Wednesday, 15 February 2017

Not disabled enough

We currently have two university places on offer to my son.  That is a sentance I never thought I'd ever type.  But it's completely true.  "To be a good bass guitar player you must practice for 4 hours a day" is what it says in my sons bass tuition book. And so he does.  For 4 hours, no more, no less, every day.  For the sake of our sanity we bought one of those cabin things and put it way down at the bottom of the garden, next is the sound proofing.  He sits with ear protectors on and the bass amp up all the way "because I like to feel it Mum" and practices studiously.  His amazing memory means he retains all the informtation which is then cemented in with the continued overlearning he does.

At my sons recent ESA (Employment Support Allowance) assessment, the last question the assessor asked him was to take 10 from 100.  He couldn't do it and refused to answer.  We left with my son calling himself an idiot and reeling from the experience.  The assessor sat in front of his computer, asking each question.  My son didn't understand the questions and the assessor looked puzzled at my sons responses. The assessor looked at me for an interpretation but I refused, he was there to assess my sons ability to function without support. All I explained to him was that my son has difficulty understanding complex verbal questions due to receptive language difficulties which is part of his Autism and perhaps if he thought about wording his questions differently it might help.

Due to a broken heart, my son was dreading Valentines Day this year  (he's considering The Undateables)   I was dreading it too as it was assessment result day. I was laying out my sons clothes for the day and cleaning the bathroom up after him when my phone rang.  "unfortunately your son does not qualify to continue to receive ESA"  Apparently you need to "score" 15 points at the assessment to qualify, my son somehow scored nil point. So no more ESA and no Mr DWP he can't get universal credit as he's still in full time education and yes heading towards University.

I am beginning to feel like all my knowlege and all the professional assessments of my son are worthless.  I am still waiting for an updated EHC plan from our SEN department, nothing I seem to say has any impact and is ignored.  The lack of support at college recently led to a huge meltdown which his father experienced for the first time.  It shook their relationship and both are dealing with the fallout of it.  The college are now being supportive and putting in as much 1to1 staffing as they can afford.  They are not a specialist college but have a general ethos of tolerance and understanding towards difference. He will hopefully now be better able to cope because of the support they have put in place and the understanding he gets. So why does the DWP think these are things he won't need in the work place???

Unless the DWP or the employer are prepared to put support in place the chances of failure in the workplace are huge.  I can confidently say this because I've been the one that's had to pick up the pieces and fight for support for him for the last 13yrs.  But right now I don't feel like anyone believes me.  I've made it all up in order for my son to get 50 quid a week.  Scrounger, benefit monkey, fraud, lazy etc etc are all the things I feel myself and my son are being labelled right now.  Perhaps I should just step away, withdraw my support, stop fighting and let the system take over.  George Osborne and Ian Duncan Smiths great vision was to empower disabled people into work.  Maybe I should let them take the reigns and empower my son, anyone got their number?

Meanwhile this sketch is the only way I can explain the system to my son, its visual so it helps.


Friday, 9 December 2016

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 28th 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. 


Saturday, 20 August 2016

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.

Saturday, 9 May 2015

Exercising restraint.

My young man has got rather into politics.  Democracy was on the school syllabus whilst he was hopping around at home. One Monday, as we joined his class at a local library (no stairs involved) he picked out and brought home a book on British politics. He opened it randomly, read it and asked me what a civil society was, this is what it said "The aspects of social and economic life (primarily voluntary associations and private organisations) that are outside the control of the state. A strong civil society based on a large number and wide variety of private associations and organisations is thought to be the basis for democracy." it also said "it is noticeable that one of the first things dictators do when they come to power is try and get control of voluntary organisations, knowing they are dangerous basis of the struggle for freedom and democracy." 

As if someone was whispering in my ear.

I've started my new job for a local charity that supports parents of children with disabilities.  I'm also going through the process of getting my sons statement transferred to the new EHC plans.  There goes that whisper again.  "So that children and parents can spend more time doing other things"  It took me 11 hours to sit down and re-write my sons plan and I had to do it at the weekend now that I'm working.  My son wasn't happy that I had to shut myself away surrounded by paperwork, guidance and a laptop.  Then I remembered the reporters face and his slicked back hair, tucked in shirt and friendly camera man who was amazed as a Lancaster bomber flew overhead on route to a local airfield. So I looked back at my blog  "Bumped" in 2011 when the government was consulting parents on the SEN reforms.  This document will tell you all about it: (and there's a nice picture of Mr Gove) 

Myself and young man appeared briefly on TV talking about our experiences with the old SEN system and how I'd like not to have to fight anymore.  The journo finished off the piece with that line "So that parents and their children can spend more time doing other things" cutting to a scene of myself and my young man playing chess.

All those years ago under the old system it took up two years of my life to get a statement of SEN and the support he needed.  It's been six months so far and we're not there yet, the stress is the same, no different and it already feels like pulling teeth, not quite got to banging head on the wall yet. In the above document it says:

This Green Paper is about all the children and young people in this country who are are disabled, or identified as having a special educational need. It is about their aspirations and their hopes. Their desire to become, like every child and young person, independent and successful in their chosen future, and, to the greatest extent possible, the author of their own life story.
Four years later and the question is has the new system managed to achieve this.  I'm having to exercise restraint. I have to believe that all partners are striving to achieve it and that they are not entrenched in old ways of working and that there has been a culture change. 

My case worker thanked me for all the hard work I'd put into re-writing my sons plan as it was a very difficult task and he had many to write up.  I have some sympathy for him and his colleagues this is new to all of us and everybody seems confused and under resourced. 
My new job is to be a critical friend and it helps me to refer back to that randomly picked part of my sons chosen British Politics book. I have to exercise restraint.  Last week I had four meetings back to back that went like this: parents view, LA's view, parents view and LA's view.  This will hopefully result in partnership working by introducing them to each other and a better outcome for our children.

But it won't stop the whispers.

Friday, 13 March 2015

Don't go saving dinosaurs.

I’ve had hard weeks before but his week I’ve found myself sitting on benches in the woods mumbling to myself and trying to stop the tears.

I hate it when that happens, it’s worrying because I know I’ve got to the point of not coping.

A fractured ankle doesn’t sound too bad does it?  When I drove him away from Youth Club he screamed at me every time we went over the smallest of bumps, he has a high tolerance for pain.  It took a while to get pain relief. We sat in A&E for a while, he was very vocal about the pain, the air was blue in a volatile place.  It’s hard to scold someone that looks like a man who should know better.  Doctors and nurses don’t ask me questions anymore they’re directed to the adult sitting next to me.  Puzzled looks follow.  I explain and everyone feels awkward.  

It’s been three weeks now, leg in plaster, not allowed to put weight on it so he’s hopping around on crutches.  I can’t sweep him up and plonk him on my hip when he gets tired anymore.  When he loses his balance I’m there beside him, behind him and in front of him ready for him to grab on to. So far I’ve not gone over with him.  Co-ordination, concentration and patience were never things that came easily to him.

His classroom is on the 5th floor and the schools lift has broken, we’re managing two mornings  a week in a downstairs classroom.  I’m home schooling which I’m actually enjoying, that’s a turn up!  I got a new job but I can’t start it just yet, it pays this time too.  It takes us until 11am to get ready, the whole showering, dressing and getting ready routine takes so much longer, it’s usually long but this is quite epic. Then I go off into the woods with the dog leaving him settled for a while.  

I think maybe its exhaustion; physical and mental and frustration that hardly an inch of the day is mine alone.  Time with dog is ok but he’s not great with conversation.  I’m trying to sort out the EHC plan, ha, well actually I’m starring in the mirror saying “I told you so” You need time to chase people and space to talk to them on the phone, that just isn’t happening.  My current role is still pulling at my sleeves and I’m trying to grab a few moments to catch up.  It’s the dates, the meetings, the things that I should be doing and my head just isn’t able to focus because of constant demands.

I’ve been ill too, a cold that I cannot shift and a permanent headache, I wish I could take the day off, drink lemsip and sleep.  Then there are the things I cannot say here that are deep and dark and personal, they don’t step aside to help me cope they are my constant companions.  

It’s world autism awareness week very soon and I should be organising things and sending positive messages, you know -having fun with it. 

Sorry folks it’s on hold.  

But…..there are hundreds of children who have autism that are not in school, who parents are barely coping and get no respite.  This period will end for me, I can see the light.  So if you want to do something for world autism awareness week write to your locally elected representative and tell them that there is not enough provision for children, young people and adults with autism and that you think it’s unacceptable.  Just one little letter with us in mind.  It’s better than signing a petition regarding a dinosaur who presents a program about cars isn’t it? I mean honestly it is.

Friday, 2 January 2015

Old stuff

Recently, well about time really, a fellow parent chucked a load of old paperwork and information back in my direction.  She had taken the reigns for a while but had to stop two years ago due to the system that is SEN being so ridiculous and underfunded that it couldn’t provide an education for her son, and still doesn’t.

Digging through the boxes I found a DVD that dated back to 2008.  I had won a short story competition after launching our local group and we were awarded the opportunity of being filmed talking about what we do. I’m not brave enough to share it on here and it has lots of other people on it too which wouldn’t be fair. I looked totally knackered, older than I do now if that’s possible.  My son would have been 11 then and it was a difficult time.  He was suffering from terrible anxieties, wouldn’t leave the house and his special school was failing him.

I talked a lot in the film about campaigning for change and about trying to improve the situation for individuals with autism and their families by making the powers that be, both locally and in Westminster, aware of the impact of their policies and decisions.  

Now, today, in the wake of the financial crisis and SEN reforms it seems a fruitless endeavour.  We still have a system where parents of children with disabilities need the law and tribunals to ensure that their children get the help that they need.  That’s sick.  Even sicker now as we’ve been telling them how sick their system was and making them aware of the difficulties and despair it’s been causing.  They can no longer say “we didn’t realise”  

So I’m faced with a decision where the hope has been removed.  I can no longer hope that the system will change to improve our lives, that governments will put in sufficient funding to provide the education and therapies that our children need.  You could argue that with the election coming up there is an opportunity for change.  Nah, same old same old, whichever colour you choose.  Local authorities are still blaming the lack of funding that they get from government and government are still blaming local authorities for having enough but not using it wisely.  Do I really want to sit and watch this futile game of tennis continue, backwards and forwards again and again?   What it always boils down to however is the calls for help, the looks of distress and isolation, the mess that the sickest of systems leaves behind.  It would take a cold heart to walk away from that.  I know what our children can achieve with the right support, I see it every day and it amazes me.  
Just before Christmas an Educational Psychologist told me that my son would always have difficulties. (the old acceptance card again and I told her I had reached that realisation some time ago) That was her response to my request for Speech and Language therapy to continue to support my son with social interaction and social communication at his college placement in September.  What she was really saying was; “it’s expensive, he’s always going to have difficulties so why bother”.  I could have said “I see your point, ok then forget it.”  I could have rolled the dice and hoped for the best.  If he doesn’t cope it’s probably just as well, he can sit at home for the rest of his life and claim benefits rather than get a qualification, confidence and gainful employment.

The awareness that needs to be spread now is to the families more than ever. To make more parents aware, to silence the misinformation and end the silence of no information.  It may take more time than I have patience for.  Maybe it’s back to work blues but I do feel a little weary and more inclined to spend time enjoying watching my young man flourish and to step away from the battles.  It’s a difficult decision and I've enjoyed the break.