Good evening all.
I am writing on behalf of my husband who was diagnosed with Asperger's around 17 years ago, at the age of 15. He is now 32 and of course still very much has difficulties. I have previously worked with Autistic young adults but am now a paramedic, so although I am a medical professional I am absolutely not a psychiatrist or even remotely qualified to discuss any diagnosis on the spectrum. My husband has been in receipt of DLA lifetime award (lower rate care and mobility) for many many years now, and as most of you are aware this is changing to PIP. He currently still gets DLA until this switchover happens. I guess the real question here is could he be eligible for the enhanced mobility as well as enhanced care? When looking through he descriptors and point scoring system we feel he qualifies for 26 points daily living care and then 12 points in the mobility section. He is able bodied (physically) but psychologically not, especially where planning and completing journeys, and communication difficulties that cause him absolute psychological distress if and when he's put in that position. If I'm with him he's fine to go places, but if not then he won't go out as I work long 12.5 hour shifts. He's probably he smartest and intelligent person that I know, but going outdoors without me is a huge no no for him.
Does anyone else have experience with PIP enhanced care and mobility and Asperger's? I'm trying to weigh up whether it's worth trying to fight and whether we stand a good enough chance as i want to keep the suffering of mental health to a bare minimum for him, as his anxiety will peak just like it did with the ESA support group tribunal, but we thankfully won that.
Sorry for the essay I have written and I hope you all have a pleasant evening.
I’m all too familiar with what you are saying. At one time I also had an horrendous experience at an ESA tribunal which is certainly impacting on my decision as to whether to appeal about a pip decision. I am extremely thankful to be on the standard rate but think it should be the enhanced rate. The “ reasons “ given for not getting the extra points don’t seem reasonable to me. Does your husband drive? Apparently if you pass your test and can drive that means you can plan a journey and follow it by yourself regardless of why else you may not be able to. As has been said on other threads please please get help to fill in forms with citizens advice bureau, welfare rights and use the Benefits and Work website to help give detailed responses. They won’t just take your word for things and don’t seem to read reports , they are looking for “ evidence “ but not really sure what that entails.. Gp, OT etc? Also having Aspergers isn’t a reason you have to explain why it makes things more difficult even then in my case they have ignored what I said. Do try to get support as you fill in the forms , I think this is crucial.
I absolutely second what Misfit61 says ~ please get support with it. I failed my ESA and PIP and couldn’t get it together to appeal. However, out of desperation, I called a benefits/advocacy support group, and they said they’re going to get me back on ESA and get PIP sorted out for me. I really need that financial support and the safety and reassurance it will give me. This will enable me to start moving towards work, and without it, I can’t do that.
Personally, even though the thought of it and the process is stressful for me, now I know I’m being supported, I feel passionate about going for it because I need it, I can’t see a way out of this hole without it.
It seems harder than ever now to get the correct level of benefits, but with the right support it’s possible. We were discussing this at my autism group today and one woman said she heard that if you win an appeal/tribunal, for PIP, you get the benefit for life, they don’t put you through the ordeal again.
Thank you so much for your replies. I am ever so grateful. I won the appeal for him, because of my experience in working with young adults and children with Autism. Although there was a GP at the hearing, we all know GPs are aware of mental health but a lot do not have the capacity to understand the spectrum as a whole. That was our advantage. I'm also aware they use paramedics and OT's to conduct such assesments and as a medical professional myself, I completely disagree with this as many others in the profession do also. I hope you both get the outcome you deserve! Also Misfit61 my husband does not drive, nor have a license. Will this go in his favour? I drive, but obviously I'm not the claimant. He had a free bus pass from the council but hasn't used it for several months due to his anxiety being so bad. He won't go anywhere unless we go as a family. I don't blame him I mean, I too have suffered with anxiety so can only imagine how it feels for him.
Would it be worth doing an update on a change of circumstance with his current DLA claim? To make them aware that he's deteriorated and far worse than when his claim was initially set up.
Thank you for the advice though, I have taken it onboard.
I generally hope you both get the outcome you want xx
I echo what others say about providing evidence. I am newly diagnosed with autism but have been awarded enhanced rate PIP twice (initial application and renewal) after the f2f assessment. At the time my labels were BP and BPD. I backed up almost everything I said with independent evidence and referenced what evidence I was providing when answering each question. I included A2W reports, OH reports, fit notes, a letter from my employer, a copy of my medical notes etc. Good luck
I think being unable to drive will probably be in your husbands favour in this instance. Your expertise will be really helpful.. knowing the professional side of things and the system..
I failed my ATOS assessment and mandatory reconsideration and then went to appeal, which I won. I have ASD and severe clinical depression, which I have had all my life. I was on low level DLA care and mobility components for a number of years and this was stopped earlier this year. I was then refused PIP.
The ATOS test was one of the most humiliating ordeals I have ever had to endure. It was conducted by a paramedic whose questions were purely based on physical abilities. e.g. 'Can you hold both arms in the air and keep them there?' 'Can you go to the toilet by yourself?' and 'Can you wash yourself?' When I tried to explain that my depression prevents me from even getting out of bed, his reply was: 'Well, you can if you really wanted to. It's just laziness, isn't it?' My sister, who accompanied me to this sham of an assessment, hit the roof! She made a formal complaint afterwards and said she couldn't believe how ATOS treats people. Sadly it's an all too familiar story all around the country.
Anyway, we lodged an appeal........ and we won! I am getting the standard rate in daily living and mobility for 3 years. Why only 3 years I don't know - both my conditions are life-long, but it's a start. This is a victory for me and I'm over the moon, but angry too that the DWP placed me in this position in the first place. I want to say to all out there going through a similar situation: PLEASE DON'T GIVE UP. Get help and support in order to fight what you are entitled to. The Citizens Advice Bureau can help you, plus there are lots of other groups around that can help. Go for it, never, ever give up.
WoW ~ you can get out of bed if you want to, it's just laziness isn't it - I'm speechless!!!! I'm so glad you complained and won your appeal and thank you for saying don't give up. I had a guy from a disability support group round a few days ago, he says he will support me, that I need to phone up and get another form and I still haven't done it and was considering not doing it but you have changed my mind, thank you. If nothing else, we have to make these people understand that even though we can raise our arms and go to the toilet, we still need support! Arrgggghhhhhh. It's crazy making but as the guy from the disability support group said, we don't make the rules, they do and they say the benefit is for us, people who need the support, so like he said, it's not up to some paramedic to make that decision based on a stupid questionnaire that doesn't even address our difficulties. It doesn't make sense, and they say we don't make sense!!!! Crazy crazy crazy. Thank you for sharing your experience, it has given me the extra push I need, after being in bed all day!!! And it's not because I'm lazy! If they knew anything about me they would know, that I am far from lazy and staying in bed all day and night, isn't my idea of fun, but that's how it is and has been for the past 18 months and more. Thank you.
Looks like I still have a long wait I scored 2 points for daily living and 4 points for mobility, My local autism team who filled out my pip application and the Mandatory Reconsideration (MR) have said i should be closer to 18 points on daily living yet rejected. Sent off MR 2 weeks ago and as of last week they had not received it so resent it tracked and recorded delivery for £6.45 10 mins after posting it they called my support worker to say sorry for their mistake it had already transferred to the assessment team, and they have until 14th December with the decission. I being me and highly impatient phoned them up today to check progress as the initial application rejection came 3 weeks after it was dated (luckily I phoned them up weekly so had phone confirmation it had been rejected) So my autism team wrote the MR along with senior consultant for ADHD and Aspergers staing they believe it should be reconsidered (Senior Consultant said he would not normally say it direct like that but truly believes I should be awarded it) ANd then corrected the assessment and highlighting the descriptors I should be awarded on. I also have a personality disorder and clinical depression provided evidence of sectioned for own safety police detainment and GPs stating 10 years history of diagnosed depression and 5 years as clinical depression. Yet PIP assessor said no evidence of low mood.Fast forward to today phoned them up chasing up if a decission had been made and apparantly they are waiting on further info from my GP to make decission, My doctors are very busy and have already written 4 bits of evidence for me and all though they are not annoyed at me they are annoyed at the DWP as everything has been well documented and sent off.So just a waiting game but knowing almost 9/10 MRs are still rejected has prpared me mentally for Tribunal which will be after christmas. But hopefully someone will help me out and award it based on MR.
Not according to the paramedic that done my son's f2f my son is aspergers autistic adhd blind in one eye server behaviour problems type 1 diabetic server depression but according to the paramedic there is nothing wrong with him she would not let me speak on his behalf so said that he can communicate ,just waiting now on the pip decision
The nightmare of going through the process of claiming PIP You have my sympathy.
I went to a debt advice agency last week. And among their multiple suggestions was that I should also consider applying for PIP.