Published on 12, July, 2020
My Son who is 23 now has been in receipt of DLA since his diagnosis back in 2006, He used to get Middle component for daily living and lower for mobility. He has recently been reassessed for PIP. He was refused after the assessment , and after the Mandatory reconsideration request.
We now face an appeal that I myself am not prepared for and don’t feel I even have the strength to take on, he scored zero for everything even though I have to do ‘everything’ for him, such as cooking, washing/drying his hair , even down to clipping his finger and toenails. Accompanying him to doctors/hairdressers. Prompting to wash, and asking for his clothes he has been wearing a week, looking at his bleeding Unbrushed teeth and smelling his bad breath and body odour.
I feel the assessment went badly because he answered questions he shouldn’t have with the wrong answers, and didn’t realise the consequences of just saying yes or no to shut the assessor up. He is very naive
He has a small job at Sainsbury’s which he only has because I work there myself and got him the job. Without me he would cease to function, he does not leave the house aside from the 2 shifts a week he works, or socialise with anyone, he does not wash unless it is to go to work. He plays games all day and hides away in his room. He does not care or understand responsibility and I worry what will happen to him when I am not around anymore. He is very stubborn and will not try new things, does not like any change to routine. His mental age could be compared to a 13 year old boy. Him having this extra money would be a crutch for him that we need the security of.
The assessor reported he had good eye contact, even though She barely looked at him, she performed a mental state exam? How can she possibly know what is going on inside an autistic adults mind , their expressions often blank and emotionless. They were told how his disability affects him and they chose to ignore most of it and say ‘ I have decided you can’ even though I say he can’t ? How do you win such an argument?
I feel so desperate because he looks ‘normal’ to the average persons. He travels too and from work with me , he cannot go out on his own and would not do so. Yet the assessor decided he can plan and follow the route of a journey unaided , even though he cannot ? And would not , he has not recently seen any specialists for autism, as it is a lifelong condition and not likely to change. I am worried I do not have enough evidence and don’t know where to begin to get any ? He received all the support in school and through college , could they offer any evidence? ,All I seem to have is my word that he is hard work and needs my help every day. And a diagnosis report from 2006.
Any advice would be hugely appreciated , I now have about 3 days to complete the appeal forms and send it off as I’ve ignored it for over 2 weeks because I can’t cope. Thank you
you write that your son hasn't had any treatment for his autism recently. Has he had treatment in the past though ? do you have any proof of diagnosis and a report detailing problems autism causes. If so this would be useful in court. If you don't have anything of this nature perhaps there is a way you or your sons GP can confirm he doesn't go to doctors because he cannot engage with them or manage treatment. Alone its not going to win your case but it will hopefully show the judge nothings going to get better or change in the near future.
To win you're going to need to prove that the the dwp mechanic that carried out the assessment either lied didn't listen or made mistakes in their report. And most of the time theres little way to prove anything because its your word against theirs. And often people with autism and their families are isolated and do everything they can themselves. Even when they ask for help from the dwp or social services they don't get much if any at all. However it might be worth asking the council for a needs assessment just to get their report. It might not be worth the paper its written on in terms of getting your son services, but you never know a good and knowledgeable social worker might exist in your area and might take note of travel problems accessing community issues and I dont know, an ultra clean or ultra messy bedroom. Other than that all you can do is look at pip descriptors (pipinfo . net) and write down all that you think are relevant, how, why. Thankfully the court experience is less stressful than what the DWP put people through. The court will also make reasonable adjustments such as providing a quiet room. The dwp provide no adjustments or help for anyone no matter their disability or struggles.
He does have proof of diagnosis and a report which they have already had, it was sent with the original claim. Should I Add a copy of this in again ?
He used to have treatment about his bowel troubles, such as constipation, or soiling his bed without knowledge. He still has those troubles but the older he’s got , the more he’s refused to do things such as go the dentist, or doctors , or even have his eyes tested.
There was a psychologist that used to come round and see him at home, I could try to find her again?
I will drag him down to the GP as well and see what I can do , it’s almost like they aren’t happy unless we’re down there every week wasting appointments and time. And taking loads of pills :/
His bedroom is very messy and smelly at the moment so I could look in to that . Thank you
I am 39 was diagnosed with autism last year. I left school when I was 14 messed around doing very little with very few people. I've lived alone for 15 years but I wouldn't have left my parents if it was possible to stay and I know what I know now....And what I know now is life is a pain sometimes. Very isolating. I am literally alone all day every day at the moment so if your son thinks of quitting his job remind him years are long things when the time is spent doing nothing except play games and watch tv !!!!. The older you get the less help and services there are so kids and younger people with autism should try reaal hard to keep themselves in the system that everyone else is in.
Benefits are required to remain in society and functioning sometimes and social services should be but dont always help with accessing the community. Since turning 18 all I've really achieved is staying alive somehow. And the fact im alive is largely in part to learning how to claim benefits. Or rather ive learned a bad lesson that stuck...and should say ive learned how to cover their claim forms in blood and then appear in front of judges to explain the distress caused by stupid repeated letters forms appointments is totally unnecessary and very harmful. When the condition and or situation hasn't improved since ooooo I dont know, birth, 6 years old, why keep saying the same things over and over again and keep sending them the same evidence over and over. Ive no idea. But all anyone can do is go with the process and hope they get the benefits they are entitled to.
I would chase everyone yo can for evidence or any information that may be even just slightly useful. A fairly easy piece of evidence will come from obtaining all medical records GP holds. The psychologist might have left notes there but they are worth googling if not. Any paperwork you get, highlight past problems that still apply today and send that to court. Also in the past I've given the court print outs of NAS campaigns and other information on autism. It seemed to help because a lot of professionals are still clueless about the impact autism can and does have on people.Don't be surprised if anxiety and depression become a bigger topic than the problems your son experiences.