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I n a previous life, I worked as a welfare rights adviser and eventually managed free legal advice services for carers and disabled people living in one of the poorest London boroughs.  Much, much of our work involved resolving problems with claims for Disability Living Allowance (DLA).

In my time I have been to tribunals for a woman with breast cancer who was undergoing chemotherapy (her condition fluctuated), a boy with ADHD who was in danger of causing significant harm to himself or one of his younger siblings if he wasn’t supervised all the time (his GP was an ADHD sceptic and gave him a vague report), a diabetic baby who needed blood tests every two hours and insulin injected accordingly (the decision maker argued that this was not significantly more care than you would have to give a baby of the same age), a housebound woman with arthritis and high blood pressure who used to pass out on her way to the loo at night (she had tried to put a brave face on during her medical assessment), numerous people with non-specific pain issues, numerous children with emotional and behavioural problems who don’t have a label (yet).

I also used to train volunteers in completing the forms.  Completing the forms was arduous, taking at least 3 hours at a time.  It was emotionally draining as it focused on what the person couldn’t do, not what they could.  It was repetitive.  The forms had to be signed by a professional, the professional would have to know the person well and the professional would need to know how to put things in the right way so that the decision maker would understand the extent of the difficulties.

The disabled person would have to include the name of any other specialists they had seen and the DWP would often write to them to get a report from them.  Disabled people would have to photocopy reams and reams of paperwork including statements from school, cardiology reports, psychology reports etc.

Most disabled people would have a home visit from a Dr working on behalf of the DWP.  I have seen it written on such a report: ‘Mrs  X was able to make me a cup of tea’!!!  The Dr would spend a very short amount of time with the disabled person before submitting their report and would often make judgemental statements about the housing conditions and so on.  In my experience, they often got it very, very wrong.

Ordinarily, I would be dancing a jig at the news that the government are planning on getting rid of the forms (although it seems this is now vague, and the initial forms are likely to remain as the first ‘filter’ for claims).  Those bloody forms are the bane of the lives of any disabled person, or any person caring for a disabled person.

I’m not dancing a jig though.  I’m really worried.  I find George Osborne’s words chilling:

That brings me to another universal benefit, Disability Living Allowance.

Mr Deputy Speaker, it is right that people who are disabled are helped to lead a life of dignity.

We will continue to support them, and we will not reduce the rate at which this benefit is paid.

But three times as many people claim it today than when it was introduced eighteen years ago.

And the costs have quadrupled in real terms to over £11 billion, making it one of the largest items of government spending.

We will introduce a medical assessment for Disability Living Allowance from 2013, which will be applied to new and existing claimants.

This will be a simpler process than the complex forms they have to fill out at present.

That way we can continue to afford paying this important benefit to those with the greatest needs, while significantly improving incentives to work for others

This is so breathtakingly ill-informed I’d be disgusted if a backbencher said it, never mind the Chancellor of the Exchequer during  a budget!

First off, DLA was introduced as a compensation to disabled people because they have a higher cost of living (and quite honestly, often ends up going to straight back into the coffers via charging for social services).  It is not an earnings replacement benefit, it stands alone!  It is not means tested or taxable and disabled people who work are able to continue getting payments.

Given that The Shaw Trust found out that between January and March 2009:

  • There are currently 1.3 million disabled people in the UK who are available for and want to work, that only half of disabled people of working age are in work (50%), compared with 80% of non disabled people
  • Employment rates vary greatly according to the type of impairment a person has; only 20% of people with mental health problems are in employment
  • 23% of disabled people have no qualifications compared to 9% of non disabled people
  • Nearly one in five people of working age (7 million, or 18.6%) in Great Britain have a disability
  • The average gross hourly pay for disabled employees is £11.08 compared to £12.30 for non disabled employees.

I think it would be fair to assume that disabled people are still experiencing a degree of discrimination in the workplace.  This needs to be tackled before cutting off disabled people’s money.

Further, the only benefit which is available to full time carers, Carers Allowance – paid at a woeful £53.90 per week, hinges on the disabled person getting either the middle or higher rate of the care component of DLA or Attendance Allowance (DLA for the over 65s).  Carers save the treasury the equivalent of a second NHS. If carers are forced back to work because their benefits stop, who provides the care to the disabled person?  The state.  I can assure you that this will cost far more than £53.90 per week.

According to Carers UK research, it takes carers an average of two years to identify themselves as a carer.  Carers are often isolated, and their own health suffers as a result of their caring responsibilities.  They are not caring for the sake of a bit of extra cash, many of them have to chose between food and heating.  They are caring because they love the person they care for.

It has since been reported that George Osborne is hoping that 1 in 5 claims for DLA will stop as a result of the new regime.  As he said in his budget speech, payments of DLA have quadrupled since it first began.  What he didn’t say is that the Disability Rights Commission estimate that between 40-60% of people who are entitled to DLA do not make a claim!  They either have not heard of it or do not think they would be eligible.

Around 50% of DLA claims are turned down.  Of these, around 50% go to tribunal, and most people win tribunals.  What does that tell you?

Of course there are people who claim benefits that they are not entitled to, but in the case of DLA, the bar is set so high, that it is actually really difficult to fake entitlement!  Unlike Incapacity Benefit, which by the way, does have a personal capability test, it is extremely rare to find cases where the DWP have wrongly assessed someone as needing DLA who doesn’t.

The new approach to DLA is going to hit some groups of disabled people much harder than others.  The mentally ill, those whose conditions fluctuate, those with hidden disabilities, those in denial about their condition.  I know this because I have seen it. I know it, so why doesn’t the cabinet?

Osborne closed his speech with these words:

The richest paying the most and the vulnerable protected. That is our approach.

I don’t believe that.  Do you?

We’re back!

We can’t keep quiet any more! We’ve had a break in posting over the last few months, but its time to shake off the cobwebs and open the windows. Coalition government is upon us, and the pace of announcements coming out of Whitehall is astounding. Watch out for our reactions and thoughts over the next few weeks and months, as the impact of our new masters hits us where it hurts – education of our children, health of our loved ones, and of course the bank balance. We’ll look out for the good stuff too of course! Hopefully it won’t all be doom and gloom.

The general election has finally been called – in just one month we’ll be putting our x’s in the box.

I’d intended for some time now to write a post about the importance of voting and was going to do so this morning but I found a link to this in my twitter feed before I got round to it, and the bright women have put it so much better than I ever could, so please read it, and please vote in the election.

I will also add that I asked my father to vote by proxy for me in the ’97 election.  He wasn’t going to vote until he found himself in the booth with both cards in his hand.  We both voted Lib Dem (tactical) in Winchester where the Lib Dems won their seat by just two votes.  That was us!

Someone’s Son

The case of Gary McKinnon, the British Hacker facing extradition to the USA still rumbles on. I confess to a degree of scepticism when I first read about the case. McKinnon was subsequently diagnosed with Aspergers Syndrome, a form of autism 3 years after the alleged crime and I cynically wondered whether this label had been acquired in the hope of mitigating the situation?

My interest in McKinnon was piqued as my own son is autistic, otherwise I would have given this story no more than a passing thought.  Was this an individual using a conveniently acquired retrospective diagnosis to wriggle out of the misdemeanour they had committed, a slur on those who are genuinely are affected by this condition, tarnished by association? Yet the more I read the more sympathetic I became. It transpired this was a man who had had difficulties for years masked by intellect and passive behaviour. Was this vulnerable individual really trying to mount a cyber terrorist attack or was it simply the result of an misguided autism-driven obsession? His mother is not asking that he escape justice, rather that he is tried in British Courts with any sentence served in the British penal system rather than the American Courts which have poor track record regarding mental health and autism. There is a high profile campaign running which has the support of the media, celebrities, politicians and even Sarah Brown. All to no avail, the Home Secretary still states that McKinnon must be deported to face justice the other side of the pond. Where is our compassion? We can release the foreign terrorist convicted of the Lockerbie bombings on health grounds but cannot extend some compassion to this British National

My son is still a child, it is hard to imagine him as adult. Could the predicament Mr McKinnon finds himself in be played out in my son’s future?  My son, unlike McKinnon, has had the advantage of being diagnosed with autism as a child and benefiting from therapeutic interventions and increasing awareness that will hopefully help support him in adult life. Adults undiagnosed with autism are left languishing trying to make sense of a confusing neurotypical world, a square peg in a round hole. Is is any wonder McKinnon retreated into a comforting world of obsessions? No wonder the incidence of mental health problems in this group are high.

Autism is a hidden disability. I have seen the hurtful glances and heard the barely disguised mutters of disapproval at certain aspects of my son’s autistic behaviour assuming he is yet another badly behaved child who ought to know better.  I am equally grateful to those individuals who interpret my son’s sometimes eccentric or boisterous behaviour or his distress in certain situations sympathetically.  The censure of my child from those who make incorrect assumptions may be limited to glares and tuts, the condemnation of McKinnon may lead to him languishing in an American prison for the rest of his life.

Let’s not forget his mother who has spoken out from the heart about her son’s plight. Ultimately this is the story of a mother fighting to protect her son. Today is World Autism Awareness Day. I pray that increasing awareness of the impact of autism has will ensure that this vulnerable man is treated with the fairness and compassion he deserves

Last night, before the sublime Glee, I sat down to watch the Chancellor’s debate. Billed as a warm up to the 3 leader’s debates, I was interested to see what the different men had to say, and how they said it.

In the Blue corner was Tory Boy George Osbourne. He always seems a little ‘nice but dim’, and it has been said that no other politician would suit a regency wig quite as well as the shadow chancellor. In the Red corner, Alistair Darling. I feel quite sorry for Alistair, I’m sure he’s the butt of many a blackadder style joke with his unfortunate surname. Then in the middle, for the Yellow team, Vince Cable. A name that makes me think of 70’s dodgy moustaches.

The debate started with 1 minute statements, and then proceeded with preselected questions from the audience. It was reminiscent of Questiontime, but more focused, and more polite. The first question concerned the qualifications and qualities that each man brought to the job. Cable mentioned his private sector experience, Darling could talk about being Chancellor through the worst recession in 70 years, and Osbourne… well he talked about his ideals, but didn’t seem to have any experience to bring to the job.

They went on to discuss job creation, tax, spending and so on. There were few revelations (though the abandonment of the death tax was one – which is a shame, I like that idea! It’s not like I can use the money when I’m gone!). There were no major gaffs (a relief to the Tories apparently!), a couple of laughs, and some interesting discussion.

There are clear differences between the parties, and these debates will help to highlight those differences. The Tories are returning to form, with large cuts in spending, and cuts in taxes. The Libdems will cut everywhere, with no ring fencing (a fair, but possibly unpopular approach). Labour will ringfence, and cut later. The possibility of cross-party co-operation came up – which is good when they are in session, but bad for voters – because it reduces our choices.

The papers (and twitter!) are obsessed about who ‘won’ the debate. I don’t think there were any winners, other than democracy. All the candidates performed well, and anyone watching will have a clearer idea of the policies of the 3 parties. Who was watching though? probably people who have already decided who to vote for, and have an interest in politics. It was competing with Coronation Street afterall…

I grow weary. Apparently, and despite being thoroughly CRB checked, I will need yet another check under the newly introduced Vetting and Barring scheme. I have yet to find any credible reason for this decision and find it utterly bizarre especially as the Criminal Records Bureau will oversee these new checks.. The necessity for a new CRB check to be carried out every time someone works for a new organisation already seems nonsensical. Despite already having a recent enhanced CRB for work the Local Authority still insist I have another one if I want to be a parent volunteer at the children’s school. I needed a fresh CRB check when I had a 20 year old student do a family placement in our home and have just been informed I need a further check if I want to continue in my role as treasurer for a small branch of a voluntary organisation. One can only presume the accounts have some sort of at-risk status that needs protecting. The fact that CRB checks are not transferable within a given time frame is absurd and the mind boggles that why after several clean bills of health to my integrity I need to submit myself to further vetting.

Midst all this red tape and procedure let us remember why these new safeguards were introduced ; to prevent another Soham tragedy. Yet many believe many believe these precautions would not have prevented that tragedy from occuring and it is simply penalising the innocent. There has been much outcry from voluntary organisations about the impact of the new Vetting and Barring Scheme with fears it could sound the death knell for volunteering. It will have consequences for other sectors too. The media is littered with stories about health cuts yet millions of health workers who have current CRB documentation will need to register with this new agency. Times are lean, is duplicating paperwork really a good use of the public purse?

I remain befuddled why after being well acquainted with the CRB form I need to jump through further hoops to register with this new body. Is this another example of the current Labour administration’s propensity for mindless bureaucracy? Is this simply a money spinning exercise under the guise of safeguarding to generate coffers for the Treasury? Or are we simply becoming more paranoid in our pursuit of a no-risk society? Answers on a postcard (or in the comments section!) please

This is what we should all be doing, yes?  If you’re still unsure how to vote, try this quiz and see if it helps:

http://voteforpolicies.org.uk/

I just did it, and although there was an overwhelming majority in my answers, there were one or two surprises!