PIP assessment. Argh. Any positive stories?

Long story short - No I don't have any positive stories.

Plenty of negative though. Courts were involved. They are basically criminals.

Had my sons yesterday. It was terrible. My son gets so scared he doesn’t do them and never has. He is disabled too and has been since birth. Every three years they put us through hell. He’s scared about not getting his blue badge because of not getting PIP and in turn puts me under weeks of stress. He can’t cope with the “brown envelopes” through the post so I have to have them addressed to me so he doesn’t see them.

They asked me what kind of house I had, I said what do you mean, detached? She said yes. How is that relevant? She asked who diagnosed him with autism. I said Dr V who’s from CAMHS and the leading physiologist in the country. The government has years and years of all this information. Hospital letters and diagnoses but still I feel under scrutiny as if I’m making it all up. 

i got off the phone to my son saying that his life is over and he can’t go back to his job (that he works at from his bedroom) and it’s ruined his day and his weekend. He told the women that and i asked him to tell her what would happen to me whilst we wait, he told her that he wouldn’t be able to cope and I could only keep talk to me. Being autistic he will worry and worry and of course will have to talk to me over and over again. I got off the phone and cried. I knew my life would be terrible for weeks now while we wait. My son can’t help but put on me now. They don’t understand this. I tried to tell her but she just said that she understands that. But of course she has no idea what it’s like for the carer of an autistic and disabled person. 

Why if someone has been under the children’s mental health team, couldn’t access mainstream school, went to the Priory Lodge school, had to have support carers, had a PA, went to the transition Mental health team and adult mental health team, was under the fracture unit for all of this childhood, is on morphine, progabaline, anti depressants, ibuprofen and co-codamol and goes to the pain clinic, should be made to feel like rubbish every three years. Why should they have to have a phone call from someone who has no understanding, only to pass that information onto someone else who just looks at it and make a “decision”. The system is broken. 

She asked whether he had taken time off work. I said yes. She said when. I said last year. She want specifics. I couldn’t give her dates. I said she has access to his medical information, she said that they don’t. Why not? If they looked at that they would see how much time he’s had off and how many times I’ve gone to the doctor not coping. I told her that he had been told by his work that if he takes and more time off work he will be “shown the door”. He’s taken that literally so even if he has a bad day he has to work. 

There is so much for people with disabilities have to cope with during their lives but cannot express it enough so someone like this lady so they can truly understand it.

Many of the questions felt like I was being lured into a trap. It was awful .  

I have been his carer for years and even had to get my MP involved when the schools said they could teach him as he was too anxious and would sit under the table. I was told when he was 5 that he will eventually end up in a wheelchair. He’s on crutches the majority of the time and when shopping or trips out he has to go into a wheelchair but it was like she didn’t believe it. There are times he doesn’t use crutches but that’s because he’s had to have loads and loads of painkillers or have alcohol (he’s 25) in order to go out. 

She asked if he goes out. He explained that he does but only goes to places he knows or with people he knows. She asked where does he go. He said the gym. Well that was it! She was on his case making him feel like he can’t go out and try and do some exercise. It was the same with going out with friends, she made him feel like he wasn’t allowed a life. Now he doesn’t want to go out. His world is small enough already because people judge him and frown at him parking in a disabled bay because he looks like a good looking young man. People (elderly) have had a go at him for using lifts so it made him scared to go out, so he goes places he knows or with someone he knows. 

i could go on and on (sorry I’m angry and frustrated)

Someone like the BBC should pick up these stories as I’m sure thousands of genuine disabled people are being put through this every 3 years. The system is terrible and puts genuine disabled people through weeks of hell. 

As an autistic individual, who like many here receive the enhanced rate of PIP, I'm actually glad the government recognise that I'm not a hopeless case and that some of the things I struggle with now I may not in a few years. Especially as I'm working hard on coping strategies to ensue this is the case. For example,  my inability to cook as significantly reduced since I found out this was due to sensory overload/burnout. To overcome this I stopped working Weds as it meant I never had to go more than two days without being able to have a low sensory day.

If the forms are causing your daughter a lot of anxiety, esp around your death and lack of support, could you take the time now to train her on how to fill these in? There are a lot of supporting resources on the internet you could go through with her to train her on how to find the help she needs and what to do with it once she has the resources. I followed these and had no issues with my initial application or renewal.

Having filled in an PIP assessment on behalf of my Daughter  it became immediately clear to me that the assessment only caters for those with a visible physical disability and lends itself badly to assessing those with hidden mental impairments.

God knows what will come of it and god knows how my daughter will ever be able to complete these forms after I die, people with life long mental disablities which last from cradle to grave and which are non curable should never ever have to be reassessed every couple of years, their life quality will never change, so why reassess those whose abilities can never change or improve, all it does is cause anxiety, distress and worry to parents and their children.

She fears ending up on the streets once we die as she will have no one to help her comlete these assessments, what's really worrying is that she may be right!   It puts an awful burden of guilt on parents knowing that when they die they can no longer help or assist their disabled child, I feel so bad that i will one day abondon her as nature takes it's course.

I waited just over 12 months for my tribunal, although I got a cancellation, just before Christmas, so I may have waited  a little longer than that had I not taken the cancellation.  I’ve had loads of support post diagnosis and where I live there are several really good support groups for adults and lots to do, but I know that support is patchy across the country. I think it depends as well on what type of support you need. Do you know what support you want or need or what you think will be most helpful to you? Sometimes you have to think outside the box to get the help you need and you might find it in different places to where you first might think it will be. For help with the tribunal, I saw a DIAL office and had an idea they supported people with disabilities so I just walked into their office one day and asked them if they would help me and they said yes, they were great and prepared me very well for the tribunal. I think the average wait time for tribunals is currently around a year, maybe a little over. 

Hi.  How long did you have to wait for the tribunal ? The people who help me said I should expect it to take a year before the tribunal... There just seems to be very little / no support for adults with ASD.  I keep thinking it would be easier to go back to self medicating with drink and drugs and hopeful do myself in.

Mine was the opposite, they were really good with me and gave me the enhanced rate. I still had to recover etc but that’s just me, I have to recover from being round people I love, such as family, so that’s nothing new but they were really good with me and I was well prepared for it. DIAL prepared me really well for it so I knew what to expect. 

I have just had the pip tribunal 21st April 2019, it was brutal, they are totally insensitive to the needs of people with autism, I still feel traumatized by it and will do for a long time yet. They gave me the standard rate of pip which I am totally grateful for after reading things online. This doesn't excuse the total lack of understanding for people with autism, criminals are treated better!.

so sorry to hear about your situation.  Has it been resolved?  

I am currently trying to get PIP for my daughter and am at the Tribunal appeal stage.

Wishing you well with your brother and father xx

Mr Poo said:

I have been repeatedly turned down for PiP because it is mostly based on physical imparement and mental ability.  As Aspergers doesn't have a physical or mental imparement trait, then having such a diagnosis should not entitle anyone to PiP.

To get PiP, even with anxiety and depression comorbid with Aspergers, requires a physical disability... Without that physical disability component... it would take a severe exageration of your issues to be awarded PiP... I fell short simply because I told the truth about being physically able, and agreed that I am not mentally incapable of following instructions.  My anxiety, depression and Aspergers aren't sufficient in and of themselves to gain such an award.

Hi,

Sorry but I have to disagree with that.

If you truly don't share the same issues that often result from ASD, then count yourself fortunate.

I think as a result of my Asperger's I've always had agoraphobia. As a child & adult I've never wanted to go out. Having to go out fills me with dread. So much so that I no longer can at all. During my late teens & early 20s, while 'normal people' apparently enjoyed going out after work partying/entertaining, I was at home obsessively lining up my mineral & gemstone collection.

I can explain further:

1) I can't leave my flat & I have no skills to work from home.

2) I have no focus & fidget/zone out if having to think about work related activities. Which can result in actual blackouts where I've toasted my hand & impaled myself on broken glass.

3)I can't even get out of bed in the morning & always have felt this way since childhood.

I have been repeatedly turned down for PiP because it is mostly based on physical imparement and mental ability.  As Aspergers doesn't have a physical or mental imparement trait, then having such a diagnosis should not entitle anyone to PiP.

To get PiP, even with anxiety and depression comorbid with Aspergers, requires a physical disability... Without that physical disability component... it would take a severe exageration of your issues to be awarded PiP... I fell short simply because I told the truth about being physically able, and agreed that I am not mentally incapable of following instructions.  My anxiety, depression and Aspergers aren't sufficient in and of themselves to gain such an award.

I was awarded PIP early last month after applying in July.  I used a local service that was able to deal with all the filing and filling in the forms.  I was awarded PIP enhanced daily living and just missed out on standard mobility.  I did not actually have to attend an assesment and they also added the severe disability premium to my ESA. 

I'm still worried about my ESA, while I have had support group 9 years in a row due to my situation not changing, I always get incredibly worked up even months before I know the form is coming.  Never happy :D

I have to attend a PIP tribunal next Friday. I am under CAMHS, have a social worker and support worker (3 eligible needs under the care act but no budget, just support to try to get me out and about) I am having to represent myself as my social worker says I am articulate. He is only there to accompany me. I'm confused, as he has gained my trust and yes I can articulate myself. But talking about my most personal problems to a complete set of strangers will be very challenging.

I was awarded standard PIP for care but nothing for mobility as I am sometimes able to go to my G.P (they are one street away, I suffer severe anxiety and come straight home and feel exhausted)

Anyway, I will let you know how it goes. I nearly went for a paper based tribunal at the last minute but have been advised to go. I am awake all night as can only relax when the world is silent and am terrified.

Sir_Dood said:

Weird, gaining PIP for me was effortless (also having aspergers syndrome) the assesment was pretty succinct. What I am having issues with is getting ESA, mostly because of those who issue it are entirely incompetant, and because of their incompetancy and lack of help, i don't even know what I am entitled to.

Back on topic however, it sounds to me like you just got stuck with a royal *** hole in the interview, who has no idea how to talk to people with our condition - try issuing as complaint and trying again, is my advice.

Hi,

I hope you don't mind me asking but did you send any evidence in for your claim? Did you send a diagnosis letter? If so, was it a thorough assessment report?

And did you go to the face-to-face assessment?

It seems wrong to demand to see people, when they know it will cause lasting harm. My PIP claim was refused because they claimed I didn't have good reason not to attend. But if I had attended I'd have been unable to answer the questions. And would've been left in shock & in bed for months. I'd also have distressing incurable flashbacks of the assessment for the rest of my life.

Hi Emma,

So sorry that you are going through such a difficult time with your brother.  The following information about contacting the NAS Welfare Rights Service may be of use to you:

For advice and information about DLA or any other benefits please contact our Welfare Rights Service. They're available to offer you advice and information on what benefits you may be entitled to, general advice on completing claim forms, and what to do if you think a decision is wrong and appeal to a tribunal.

To use our Welfare Rights Service, you'll need to book a telephone appointment, which you can do by email: welfare.rights@nas.org.uk. Please include your age (or the age of the person in question), details of your benefits query, and tell us where in the UK you live. We aim to reply within 10 working days.

You could also book an appointment by calling our Autism Helpline 0808 800 4104 (Monday-Thursday 10am-4pm, Friday 9am-3pm) or by filling in our contact form: http://www.autism.org.uk/services/helplines/welfare-rights/contact.aspx

I hope that helps.  Take care.

Kerri-Mod

Hi Posting on behalf of my brother who has Depression , Anxiety and ASD he is on a list a of medications a consultant psychiatrist said they cant do anything for him no more and he will not be cured ever !  Now this morning the lovely people at the DWP sent a letter saying they are stopping his DLA and to ring up and apply for P.I.P. My elderly dad who is my brothers main carer rang them up the lady on the other end was RUDE / Ignorant and did not care she said " He will be assessed by one of our specialist doctors no matter what "  My brother is now locked in his room  crying and shaking he cannot face the forms or a assessment   .. My dad will not let him go through that or do not like seeing him so upset so only thing we can do is not fill the forms and let him lose his benefits my dad will lose his carer  allowance too !  Im so worried about my brother and his future as now he will have nothing x

Weird, gaining PIP for me was effortless (also having aspergers syndrome) the assesment was pretty succinct. What I am having issues with is getting ESA, mostly because of those who issue it are entirely incompetant, and because of their incompetancy and lack of help, i don't even know what I am entitled to.

Back on topic however, it sounds to me like you just got stuck with a royal *** hole in the interview, who has no idea how to talk to people with our condition - try issuing as complaint and trying again, is my advice.

To Jam-One-Love I presume, 

Being that your previous diagnosis has led to your current one, it would seem sensible that your benefit will be paid as per usual.

The fact that your explanations were interrupted during the assessment, and that you were unable to answer particular questions - gives seemingly clear examples of problems with social communication and imagination, and this will probably go well in your favour. This applied for me also as an Aspergian.

Keep in mind also, that PIP assessors have to ask alot of questions to ask, and the Aspergian way of communicating can be rather problematic for the unititiated - especially in terms of limited time frames. My assessor for instance got more and more impatient with me as the assessment went on; as much due to having other appointments to go to - and me not beiing able to give short or simple enough answers for the questions.

I trust you will have good returns from the assesment, or if not even better ones!