Hey everyone, this was orginally written on my older blog on 04/03/2019.
Before I go any further I should say the PIP stands for Personal Independence Payment. This is a benefit that helps people with any form of additional needs to be independent. And now prepare for an onslaught of stupid decisions and pointless reasoning.
So, PIP has been a bit of a pain. There were some things I have spoken of; like the 30 minute ‘interview’ when it took 3 days for me to get diagnosed with autism. Also, the questions or should I say the answers to those questions are just silly.
Example: how far can you walk taking into account any aids you use? A) less than 20 meters B) between 20 and 50 meters C) between 50 and 200 meters D) 200 meters or more E) it varies.
So, they haven’t said where you are walking to. They haven’t given any issue of how hard walking could be. They haven’t even said where you are walking. For most people, it doesn’t matter, but for a lot of autistics where we walk is part of our environment. If it has cars, then we know it to be a hazardous or dangerous environment. If it is a lovely green field as far as the eye could see, then that is going to be different. Especially if that road is just outside your door.
Let’s take another ‘Do you find it difficult to mix with other people because of severe anxiety or distress?’ A) Yes B) No C) Sometimes
If you read a lot of these blogs, then you will know that I can’t tell most emotions. So, when they put things like severe anxiety I get stumped. I have to be taught that it’s a negative emotion, then there is distress… ah yes, the vaguest of emotions because it varies person to person. Someone might like jumping into fires but most really wouldn’t. Most of the time I have therapy sessions they were about people. So, mixing with people do I find it hard… I’m guessing yes. For some their autism doesn’t affect them in this way it’s in processing what people are saying. So, they may jump in and then go off guesswork.
These questions are not made for neurodevelopmental disorders/conditions such as autism and ADHD. They don’t measure independent its more how well are things. I am quite independent; I train in the gym and on the water, I go to town, I volunteer for a few things and do my degree. On paper, I look ‘normal’. If you look closer; I train in the gym and on the water by myself, I go to town to get a specific thing and then I am straight out, I volunteer for a few things to push my boundaries and I am doing my degree because school didn’t help me because they thought I was hard to teach. So, these surface questions aren’t needed in this day and age where we can scan people to make 3D images or can video call people over a wave connected to a networking source, that’s internet video calling if you were confused. If you have to do things this way, then why not ask straight forward questions. Let’s try the ones I used.
how far can you walk with any aids you use near a busy road? A) less than 20 meters B) between 20 and 50 meters C) between 50 and 200 meters D) 200 meters or more E) it varies.
What happens after the implied distance?…………….
How far can you walk with any aids you use on a public walk path away from any motorised vehicles? A) less than 20 meters B) between 20 and 50 meters C) between 50 and 200 meters D) 200 meters or more E) it varies.
What happens after the implied distance?…………….
How hard is this? Let’s try the other one next.
Do you find it difficult to mix with other people? A) Yes B) No C) Sometimes
If No or Sometimes, why do you find it difficult to mix with other people? ……….
This way you could help the interviewer knows where to look rather than prodding in places where we don’t have any issues.
Now we come to the PIP timeframe and order. You have a month to fill in a 40 page booklet filled with yes/no questions. Plus, you have to send it with evidence to back your claim. These can be medical reports, care plans and letters like assessments. These can’t be appointment letters. So, if you have a mental health issue its going to be hard to find information because not everyone is given a care plan, medical reports or assessment letters. So, it’s something to remember the whole time. If you have hearing aids you can’t use the review sheet because that isn’t proper evidence to them, but it is what you are given which your hearing aids. Also, all the evidence as to be in English, so if you read in Makaton signs you can’t use them. So there goes their care plan. When it gets to things like this, it’s bad.
When you have gone through the drama that is all of that then you have to wait for anywhere between 3- 8 months to get an interview date. That’s not to go to the interview that just to get a date. The date is usually a month after, so change the 3-8 months to 4-9 months to get an interview. Then they talk about what you put in your PIP form and test you from the moment they say hello. My appointment was late, not by a little bit like 1-3 minutes, by just under 10 minutes. So, I start ticking, from that ticking I bruised my intercostal muscles (the muscles around your ribs) on my left side. These muscles help you breathe and stops the bones from being broken. The person who saw me was a nurse, but most of the time it is a health assistant of some kind. These types of injury are common to me, this won’t go on their report. So, something that actually harms the person WILL NOT go on the full report. Nor will, walking into the road, meltdown related to self-harm or just meltdowns/shutdowns. All of these are what makes autism so hard to understand or to control day to day. I have the extra of issues of living in multiple realities; which I got given an odd stare because they couldn’t understand it. I know this is uncommon, but the next question really shouldn’t have been are you on any drugs? This is just stupid. I have stronger words, but this is meant to be child friendly. Also, I should stress that the interview room is usually free of any distractions, so you have two ways out to function you either talk or you shutdown and become a turtle and say nothing and either way they can say that you have shown that you are ‘well’ enough or you haven’t co-operated and won’t get anything from this. If you sign, you will need an interpreter because they will not talk to you through BSL (British Sign Language) or Makaton. I know this one from experience as one of my parents had to translate, but they decided to wait until I could talk because I went mute. If you need to lip read have someone else with you. As they will not listen or even attempt to understand you if you sign.
The appeal procedure is abominable. You have to send any new evidence in via post, you can’t email or deliver by hand. It has to be through the post. The Royal mail are extremely good at not losing things. If you want to you have something like 28 days to appeal, via phone or textphone, so if you are anxious about talking to a stranger over a phone prepare to do it again.
I am now going to run through what you need other than evidence for PIP. For PIP you need: to have a national insurance number, this is okay if you have one, everyone in the UK gets one but no they are on one bit of paper so if you have lost it the process is going to be even longer. It helps if you have photo ID because otherwise for the interview you need to bring 3 pieces of ID, that’s all I had as I can’t drive and you need money for a passport and that’s what my PIP was hopefully going towards. So, this seems really silly. Finally, you need to bring all of your aids if you had any. So, if they are small or can get lost easily I would say get a bag to put them all in.
So overall the PIP isn’t about helping to be independent it is about helping those who fit into the label disabled. People who are autistics are still seen by this as normal and fully independent. Really!? If someone could please explain who is scared of people is being independent. Tell me how everyone but you can cross roads is independent. In my view, most autistics are independently separated just so no one can help us. There is a hidden taboo with being autistic because we look ‘normal’, but we act differently to what people think so they choose not to help in case they do something wrong. I have been taught to speak out if I think something is wrong. I am one in a few. I don’t have to, but I choose to, and I do it for people like me with Asperger’s but also non-verbal autism because I haven’t seen much for them. It seems a shame that over the nearly 70 years autism has been looked at and explored we haven’t adjusted or even seen autism as any handicap now the times are changing, and people are being more vocal the reasonable adjustments have gone out the window as people are not seeing autism as nothing more than an excuse. PIP proves this in the extreme points because through all the issues I got I scored 0. I have done it with an independent person and I got 60. So how did they miss that much!? This isn’t just happening to some, but to the majority. This is the real joke within the first pages they talk about equality and diversity, but they can’t even cater for this from the application process.
Thank you for reading. I hope this has been helpful. I won’t leave any link because I think if you have read this far you need a nice break.