Friday, 31 August 2012

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.

Thursday, 30 August 2012

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? 

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.

Friday, 3 August 2012

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?