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