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.
My son who is 16 has just been transitioned from DLA to PIP. He was only diagnosed with ASD in March 2014, but we had already been awarded DLA low mobility but no care in JUly 2013, due to impacts caused by social anxiety and other physical impairments. The decision to award no care was appealed but due to the backlog was only heard in late October 2014, and the statement of reasons was only provided to me in January 2015 by the Judge, after I complained to my MP. I then consulted the community legal centre and they have appealed my son's case to the Upper Tribunal since they considered the lower tribunal had made a mistake in applying the law. Outcome not expected for many months yet.
In January this year my son was 16 and prior to that we were sent a letter re appointeeship, I applied and they lost the letter. The second time I applied and nothing happened for weeks until I contacted them, and hey presto an appointment was arranged at home. That was fine and I was made our son's appointee. I was then sent the PIP conversion letter and filled in the forms along with 15 pages of extra information about the impact that our son's condition has on his daily living and mobility. I have to emphasise that I spent a lot of time preparing this, and working in the phrasing and wording to match that in the DWP decision makers guide ( on gov.uk website). I also found the Disability Rights Handbook very helpful also.
The result of this was that the form was sent off at the end of March and having heard nothing after 4 weeks, I rang up the DWP to be told that a medical assessment had been completed ( without a face to face meeting) and the decision was expected shortly. A couple of weeks later I received a notice to say that our son had been assessed as meeting the requirements for Enhanced Daily Living ( scored 21 points) but only 4 points for mobility needs! but awarded for 10 years
Of course we had mixed views about this as our son is a high functioning autistic person. One of the major impacts is getting out and about by himself- he can't do that without it causing a great deal of axniety and stress etc so he doesn't unless we take him everywhere. He cannot go on public transport etc. He can't even walk to the local shops which are 6 mins walk from our house, yet he can play rugby for 2 hrs
Anyway, I considered this carefully and decided to ask for a mandatory reconsideration, so I rang up on the deadline day, and then sent in a written confirmation of my request along with a reason why I thought they had got it wrong on the mobility side.
15/6, I received a further decision letter dated 11/6 advising that they had re-considered their decision and the Enhanced Daily Living was still 21 points, but that they now evaluated my son's mobility meeds as scoring 10 points = standard mobility.This is the "you need assistance to follow the route of an unfamiliar journey" descriptor- totally frustrating since my son cannot travel anywhere either familiar or unfamiliar without someone else- which of course I had told them that.
Oh and they decided to knock it down to a 6 year award period and change the payment dates for good measure- like he is going to get better???
Anway, now I have contacted the Community Legal Service again and apppointment this week to go through with them as to whether we appeal to a tribunal -
The real difficulty all the way along has been to get an engagement with the social services teams, in the main because our son respects the rules at school and is a high attaining pupil GCSE's A's and B's, he is not a 'problem kid' so no one is seeing the bigger picture, like the fact that he has only 2 or 3 close 'friend's or that he cannot mobilise himself to get out and about without being supported and so forth. It really is an invisible disbability. Transitions process as school is a joke for much the same reasons, yet only yesterday our son had multiple melt-downs about what he is going to do come September. Very tiring and stressful for all including his younger sibling.