17 yr Autistic daughter just refused PIP

pip is a really hard to get thing that even amputees who get prostetics to try walk again get kicked off it for their attempt at walking.

they wont recognise autism for it as its invisible to their eyes and in their eyes you can live normally like a normal human and dont require it. infact im amazed they even diagnose people with it at all with their attitude, i never got diagnosed with anything or recieved any basic help at all despite clearly being massively ill in high school and then after it spending 16 years shut in my parents house doing nothing lol i didnt even get diagnosis or help, not even recognised or helped for depression believe it or not..... then again my gp is a bit rubbish, i went to them with chest pain and difficulty breathing and instead of a appointment right away they told me they will see me in 3 months.... then they said its probably nothing and brushed me off on that... then another time i went to them with swolen red/black exploding looking fingers and they did nothing and told me what do i expect them to do about it lol then told me to come back when it looks infected when it looked more than infected to me at that stage as it was all gangrenous looking. 

the uks medical services are rubbish and they dont deserve any pay at all until they do their jobs right.

but yeah pip is probably like that too, you will be brushed aside, but your lucky to have actually got a diagnosis and some help anyway, so the future is bright lol

You will need to get support on this from a local disability support service, they will need to ask why she failed it could be something simple like her doctor has not responded to them or something. So search for your disability service for example in Glasgow there is the Glasgow Disability Alliance. Try the Citizens advice if you do not have a local disability office. 

broomas said:

Could she understand the difference between a Grin and a Smile from a stranger?

Sorry if this sounds stupid ... but what is the difference?

But yours were 4 from each section so they didn’t count. That’s really unfair because 4 points from a single question are a lot, so you should have picked up a few 2s as well because autism isn’t as focused as your scores would suggest.

If you get 8 points you get PIP.

I would love to become self-employed. I cannot stand "normal" jobs either.

Hi,

I know nothing about PIP, but would suggest she might like to be self-employed, I don't think I could stand a normal job,

1. We explained that we use visuals and prompts when taking our son out and about are you able to take her to the assessment? We did and the panel couldnt understand how he didnt get it! 

Hi

my son just turned 16 and had to apply for pip instead of having his DLA - I sat through a gruelling session being interviewed and at one point listening got upset hearing all the things he can’t do and we have just been told he has 0 points for everything!!!he doesn’t leave the house agoraphobia has ASC and anxiety!! The interview was awful he picked all the skin off his fingers and she put he was calm and eloquent and gave eye contact -he did not!i Cant believe it and don’t know what to do!!we have had so many setbacks and I am tired of having to fight for everything!,at the moment I can’t stop crying.as if life isn’t hard enough!!

Oh we have are just in the applying process 

Hi, I have a diagnosis of adhd and autism (I’m 39) and only just got diagnosed 2 months ago! I also have b12 deficiency, auto immune disorder, Ehlers Danlos Type 3 (no collagen in my body) horrific short term memory loss, joint Hypermobility syndrome, asthma, the list goes on. Maybe these conditions are somehow related to autism too? My brother and Mum have the same as me also, and I have a 13 year old daughter that is autistic wit Aspergers and adhd. I too am the same as you and struggle so much every day :( I had to resubmit forms for Pip due to autism diagnosis, was on care 12 points and mobility 4, and today I got the report and somehow I have dropped 1 point in care! Which doesn’t sound a lot but it’s £30 a week and I use that for extra help. How did your assessment go?  

I have had my DLA stopped after 30 years half my life  told atos all my problems the woman lied through her teeth it's always been suspected l have autism their are six in my immediate family with it I can't do anything for myself at all l don't recognise myself or my family not even my kids I treat them as strangers I have two types of arthritis auto immune disorder related to arthritis... bit b12 deficiency.. asthma memory. loss.. bone weakness ..a limp a pinned up leg.. diverticulitis.a allergies .fainting tiredness l fall I can't wash dress bath cook do shopping l need help I walk in front of traffic get lost all over the country if I attempt to go out alone I smell because I don't know how to take care of myself so l can only just grasp your meaning l am trapped in my own brain and mind dont know how to work money out I've got in debt husband brought up kids lost him to diabetes two years ago lm terrified no carers refused that pip appeals taking forever 

Thankyou.

I can't leave my home now, so I'm stuck for who I can have. She can take a long time but things eventually get done. I don't know how she got the job because she doesn't seem to know much about benefits or the law. Or maybe she does but doesn't want me to have them.

Trying to fight the council is no longer an option. I was labelled a complainer after my support worker stepped in. Since then the council & LGO worked together to refuse subsequent new serious complaints. They seem to be leaving me alone at the moment. But it's frightening how easily they get away with ignoring serious abuse by their staff.

Thank you. 

I agree, there is no way I could or would ever do that as a parent! 

Please do not allow them to do this. The 1st advocate that I used was not very headstrong to be fair, even though she was lovely, there was no real backbone there. So she would not have been tough enough in this situation. As a result, I was allocated another one instead, and this is what made all the difference? 

You have the right to ask for someone who can support you in your individual circumstances, and who is qualified to deal with it, every case is individual. 

I too have had major dealings with the council, that one nearly went to court, but they backed down in the end, as I had so much evidence of them failing my son. 

Please go for further help if you need to, and just explain how you felt let down before? Unfortunately, we have to shout loudly to be heard. Good luck x

Thank you. 

I agree, there is no way I could or would ever do that as a parent! 

Please do not allow them to do this. The 1st advocate that I used was not very headstrong to be fair, even though she was lovely, there was no real backbone there. So she would not have been tough enough in this situation. As a result, I was allocated another one instead, and this is what made all the difference? 

You have the right to ask for someone who can support you in your individual circumstances, and who is qualified to deal with it, every case is individual. 

I too have had major dealings with the council, that one nearly went to court, but they backed down in the end, as I had so much evidence of them failing my son. 

Please go for further help if you need to, and just explain how you felt let down before? Unfortunately, we have to shout loudly to be heard. Good luck x

lizparr77

They're so fortunate to have such a wonderful mother.

For those whose parents force them to stand on their own 2 feet, the future can seem bleak. I had a similar apology from my local council after a complaint against them. They used the exact words. They were deeply sorry & I had been identified as a vulnerable adult. They promised to provide better training to staff. After my floating support worker bogged off, the council just went right back to how they treated me before. Even when I had an advocate, they still walked all over me.

Hello all,
Just wanted to share this. 
I have just today heard from DWP after a very long fight for six months or more regarding my autistic adult child. We had sent all the evidence in back in December, And specifically said that he would not be suitable for a face-to-face assessment due to being severe. This was clearly ignored as the person who dealt with his case was not experienced or familiar with autism at all. I decided to use an advocacy service, after fighting PIP for a while on my own,(I’m quite used to doing this, but PIP is a different level) and have to say that it was the best thing I ever did! 
Please please please check what advocacy services you have available in your area, and especially for mental health issues, we were allocated somebody who specialised in what we needed help with?, This is what they are there for, and I wanted to share our experience, because I almost gave up which is unlike me. I don't want to see any more people have their benefits revoked as a result of inexperienced workers that do not understand a written report or written evidence when it is presented to them. As of today we received the PIP decision and it is very good news, but we would not have got this without the help from the advocate and their legal team?
Do not give up and do not let them win, you will get what you are entitled to if you are a genuine case and you have the help of people who are in the know and of course the supporting evidence.
I have included a written apology (obviously with names excluded) that was received from ATOS to my advocate, trying to get an apology from New is usually worse than trying to get blood out of a stone but as you can see it can be done. So please do not give up ?
Good luck everyone
------------------------------------------------------------------------------------------------------------------------------------
ATOS RESPONSE TO ADVOCATE

Dear 

Re 
Thank you for your recent email in which you express your concerns on behalf of 
with regard to application for Personal Independence Payment
(PIP).
I would like to apologise for the inconvenience that has been caused to and
It is not our intention to cause any distress and I appreciate that the process has
not run smoothly in this case.

As part of Atos Healthcare’s commitment to provide a service of the highest standard, it is
important that we continue to be open and receptive to the views of those whose lives are
affected by the service that we provide. I am, therefore, grateful for the feedback, which has given me the opportunity to investigate the concerns raised.

From reading your complaint I understand tha xxxxxx is unhappy that xxxxxxxxx
was asked to attend an assessment centre appointment, that the reason they did not attend the appointment was not accepted by the Department for Work and Pensions (DWP) and that this resulted in the withdrawal of his benefit entitlement.

With regard to DWP not accepting the reasonxxxxxxxx did not attend the assessment
centre appointment and xxxxxxxx benefit entitlement being withdrawn, Atos are not
involved in this decision and xxxxxxx should direct any further questions relating to this
matter to the DWP on
It may be helpful if I explain that all applications received from the DWP are subject to an
initial review, an office based Health Professional (HP) reviews the PIP2 questionnaire
alongside any supporting evidence provided and makes a decision as to whether or not it is necessary to carry out a face to face consultation or if it is possible to complete a Paper
Based Review negating the need for an assessment.


On receipt of your correspondence, I asked one of our Client Relations Medical Advisors
(CRMA), a senior clinician who works alongside the complaints team, to review the evidence
available on the DWP database. He advised that the evidence available identifies xxxxxxxxx
as a vulnerable adult for whom a face to face assessment would undoubtedly be a difficult
and stressful experience and therefore a face to face assessment would not be appropriate.

I can confirm that the HP who completed the initial scrutiny allocated an assessment centre
appointment in error and I would like to offer my sincere apologies to xxxxxxxxxxxx for and the distress this has caused. I can assure you that feedback has been
provided to the manager of the HP concerned to be addressed as a training issue and
appropriate action taken.

xxxxxxxxxxxx claim was reviewed again on xxxxx 2017 and the HP contacted the manager
of xxxxxxxxxxxx for additional information, a Paper Based Review has now been completed
and the report submitted to the DWP for the Decision Maker to complete their process.
I acknowledge that the withdrawal of xxxxxxxx benefit was a direct result of the error
made during the processing of his benefit referral by Atos Healthcare, in order to rectify the
situation I contacted the DWP on xxxx 2017 on xxxxxx behalf. I provided details of
our error and asked the DWP to reinstate the DLA award until the decision regarding
xxxxxxxxxx entitlement to PIP is made. The DWP have confirmed that the decision has been
reconsidered and they will write to xxxxxx separately to advise her of the outcome.
Please be assured that errors such as this are rare and Atos Healthcare take all complaints
very seriously as the information contained within them is invaluable in enabling us to
monitor and improve our level of service. I would, therefore, like to thank you for the
details of xxxxxxxxxxx experience, all of which will be kept on file for future reference.
Atos Healthcare strives to provide all customers who undergo an examination in respect of a
benefit claim with a professional and courteous service. Once again please pass on my
sincere apologies to xxxxxxxxxxxxxx for the distress and inconvenience that has
been caused on this occasion.
I hope that any future dealings with xxxxxxxxxxx has with our service will not give cause for
concern.
Yours sincerely
xxxxxxxxxx
PIP Client Relations Officer
Atos Healthcare

I hope you get it Caitilin.  I felt a bit encouraged by Doglady's tribunal as my issues are similar to her daughter's and I scored the same - it is because they changed the criteria to get rid of people.  I also noticed that the things I got DLA mobility for are now split across care and mobility.  I am currently waiting for the results of my appeal.  I am however concerned by the fact that I was unable to attend the tribunal as it would have been too much, and paper considerations are much less likely to succeed.  The other issue is that I was not able to go to a charity for help because I wouldn't be able to talk to them.  DWP very much held against me the fact that I can be articulate on paper, and have degrees.  The other thing they held against me was driving myself to the centre and meeting my friend there, even though I could only do that because the DLA had helped me to run a private vehicle, as I cannot use a bus.

Hi doglady, I am 18 and I am also autistic, I also have depression and anxiety, hypermobility, asthma and multiple allergies to foods; i rarely ever leave the house  and find it difficult socialising and talking to new people, i can never read there expressions or tell of they even like me. Theres been a few times i thought people where trusting but really they were just taking advantage, Making friends is something thats never happened places like school was a traumatic experience. My dad has to manage all of my medication for me because i have over dose before, also i forger to take it , he manages food for me as im allergic to so much we have to be careful, alot of the time i dont want to eat so he is always prompting me too, manages my appointments, he trys his best to help me live a structured life because if left alone i let everything go bad the way it shouldnt be, im not allowes to cook because i forget the cooking times, end up burning my self and forget that ive left the oven or hob on. the exact same thing has happened to me, I had to transition from DLA to PIP, I have been diagnosed since being a child by three psychologists and yet they have still done this. I myself dont know the full ways autism affects me, i am just me, ny mam abd dad have expkained to me before but i dont know how to voice my needs to people. The woman didn't listen atall, to me or my carer (my dad), she also scored me a 4 for communicstion and only a 2 for going places evem thoug I need help getting places because I can't remember a travel route and I get very anxious around people apart from close people like my mam dad and siblings.. My dad is helping me appeal because I don't know how to, hes got my gp to write letters, even though the woman had medical reports, my sick note, and other evidence like hospital letters, she's not wrote about any of my problems. She had the cheek to say because my depressent tablets are 15mg that im not depressed, it really upsets me because they are belittling the fact that i am and i do need help which ive finally got the corage to do after years of bad experiences with CAMS workers, i have alot of anixietys surrounding talking to these people. everything that has been written in the refusal report hasn't considered any of my daily living needs one bit. It makes me feel like a lost cause and more sick of my life because if I'm not allowed the help then what kind of freak of nature am i all I've ever wanted is to live a normal life and be able to socialise and do things my self. No one wants to have these issues and yet the athos people make out as if your lying. Even though these problems have been ongoing since being a child. since the money has stopped we are financially struggling as I have no income atall I have to ask my mam tor buy me women's things and borrow money and it makes me feel so low that I have to depend even more on people because I cant afford anything, it also annoys me the pip person we went to see has disregarded everything and it really has took its toll. For the appeal my dad has got further letters from my doctor, and workers who are printing all of my history off , we are sending these off. All I can suggest to you is to get as much evidence as possible like my dad has been, and try explain in detail how your daughters condition affects her daily living needs. these people don't believe mental health is a disability even  though it does greatly affect the person, I read an article about pip being put in place purposely to discriminate against mental health, even if your circumstances are worse they try and find loop holes to refuse the decision. I hope your appeal goes well and that your daughter is awarded PIP.