Hi everyone, i'm new to the forum and am hoping for some advice, support, and any PIP stories.
I'm mum to 16 year old twins, one of my girls was diagnosed with autism at the age of 2 and a half, we claimed for DLA and it was plain sailing, no problems.........that is until September of this year when we had to make the dreaded leap from DLA to PIP.
I filled out the forms always going by her worst day, she had a face to face meeting at home with an assessor where i supported her through the process.
We got a letter yesterday rejecting her claim, so i guess her autism has been magically taken away.
She had mostly zero's, even though we outlined all areas in where she had problems, its like they didn't read or get any information regarding how her autism affects her. The assessor by the end of the interview was talking to my daughter like a 5 year old, how is this not put forward by the assessor as relevant???
They basically said that there was no evidence of of any cognitive, intellectual, or memory restrictions, duh yeah.....she's autistic! Some of the most intelligent people in the world are on the spectrum! It's blatantly obvious that this PIP system is not set up for people with a diagnosis of autism. They said that she has good GCSE grades of C's and D's, with level 5 in maths and english, what does that have to do with her PIP claim? I'm proud of my daughters achievements, she worked damn hard for those grades. All the things we said she found difficult are not addressed in the "my decision" section.
It appears that they are very happy for her to live an independent life living off sandwiches, pot noodles and cereals. The fact that she has no road sense and has nearly been run over twice does not matter a jot, she needs a chaperone outside of school to help with her road safety, her anxiety and confidence. She also relies on someone for conversational communication, as she finds direct questions intimidating, and will answer a *yes or *no rather abruptly. She goes to a college for young people with additional needs. She has poor fine motor skills (she can't use a tin opener, or chop vegetables/use a cooker without support), They say she can manage complex budgeting decisions!!!!! Are they having a laugh! The only budgeting she does is how to spend her Christmas and birthday money! She does go into the shop alone for the odd groceries but i always give her enough money to cover the cost, so you can't call that budgeting! She also needs help washing her hair as again her fine motor skills are under developed and if left to do it on her own she doesn't do it properly resulting in greasy hair when its dry, i then have a very tearful 16 year old because she can't bare it, and i then rewash it for her.
Her statement of education was sent in as evidence where it clearly stated she has a comprehension level of a 9 year old, again this appears to mean nothing!
My first reaction i have to admit was to cry as i realised that i was now going to have to fight for what my beautiful girl is entitled to.
I then felt extreme anger, how dare they take away a benefit that has long been in our family and used to support her, a benefit that has given her a life she couldn't have had without.
She needs this benefit to help her have an independent life, a better life.
I swear had a Teresa May walked past at that precise moment i would probably be sat in a police cell!
I've phoned PIP to tell them i want a second opinion, so now i have a month to send in a letter and gather more information, however, i've read on the internet that this is just a procedure and it will likely be rejected again and it will then be taken to a tribunal........really?????
I have to put my daughter through this charade for a benefit that will improve her life, and make her feel s**t about herself in the process????
I'm so angry! I feel am put in the position of making her sound less than human, less than worthy, pointing out all her flaws, making her sound a burden and for what???? For a benefit that she is infact entitled to?
Is no one taking into consideration her mental health needs, the fact that because the benefit is for her she is reading every single word i'm writing to PIP, and the fact that she will be at the tribunal listening to it all. Is no one thinking about the impact it's having on her, the fact that we've cheered every milestone, every achievement, and supported the beautiful soul that she is autism and all, only now to have to rake over every flaw, every difficulty.
PIP and the procedures young people have to go through to get it is morally wrong, and the people who assess, and make the decisions on young people who have had a diagnosis should hang their heads in shame.
Any support would be gratefully received.
You have may sympathy.
Basically to get PIP. You need to provide external evidence to back up your claims. Otherwise they can and will dismiss your claims as a work of fiction. Just being diagnosed as autistic is NOT enough.
My advice would be to get advice from experts such as a Citizens Advice place.
You have to play by their rules. This is different from playing the rules (which many people do!).
I apologise if I seem less than tactful and polite, but being autistic means I lack social skills.
I tried to click the reply button under your message but it doesn't work. The annoying thing is is that i named 3 people to back up my daughters claim, and they never contacted any of them, so it was basically the PIP form that i filled in and the assessors face to face interview (as well as the statement of education that i sent in), that they had to go on. I now know why such a huge number of applications fail!!!! It's because we are trusting them to speak/contact our listed people! So i am now in the process of getting a doctors letter to clarify formal diagnosis, as well as getting a report from her keyworker and head of the autism resource centre where she had a place during school. I've also asked for a report from her new college and their SENCo to back up Her application. You offered great advice and there is no need for an apology
Hi Lavender, i am in a similar position to you but we are waiting for the dreaded decision after a face to face on Wednesday!.
What you have said has really worried me as we sent in his Sen too, i had a phone call after our application from a hp who asked loads of questions and so I thought we had avoided the dreaded f2f but no!.
I think he failed the memory test (I don't know if they get 2/3 it is a fail) and he folded the paper 2 times not 3 but the money question is ridiculously easy! I mean the only way it could be easier is if they made it 50p!!.
My son is doing gcse's next year so that never came up!.
Did they do a physical test on your daughter? They did on him!. He needs help on most of the descriptors and it effects the whole family as he can't be left at home on his own at all!.
If they turn us down we lose carers etc and I can't be there as much for him, it will make life really difficult on top of everything else. Do they think we would be doing all these things for them if we didn't have to!!.
I really feel for you and hope you get what she deserves at appeal.
Morning:) NA S24801
Yes they made my daughter do a physical pinch and grasp test, which proves absolutely nothing! My 4 year old niece can do this exact same test, it doesn't mean she can wash her own hair, open a tin with a ring pull or use a tin opener. I have realised that they've been crafty, i expected them to ring the people that i've named and they didn't, so now i'm running around trying to get written reports asap, so that i can send them off for a 2nd review. I've figured that all they have is my PIP form that i filled in on my daughters behalf, the assessors report (which i've asked for a copy, as it's become apparent that there's a lot of lying going on!) and her statement. I sent nothing else to back up my daughters diagnosis or proof of her difficulties. Robert123 was very right about US providing the the evidence. I trusted that they would contact the references, how foolish was i!
You'll first get a letter saying that they have all the evidence they need to make a decision, and then rouhly 2 weeks later you'll receive their decision, i wish you good luck and would be grateful if you could keep me updated as to the decision you receive.
Do not just rely on sending in reports because they don’t seem to read them. I’m going through the same thing for myself and went to Cab for help. I also, I just posted on an ESA question rely heavily on the Benefits and Work website who offer more detailed suggestions of how to fill in the forms. It’s a lot of work. With each descriptor you have to give examples of precisely what is difficult for you and then why it is difficult for you and what aids or supports you use to help you. Emphasise over and over again.. whether the activity can be done repeatedly, in a timely fashion, safely and reliably. What aspects of being autistic make it difficult. Go through each thing they said you can do with a counter active example and reason in as much detail as you can. I can understand your anger and frustration because I have felt it myself but at least your daughters have you on their side. Also I would definitely look into getting help from Cab as mentioned or Welfare Rights ( through your Council) as they are used to helping people through this.
Its good that your gathering that evidence now and its a shame the need for supporting evidence isn't emphasised more as it does make a huge difference. I have been awarded PIP both times I have applied as I backed up everything I said with substantial independent evidence. Don't forget that PIP isn't awarded simply because a person has a disability. The disability needs to affect the individual seriously enough against a specific set of criteria to be eligible. For example, 'if your daughter can read and understand basic and complex written information either unaided or using spectacles or contact lenses' she won't get any points in this area. If she got a C or D in English her skills are likely to be the same as her peers.
Whilst she did do well in English (i'm very proud of her), she has a comprehension level of a 9 year old, meaning she doesn't always understand what she's reading. She had extra time in her exams awarded to her and a person to read out the exam questions in a way she would understand, she was also put into a small room as she can't cope with examination hall. When given a question on "how do you think the person felt in this article?" she really struggles as she can't put herself in anothers shoes and see from their point of view, just this alone makes communication and socialising difficult for her, it's the complexity of autism that people don't seem to understand, the PIP forms are completely useless for ASD.
Everything just seems to be a fight doesn't it:( the problem is that i don't see my daughters autism, i just see her. So trying to figure out what her difficulties are is really difficult for me. Yesterday she made a pot noodle independently but she forgot to boil the water in the kettle (i put down on her forms that she could do this independently). I asked her what she would have done if i hadn't been there to save her pot noodle (i put it in the microwave), she said she would have tried to eat it as normal! How do i get through to PIP that this is why i'm her carer, now she's at college (one for young people with additional needs), she's at home more thus she needs me even more, so i'm in the position where i can't get a job, i'm going to lose my carers (the pittance i'm getting doesn't even cover it!) and i'm caring for her more!!!
That sounds all too familiar.. I do all sorts of crazy things. This is the Cab list of descriptors with points
Go through it very carefully, using the guided I mentioned before on Benefits and Work..
this also looks helpful
its really difficult to separate out the deeds from the person, and which deeds d having to dig down to the nitty gritty which is very humiliating and zaps your self esteem but you have to do it to get the benefits.
For the pot noodle example.. your daughter cannot door reliably because she forgot the water, she cannot do it safely because she could have damaged the microwave, she cannot do it repeatedly because sometimes she gets it right aand sometimes she doesn’t, she cannot do it in a timely fashion because it took her longer than would be expected. And then she needed assistance and supervision to accomplish the task. You have to break down each descriptor like this. Then you have to say why this happened. Did she get distracted or forget what to do? Did she not plan and follow through the task ( ie lacked executive function)
https://iancommunity.org/ssc/autism-adaptive-skills this might give you ideas how to talk about it