On Tuesday, I went to an assessment centre for my PIP assessment (Personal Independent Payment). Some of you who have been following me for quite now will know I have Cerebral Palsy and Anxiety.
Cerebral Palsy is a neurological condition that does NOT change but the symptoms can worsen as I age. It also increases my chances of developing other age-related disabilities such as arthritis, hearing loss, loss of vision and more.
Disability Living Allowance
Way back in 2013, when President Trump was just a joke made on The Simpsons and no one had heard of Teresa May, the UK had a disability benefit known as DLA (Disabled Living Allowance). Back then, if your condition never changed and you were getting the highest care and mobility components, you would receive a lifetime award.
This meant they didn't assess the claimant because there was no point. The condition didn't change, so they were still dependent on others and adaptations. They understood that you would forever be disabled so you were awarded enhanced on both with no question.
Now, with David Cameron and Teresa May in government, that has changed. Drastically. There is no such thing as lifetime award anymore. Regardless of your condition, you MUST go through these PIP assessments with a maximum of 3-year regularity, even if you receive the highest award and have a condition that will never approve.
I feel sorry for anyone with MS who has to prove time and time again they haven't been cured by some guardian faery.
The PIP Assessment
So, Tuesday. I drove to the PIP assessment centre, which is a 13-minute walk from my house according to the document they sent me. I went into the little assessment room, which looks like a GP surgery. And....
My brain froze. I forgot everything. C speak. I couldn't answer the questions. My dad had to answer on my behalf and even though she could see I was struggling to form my words, to say coherent sentences - she told my dad to let me answer. My dad only responded when he could see I was struggling.
I mean this is how the discussion went when she asked about my car.
PIP Assessor: Is it automatic?
Me: Yes.
Dad: It's adapted.
Assessor: What adaptations
Me: erm, theres a erm, stick on the *moves hand to mime steering wheel*
Dad: *starts to help because I forgot the word steering wheel*
Assessor: *Looks at me, closing her eyes for what seems a long period of time* Can you answer?!
I needed my dad there or I wouldn't have been able to answer the questions. Most of this was because she would interrupt me mid-question with another question.
Rephrased questions
The questions are designed to put you on the spot. They are not trying to find out what you can and cannot do. On the contrary, they try and trip you up or downplay your disability. If something doesn't happen more than once in a day then you must not be disabled right?
I told the PIP Assessor several times I use convenience foods, I cannot use fresh ingredients, and still, I was asked:
Assessor: Can you cook using fresh ingredients?
Me: No
Assessor: Why?
Me: I have the use of one hand.
Assessor: Can you use your right hand at all?
Me: Not in a useful way.
Assessor: What do you mean by that?
Me: I can do my exercises. Get her to pick up a few things but if I cook using my hand I may not know if I burned myself, cut myself because I can't feel anything.
Assessor: Why?
Me:... I ... I just can't....
It'll be like asking why someone has blue eyes or black hair. Why their nose is a certain shape. I just am disabled. I just cannot feel. Don't know why I can't feel.
Put a number on it
They want specific numbers as well.
- How many times does your pain flare-up?
- How long can you walk without needing to rest?
- Do you walk with aids?
- How many times do you have to wear your splint and how long for?
- How often is often?
I'd love to ask how many times do you look in the mirror a day and find your eyes are still the same? You don't know? Not a viable answer... try again. It varies? Not a viable answer... try again. It's the same, in my opinion, to what she was trying to get me to do.
I understand these questions for people who are not on the highest award, whose condition can change for the better or the worse. But, I had this disability all my life. I have gotten used to the pain that I don't actually notice it is there most of the time, just like someone gets used to the idea that their eyes are a certain colour.
It's hard to measure something you experience on a daily basis when you don't have anything to compare it to. When you don't know any different. When you don't know what is 'normal' by their standards.
The so-called test
They "tested" my mobility by getting me to put my hands beside my head, behind my back and touch my toes... Gross motor skills. I was also asked to stand and balance on each foot, which I almost fell over. Dad caught me.
But she did not test my fine motor skills. My mobility with my hand, the flexibility of my fingers. The stuff that ... you know... is an effect of my disability. Cerebral Palsy mostly affects Fine Motor skills and balance.
In addition to this, I was asked how well I can walk on a flat surface. FLAT. "Like you find at home."
Most of the planet has dips, rises, bumps, different texture, weather conditions. But none of that came up. Is the government attempting to keep me housebound? Do they want me to not be able to leave the house?
We will NOT get to that later...
Each time I tried to tell her EXACTLY how something affected me: E.g Anxiety affecting my social life... I was told: "We will get to how it affects you later."
We never did.
The whole PIP assessment scared me. I left the place shaking, feeling sick and on the edge of an anxiety attack - which I had further down the road. What's worse... IF they accept I am disabled enough, they will put me through this torture again. It could be in 6 months, in 12 months or it could be a maximum of 3 years.
I don't want to go through that again. And people with lifetime conditions that do not improve should not have to go through this again. It's horrid. It's torture and it's humane. It is like being strapped in a medieval chair and you have to say what they want or you'll not get out.
To keep my car, I would have to be assessed a minimum of every 3 years but 3 years is now the maximum you can be assessed. I'm terrified. Terrified for my car, for my independence, for me to actually go out, find a job and have a life.
I now I have to wait 8 weeks. I'll keep you informed.
I hope you enjoyed this post. Well enjoy is the wrong word... really it is. But if you want to read some other PIP posts there are plenty on here: Pip Preparation and Applying to PIP just to name a few. And please do follow me on here, Facebook or Twitter.
Edit: With the help of human rights, the maximum 3 years has turned into a maximum of 10 with "soft review", whatever that is.
~Shannon~