Published on 12, July, 2020
Hi,
I am new to the forum as my daughter was only diagnosed with Austistic Spectrum Disorder last summer, after a year and a half of assessments. We applied for PIP last April (I am her appointee) and have just been sent a letter saying she will not receive it, despite never going out alone and not being able to cope with communication with people other than her immediate family, and that is limited. She scored 4 points for 'engaging with other people face to face' and 4 points for 'planning and following journeys'. Zero points for everything else, despite a face to face assessment where I explained that she goes out on average once a week, sometimes less, and is always accompanied. She has lots of sensitivities, particularly with food.
Has anyone else experienced this? I am preparing an appeal. It says on the covering letter ' I realise you have a disability or health condition and receiving this decision isn't the news you were hoping for'. It's a joke.
We are legal guardians to our 14 year old grandson who has high functioning ASD. As the time for a PIP assessment becomes ever closer we are becoming more anxious about the outcome for him and for us. He has been diagnosed since he was 4 years old and has a dedicated team of professionals (couldn't get any help until his violence put me in hospital with a serious back injury 5 years ago) who are trying to help him control his behaviour. He has a myriad of problems including anxiety, obssessive and damaging behaviour in the home, no appreciation of danger (starts fires, obsessed with electrical items, poor hygiene, stealing cash, bank cards and credit cards to the tune of hundreds of pounds if he gets hold of them, plaster picking, wallpaper stripping, carpet chewing, obsession with water and will attack us or run if he gets upset in public to name just a few. The thing is, he is highly intelligent and very high functioning indeed. He is educationally normal although he needs an additional needs school because of the social difficulties that he experiences. His language is fluent, if a trifle quirky, and he believes himself to be completely right about everything. I have great fears for what will happen if the way he manages is questioned in an interview. He is likely to talk himself out of the benefits that he so badly needs. For instance....when asked how do you manage in the bathroom, he will say of course he can but in fact we get smearing, urinating on the roller blind, flooding, blocked loo, he wont wash his hands or flush the chain and he is busy destroying the bathroom floor at present. His psychiatrist has said that she will leave the assessors in no doubt about the depth of his challenges despite outward appearances but I have read that little notice is taken of the advice of professionals in the field. We are in our 50s and desperately need the 4 hours respite that we get per week and although it is funded the cost of the activities, food while out for him and his carer is paid for out of his DLA at present. The rest goes on repairing his room constantly as he breaks everything, replacing his clothing and shoes which he picks and pulls at until they fall apart, socializing him (he would sit in front of his driving game on the computer all the time given the chance), and towards the cost of looking after his PAWS dog. He is on the higher rate for care and lower rate for mobility because although he can manage familiar routes he has no understanding of danger and so cant go out alone. If we lose his benefit we also lose my Carers allowance ( the stress and strains of caring for him for 9 years have taken a heavy toll on my ability to work) and the bonus for having a disabled child attached to the tax credits. We will still have him to care for despite having thousands of pounds per year knocked off the budget. Where among the questions that he will be given is there anything that will explore the complex condition he has?
PIP is not DLA, but rather an inferior benifit that pays less and is harder to get. It is necessary to request a mandatory reconsideration, and where necessary a tribunual to have any hope of recieving this benifit for an ASV
I'm afraid I have not had to deal with PIP as my son was diagnosed with Autism/ Aspergers before it changed to PIP, if that is what DLA is now called.
The reply from Crystal is correct, however hard it is, you have to think of every scenario that your child could be in, and how they might respond.
My son seems absolutely fine until something unexpected happens.
You really have to try and 'put yourself in her shoes' (apologies if you are Autistic youself !) what could possibly go wrong?
Could she understand the difference between a Grin and a Smile from a stranger?
She may need to follow rules e.g. 'Your mum said you need to come home now'
Would she follow routine, even if the situation had changed? ' I always walk this way because it's safe'
Or 'Hey we go to school together, you know you can trust me'
All these things seem 'common sense' but could be high risk.
Sorry if it makes you anxious but it needs to be done.
Yes, it's a bad joke, whether it's ATOS or somebody else running the assessments on behalf of the govt. You are right to appeal, lots of appellants win after having experiences such as yours (where lots of 0s are scored). Citizens Advice Bureau are a good help with appeals Check out the nas home pg on this issue. If your council has a welfare rights dept or similar they can be v good also. Some of the organisations I've mentioned have days where they go to community ctres or similar so people don't have to travel so far. There is also an organisation called the Consumer Action Group who give loads of good advice, inc form letters etc on a wide variety of money issues, inc benefits. I wd recommend you have a look at them. You shd write your answers based on a "worst day" experience under each heading. The process at assessment stage is cynical. It comes as a shock to reasonable people. The aim, imo, is to put people off by refusing in the 1st instance. Keep at it, you'll get there. Check out other posts on this subject by doing a search on here.