Got to pick a pocket or two......

I’ve gone all Dickensian with possible pneumonia!  I know it’s not unheard of in this day and age as a friend of mine who also has a son with ASD had it a few years ago, it ended in Pleurisy – not heard that one for a while! I’m really not after reams of “get well soon” or “poor you” we all get sick this time of year.  The dog is constantly with me being all concerned, not sure if it’s more about the possibility of his next meal being at risk or my wellbeing but at least he’s trying.

I guess we all go a bit Dickensian this time of year, thinking of Christmas, good will to all men and all the poor and lonely.  I know the DWP do as I’ve just received my sons Personal Independent Payment forms and have to return them by 28^th December so that they don’t stop paying him. Merry Christmas!   I’ve also recently completed their fitness for work forms for his Employment Support Allowance and am awaiting a decision as to whether he’ll have to attend an assessment. (oh and btw DWP your envelopes are not fit for work as I couldn't fit all the evidence in, see photo below)  He’ll probably have to have an assessment for his Personal Independent Payments too.  Then there’s the Local Authority and I’m still awaiting a draft amended Education and Health Care Plan from last June from them to see if additional funding for him will be available for the rest of this educational year and next.  I’ve made enquiries about an independent Educational Psychology assessment for this as it is likely that the LA will try and cease the EHC plan saying now he’s 19 there is no longer an educational requirement for one.

A couple of months ago the DWP stopped my sons ESA payments saying that they had not received his latest doctors certificate, which I knew I had sent.  They tried to tell me they hadn’t received it and that we’d have to make a new application (which can take weeks). I refused. They looked into it and finally admitted that they had received it but it had been deleted off of their system in error.  The payments were reinstated and back dated. 

The same week the Local Authority then tried to tell me that they had sent a final amended EHC plan back in June.  When I told them that they hadn’t as I had not received a draft, sent back my amendments or accepted a final plan they rang back and told me it was an error and that they were looking at last year’s records.

Cock up or conspiracy? Hmmm you can make your own judgment on that but here’s the reality; My son needs financial support, he’s unable to get a Saturday or part time work, as his peers do, because no one will employ him and its very likely that without the right support he would struggle even if they did.  We have to prove that to the DWP.  Thank God I’m here to help him, if he was on his own he would have been left without payment a few months ago.  No food, no money for travel to college and where the hell would he live?  Without support in his college placement he would not be able to cope with the academic part of the course or keep up with the Maths and English that the government insists be part of his course, in short he would fail.

So the new year brings a possible onslaught of 3 lots of  assessments where he’ll have to talk about his difficulties, what he can’t do, what he needs help with and why he can’t function like the rest of us.  I do not know what the impact on his self esteem will be but I know I’ll have to be with him all the way riding the waves of hopelessness that he’ll feel.

Yes I want him to be financially independent, so does he, yes I want him to make it to Uni to study Bass guitar, so does he and yes I would like to see him living by himself and looking after himself, so does he.  But he can’t do it without support.  He has a diagnosis of Autism, for that there is no cure.  He will always need support. 

Oh and incidentally I’ve just had a call from my partner saying that we have to pay for my sons prescriptions now.  How would he do that if he had no money??

I do not want to fiddle the system, get whatever I can or bleed it dry for all eternity.  So DWP I hope the ghost of Christmas past, Christmas present and Christmas future come to visit, most of all Christmas future.  We are not Dickensian.  People have died, people are dying and people will die whilst waiting for your decisions and being on the receiving end of your cock ups. 

So if you’ve got to pick a pocket or two choose someone whose pockets are full.  Oh and stop bloody consulting with us, you know how it is, now do something about it.  I’m tired of talking.  In fact I’m just bloody tired. 

Cough!

Peter and Paul

"Robbing Peter to pay Paul" That's what the news presenter said about the cuts to the Paralympics in Rio.  To make the mainstream Olympics super special or maybe just fit for purpose they robbed the Paralympic pot.  Poor old Peter, still never mind eh its not like he's not used to it. Some might even say poor old disadvantaged Peter, how awful to do that to the disabled folk, at least they'll still be able to have a go, that's the main thing.

Back in 2012 we hot footed it to Spain during the Olympics, I was a bit of a conscientious objector.  With the cuts hitting services so deeply and in the midst of a recession it just felt wrong to me to be spending so much money on it all.  I have to say I regret that a bit now, everybody seemed to be having a ball whilst we were away but we did make it back for the Paralympics.  I watched and so did my son.

My son loves football, he wanted to be very much like his younger step brother and play in a team, win matches and be part of a club.  I found a disability football club but he wasn't interested as he thought being disabled and playing disability football was "less than".  We managed to get him into a mainstream club as a goal keeper, it didn't go well.  I stood on the side lines in the pouring rain watching him let in 15 goals and be hated by the rest of the team.  He felt utterly crap about himself.  It was a hard time.  I kept telling him that his disability meant he had to be more determined, work 10 times harder and that he should be incredibly proud.  He didn't believe me.  Then we watched the 2012 Paralympics. Then he got it.  He watched in amazement at the achievements these athletes made and listened to the stories they told of how hard they'd worked.  He started to feel proud of having a disability.  That helped him turn a corner.  He joined the amazing Football for All disability league, playing firstly for Sutton Eagles then Wandgas.  Him and his team recently made it to the finals of the FA peoples cup.  They were beaten by big, huge men on crutches, they didn't expect them to move so fast!!

Myself and my partner became massive fans of "The Last Leg" what a breath of fresh air that was. "You mean disabled people can do cutting satirical comedy"  "They can have an opinion" "They can actually do it better than us!" The 2012 Paralympics gave so much to people with disabilities, not just the opportunity to boo George Osbourne.  It made them present, the mainstream finally noticed and took part with them. A massive step towards inclusion and acceptance.

But now this..........Urgh. I'm not seeing much on social media about it, no one is raising their fist, shouting from the rooftops at how outrageously unfair and unjust it is that the Paralympics is being given "less than".  In 2012 the Paralympians were not at a disadvantage due to their disability, oh no, they were given the same as their fellow Olympians and that is how equality works.

During the last year I've been trying to help improve services within my Local Area with the help of a very vocal, fantastic group of parents.  We've sat and we're heard "but there is no money" over and over and over again.  Now just imagine Peter and Paul both have a disability, one is affected by their disability differently so needs a different service to the other but the Local Authority only have enough money for one service.  Who robs who?  Or maybe we rob both and give them both half a service?  That's how decisions are being made. Peter and Paul find it hard to get media coverage for their plight, they only make up a small percentage of the voting population so basically, who gives a shit. " Their parents?," "Look just tell their parents, we are giving them the minimum service we can get away with, that's all we have to do.  Compete in Paralympics?????? WTF are you asking for, a Rolls Royce Service, that's tax payers money you know, take what's on offer and be realistic"

Yup that's the general tone and the current situation in Rio is the same.  All the determination, hard work and courage in the world will make you a great athelete but it takes money to show the world how amazing you are. Come on world please take notice this is unjust, unfair and unequal.