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 :)
