PIP Telephone Assessment and Appointee

Thankyou Bis for your reply. I really appreciate it. I've definitely decided not to involve our son in the assessment so I'll have to stand my ground if the assessor starts insisting. I'm hoping it won't be a long call!
Best Wishes,
J

Hello J,

I very much endorse the advice BIS has given you, because this is something I wish I had known before my son’s assessments. On both occasions, the assessment company insisted my son must be present and must be allowed to speak for himself, even though I am his appointee. I now feel this was a mistake, although, to be honest, I don’t know if I could have done any better if I’d been alone, as they don’t always appear to listen to appointees either, according to several reports I have read on the forum. I don’t wish to be a prophet of doom, but I can recall other members’ accounts of believing they had a sympathetic assessor, only to find no points had been awarded, so make sure you request a copy of the PA4 (the assessor’s report) from the DWP as soon as you can (I think you need to allow 48 hours) after the assessment. Then you will have some idea what to expect – if it looks reassuring, so much the better, but if it looks as though you might not get the outcome you are hoping for, you can start preparing for the appeal process.

In the meantime, you asked what you might expect from an assessment. I can only speak from my own experience, and my son has had only two assessments so far, thank goodness. The first was face-to-face, at home, the second a telephone assessment, and both lasted nearly two hours. They followed roughly the same pattern, in that the questions were covered in the same order as those on the form, but I don’t believe the assessor, in either case, had read the form beforehand or looked at any of the supporting documents. There were a few additional questions, mostly about driving, which PIP assessors seem to think very important as an indicator of ability, even though the PIP form itself does not specifically ask about this. My son doesn’t drive, but he has a provisional licence which he uses for photo ID - he has had several attempts at learning to drive, but has never passed a test. This was interpreted to mean he could drive and, therefore, could manage all the other PIP activities without difficulty, so be very wary about this. Each time, we were asked in great detail about his eczema, which I don’t consider to be his primary condition, but I think this might have been because PIP assessors understand the implications of physical disability better than neurological problems. Both also wasted a lot of time asking about his walking ability, even though we had clearly stated that he has no mobility problems. This confused him quite considerably, so that every time they repeated a question, he gave a different answer, as though it was a test he was trying to pass by giving the answer he thought they wanted. (His problem is in following journeys, not with actually moving about.) At the end of his first assessment, he was asked several questions designed to test his cognitive ability, which the assessor stated he answered correctly, even though he didn’t. (Very basic arithmetic and spelling questions – nothing like those you will remember from the process of diagnosis.)

There is a lot more I could say about all this, but I’m afraid I might have said too much already, and the most important thing to remember is that people with autism, even if they are very intelligent, as many are, can be easily tricked by others into giving the wrong information about their practical abilities, for all sorts of reasons, and this is why they need someone to speak on their behalf. This is especially true during a long assessment. Towards the end of each assessment, I was aware that my son was becoming tired and incoherent, saying things which he did not mean and which could not possibly be true, but the assessor ignored this. (For instance, he told her he could walk 80 miles, which she wrote down as eight, probably because it made more sense to her.) Under pressure, he just says the first thing that comes into his head, regardless of whether it is true, or whether it makes sense.

Unfortunately, the problems with daily living faced by people with autism do not easily fit the PIP criteria and some assessors do not understand why someone who might be educated to degree level can also struggle with the simplest and most basic tasks of everyday life, especially when there is no obvious reason why, as there might be with a physical disability.

Please forgive me if it turns out I’m being unnecessarily negative – I really hope it all goes well for you and that you get a positive outcome. Please come back to the forum and let us know how it went – there are so many people here who will support you if you need it, but most importantly, we will celebrate with you if all goes well!

Best wishes,

Wendy Woo

J wrote:

Thankyou Bis for your reply. I really appreciate it. I've definitely decided not to involve our son in the assessment so I'll have to stand my ground if the assessor starts insisting. I'm hoping it won't be a long call! Best Wishes, J

Hi J

I'm appointee for a number of ppl in my life. I've not had any issues with dealing with DWP on their behalf. On another occasion, where i dont have apptee status , i was there to support bec clmt has Parkinsons and sometimes comms are difficult. i was allowed to speak too.


In all cases i normally have the clmt with me for a couple of reasons;

even though DWP rules mean the assessor should just speak to apptee they often ask for verification from clmt

secondly i like to involved the clmt as much as possible in the hope one day they can manage independently or at least not be frightened by the appts [/li]

once identity and verifications are over clmt cam go back to bed usually.


Dont worry, do your best. Despite our efforts the reality is we can't control what the assessor understands and interprets -BUT u can record the call and ask for the HP report and take matter further if needed using that evidence as the basis for MR or Appeal

Speaking from experience

good luck

Hi,
Just wanted to update you on our sons phone assessment. It lasted 1hr 20 mins. The assessor was really friendly. She asked if it was ok to chat about our son's pip as it had been a while .
Our son didn't contribute. He was ill with the stress of it all and even if he was well I would still have spoken on his behalf as his appointee. She said that it was it grey area which it isn't. She said that if he wasn't ill she hoped that he would speak to her but they don't want to make anyone's health worse.
Her questions included asking about helping in the house , food prep and cooking, She asked if we had a dog ( we do) then asked who walks him .I thought that she'd refer to my specific answers from the form which she didn't. A lot of questions were about school, going back 20 years ago which I wasn't expecting. Lots of questions about his qualifications, what he does during the day , washing and bathing , sleeping. She allowed me to talk and explain things clearly to her. Our son has 5 diagnoses and its quite complicated but I felt she did listen. She was happy for my husband to contribute which he did .The only thing she said that I really corrected her on was about following a journey. She said that because our son recognises a route after we have driven along it a few times in the car ( which he does) then this means he can then look on the internet, find that same route and then plan and follow that journey independently on public transport. He can't A tad sneaky I thought!
So I would say
* make sure the assessment goes at your pace, not the pace they want
* If what they're asking isn't clear , ask them again and again if you need to- to understand exactly what they mean,
* Include as much detail as you can in your answers . I talked about the difference in sharpness of veg choppers for food prep to get across the reality of it and that I know what I'm talking about.
* She said she'd received the supporting evidence but hadn't looked at it yet so if there's specific letters you really want them to read tell them as I'm pretty sure they don't look at it all though I maybe wrong there.
*She also said that the reason they were ringing is because I hadn't updated them . To be fair I hadn't. Some years things tick along but there was a two year period when we accessed a lot of services and things changed. Also during that period Mum was diagnosed out of the blue with a rare terminal cancer and died 16 months later so I don't inform them of changes as I wasn't thinking about it
* Keep them updated with changes of condition ( not prescription changes though as she said they would be inundated) & new conditions . Then hopefully they don't necessarily have to see or phone you.
* I had a chat with my husband's assessor when he was taking a break and she said that they aren't allowed to plan an assessment or make notes beforehand. She also said that being autistic isn't a reason to do an assessment, it's conditions that often go side by side with autism that they want to assess.
I was happy with what I said but will have to wait and see now.

.My husbands phone assessment was 10 days before our son's so If I remember anything else that will be useful I will post x