Sunday, 15 July 2012

Carole Asks Ed Miliband About The WCA.

Act Now For Autism campaign manager Carole Rutherford has summarised here her discussion with Labour Leader Ed Miliband about the Work Capability Assessment: 
"I was given the opportunity to take part in a question and answer session with Ed Miliband on Friday evening at a pre Durham Miners Gala event. Never one to let an opportunity to open my mouth go to waste I decided to attend along with my husband!

Gathered were approximately 100 people who all wanted to ask Ed a question, he gave a very brief speech and then got down to the reason we were all there.

I only waited about 20 minutes before I got the opportunity to ask him a question: will the Labour Party do something about the Work Capability Assessment, which is creating immense anxiety and stress for adults with autism who have to have a face to face assessment?

I backed my question up by telling him what the mere thought of an assessment has done to the eldest of my two autistic sons. The knowledge that he has to have this assessment has impacted so badly on my son’s mental health that we have had to seek medical help. (I also pointed out that it took us over a year to find that help.)

Ed then asked me a couple of questions about my sons and our situation which I was happy to answer.

I was very fortunate that he was willing to listen me tell him that there are thousands of families across the UK who are living the same lives as we are. He listened carefully to my list of concerns about the WCA assessment and how it is impacting on the lives of adults with autism. I pulled no punches, telling him that we at Act Now for Autism are hearing from adults across the UK, some of whom are on the brink of a breakdown; some would rather do without their benefits than ever have to have an assessment again. Some have said that the assessment has brought thoughts of suicide and fear into their lives.

I then spoke about the number of decisions regarding the WCA that were being overturned at tribunal. I stressed that the hidden cost in all of this was the emotional well-being of the adults who are having their lives turned upside down by the process. Even if a decision is overturned at tribunal we are hearing that Atos are reassessing adults within four months of them winning their appeal, which means that we have adults with autism living in a permanent state of heightened anxiety.

I stressed that the WCA is simply not fit for purpose and said at the very least we should expect that the tool which is being used is actually fit for purpose. Adults with autism have substantial difficulties with both communication and socialisation and yet advocates are not being offered as a matter of course at the very beginning of the process. I said that from next year adults would be subjected to a Personal Independence Payment assessment as well as the WCA and this was also causing great concern within our community - it will be too much.

I then returned to my question and asked what Labour would do about the Work Capability Assessment if they were returned to power? Ed Miliband said they will have to look again at this assessment as they are hearing too many times that there is something wrong with it for there not to be something in what they are hearing.
I think that this was as much as I could hope for at an informal question and answer session.

I then took the plunge to speak again and I said that many of us feel that we have been demonised by the press. I said that a way had to be found to differentiate between people who do try to play the system and those who have lifelong disabilities. Mr Miliband responded by saying that Labour will have to challenge rhetoric to ensure that everyone is not seen in the same light.

I do feel as if I was listened to. I did not expect any firm promises but I do think that we now have something that we can pursue with the leader of the Labour Party: what exactly will he and his party do as part of looking again at the Work Capability Assessment?"

Saturday, 14 July 2012

My Life With Autism

Thank you to Cara for sharing more of her journey with us, this is a moving account: 

"Rewind 12 years, I'm pregnant with my first child, terrible pregnancy, sick from day one even and sick in labour. I lost nearly 4 stones in weight, thought I was dying, horrendous 47 hour labour, high forceps delivery, NEVER AGAIN... although Megan was the most amazing thing I had ever seen and the love for my first born...there are no words.

Fast forward 2 years 9 months and I am BROODY! So we decide to try for our second, WOW, within a month i'm pregnant... delighted but terrified... great pregnancy, no sickness everything going well. Quick labour at 36 weeks, so fast I'm only in hospital 25 mins when Daisy arrives. Text book delivery, they lay her on me then all hell breaks loose, she's floppy, not breathing, they take her and run, 2hrs of torture follow before a consultant comes and utters the words "I'm sorry your baby has a Congenital Diaphragmatic Hernia, we don't expect her to pull through". COMPLETE AND UTTER SHOCK... I WANT TO GO HOME...
My little fighter survives the odds and had 2 major surgeries before she was 10 days old before being transferred to Yorkhill Hospital (Glasgow) for ECMO. She survived, then survived organ failure followed by 12 weeks on life support, dialysis, septicaemia ,transfer back to Sick Kids in Edinburgh and then another 5 months in hospital. We got her home on oxygen and tube feeds aged 7 months 2 weeks, WOW we made it! Lots of meds and appointments but we are a family again.

Fast forward 12 weeks and we're back in hospital battling again. Poor baby, she has been through so much and spent her 1st birthday in hospital. 

10 days later we had to make the hardest decision ever - to let her go...


MEGAN - that's why we go on, our reason.
NO MORE BABIES FOR US. So I'm minding my own business getting on with life as best I can, looking after Meg and Gary, plodding on in a daze. I feel ill, and put it down to stress. It must be...

Then I feel a familiar feeling in my tummy... movement...NAH wind.... 

Hmmm...maybe need to do a test... IT'S POSITIVE..OMG... how far on am I? Then scared as I know I've not had a period for 5 months, but thought it was stress...eeek!

So our little rainbow was on her way... apprehensive, very excited... oh yes, my arms were empty, I needed her.

Nov, 1 year and 4 months after Daisy, Ruby made her grand entrance. A beautiful healthy little baby and I was taking this baby home... beautiful Ruby, named after Daisy's birthstone PERFECT. 

Hubby kept saying, "are you sure she's ok"? She's fine I would say. He said "she's blind she doesn't look at things", I dismissed it. Then she wasn't meeting her milestones, didn't talk, didn't walk til 22+ months, time to seek advice from my wonderful health visitor.

I already knew Ruby was autistic, I just knew. Referrals to SLT and child health followed , diagnosis of autism was quickly given. Now I feel isolated, I didn't feel sad or angry though, I felt relief. I never have shed a tear over her diagnosis, I'm just relieved she is healthy, I can't mourn my child who is living I just feel grateful shes mine. 

I do find it hard being in this situation, I know I'm controversial but actually there are worse things than autism. My baby is 5, non verbal has violent tantrums and gives us what for but I'm actually at peace with my lot. 

Sometimes I wish for a normal reaction to the trials of autism, I'm not hard, I fight for my girl with every part of me it's just I don't seem to feel the devastation of it all... 

I worry one day it'll hit me...I hope not."