Published on 12, July, 2020
After 4 months of waiting for my paper-based assessment of my DLA to PIP claim to be completed, I received word of a reduction of entitlement for daily living and no mobility. This means I am not longer entitled to certain services.I have ASD, long-standing depression, severe chronic anxiety. All of my difficulties have been lifelong or I have suffered for most of my life. I have no friends due to social difficulties relating to understanding, anxiety and communication.I scored 2 points for mixing with people (prompting) but it is absurd to judge mere prompting is all I need. My therapist was even clear to the assessor that making me sit through a face to face assessment would be unhelpful due to the level of anxiety I suffer from. I still can’t even see my therapist without extreme anxiety. I also scored 0 for communication despite my difficulties in communicating my needs, thoughts and emotions relating to ASD and mutism. I only scored 4 points for mobility despite having limited ability to leave the house or parents car. I can lose awareness of my surroundings while outdoors too.It would seem the assessors have limited understanding of Autism. My therapist had to explain what it meant. I am not sure why they feel confident and qualified enough to agree on my needs without putting more weight on evidence I sent. I also scored no points for managing medication despite being a recognised self-harm risk.I sent my Autism diagnostic report which clarifies communication is part of the diagnosis. I wrote in detail how my condition effects me and provided other written reports. They didn’t seem to put much weight in any of it. Other than depression, I didn’t score much for my more complex needs.Due to a fear of being misunderstood, my answers were quite lengthy and I tried to give examples but it didn’t seem to help.I am exhausted with the whole process and I feel little hope that I can challenge the decision properly. I have limited support due to my difficulties engaging with others, so I don’t have any backup from the mental health team.
Unfortunately that's life.
Help goes to those who are most competent at understanding the system. (Playing the system ).
Not to those who need it most.
The problem with ESA and Pip is that being successful is more dependant on how well you ,or someone else can put over your case,rather than the level of disability and how it affects you.
Thus those with lesser disabilities who can plan their claims like military campaigns can do better out of the system than those with greater disabilities who can't.
I’m the same
first time applying and scored zero on everything. Asked for reconsideration and same.
They even stated not question severity of you disability but if it scores on our criteria.
Not appealing going to apply again in a few months when I get my head round it.
I’ve also started taking meds for my anixity and depression
My pip was almost exactly the same. I was given standard without mobility .. I tried the mandatory reconsideration but no change. I couldn’t face the wait for the next stage or face a tribunal so have dropped it.
I know how you feel NAS35635 because that’s how I feel but any small step I make is a source of strength to me. I keep telling myself, if I don’t push myself forward now, through the fear, what’s it going to be like in another 6 months. I started taking medication yesterday. I didn’t want to and I’m terrified of taking it but I think I’m more terrified of what the future might hold if I don’t. The way I’m telling myself, is that if I can somehow get back on my feet and get a daily routine going with all the things I need, such as eating and exercising regularly etc then I can come off the meds. It’s very lonely and isolating but if we don’t speak out, nobody will help us and the more we speak out, the easier we make it for others. And truly, every little step I take, gives me strength amongst all the fear and anxiety so although contacting CAB or someone else might be feel like a huge mountain to climb, you will be rewarded with a sense of strength which will help you with the next step. I think it is a harsh world, we only have to look at how people treat each other but we will find our place, don’t give up on that.
Thank you - I will have a look!
Thank you for the support. I am sorry they denied your claim but it is good to hear you are claiming again with support.
I agree that ASD is hard to understand or make sense of! I really struggled to make sense of it and why I can't manage life like other people. It is lonely.
I feel the same - a child alone in a big scary harsh world. I just can't cope with the world and the demands of life, and people don't seem to understand this.
I'll see how I could get advice from CAB but seeing anyone just seems to be really difficult. I am paralysed with anxiety right now. I am scared for my future.
I have a long documented history of social difficulties but I was awarded points for areas that I had less proof of that were consistant with depression. It is as though they don't even know enough about ASD to make that call with those symptoms.
The vast majority of people are not dishonest but it is a shame they treat us all as though we are.
I've posted this before but if you do facebook there is a group - A1 ESA/UC/DLA/PIP Benefit Help and Support UK ONLY - which is useful. they also have a website - a1help.wixsite.com/benefits
Unfortunately it seems like the only way to get this is through the help of an advocacy service or as Robert suggested, the citizens advice.bureau. They seem to know how to write these reports. Most people I have heard from seem to get the award after the appeal. It’s crazy to have to go through this and there is a lack of knowledge of how autism affects us but if we give in, they’re never going to know. I didn’t appeal but I’m applying again, with the support of a disability group, active independence. I don’t understand it, they made the rules and said that they would help disabled people but then it seems like one long hard fight. I don’t know why they don’t listen and why they can’t see that we struggle. It’s so hard. I feel like a child, all alone in a big scary harsh world that I don’t understand and the reasons I’m re-applying is because I need that help. Please get in touch with someone, no matter how hard it is. Can your therapist help you with this? I don’t even understand autism and I’m autistic. It doesn’t make sense to my brain but I know I wouldn’t be in the situation I’m in if I could just get on with life. Can you email the NAS and ask for advice/support? Don’t give in. I know it’s hard. It’s exhausting and soul destroying but you do matter, you’re a person, I hope you get some help with this.
You need help from a citizens advice bureau to appeal.
And on every point you need examples and independent proof of what difficulties you claim to have.
There are dishonest people out there and they probably think you're just making things up.