Advice on PIP awarding me too high a rate?

railway345

For a little context: I’m 16, autistic, likely have adhd (waiting for an assessment), I have CFS, chronic pain, hypermobility and I am currently attending a special needs school for 5 hours a week. I struggle with brain fog, memory issues and limited cognitive energy. I take prescription painkillers for my muscle and joint pain. I use a crutch about half the time I’m walking to help with knee stability and muscle weakness, and I use a wheelchair at out-of-routine outings that require much standing or walking. I can’t leave the house without one of my parents driving me, I can rarely make my own food, I need help with daily activities and I spend roughly half of each day lying down.

I was awarded DLA a year ago, but since turning 16 four months ago I’ve had to apply for PIP. When I had DLA, I was given the standard rate for mobility and the higher rate for daily living. I completed the PIP application with lots of help from my mum and had two deadline extensions for submitting it. My mum did lots of research into the points and system and we wrote each part of the application succinctly but with extreme detail. We made very clear the worst extents of my conditions but did not exaggerate. I then had a 20 minute phonecall asessment where my mum was present with me.

I received my PIP letter today, it says that I’ve been awarded the higher rate for both mobility and daily living. I was surprised but not overly so until I read the points they gave me for each section. These are all the discrepancies (skip to the last 2 paragraphs if you don’t want to read all the details):

"Eating and drinking - 2/10 points - you need an aid or appliance, or supervision from another person to be able to eat and drink, or you need assistance from another person to be able to cut up food."
• Untrue. I stated in the application form that eating and drinking is hard and tiring and half the time I need easy & fast to eat food, I do not need help from an aid or a person.

"Washing and bathing - 4/8 points - you need assistance from another person to wash your body between the shoulders and waist."
• I find showers exhausting, I have to go slow with my movements and I have to rest for half an hour afterwards, but I do not need assistance from another person. A shower chair is probably a good idea but I don’t use one currently.

"Managing your toilet needs - 2/8 points - you need an aid or appliance to manage you toilet needs or incontinence."
• I do not need an aid to go to the toilet. Occasionally I need to lean on a wall to get up or sit down but I do not use any aids.

"Dressing and undressing - 4/8 points - you need assistance from another person to dress or undress your upper body."
• I do not. Dressing and undressing is tiring and I sit down while dressing. I struggle a lot with regulating my temperature, my mum usually prompts me to shed/gain a layer when I haven’t realised I’m too hot/cold. I also struggle choosing what to wear when planning for my temperature needs and struggle wearing less clothes in hot weather because of body dysphoria.

"Mixing with other people - 4/8 points - you need support to engage with other people from someone who is trained or experienced in helping people to engage in social situations."
• exaggeration. I can confidently socialise with people most of the time, unaided. It does take significant emotional energy, I often have to mask and I wouldn't call it fun, especially with people I don’t know well, and I spend a lot of time scripting conversations in my head. I’m articulate, but struggle to start conversations when there’s not a pre-set topic so I usually don’t talk unless prompted or unless I’m with people I’m close to. Half the time, I avoid unfamiliar social situations because they take so much energy. But, I do not need the level of support this implies.

"Moving around - 12/12 points - you can stand and then move 1 metre but no more than 20 metres either aided or unaided."
• I can walk 200 metres at a time unaided, slowly and with pain and discomfort. According to my health app, I walk an average of 2.5km a day (includes walking between rooms at home, etc.). After about 10 minutes of standing in one place I need to sit or lie down because my legs get tired. I can move around for a couple of hours with someone pushing my wheelchair.

All of the above corrections were stated clearly in the PIP form, with a higher level of detail.

I was surprised and elated to even be awarded PIP, a few of my friends have been denied even though they definitely should qualify and I’ve heard lots of stories about how it’s run, and about the new changes being proposed in government currently. I was half expecting to have to go to tribunal for it or just be denied completely. Instead, they’ve given me way what seems like an unreasonable amount of points and a lot of what they’ve written is innacurate. I’ll research the points system and update later with how many I think would be accurate for my needs. All I can think is that the assessor rushed too much or just didn’t care to pay attention. What should I do? On one hand I’m terrified that if I contact them they’ll take it away completely or I’ll have to appeal and go to tribunal (would be traumatising). On the other, could I be charged a penalty for being given too high a benefit, or the information being innacurate, even though my application was honest and it’s the assessor who messed up?

One thing that did pop into mind is perhaps they've awarded these points for the other difficulties I face in these sections, but they've listed it as a different difficulty for some reason? I don't know how likely this is since I don't know much about the points system yet (I'm off to research that now). Thank you in advance for any help, I really appreciate it :)

Wade49

After reading your answers I would say the assessor got the decision absolutely right. For example, the section where you describe managing toilet needs. It's true that you don't use a prescribed aid to get up and down from the toilet. But the assessor would have noted that you lean against a wall occasionally to get up and down from the toilet and will have decided that you probably would benefit from having something like a toilet rail.

For the moving around descriptor, you have indicated that although you do walk more than 200m per day, every step causes you pain. If you look through the information about how the assessor awards points, it specifies that walking should be done consistently and without pain.

I have looked through all of your answers and am impressed by your honesty, but despite the fact you can complete most of the facts it's evident that you would benefit from help in many of the areas, even though you don't receive that help. I think your honesty would also have impressed the assessor. According to the criteria by which pip is awarded I'd say you've been given the correct award.

Wade49

I'd confidently assure you that you have no need to worry.

Wade49

Wade49

The citizens advice bureau have an excellent guide which explains how and why points are awarded for each descriptor. It's true that the questions are vague and confusing, but the decision is often reached because the assessor has been satisfied that you could benefit from a greater level of support than you currently avail of or which is available to you.

Kimi87

I had the same issue with my PIP award, before reluctantly concluding the assessor was correct.

For PIP if you cannot do an activity reliably, repeatedly, safely and in a reasonable time frame, for more than 51% of the time, you are treated as unable to do the activity at all.

railway345

Thank you both very much for your input. That’s not something I’d even thought of to be honest. I’ve been so focused on trying to convince them my difficulties are valid that I wouldn’t have ever expected them to treat it like that.
I think the reasoning for the points per section threw me off, I didn’t know that there were set statements for the assessor to put in there until researching the points system just now. Thank you very much!!!

anisty

I had a similar experience to you when my son transferred from DLA to pip 5 years ago. With no problem at all, he got double enhanced.

I got the assessor's report as he definitely did not have distress when travelling in familiar areas for mobility and i had written on the form that he could take a bus independently.

The assessor had written that he only can take one bus route and wouldn't know what to do if the bus broke down (i had not mentioned anything about bus break downs)

I had written he had no difficulty getting dressed.

They awarded there saying my claim that he managed this did not fit with "the evidence" and he will have problems selecting appropriate clothes.

This is in fact true as he wears the same things day in, day out.

My son's is up for renewal this year and i'm going to try to get the enhanced mobility taken off, but keep standard which is right for my son.

He still only does the one bus route but he doesn't need to do any other, and as he has done it a few times every week for 8 years, he is really capable at it. He's never expanded his routes either on the bus or by foot but he doesn't need to. He can get to where he needs to get to. If he had to learn more routes, he could.

I think my son used to be low rate mobility, middle rate care DLA. He has autism plus learning disability. No physical disability at all.

It does give you a bit of a shock when you prepare for battle with pip - and then they award it no problem!

Well done on your award!