Now it's Real. First Cancer Patients, Now Government slash benefits for Disabled Children

Last night, the House of Lords failed to support an amendment put down by Tanni Grey-Thompson, the most successful paralympian of all time, to protect the benefits of disabled children once Universal Credit is introduced.

You can read more here http://www.family-action.org.uk/section.aspx?id=14225 but effectively, under universal credit, all but the most profoundly disabled children will only get half as much support. Child Tax Credit additions for disabled children will fall from £52.21 per week to £25.95 per week - a loss of £1366 per year, or £20,000 over the course of a childhood.

You might wonder what possible argument a government who promised to "protect the most vulnerable" could possibly make for this change. I myself was fascinated to see how on earth they had justified throwing disabled children to the wolves.

Ready? OK, if they didn't betray disabled children, it would just have to be disabled adults. After all, disabled children have parents to look after them. What's more, if they didn't cut money used to buy wheelchairs and incontinence pads for disabled children, they wouldn't be able to afford to address the hideous failures of ESA (Employment and Support Allowance or sickness benefit) and ensure that all those who qualify for long term support, get it.

Could there be a more disgusting example of divide and conquer? Each man for himself. The image of a Victorian gent throwing a handful of pennies on the floor and leaving the cripples to fight it out amongst themselves comes to mind.

And remember, this is no longer theory.

I've been writing about these issues for 18 months now, sadly my blogs have often contained doom and gloom predictions of horrors to come. Well last night they started to come in a first blaze of in-glory. The Welfare Reform Bill is now at Report Stage in the Lords. These votes will almost certainly decide what becomes law and what doesn't. For disabled children, now it's too late.

Shame on us.

There is one more session before Xmas. Then 4 sessions after Xmas, then the final no-going-back vote to pass the bill. There is still time to lobby peers. There is still time to stop the time limiting of ESA. http://diaryofabenefitscrounger.blogspot.com/2011/12/time-limiting-esa-template-letter-to.html There is still time to oppose PiP and abolishing Disability Allowance. http://onemonthbeforeheartbreak.blogspot.com/ There is still time to fight Clause 52 http://www.guardian.co.uk/commentisfree/2011/dec/08/conservative-compassion-disabled-sick and housing benefit changes that will leave thousands of sick and disabled people at risk of homelessness.

In a week where the government suggested all cancer patients undergoing chemotherapy ought to be assessed to see if they can work or not, I can only wonder where this will all lead. I can only hope history is no guide the future

If I can find any tiny silver lining, it is that we only lost by 2 votes. That is the closest vote I have seen so far.

2 votes. 2 Lords. 2 letters, 2 emails, 2 tweets.

There is still all to play for, but sadly disabled children just fought the last stage of their fight. And lost.

ADHD and DLA fraud

There's an article on the BBC News website is entitled Unscrupulous parents seek ADHD diagnosis for benefits

The evidence for this assertion is that two anonymous headteachers claim this to be the case.

"Susan" has asked to remain anonymous, because she knows what she says is controversial and does not want to stigmatise the parents of every child with a diagnosis of Attention Deficit Hyperactivity Disorder (ADHD).

Not sure how anonymous sources make any difference to the stigmatising effect of the article. ADHD is already a massively stigmatised condition. Many people, including teachers, are sceptical as to whether the condition isn't simply a way for bad parents to excuse the bad behaviour of their children. I have heard it theorised that ADHD is a problem caused by middle class parents who aren't prepared to smack their children and demand a label when their children struggle at school, or that ADHD is a problem caused by working class parents who feed their children junk food and abandon them to the television. Bringing benefit fraud into this can only add to the stigma.

Psychiatric diagnoses with subjective criteria are always tricky and identifying abnormality in children's behaviour is particularly fraught, so there are bound to be misdiagnoses. But for children with these impairments, attempting to navigate the world and an inflexible education system, a diagnosis of ADHD can be a tremendous gateway, not to extra cash for their parents, but to proper treatment and the help they need to succeed. DLA can be used to buy time, peace, practical adjustments and special arrangments so that these children and their families can have as full and normal life as possible. Which in turn promotes normal development.

Their anonymous source continues

"Every child I have on medication, we are asked to fill part of the forms that they [parents] submit as benefit claimants, to verify they have ADHD, so it goes hand-in-hand."

As the article later points out, both NICE and the Royal College of Psychiatrist believe that Ritalin should only be prescribed to chlidren with severe behavioural problems. Therefore, it follows, those families whose children are actually prescribed Ritalin are likely to be in greastest need for help.

Only of course, there are only 328,000 people on DLA under the age of 16, including all those with mobility and special care needs, whereas there are many more children taking Ritalin (I can't find a figure that agrees, but somewhere past half a million). Ritalin prescription and DLA do not go hand in hand.

Then finally,

Abuse of the Disability Living Allowance by parents is one reason the Department for Work and Pensions (DWP) is discussing reform.

No, it's not. It has been said before, but it has to be said again and again, DLA fraud is reckoned to stand at 0.5%. There are only 328,000 people under 16 claiming DLA, including all those children with mobility and special care needs. Presuming that fraud is as common amongst parents and guardians claiming for their children than amongst adults claiming for themselves – which seems extremely unlikely given the much stricter criteria for under 16s – then that's about 1600 cases in the country. The DWP are not reforming anything for the sake of 1600 fraudulent parents.

This article rattled me because it is such weak reporting and by the BBC, from whom I'd expect better. Disability fraud and the urgent need for reform has become a bandwagon, where an argument is built up around the word of anonymous sources who have no expertise beyond their anecdotal experience. Because there must be fraud. There must be massive fraud or else the government wouldn't be able to justify the cuts and increased stress and scrutiny in store for everyone on disability benefits.

The website article relates to a radio piece on this matter at 9pm tonight (Sunday, 6 February) on BBC Radio 5 Live. No, me neither.

The Cost of Care - (Riven and Celyn Vincent case)

Celyn Vincent is a six year old girl with quadriplegic cerebral palsy and epilepsy.  She requires round the clock care from her mother, Riven.  Six hours of respite care is provided per week by social services.  Yesterday, Riven Vincent asked for Celyn to be taken into care as her request for additional respite had been declined and she felt unable to cope.  As yet, Celyn has not been taken into care, discussions are still on going as to the best way forward.

Riven Vincent is a user of Mumsnet and had David Cameron to tea pre election.  During this visit he assured her that more would be done to support families with disabled children.  A promise he is now being accused of breaking.

The statement released by Ms Vincent can be viewed here.

Carers are estimated to save the government in the region of £80 Billion every single year.  Riven Vincent has estimated that the cost of caring for Celyn in residential care would be between £2000 and £3000 a week.  The cost of a respite carer for Celyn is approximately £15 per hour according to Ms Vincent.  It is likely that Ms Vincent is in receipt of Carers Allowance at a rate of £53 a week.  Financially the provision of additional respite is obviously more cost effective.  It will also have many other benefits for Celyn and her family which can't be measured.  Time as a family, the ability to make memories.  For Celyn's brothers and sisters to spend time with their mum.  And for Ms Vincent to have time to rest and recover.

The fact that there is now a lot of attention on the issue of support for carers and the valuable work they do is great.  However this isn't a one time only thing.  Nor is it new.  For many years now families have been expected to care for their disabled children (even when they become disabled adults) with little or no support for years.  The planned cuts to disability benefits and services are likely to make this much worse meaning even more carers find themselves in this situation.

Personally I was refused all support when I left university as I was living with my parents (in a property they had moved to whilst I was at uni and which wasn't adapted) and we "could cope".  The fact my Mum was working full time and also caring for my elderly Nanny (and my Dad had just had spinal surgery) and saying she couldn't cope was irrelevant. We were told we simply needed to "pull together as a family."  This situation was only resolved because my parents refused to have me in the house and I was made homeless.  That's a very distressing and painful procedure.

I know of other disabled people who have had to go down that route.  Of a 40 year old who was given a suitable flat to live in but couldn't move from his parents house as no care was available.  And of parents of now adult disabled children who have had to accept there child is never going to leave home and they'll have to keep trying to cope as best they can.  Twitter is full of similar stories today.

The focus on care provision needs to move from the cost of it financially.  It needs to look at the bigger picture.  The question shouldn't be "can we afford to provide X service" but "can we afford not to?"

The fact that Celyn Vincent's family have found themselves in this situation has been described as "shameful".  The fact that hundreds and thousands of carers and disabled people are in the same situation is even more shocking.  I hope that Riven Vincent's brave decision to go public gets results for her and she can keep Celyn at home.  But mostly that this brings the issue into the public eye more and that reforms are made to provide much needed support and independence for all disabled people and their carers.

BBC Documentary Seeking Families with Disabled Children on Benefits

Disability Now posted on twitter that the BBC is looking for families with disabled children to feature in a new documentary focusing on the effects of benefit cuts.

They have sent me further information so that I could post the request here, in case any readers are interested in taking part.



[Image text reads: MY LIFE DOCUMENTARY. BBC One is making a film about children growing up in low income families. We are looking for chatty children, happy to talk about family life, having fun, where they live, school, hopes and dreams...

If you are, or if you know a child aged 7-12 years who you think might like to take part, then please call / text Tim on 07968 721299 and I'll call you right back!

Check out www.truevisiontv.com/mylife for more details.]

BBC ONE: My Life (1hr)

True Vision is a BAFTA award-winning production company renowned for making documentaries about important and often sensitive social issues. Our films have led to concrete political and social change regarding homelessness, unemployment, addiction and domestic violence - please visit www.truevisiontv.com for more details.

Eleven years ago our BBC documentary 'Eyes of a Child' compassionately told the story of children growing up on the edges of society. It caused a sensation and in the following weeks Tony Blair announced a raft of measures designed to eradicate poverty in the UK by 2020 - with an interim target of halving the number by 2010.

While some excellent work has been achieved with those closest to the poverty line, it is still estimated that 4 million children still live in poverty today. 'My Life' will provide 4-5 children living in households where the family struggle to make ends meet, (throughout the UK) the opportunity to present their world through their eyes, highlighting the things that affect them including housing, their local area, unemployment and access to education as well as their hopes and dreams despite living in tough circumstances.

It will be a powerful and important film which will give a voice to the children who are facing the toughest start in life compared to most. It will also help to ensure that child poverty remains at heart of future social policy in this historical year.

We are looking for children aged 8-12 (perhaps up to 14) throughout the UK who have plenty to say about their lives, their homes and their family. The filming would follow them over a couple of months (in short sensible bursts of filming that best tell their story) so that we can present a narrative for each which the audience can really engage with. Parents and siblings may well be involved but the vast majority of filming would focus on one or two of the children.

Given the nature of this documentary, we have a child protection policy which has been approved by the BBC for this project. All staff involved have been CRB-checked, have signed up to a strict protocol and solid experience working with children and families. At all times, whether gathering research in an informal capacity through to filming with a child, their safety and wellbeing is paramount

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Firstly I'd like to say that we are acutely aware of how difficult is to find contributors willing to discuss some very personal difficulties, furthermore ones that they may not be proud of - but I can honestly say that our previous contributors have all been happy with the final films, because they take a long time to make allowing a strong level of trust to develop. I also accept that not everything needs to be out in the public domain, so certain details can be withheld and we also show the film to contributors for fairness and accuracy prior to broadcast.

Recently there have been several documentaries made regarding social imbalances - perhaps most notably 'How the Other Half Live' - although the programme fulfils a purpose, I have to admit some personal dissatisfaction about the format used. We are perhaps slightly old-school and rather than have a life-swap scenario or celeb come in and view life through their experiences, our intention is to give the microphone to the kids and hear their voice, their thoughts and witness their lives - ultimately achieving a more 'real' picture of what life is like.

The film is meant to be a statement on Child Poverty/Social Deprivation - I cannot hide from this, or find contributors who are unaware of this - but I suppose my approach to potential contributors is to target the specifics underneath these banners, ie housing, education, family life, health, aspirations etc. Hopefully it won't be all doom and gloom though, and I'd like it to be a process that the kids enjoy, and can feel a strong sense of achievement & satisfaction from.

Finally I also wish to acknowledge that there is good work being done to alleviate social problems, I would say that there has been a lot of investment to improve certain parts of the country and perhaps the timing of this film will be important as expected cutbacks will hinder ongoing progress.

So if you are interested, check out their website, or call or text Tim on 07968 721299.