The Paralympics - Hot Potato?

Olympic fever spread throughout the UK earlier this month. Even people who had been adamant they had no interest in the Olympics were carried along on the crest of a feel-good wave by our amazing athletes. Their sheer determination to bring home the good and the feeling that at last Britain had something to feel good about. We were basking in virtual sunshine if not the real thing. Facebook was awash with posts about the athletes, their victories, their emotions and the sense of pride that we were all feeling. More than one person posted that what we were seeing was the best of Britain and we probably were.

Fast forward a couple of weeks to the Paralympic Games. The Paralympics should have seen us all standing shoulder to shoulder again being carried along once again by our feel good wave. Sadly for some of us at least the Paralympic Games have been tarred by the fact that Atos, the company employed by the Department of Work and Pensions to carry out the Work Capability Assessment on adults with disabilities, is one of the major sponsors of the Paralympic Games.

Many people with disabilities feel that having Atos as a major sponsor of the games is rubbing salt into wounds. Neither the Olympic nor the Paralympic Games should be political. Sadly the Paralympic Games have become just that.

We cannot blame the Government for agreeing to Atos sponsoring the Paralympic Games but you have to wonder why the Paralympic Association thought that they could agree to Atos sponsoring the games without there being any concerned comments from disabled people. We are being told that we should be feeling inspired by these games when in fact the games are actually making many people with disabilities feel even more threatened than before.

Those feelings were made worse by the fact that David Cameron was allowed by C4 to speak just before the opening ceremony. His words could have come straight out of the Atos handbook. Or did we just think that because we now associate David Cameron with someone who has it in for people with disabilities?

Speaking about the Paralympic games David Cameron said "It's going to change people's minds about disability and it will teach people to ask what people can do rather than what they can't do. The Paralympic athletes overcome disadvantages and then go on and do really amazing things."  

Can we please be realistic about the athletes who are taking part in these games? What we are watching are the elite of disabled athletes. Disabled or not these athletes are no different to elite athletes who compete in any sports. These athletes did not wake up one morning and ask for a place in the Paralympics. Just like the athletes who took part in the Olympics they have been training for years and money has been invested in their training. Money that most disabled people will never have access to.

The majority of disabled people are no more capable of becoming Paralympians than any one who is running for a bus is capable of competing against Usain Bolt. Success is relative to every single one of us and how our lives are playing out. For some people with disabilities making it out of bed every day means that they have successfully competed with their own body and won their race.

Some people with disabilities will simply never be able to overcome their disability no matter how hard they try or how much they want to. We have to be very careful not to make them feel bad about what they cannot do. It is morally wrong to focus on what people with disabilities can do without paying any attention to the things they cannot do through no fault of their own.

Of course we must celebrate all of the things that people with disabilities can do but that does not mean that with a little more determination they could all become fully functioning, fully employed and fully independent members of society. (No matter how much the current Government might want to believe and want us to believe they can.)

We are now in a situation where adults who are receiving Employment Support Allowance are terrified of saying that they can do anything without fear of retribution from Atos when their time comes to be assessed. Next year we will see adults with disabilities having to be assessed twice when Disability Living Allowance is replaced by PIP. Many will find themselves being assessed for the second time by Atos.

Now is not a good time to be living with disability, either for those with the disability or their families. This is especially so if the child or adult has a hidden disability. While the Government continue to profess that all things are possible for everybody including those with disabilities if they just try harder, and while the media happily publish story after story about benefit scroungers and malingerer’s, people with disabilities are the ones left trying to survive the continual onslaught from the Government, the media and members of the public to.

Campaigners continue to campaign against the Work Capability Assessment stating that it is not fit for purpose. The assessment cannot to accurately assess the functionality of adults with autism and other disabilities.

We should not be using the athletes who are competing in the Paralympics as a measurement or yardstick of success and triumph over disability. Nor should we be holding them up as an example of what people with disabilities could do if they put their mind to overcoming their disability.

Society now views disability in a very dim light. Will the Paralympics do anything to alter that view or perception of those who we should really be protecting?  Act Now for Autism thinks not. In fact if anything we think it could cement the view that people with disabilities could be doing more for themselves instead of simply sponging off the state.

There is speculation that the Team GB athletes who are competing in the Paralympics hid their Atos branding on their passes during the opening ceremony of the games. It would be lovely to find out that they did in fact do this in support of those who like them are facing a lifetime of disability.

The debate about the Paralympic Games will probably continue throughout the games, which is extremely sad when the games should really be a celebration of those who have trained so very hard to compete in.

When the celebrating appears to be at the expense of other people with disabilities, it does leave a bitter taste in the mouth.

It's Not What You Know...

Champion: (n) a person who has defeated all opponents in a competition or series of competitions, so as to hold first place. (v) Support the cause of; defend.

Across the UK the term ‘champion’ is a new buzz word. When New Labour were in power we had a Tsar for everything, under the Coalition Government champions of this, that and the other are popping up everywhere: mental health champions, carers champions, champions of justice, autism champions and Mary Portas as champion of the High Street!

It’s clear the old pal’s network is alive and well across the UK in politics and through the fringes of political life when it comes to who gets to be a champion. It’s not what you know but who you know.

The decision makers like to let us think that legislative changes often come on the back of public consultation or by us speaking to them and sharing our experiences. Yet policy change rarely is following the opinions of responders or by politicians listening to us but rather it is shaped by ideology, party policy. 

This week in Scotland, the Shadow Labour cabinet announced the appointment of a carer’s champion. The champion is someone who has developed close links with the party leader in the last year, she wasn’t nominated by party members or by a carers group/organisation and neither was she voted for by a group of peers or by a ballot.

Sort of stinks doesn’t it given her close links to the party? Carers are more stressed and anxious than ever before with cuts across the board and changes to ESA rules, Tax Credits and DLA all looming. The carers champion is obviously a carer herself but has no background in politics or in depth knowledge of policy making. She will need to hit the ground running if she is to represent the 660,000+ carers across Scotland – or to “support...defend” carers. Can she alone speak for those carers; can she really have any idea what it’s like to live their lives? Does she really have the ability to ensure the message is heard and show insight into the policy and legislation impacting on the lives of those who care for someone – does the Scottish Labour party care if she can?

The ruling SNP party have also declared that all LocalAuthorities under its control will appoint a carers champion, an "officer sitting at strategic level". (Whatever that means!) All carer’s champions will have to rely heavily on testimony from carers themselves, carers who have been sharing their stories with politicians for years already, stories which often appear to fall on deaf ears. 

In England many council’s have volunteer carers champions too, to help "shape policy at local level".  

Do you know who your local carers champion is? 

Let's not forget, there are an estimated 6.4 million carers across the UK, saving the country £119bn per year in care costs, equivalent to £13.6m every hour.

So now there are middle-men, more middle-men once you factor in PA’s and admin staff scanning and vetting messages.  How then do we actually communicate effectively with the people we vote into such an office and who do or will they actually listen too?

In Scotland, a carers champion was mooted to be about scrutiny of decisions at the highest level and the impact on carers. Somehow this seems to have been misunderstood or interpreted in different ways in the case of Scottish Labour. The original idea was for MSP’s to do the work, getting politicians thinking differently, thinking about impact of decisions in education for example on families, which in turn might place greater demand on social care or health - like the model used in England. The point of a carers champion was to put someone with an interest in carers at the heart of policy making – but can one 'lay' champion influence the very heart of policy making? 

The politicians will be able to say “you got your champions and your carer’s councils and parliaments like we said you would”. The question is what will change as a result of these initiatives? 

The jury is out. As yet many of these posts are yet to be filled and with budgets being slashed will the lives of the “unsung heroes”(carers) really be at the top of the agenda when budgets are decided?

Across the country we hear from people on their knees, who haven’t had a carer’s assessment and are in utter despair before any help is offered, if at all. The politicians know this is happening already but hey, we have carer’s champions now so everything will be okay! 

All of this is costing money, at a time when valuable services and charities are disappearing. Okay so we have to give this a chance but campaigners nationwide will be watching, very carefully.

Actions Speak Louder Than Words

This week two documentaries were aired giving a disturbing and informative insight into the Work Capability Assessment. After watching both programmes Act Now For Autism believes that it is now time for the national charities who have been in talks with the Department of Work and Pensions to walk away - especially given the planned timetable and targets.

Viewers were left reeling after watching Dispatches and Panorama, made worse as the Atos assessor filmed training potential assessors described the WCA as "toxic".

We have long believed and repeatedly said the WCA is not fit for purpose as a tool for assessing autistic adults. We have testimony from people across the UK giving a clear indication of the damage this flawed process is inflicting.

Professor Harrington (the man in charge of reviewing the Work Capability Assessment for the DWP) is standing down from this role in November. He has previously called for an overhaul of the process to make it more "fair and humane". We know the DWP and Ministers have refused to budge as it would be too costly to implement the overhaul to descriptors.

The fact that Professor Harrington is standing down throws up new concerns - is the Coalition Government starting over with a process that has been under review for three years? Is this in fact just another stalling mechanism to enable this Government to substantially reduce the number of adults with disabilities who are claiming Employment Support Allowance?

Paul Farmer, chief executive of the charity Mind, quit the monitoring panel citing the process as "deeply flawed". He was clearly frustrated that the government was not paying attention to the growing chorus of alarm over the reliability of the assessment. At the time it was reported that his departure from the panel reflected the intensifying anger amongst some of the national charities at the Government's commitment to reassessing approximately 1.6 million recipients of incapacity benefit as it was phased out and the changeover to ESA was implemented. 

 

We held our breath like many other campaigners, we thought others would follow, we hoped other charities would take a stand - none did. Most remained silent and continued as before.

 

Maybe the time has now come for the other charities to leave the building and close the door behind them on the way out. Surely the testimony of thousands of people across the UK is enough evidence that it's time to stand up for the very people they represent?

If "we're all in this together" surely our representative charities should stand alongside us?

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?"

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...

DEVASTATION...HOW DO WE GO ON? 

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."

My Life With Autism

Debbie has written a few guest blogs for us before, which were insightful and moving and this one is no different - have your tissues at the ready!

"Sign it, Say it, Sing it

Aged one, Matthew could sing. 

He couldn’t really sing the words, but could hold a tune beautifully.  His favourite song was The Wheels on the Bus and he'd hum away tunefully to himself while spinning the wheels of his toy cars.  After bath time we would always sing Twinkle Twinkle and Baa Baa Black Sheep while settling him down to sleep.  He could join in with the tunes and it was a joy to hear.

Aged two, Matthew stopped singing.

Sometime after Matthew's second birthday, in amongst the turmoil of the endless waiting for appointments, the repeated answering of the same questions, the sleepless nights and the desperate hope that it was all a mistake, I noticed that he was singing less and less.  In time Matthew had stopped singing altogether. 

I am a music lover.  I guess most people are.  Music is, for me, the background of life, constantly there in its many, many forms.  And Matthew loves it too.  He has always responded well to music, from classical to dance to nursery rhymes and most things in between.  But before Matthew was three he had learned, and then seemingly forgotten how to sing.  This was one more blow, a soft but meaningful blow at a time when they were raining down.

Song provides one of the best and most enjoyable ways to learn.  If we know the tune, the words stick too.  We remember and understand.  So song is, of course, extensively used by parents, speech therapists, play workers, nursery staff, school staff and everyone involved in helping our children to learn.

 And although no longer singing, Matthew never stopped responding to song.  Songs became an integral part of the strategies that we learned to enable and encourage Matthew to communicate.  Reward an achievement with a favourite song.  Sing a song after Matthew has co-operated with getting dressed.  Encourage him to use PECS (Picture Exchange Communication System) to request the songs he loves.

Anyone who knows Matthew will know that he enjoys food at least as much as he enjoys music, so of course food was, and remains, a huge motivator for him, and we have utilised his love of food in exactly the same way.  But that’s another story...

One of the excellent strategies given to us by speech therapy was to sing a favourite song and stop before the last word to encourage Matthew to fill in the blank.  He began to communicate his desire for the word to be sung by eye contact, gesture or even vocalisation.  Communication in any form is wonderful.  At some point along the way, this ceased to be a strategy.  It became the natural way to interact, always pausing, always withholding something to give as a reward for communication.  And in turn, Matthew would reward us with fantastic eye contact, his own particular gesture, vocalisation and even, on joyful occasions, the word.  But never the tune.

Matthew’s lack of singing caused me a niggling pain over the years.  Never overwhelming, but always there.  He used to sing so well, perhaps one day he would sing again.  I have learned over the years to always hope, never expect.  And so it was with singing.

From the age of three, Matthew was using PECS as his main form of communication.  He was also exposed to Signalong, which is a very simple sign language.  Signalong is used by professionals working with children with additional needs here West Lothian.  It reinforces the spoken word and children who struggle to communicate verbally can often pick it up readily.

Aged five, Matthew was making certain gestures and these turned out to be the actions to songs.

Aged seven, Matthew’s repertoire of signs suddenly expanded and he could soon do the actions to many songs.

Signalong became Matthew’s preferred method of communication. I attended Signalong classes in order to keep up.  I was often describing gestures Matthew had made in his home-school diary to find out what he had been requesting. But he didn’t stop at requesting – he also began signing to point things out, to tell me things. Now, when I paused during songs, Matthew would sign the next word. 

Aged eight Matthew’s speech began to develop. 

I believe that signing was a significant factor in Matthew beginning to speak, as it really showed him the power of communication.  He still uses signing along with his speech and if I can’t understand the word he is saying, I can usually understand his gesture.  As Matthew’s spoken vocabulary expanded, he began to say the next word when I paused during his favourite songs.  He could request a song he wanted to hear verbally.  But he still didn’t sing the tune.

Aged nine, Matthew is singing again. 

I do not know how he learned to sing again.  But gradually, signing and speaking the words has become singing the song.  He is always in tune and so I always know what song he is singing.  I can sing along him to help him to learn the words.  He sings away to himself all the time and his repertoire is expanding rapidly.

And I cannot describe the joy I feel every time I hear Matthew sing.  It is the most beautiful sound I have ever heard, and well worth waiting seven years for.  The best things are always worth the wait."

My Life With Autism

We are always happy to publish guest blogs from our supporters around the UK. These are people living with autism who want to share with you a little about their life. Here Julie-Anne talks about her son Paul: 

"Paul was born in 2001 in Antrim hospital N.Ireland after a horrendous 30 hour labour and an emergency caesarean, he then spent the first week of his life in the special care baby unit with congenital pneumonia and a heart murmur. He then was taken back  into hospital at 4 weeks old with severe chest and breathing difficulties. At one point his heart stopped and he had to be resuscitated.

Paul then spent the first 7 years of his life in hospital on a 3 monthly basis with severe breathing difficulties. He didn't walk or talk until he was 2 years old and was allowed to start nursery at 2 to overcome and help with this. We were living in N.Ayrshire at the time.

Paul had a speech therapist until he started p1 and was always different from other children as he was very reserved and easily upset.

We moved to West Lothian when Paul was half way through p1.

Paul was constantly getting into trouble when he was at school for either not joining in with activities or becoming upset and having tantrums and we never knew why. In p4 Paul was referred to the Educational Psychologist on my request for observations, I was told that he was fine and there was nothing wrong with him and he was referred to a Speech Therapist to help with his language skills.

One day when Paul and I were at the Speech Therapist she asked me if I would mind if she referred Paul for testing as she thought he had autistic traits. I was very surprised and shocked at this as my idea of Autism at the time was the film Rainman. However I agreed to testing and a few months later after several visits to different doctors and specialists and a lot of form filling Paul was diagnosed with Asperger's.

I was very shocked and a little relieved at this as I now knew why my son was different from everyone else but I also felt like it was a case of 'here is your diagnosis now go and get used to it'. I would have preferred some support as I have no family near me.

The school when they were told of Paul's diagnosis took it with a pinch of salt and never offered us any additional support for Paul and told us we weren't entitled to any.

I then discovered a support group for other parent's like myself and discovered that yes we were entitled to help and support and I have been battling ever since for this.

In the past year Paul has overcome a few educational obstacles with the help of Autism Outreach and a few meetings with the Outreach team, the school and myself and  is now allowed  to use a laptop for extended writing and is also allowed to stay indoors at playtime if he wishes.

Paul is now preparing for his final year at primary school as he will be into p7 after the summer and has been identified for an Enhanced Transition and so the school, the outreach team and myself are working together to ensure we do all we can to help his Transition go well. I find this much easier than a few years ago as we are all working together on the same path to help Paul be all he can be.

I am hoping he get's the help he needs when he starts at the high school and he continues to do well."

Some Exciting News From Act Now For Autism HQ!

We are absolutely delighted that one of our co-founders (and core group member) Anna Kennedy is on the Queen's honours list and will be awarded an OBE for raising autism awareness and setting up education and care facilities.

Anna has worked so hard over the years for the autism community. Whilst caring for her two autistic sons she founded and continues to run Hillingdon Manor and Baston House School. Anna and her team have created the largest range of specialist facilities in Europe and she continues to strive, she recently produced a DVD with legendary Pineapple Dance Studios (Step In The Right Direction) and last month she produced the amazing Autism's Got Talent show.

Here's what she said about getting her OBE: 

"Obviously I am honoured and my love for my sons and husband has kept me going. I hope to use this award to springboard improvements and changes in the world of autism and I will accept the OBE on behalf of all families who are affected by autism."

Congratulations Anna - we are very proud of you!