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PIP assessment tomorrow. Any advice?(21 Posts)
DD is 20. High functioning autism. She has been claiming PIP with mobility for the last 3 years and it is renewal time. Tomorrow is her assessment. Originally it was just the firms we filled in with no assessment so this is new.
She goes to college, has a part time job, drives.
On the surface she’s doing ok. Underneath she’s not. She only leaves the house for college or work. Only drives specific routes. (The PIP pays for her car. Without it she’d not be able to get to college or work because public transport doesn’t work well for her). She’s on anti depressants, has elements of OCD, agoraphobia, massively anxious, phobic about many things. Life is a tiring round of routines and planning.
I worry the PIP will be stopped so she’ll lose the small bit of independence she has. And if it is are we supposed to support her financially forever?
So this assessment. What should we expect? Any advice?
"On the surface she’s doing ok. Underneath she’s not." - this is the tricky bit - a lot of my assessment dismissed my mental health issues due to my socially responsive demeanor (masking years of anxiety)
Make sure you prepare for lots of questions about what she can / can’t do for herself.
My DH came in with me and was able to answer a lot of questions for me / help me with answers. My assessor even made me realise that even though I was coping / masking things I still needed the help that PIP etc gave me.
There was a short “physical” bit - gripping the assessors hand, bending etc, nothing at all strenuous. He really emphasised to only do something if there was no pain or discomfort at all.
When discussing how she gets around put emphasis on the fact that she can only do routes she is familiar with. If she was on public transport and the stop was changed, or a train cancelled explain how she wouldn’t be able to cope / the fact she would then rely on someone else to help her. Would she be able to ask a stranger for help?
I think I got really lucky with my assessor as he was understanding of MH issues aswell, my advice would be to not allow them to overlook this - explain to them that without her car allowing her independence she wouldn’t be able to go out, explain how her anxiety would be affected etc.
This may help (its not me).
I’m going with her so will be able to jump in when she says ‘yes I’m fine thank you’
It’s the what-ifs that are impossible to measure. On a good day, yes, she could get the bus to college. Most of the time having to get a bus anywhere would mean 4 days lying in a dark room to recover. And if there were a breakdown or delay it’d not be pretty.
Thanks for the link. I’ll have s good read
Don’t answer it on a good day.
Answer is on an average day and also ifshe cabt do something repeatedly and in an average time scale you need to make them aware
Also be mindful that they will watch you in the waiting room and also ask how she got there, did she need support in going into the building etc
In many ways she’s worse now than when she was originally awarded it. She’s now in meds and having regular therapy. But being able to drive has given her the independence to get a part time job.
They may well watch you from the car park.
Agree with twinkle. Even think through how she is with a new route in the car do you help? If she only does very set routes say. How much input and prompting do you give generally for day to day stuff (e.g showering) Think through how many times or minutes a day.
I help people with pip assessments and are finding to score the points required for a mobility car is hard. Often at appeals they ask if you go to the airport how do you get to gate to get an idea of how far /how much help you would need with mobility. If you had this scenario how much input support coaching and helping would you give your daughter?. I should imagine it would be difficult if not something your daughter would not do. Be honest but try and explain in detail the reality of day to day life. They are likely to want to speak to your daughter and not you. They often don't like you interjecting. If you think this won't be helpful/too stressful for her to answer all the questions perhaps suggest your daughter has a written statement that she wants you to be able to help answer questions as the situation is likely to be detrimental to her health.
Tell her to describe everyday life as it has been on the worst occasion ever. So, if she can brush her teeth and shower some days, but sometimes goes for days on end without ever seeing a bathroom - tell her to use that as her description.
If sometimes she can get a bus, but mostly can't, tell her to say unequivocally, I simply cannot use public transport - describe the worst symptoms e.g. sweating, nausea, panic, fear, feeling faint, dread at the thoughts etc.
Exactly the same for every question. Use her most extreme examples as being typical.
And the more nervous she is (God help her), the better for her unfortunately.
That’s helpful. So plan out what she’s like on an average day, what input she needs that an average 20 yr old doesn’t.
God it’s depressing.
I get PIP for a hidden, although physical, disability. Mine fluctuates a lot.
I told them what my good days are like, the bad days, the intermediate days, & how often I get them. How I cope with each, what happens when I can't cope - who looks after me then, what the impact is on him & our DD. What workarounds I've developed to get around the problems I have as a result of my disability. If I've injured myself through accidents, if I go out socially, on my own or with DH. What extra costs we incur. What normal things I can't do. What triggers I've identified, what changes I've made to try to avoid them. How the medication affects me. Any additional factors (i.e. medical issues) which, on their own, may not constitute a disability but which add to the overall difficulties of life. Don't downplay anything. Don't let her take any medication to calm herself down - e.g. beta blockers - before the assessment (I know someone who did something similar & was turned down).
Write down her routine. Everything. Contingency plans, weekend activities, how she copes if the weather is bad, can she look after the car (arrange servicing etc) independently. Is she good at remembering medication, does she need a tablet box, an alarm to remind her to take it? How does she cope with public places, noise, crowds.
I'd expect to get very few points (if any) and having to appeal it based on experience.
Hard to say, it's SO based on mobility these days.
I had my assessment from my bed, where I was barely able to lift my head and I scored zero points despite not being able to move, dress, feed myself etc.
Tell her to describe everyday life as it has been on the worst occasion ever.
Don't do this. It's so easy to see through a liar, and most of us on the autistic spectrum make very bad ones.
All the other advice is good. She needs to give full answers and talk about bad days and good/ less bad.
Is the assessment at home OP? If so, you could record it in case you need to appeal. Have you submitted medical evidence?
The most important things to stress is the reliability criteria. These are if she can do things safely, to an acceptable standard, repeatedly and in a reasonable time. This lists how these work www.mypipassessment.co.uk/news/what-are-the-reliability-criteria-that-are-used-during-the-pip-assessment/
And this site is great for helping to prepare for the assessments www.pip-assessment.support/#main-menu
Good luck, but if she doesn't get it definitely appeal as, although they tend not to overturn at the initial mandatory reconsideration stage, there is a high success rate at appeal.
They base their report on how you are today, not on your worst day. So try and get her to answer as if it was a bad day. They won't ask 'can you climb stairs' for eg, they'd say 'so did you climb the stairs OK today?'. Be prepared for that.
They're observing you from the second you enter the building. They'll watch how she interacts with the receptionist, even stuff like saying hello to others or holding doors for people or climbing a step - not all relevant to your dd of course, just making you aware. They often drop a pen on purpose and if the person picks it up that's marked down, they might have someone bring a cuppa in the room to see how comfy they are with others etc.
if its not the decision you deserve, make sure you appeal it. The APs aren't made the same - I've heard of physiotherapists or paramedics being the AP with someone with MH issues. So it's not always someone who understands the problem who's the assessor. If you disagree, first you need to ask for a reconsideration. Then after that you would apply in writing to appeal
I don't want to scare you at all, I'm just trying to reassure you that if the decision is the wrong one you do not have to blindly accept that. Hope for the best but prepare for the worst kind of thing
Useful and good to know about appealing if necessary.
When you support someone/ care for someone it usual to focus on their assets and not their deficits. You need to focus on deficits and, like Someone upthread said, think of her on a bad day and present that version of DD/ help her present that version of herself. Where there is mobility/capability/capacity qualify limits and constraints. Good luck.
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