People like you make me sick, sat in your ivory tower, judging people just because they are on benefits. No wonder there is such a stigma about mental health issues and people don't seek the help they need with people like you judging them. You should be ashamed of yourself.