Bearing Disability: PIP — Good News! You’re Cured!

I know this is not normally the day or time that I post but I need to write this. I just got my PIP Decision. By the sarcasm in this post title, you probably already know what that decision is, but I need to write this.

There have been two times in my life that have made me ashamed to be British…

• Brexit
• PIP Disability Benefit cuts

That shame has come back today.

What is PIP?

For those of you who do not know, PIP (Personal Independent Plan) is a benefit given to people with disabilities in the UK. It has replaced the previous benefit, DLA (Disability Living Allowance) since, I think, 2014.

The government claim that it is to make sure that those who are disabled and need help are able to have the help they need. But that is simply not the case. Since the replacement, many people with all kinds of disabilities with all kinds of levels of severity have had their benefits stopped after having an assessment. Whatsmore, the majority of these people were on lifetime awards when they were on the DLA benefit.

If the assessments were accurate, the tribunal would not overturn 69% of them. Something is wrong, somewhere.

Personal Independence Payment (PIP) assessments have been branded a “total failure” as 69% of people appealing them at a tribunal now win their case. –  Dan Bloom – The Mirror,  March 2018

I got my PIP decision today, and it is not good news. I’ve been stripped. Received no award at all. Not a penny.

My disability

Most of you know this, but for those of you who don’t, I have congenital Cerebral Palsy on my right side. It is something I was born with and something that will not go away. It causes me to have a few spasms and shivers, (spasticity) as well as prevent the nerves and muscles in my right side from working as efficiently as ‘they should’.

My right-hand struggles to grasp and hold things. I can sit there for 5 minutes trying to grab a spoon, a peg, a wooden block. In fact, I have an old video of me struggling with just that… I may make a new one.

My right leg stumbles on nothing. Literally, it stumbles on air (or at least that’s what it feels like as I am heading to the ground and fighting for my balance). Sometimes, my ankle collapses inward, without warning.

A few weeks ago, I went to the bank and this middle-aged woman caught me as I tripped all of a sudden, glasses flinging from my face. Thank you to the middle-aged woman.

I can also not feel impact, such as heat or from an injury, despite being able to feel muscular pain. This can put me in dangerous situations (say an electronic hob is left on as I forgot to turn it off – or I’ve broken a bone and gone a week without knowing – that has happened).

Essentially, my right side is as effective as an infant trying to learn to balance after only walking for two or three days. This is why the PIP decision on my case is ridiculous.

Speech Impediment —caused by CP

My cerebral palsy has also affected the way in which I speak. I have a speech impediment which prevents me from saying my own name. Literally. Some of the repeated names that have come back to me are so bizarre that I rarely introduce myself to someone if I meet them face to face and pray someone will introduce me.

I once had a substitute teacher who spelt my name something along the lines of Shabnobanan on the board before crossing it off when the class shouted at him.

Yet, my assessor said that I had no impediment and that has affected the PIP decision.

Assessor has lied on the PIP Decision report

My report has come back with the assessor’s comments being false to my needs. She has lied, giving the opposite answers on the report to the ones I have actually said. The words and typos also make it hard to read and is very misleading.

Formal and Informal Assessment

The PIP assessment is split into two sections. One you know about because you are participating in it. This is the formal assessment. And one that you are not aware of because it is purely observational.

I understand why the observational assessment. To catch people who are committing fraud… but, what if you are having a good day?

On some days, I can barely walk 3 minutes unsupported. On good days, I can walk maybe 20 minutes… but that is on really really good days.

Formal assessment

The assessor reported that I was not anxious and could communicate well despite the fact that my thought processes literally broke down and I resulted to miming to answer some of the questions. At one point, she told me to relax and breath…

So someone is emotionally stable if you ask them to relax and breath?

She also asked me to repeat my answers a lot which suggests that she did not understand what I was saying.

The assessor says my grip is good. This is because she got me to squeeze the fingers of her hands for 10 seconds, which are thick and stubby compared to the handle on a knife or fork. Often I pick things up and drop them without realising, regardless of thickness.

Her fingers are attached to limbs that are able to fight gravity and able to hold their current position without assistance from me.

Informal assessment

The assessor said I was seen walking 30 metres at a normal pace, unaided after the assessment. Dad was holding my hand all the time. I was in pain, my leg was playing up that day and for what I was soon to learn, would be playing up and in pain for about 3-4 weeks. The pain is still here a little bit but it looks like it’s about to subside.

Anyway, I wasn’t walking fast but I did just want to get out of there. I was about to have an anxiety attack.

The problem I have with the informal assessment is that it lasts around 30 seconds to a minute, maybe a bit longer. In that time, they think they’ve observed what they needed to.

Stairs and uneven surfaces are not an issue if you’re disabled…

They stated that they will not award me motability because difficulty with stairs and uneven surfaces is not one of the items in the tickbox system. Despite that everywhere you go is bound to be uneven, is bound to have stairs. For the academic year, 2017-2018, I lived at the bottom of my university. The building on a hill that is a 2-minute walk for the average person, 5 for me if I did walk up.

However, most days I could not walk up. I tried. And tried. And tried. I got as far as the sports hall, which is less than a quarter of the way up before I either turned around and got my car or hopped on the bus outside the sports hall. A ride that would last 10 seconds.

I struggled to do that! But on an even surface, I can walk around 8 minutes at a time with my orthotic sock before I have to rest for half an hour. This, according to the assessor, is acceptable. This, is fine, even if it means that my food will defrost in that 30minutes before I can carry on.

And you really don’t need to go shopping.

I explained that I am unable to shop:

• without my car
• in massive quantities

This is because I cannot carry a heavy bag. To me, a bag that is heavy is one that has a 2-pint bottle of milk, a loaf of bread and perhaps a bag of chips (fries for the Americans here)

There are many other things on this report that are complete and utter lies and I wish now that I had recorded the assessment but they make it difficult for you to do so. Having to burn it on a disc before you leave in a world where disc drives have disappeared.

Appealing

Dad and I are going to appeal the PIP decision and I know we are going to win. I have asked people who know me on a professional basis to submit their observations of how I cope to get this turned over.

What I suggest everyone to do is record your assessment, no matter how difficult it is, record it. Record every second from the moment you enter the building until you are out of site, because they will also do an “informal assessment”.

We are not giving up. We’re going to write to the MP and to the press. We will fight this with all the muscle in my body and we will win.  They picked the most stubborn person to give an unfair assessment and outcome to, and they will know it when the storm is riding on top of them.

Wish me luck.

On the other hand…

The Motability Scheme

Motability are absolute stars. They are a non-profit organisation that are fighting against PIP. They have added 8 weeks support, where they will fund my car for 8 weeks from the 24th July in the hope that my mandatory reconsideration is overturned. Yay for Motability.

I hope you enjoyed this post. If you have, why not read some other posts. There are plenty on here: PIP Interrogation and Plastic Straws, just to name a few. And please do follow me on here, Facebook or Twitter.

Next post is still tomorrow.

~Shannon~