To ask about your PIP?

[seekinglondonlife]

In the process of applying for PIP for DS. We have lots of evidence, so hopeful we will get it (he has has HRC DLA from 3 months old). Ds ATTENDS mainstream on a very reduced timetable with a FT assistant. Due to his ASD and anxiety I don't anticipate he will ever be able to work, unless it is a specialist supportive post for a few hours per week (he needs supervision for everything really, can't be alone).
When he leaves school I'm going to have to give up work as he can't manage himself, go out alone etc. Ideally I would have liked him to do some online learning courses, such as OU (and he is keen too) to give him a sense of purpose/achievement. I'm wondering though if this would be seen as something 'positive' and they might try to remove points for his PIP?
Would be really interested to hear what experiences of getting PIP and volunteering/studying have been like. I'm assuming he will get ESA too so again any experience/advice welcome.

Well I get PIP and they don’t ask questions specifically about work or study. The questionnaire and interview are all about what the claimant can do or can’t do without either the help of another person or without some kind of special equipment or with more difficulty than the average person. For instance, if DS cannot prepare his own food or needs supervision to do so that will be taken into account. There are several categories of activities they ask about and also two components - daily living and mobility. In other words they do not say “Are you working or studying at all?” But if, for example, you need help to get to a place of study or a special device to use a computer to write your essays, that will count.

You are allocated points for each category they ask about and the total number of points decides whether you are awarded a PIP and at which level.
I was referred to a service called Auriga Assist by a charity which supports those with one of my conditions and they provided very useful pointers for filling in the application so you might find them helpful too.

PIP is totally focussed on the extent to which someone can carry out the narrow range of activities covered by the form.

I strongly recommend you read some of the many sources of advice on completing the form, or invest £20 in the guidance provided by an organisation called "Benefits and Work". At the very least, Google "PIP descriptors and points" so you know what the criteria are.

If someone can't carry out an activity safely, repeatedly, to an acceptable standard or in a reasonable timescale, without prompting, supervision or assistance, they can't do it.

Each answer needs to spell out which of the medical conditions stop them doing the activity, eg "Because of depression, I have no motivation to bathe or shower and have to be prompted to do so".

Even when the form has been done well and there is loads of supporting evidence, applications are often turned down. This is why the number of successful appeals is so high - 80% or thereabouts (and that doesn't include the decisions that are overturned at the intermediate "mandatory reconsideration" stage).

I've had many clients who get 0 points at the first stage, but have gone on to get the enhanced rate of both elements at mandatory reconsideration/appeal.

The Citizens Advice Bureau website is brilliant and basically tells you step by step what to put for each question. Most people make the mistake of over estimating what they can do but they want to hear what you can’t do and on your worst day. If you’re seen in person, remember you’re being assessed from the second you walk in. So if they ask your son how he got to the interview, he needs to say something like ‘mum drove me because I’m unable to drive myself. We parked in the disabled bay outside, which is approximately 10m from the front door and mum helped me in as I felt unsteady. I then got the lift upstairs (if applicable) and waited in the waiting room for you to call me in’ Be that detailed. More so if needed.

All very helpful, thank you. I remember a thread on here where a poster who got PIP had a reassessment and lost points when she notified them that she was doing an online course. That's what is worrying me. The reality is that I'm going to need some of his money to cover our basics once I give up work, so can't afford to drop from a high rate to low rate over a course that he might not even finish.

You just have to justify each descriptor and explain how and why he needs help with the daily living tasks and what level of help
Working and or studying is not a barrier to claiming PIP
I work FT and get enhanced care and standard mobility - not all my disabilities are obvious but PIP allows me to pay for the help I need that enables me to work and have some kind of life

Ds is 17 and autistic with significant mental health difficulties and was awarded PIP, enhanced mobility and enhanced daily living last year. He needs support with daily living and can't leave our home independently He was at a mainstream sixth form at the time, he's since dropped out.

He had never received DLA and I filled the PIP form in using information from the citizens advice website. I can only work very part time hours as he needs me too much at the moment.

Does your Ds have an EHCP? This can go on post 16 and until 25, if needs be.

My Ds's EHCP has just enabled him to get a place at a independent specialist FE college. Hopefully he will be able to study in a more supportive environment but also get therapeutic support and help with independent living etc.
If your Ds does have an EHCP, this could be something you could look into?

Answer every question fully referring to the criteria & advice mentioned @LakieLady & others. Spell out for each question in detail the response against the four criteria

‘ If someone can't carry out an 1.activity safely, 2.repeatedly, 3.to an acceptable standard or 4.in a reasonable timescale, without prompting, supervision or assistance, they can't do it.’
My comments in bold.

Previous entitlement to DLA does not map to the criteria for PIP so it is important understand each question & answer fully.

PIP is not a means tested benefit, so it is not unusual for claimants to be in work or studying.

As PP mentioned many applications fail first time, so be prepared to appeal. It is well worth getting the support of a local disability rights/advocacy organisation.

Should your DS be called to an interview, you can attend as his carer to support him but you may not contribute to the interview.

@MintyFreshBreath is right to point this matter out. You are assessed from the moment you approach/enter the premises & how you got there.

My DS is 19 and attends university 2 days a week ( allegedly full time!) It's at a university centre at the local college - he gets the bus there and back but that's the only journey he can do. He gets high rate care and standard mobility.

I don't think he will ever manage work but studying hasn't affected his claim.

Thank you all. What if DS isn't able to/doesn't want to communicate? Am I allowed to speak on his behalf?

@seekinglondonlife

Thank you all. What if DS isn't able to/doesn't want to communicate? Am I allowed to speak on his behalf?

Yes he's allowed to have someone there with him to help communicate. I just had my assessment a few days ago and they ask if you have someone with you at the beginning of the call.

Ds didn't have an assessment. His CAMHS nurse was contacted instead of us. So it doesn't necessarily mean that he will be assessed.

Are you his appointee?

Hi we have just applied for PIP for ds 17 who attends mainstream college with support and has an EHCP. We are still waiting on a decision but the report was favourable. Bear in mind the process is long- we are still waiting and it’s been 7 months
If your sin has asd and communication issues you can apply to be his appointee and manage his benefits. If they require an assessment you will then attend on his behalf.
My son has ASD and learning needs. Hope that helps

Oh and my DS had a paper assessment as opposed to face to face

@Grapewrath

Hi we have just applied for PIP for ds 17 who attends mainstream college with support and has an EHCP. We are still waiting on a decision but the report was favourable. Bear in mind the process is long- we are still waiting and it’s been 7 months If your sin has asd and communication issues you can apply to be his appointee and manage his benefits. If they require an assessment you will then attend on his behalf. My son has ASD and learning needs. Hope that helps

Did you receive your report before you got your decision?

They questioned and turned down my daughters PIP application (we did get it in the end after reconsideration). My dd is in mainstream and doing A levels, they said they felt because she was doing A levels she couldn’t have the difficulties we were claiming she had 😡, my dd has a diagnosis of Autism, dyspraxia, hypermobility and hypertonia, she had physical disabilities as well as the anxiety and social issues related to ASD. They basically said she was lying because she is academically able and scored her with 3 points. My dd doesn’t go out alone, can’t cook due to the dyspraxia and struggles to do simple things like wash her hair and shave her legs. So I asked for a reconsideration based on the grounds that her academic level has f*ck all to do with wether she can care for herself or travel by herself. Luckily the guy who did the reconsideration was much more understanding and believed everything we said.

I’m about to start the whole process again for my other dc who is more severely autistic, I’m hoping because she has a EHCP and attends a sn school it will be a lot easier but I’m not holding my breathe. Also waiting to hear where dd2 will be going for college next year, it seems they will only offer a 3 or 4 day placement meaning I can’t look for work (I won’t know until September what days she will be going in), it is really frustrating.

Dd1 was made to do the phone interview, it was very stressful and I sat with her. My dd2 isn’t very verbal so I’m not sure how that’s going to work if they want to talk to her, I guess they can try and then they will see that’s she’s not very verbal and doesn’t communicate well.

We had the money put into the bank account, before any paperwork or notification of the decision received. Ds waited 8 months from start to finish. So he also had a lump sum payment.

If you are DS’s appointee you can speak for him, he does not have to answer their questions although they may try to tell you he must.

Does DS have an EHCP? If not, you should apply for one. If he has why is he on a reduced timetable?

Love if you are DD2’s appointee you can speak on her behalf, they can’t insist she answers. If DD needs a 5 day placement one should be given. Don’t be fobbed off with this is what we offer post 16.

Yes he does have a EHCP and the reduced timetable is mentioned there. He is only doing 4 GCSE's as the original 9 were extremely overwhelming for him, as was a full school day. He also can't go to the toilet in school (OCD) so that also means he can't stay a full day. He has a lot of health issues, the ASD is just one issue.

For those with older dc on PIP, do they also get other benefits?

His EHCP can continue support to him once he's left school.

Ds doesn't get any other benefits currently. I do claim carers allowance though.

The LA should be providing alternative provision for the time DS cannot attend school full time. The nature of that provision can vary depending on DS’s needs. It could include therapies (SALT, OT, physio, MH therapies…), alternative provision, subscriptions…

It doesn’t sound like DS’s EHCP is meeting his needs currently.

You shouldn’t have to give up work. DS’s EHCP can continue until 25 and if DS cannot attend a setting or if he can but only part time it is possible to get a TA/mentor/PA to support DS at home, in the community or at alternative provision.

Have you had social care assessments?

The rules for UC for disabled young people have recently changed. Getting in touch with Contact would be a good idea - here and here is some of their information about it.

Grapewrath
Hi we have just applied for PIP for ds 17 who attends mainstream college with support and has an EHCP. We are still waiting on a decision but the report was favourable. Bear in mind the process is long- we are still waiting and it’s been 7 months
If your sin has asd and communication issues you can apply to be his appointee and manage his benefits. If they require an assessment you will then attend on his behalf.
My son has ASD and learning needs. Hope that helps

Did you receive your report before you got your decision?

I asked for a copy of the report after the assessment. I’ve had the report several weeks now and am still waiting for the case manager to make the decision. I know that overall they follow the report, but not always.
I got the report so I could prepare myself to ask for a mandatory reconsideration if necessary

Imitating we are not exercising our rights fully because the most important thing has been ds' mental health. In theory I could have insisted that provision was made for him outside of his timetable but it would have had a very detrimental effect on his MH, which in turn negatively impacts the rest of the family.
Thank you for those links, will study them.

PIP is not based on academic achievement or employment, paid or voluntary. My husband claims PIP, he is educated to masters level and works, volunteering isn’t hugely different to working.

@seekinglondonlife have you had a social services assessment for moving into adulthood and getting Individual payments? We did this and he got a PA for a couple of hours a week who did travel training with him. They also paid for an assessment at the Queen Elizabeth Foundation - who also run excellent courses. Best of all, he accesses Employability who accompanied him to job interviews and to work for the first few weeks. He has worked full time for several years now.