Shocked headline as fat disabled woman has fun

Obese woman demanding 50 hours care a week 'went to pop concert', screams the Telegraph. Obese? Disabled? Had a night out? This is surely an outrage to all common decency! Nobody who is fat should have fun, especially not if they are mentally ill and fat. Never mind that a good night out could have made this woman feel a bit better. Never mind that it might have been her first night out in years. Her weight and her mental illness make it an indisputably horrifying thing to have done, according to the paper.

When the paper reports that she is 'demanding 50 hours a week care', what it means is that she previously received care through Direct Payments, which has now been withdrawn and she is appealing for it to be reinstated.

Reading the article, despite the numerous mentions of her 'morbid obesity', none of her reported care needs relate to her weight at all. All of these references serve simply to stir up prejudiced feelings about this woman, to build up the readers' outrage.

The paper reports that she has been diagnosed with a personality disorder, following traumas and bereavements, and her psychiatrist has decided that she should 'break her reliance on the support of others'. This happens to a lot of people with personality disorders, in particular female survivors diagnosed with borderline personality disorder. Mental health services commonly do not like treating people diagnosed with BPD, or services diagnose people with BPD when they do not like them - either or both are commonly true. It is not known as the 'wastebucket diagnosis' for nothing.

This does not mean that people with personality disorders do not require support. The council, in court, argued that because she can play computer games, buy cigarettes and go to a pop concert, she should have all her care withdrawn, despite evidence that in the past she went for months on end without washing, due to a massive fear about bathing without somebody there.

The Telegraph then offers a poll. A poll! So that readers can vote on whether they think this woman's care needs should be provided for.

As if constant, irrelevant references to this woman's weight, and scare quotes when describing things like her "extreme paranoia" and "lack of motivation", mocking her all the way through - a woman who already has mental health problems - as if all of that was not enough, let's allow the public to vote on what they think her future should be.

The Daily Telegraph have humiliated a vulnerable woman for committing the sins of being fat (many people on certain psychiatric drugs are, it's a significant side-effect), for having suffered trauma in her past, and for going to see The Wanted in concert, whoever they are. Their ridiculous poll adds insult to injury, and I just hope the woman in question never reads it.

This post originally appeared at The F-Word

[The image is a photograph of a warning sign reading "Caution Do not play on, in, or around this container". It was taken by Brittney Bush Bollay and is used under a Creative Commons Licence]

It's going up by HOW much?

When the horror stories start coming, and they don't stop, you know it's time to worry. The latest I have heard about is of a woman in Dumfries who previously paid £21 towards her care at home, per week. She has now found out that her charges are being increased to £1,464 a week. That is not a typo. She now has to pay more per week than she previously paid per year.

This increase of 6,870% was reported in the Dumfries and Galloway Standard and Women's Views on News, and Linda Murray, the woman involved, has been told that she is already £17,000 in arrears.

Ms Murray told the Standard, “I just don’t understand how they expect me to pay this. It’s enormous. It’s over a thousand pounds every single week. That money was to last me the rest of my life. It won’t even last me the rest of the summer.”

Council Leader Ivor Hyslop said,

"We took the decision to change the charging policy to ensure that we continued to provide the services we have been delivering.

"The way we have approached this also ensures that those who cannot afford to pay are still protected.

"We have people checking that a mistake has not been made [in this case].

"When the decision was taken, it was reported to us that rises would be up to four or five times. It is my understanding that one in five people receiving services will see their bills rise."

But an increase of four or five times the amount previously paid is bad enough. Linda Murray's has been increased by around 70 times!

To clarify, she used to pay £1,134 per YEAR, she is now being asked to pay £1,464 per WEEK.

My own council is looking into more charges for social care, which will affect me. The above story does not inspire me with the confidence that the council materials I've received on the subject are trying to suggest I should have.

(Cross-posted at incurable hippie blog).

When the dignity of one person is denied, all of us are denied

Disabled people in the UK have been under constant attack lately. Whether it's the vast and wide-ranging benefit cuts; Birmingham city council refusing care to people with substantial needs, which has since been ruled unlawful; cuts in Access to Work, ironically when we are being told we should all be getting jobs; or the impending closure of the Independent Living Fund, the hits feel like they are coming from every direction.

But I read about a case a few days ago, Court tells disabled woman: just wet yourself, and it showed me just how government cuts are affecting real people. It is not an 'austerity measure', nor is it 'small government', it is an affront to a woman's dignity and human rights, and we should all be utterly outraged.

Elaine McDonald has just lost a Supreme Court fight for her local council to allow her to continue to have overnight care. Funding was withdrawn by the Royal Borough of Kensington and Chelsea for the overnight care that Ms McDonald needs to assist her with going to the toilet during the night, and the council instead gave her some incontinence pads, stating that this was cheaper.

Elaine McDonald is not incontinent! And she, quite rightly, objects to being asked to lie in bed for 12 hours at a time (since her care has been cut), in her own waste. She needs to go to the toilet regularly due to a bladder dysfunction, and complained that providing pads instead of care caused a lack of dignity and independence.

Can you imagine if you were at work and your boss stated that bathroom breaks were wasting time and money, and that it would be cheaper for the company to provide everyone with incontinence pads instead? If you weren't on an authorised break then you could just use the pad instead, and sit in it until you were permitted to go? And Elaine McDonald is in her own home - of course, moving to a care home instead would cost the council considerably more.

Even in purely economic terms this is a questionable decision. The lack of mobility which she will now experience, and the potential infections from spending night after night in your own faeces and urine, could cause significantly worsened health and social problems, which would increase the cost of her care significantly. And some people in Ms McDonald's situation may try to go to the bathroom or commode regardless, risking increased falls and, thus, increased health and social care costs again.

But the Supreme Court judges ruled 4-1 that the council had acted lawfully. Judge Lady Hale, the sole judge to rule in Ms McDonald's favour, stated that,

"A person in her situation needs this help during the day as well as during the night and irrespective of whether she needs to urinate or to defecate.

"Logically, the decision of the majority in this case would entitle a local authority to withdraw this help even though the client needed to defecate during the night and thus might be left lying in her faeces until the carers came in the morning.

"Indeed, the majority view would also entitle an authority to withdraw this help during the day."

Of course, incontinent pads in themselves are not bad things. For people who are incontinent, they are invaluable. But Elaine McDonald does not need them and does not want to use them. Nobody should be put in this position, and she was right to challenge it legally. The depressing truth is that the council and courts rated costs over human dignity, and Ms McDonald could be the first victim of many.

And it seems that she is not the only person being challenged on their use of a toilet to save money. According to The Scotsman, "disabled residents at a supported-housing complex have been told to train themselves to go to the toilet at fixed times to fit in with a strict new rota". Is this where the infamous Big Society comes in? You can run libraries, or you can assist disabled people to go to the toilet. Because after all, those who should be providing those services will not bother.

[The image is a photograph of a hand, holding a piece of paper on which is printed, "The budget is killing me!". The photograph is adapted from an original, licensed under a Creative Commons licence, by Steve Rhodes.]

Need the Loo? Book a Time Slot.

No sooner have the Supreme Court finished shaming each and every one of us by ruling that Kensington and Chelsea Council (representing by far the richest borough in the country, with 1 in 6 earning over £60K p/a) are fully entitled to tell a disabled elderly woman that she should just wet herself rather than provide her with the support to use the toilet during the night that her disability requires, than The Scotsman reports that a supported living complex in Aberdeen has started telling its residents that if they need staff help to get to the bathroom then they will have to schedule it on a roster and that when residents questioned this new regime they were told to 'train their bowels'. Social Care and Social Work Improvement Scotland have launched an urgent inquiry, but are the stormcrows of the Supreme Court's precedent-setting decision already coming home to roost at the heart of Cameron's Big Society? And if we need to pre-book our slot to go to the toilet then is it the Big Society, or the Big Brother Society?

If managers at the heart of a private company, intent only on reaping maximum profit from those whose disabilities force them into dependence on their care; or councillors at the heart of a local authority, intent only on shaving the maximum possible savings from a constituency who lack the political capital to threaten them at the ballot box; feel able to so cavalierly dismiss our rights to human dignity and respect in favour of what is tantamount to abuse, then are they really any morally different to the thugs who physically abused the residents of Winterbourne View? Dousing someone with learning disabilities in cold water, insisting that a disabled, elderly lady wet herself for your convenience, are the ethical issues really so different? And if the motive for the abuse is not the personal inadequacy of the bullies amongst us, but the cold, hard, bottom line of personal profit, then isn't the failure of personal ethics actually far, far worse.

And if the highest court in the land supports these abusers in their actions, then how can we have any respect for the judiciary? The purpose of law is to encode a system of ethics, the purpose of the judiciary is to protect and defend that system, not connive at its systematic erosion.

Guest post: Court tells disabled woman: just wet yourself

This is a guest post by Indigo Jo and originally appeared here.

Ex-ballerina Elaine McDonald care ruling ‘shameful’(with video)

I wasn’t aware of this case until I read earlier today that the Supreme Court had refused it: Elaine McDonald, a 68-year-old former ballerina who lives in west London, who had been left disabled by a stroke in 1999, had been challenging the decision by her local council (Kensington & Chelsea) to cease to provide night care in case she needed to use the toilet, providing her with incontinence pads instead. She is not incontinent. (More: Where’s the Benefit?, Disabled People Against Cuts.)

Hearing about this, I cannot help but think that whoever made the rules could not have imagined that decision-makers would even consider telling a person who is not incontinent to just wet themselves but Michael Mandelstam, in his recent book How We Treat the Sick (the link is to Amazon UK, as it’s about the British health system), it’s become sadly common in some places for nurses to tell patients who cannot get up to use the toilet to simply do it in bed. On reading this I sent out a tweet saying I couldn’t believe any nurse would tell a patient to wet the bed rather than attend to them, and was told (by a disabled woman who had seen the inside of hospitals on several occasions, as had several of her friends) that this was nothing compared to what she had seen and heard about. As one might expect, Ms McDonald said she was horrified at the original decision and found today’s court decision very upsetting, while another Supreme Court judge noted that it would enable authorities to deny people care related to toileting during the day as well.

Of course, some disabled people are incontinent, and providing incontinence pads is a perfectly proper and necessary form of care for them, but some say it’s the worst aspect of being disabled — I read an article about Judy Mozersky, a woman who became “locked in” after suffering a brain-stem stroke while at college, and when asked what was the worst aspect of her condition, that was the one she named. That they would ask a continent person to lie in their own urine and faeces for hours demonstrates that they have no idea of what that means. It is particularly distressing for an elderly person who has lost much of their independence but not that, or for a child who has fairly recently become continent. I recall how distressed I was when expected to put a plastic sheet on my bed when starting at boarding school, not having had such a thing at home and not having wet the bed for four years. And it has been noted that some people who are not incontinent find it impossible to pass urine into a pad (E. Collingridge, 2010), and that in such circumstances, a catheter might be appropriate. This could result in prolonged discomfort (or possible medical repercussions) and sleep problems.

I do hope this does not result in the needs of elderly disabled people being pitted against those of younger people with disabilities; the needs of the elderly are a media-friendly issue, as they can be portrayed in the popular press as people who have paid taxes all their life and then left to sit in their own urine by the uncaring professionals, bureaucrats or whoever, which is not so easy with younger disabled people. The judgement, like the original care decision, is clearly based on ignorance of the consequences for Ms McDonald’s health and that of all those who might be affected, including the more severe hygiene requirements to prevent skin breakdown and infection. Surely, political intervention is vital.

McDonald, R (on the application of) v Royal Borough of Kensington & Chelsea

 "I want to make sure that my government always looks after the elderly, the frail, the poorest in our country"

David Cameron, October 2010

The Supreme Court have made a decision in the case of Elaine McDonald a former principal ballerina in the Scottish Ballet. The legal arguments are varied but centre around whether there was a fair review of care conducted, whether the decision infringed Ms McDonald's rights under Article 8 of the European Convention on Human Rights and whether there was a breach of section 21 and 49A of the Disability Discrimination Act (1995) (now superseded by Equality Act 2010)

On a 4-1 majority the Supreme Court have dismissed Ms McDonald's appeal. Whilst the legal principles are important, for most of us they aren't relevant. The crux of this issue is very simple.

"What do we, as a society, think is an acceptable way to treat our elderly people, our disabled people, our sick people?"

The answer from the courts is damning to us all. It says that as a country we find it acceptable to leave our elderly people, our disabled people, our sick people lying in their own piss. All night. Even when that person is not incontinent and only requires a few moments assistance from another person to ensure their dignity and comfort.

Is this what we want for our mothers and fathers? Is it what we want for our grandparents? For a generation who fought for all our freedoms? Is this what we want for ourselves? Even if you don't really care about sick or disabled people one day we will all be old. We will all be vulnerable. We will all learn the lessons of powerlessness, of how it feels to have our lives held in an uncaring hand. When that time comes for you, do you really want to be left in your own urine. All night. Every night. Until you die?

It's never that simple

As readers of this blog are no doubt aware, yesterday Labour leader Ed Miliband made a speech attacking those disabled people who he believes can and should be doing some sort of (unspecified) work.

So far as anyone can ascertain, Mr Miliband doesn't have any basis for this belief - no background in Occupational Therapy, no medical qualifications - it goes right back to the old refrain of "if you can press a button, you can work," that we heard many times while Labour were in power and introducing ESA and their harsh Work Capability Assessment.

As I responded to Bendygirl's blogpost yesterday: it's never that simple.

If there is a button-pushing factory in my town (despite offshoring), or in a town I could move to (despite lack of accessible housing and the housing benefit caps), and if they're hiring (despite record UK unemployment), and if I can get up and washed and dressed in the morning (despite cutbacks to Social Services), and if I can actually get to work (despite inaccessibility of public transport), and if the button-pushing workstation and the route to it is or can be made accessible (despite Access to Work cuts)...

...and if the bosses and co-workers are happy to accommodate my need for frequent breaks at unpredictable moments (despite the hundreds of other applicants for the button-pushing job who are equally qualified for button-pushing and don't need breaks or adjustments), and if I will earn a living wage (despite the messing about with Tax Credits)...

...and if we can account for the fact that I only have the energy to function for about 10 non-contiguous hours out of every 24 and I must keep three or four hours of that aside for necessary things like eating, medicating, grocery shopping, banking, cleaning and managing my household, and the bureaucratic maze of disability...

...then I, along with many others, will be right there.

Red Tape Challenge

The government is currently running a "Red Tape Challenge" to "fight back and cut red tape."

On the about page of the "challenge" it says:

Good regulation is a good thing. It protects consumers, employees and the environment, it helps build a more fair society and can even save lives. But over the years, regulations – and the inspections and bureaucracy that go with them – have piled up and up. This has hurt business, doing real damage to our economy.

Yes. It's rules that ruined the economy, not this government's friends the bankers. Oh no. Not at all.

The ConDems - you know, the ones that want us off benefits and working - are consulting on whether or not to scrap the Equality Act 2010 as part of the "challenge"; the act that's vital to disabled people securing work.

Unsurprisingly the consultation has brought out the inner Daily Mail reader in most of the respondents so far. These people seem to think that the act is all about "positive discrimination" and don't seem to understand that the act protects men as well as women, straight people as well as gay people, and white people as well as non-white people. But I suppose that's the kind of misunderstanding people would get from reading right-wing rags.

There have been a few people standing up for equality, but sadly not nearly enough. Not that consultation really makes much of a difference, the government will still do exactly what they want just like with DLA reform, but I think us pro-equality, anti-discrimination types need to make our voices heard.

It is truly farcical that they think more disabled people will suddenly find jobs without anti-discrimination laws. Already the employment rates of disabled people are around 48%, compared with around 78% of non-disabled people (sure, some of that's to do with illness and inability to work, but discrimination in the job market is also a massive factor). The gap in the rate of employment between disabled and non-disabled people has shrunk since 2002 when it was 36% to the rate of around 29% in 2010. You can be sure that that's a direct result of the DDA getting stronger. (Stats from the ODI.)

Consulting on binning the Equality Act isn't the only thing being consulted on that may affect us. Every few weeks they're looking at a different sector and considering the regulations specific to that area. Currently they're consulting on the retail sector. From 23rd June to 6th July they're consulting on regulations around social care; when you can be sure that the rules that protect us from abusive carers and so forth (at least the ones that have been previously caught) will be threatened with those red tape snipping scissors.

Legal Challenge to the Cuts In Hertfordshire

This is the detailed application I have lodged with the High Court requesting a full Judicial Review of Hertfordshire County Council's changes to policy on charging for care together with cuts in services and the slashing of funding to the very third party organisations who are expected to pick up the slack as from April Fools Day 2011 when the cuts start to bite.

Case Lodged 28th February 2011 at the Royal Courts of Justice

Detailed Statement of Grounds

Hertfordshire County Council have clearly failed to meet their duties under Section 49(a) of the Disability Discrimination Act as amended by the Disability Discrimination Act 2005 commonly known as the "Disability Equality Duty" (DED) which will form part of the "General Duty" under the provisions of the Equalities Act 2010 which comes into force in April 2011.

The consultation on proposals to change the Council's Non-residential Services charging policy, carried out between August and October of 2010, failed to meet the standards required under the DED and the provisions of the Department of Health Guidance for Councils with Social Services Responsibilities issued in 2003.

The Council have failed to have due regard of the government's announcements regarding additional funds which are being set aside precisely to offset the disadvantage disabled people and their carers face due to the austerity measures.

The planned reductions in funding to organisations such as Hertfordshire Action on Disability and the Supporting People Service and proposed restructuring of The Money Advice unit have/or are being put through without any consultation with those directly affected and in direct contradiction of the stated rationale for changes to Non-residential Services policy.

The changes in Non-residential charging policy are due to be implemented from 1st April 2011 it is therefore imperative that the issues raised in this application be resolved prior to that date given the chaos, uncertainty and distress to service users that will ensue if the changes are implemented and then have to be reversed at a later date. This is particularly true for the two grant funded bodies who are currently having to consider staff reductions and redundancies based on the reductions in their funding recently announced by Hertfordshire County Council.

It is also in Hertfordshire County Council's best interests that this matter be resolved as a matter of urgency in order that suitable provision can be made for funding any shortfall in revenue and/or the need to provide additional grant aid over and above that now proposed to Hertfordshire Action on Disability and Community Support Services throughout the county as a result of any lawful consultation and reconsideration of the policies in question under this application for judicial review.

As with the recent judicial review of the decision by the Leaders' Committee of London Councils to cut £10m from their £26.4m Grants Scheme, where it was held that decisions taken were unlawful because of failure to meet Public Sector Equality Duties, the result of this judicial review may well have far reaching implication for other local authorities and the bodies which they fund to provide services to disabled people.

An urgent clarification of the law in regard to what constitutes a "lawful" consultation in relation to changes in policy relating to disabled people and or the subsequent consideration of that policy will, therefore, be of benefit to all the service users of other local authorities in England, many of whom are currently in the process of imposing similar increases to charges at the same time as reducing services to these disabled people and at the same time also reducing the level of funding provided to the third sector organisations expected to pick up the slack following those cuts.

The interim order I am seeking is as follows:

"It be ordered that changes to the Hertfordshire County Council's Non-residential care charging policy and reductions in funding to relevant grant aided providers of services to disabled people in Hertfordshire, such as Hertfordshire Action on Disability and Community Support Services, be put on hold pending the result of the judicial review and thereafter be subject to any further directions or orders made by the court in respect of the judicial review in question."

Main Facts Relied on are as follows:

1. The original "Consultation" Document sent out via letter on the 21st July 2010 (pg 54 - 56) stresses throughout that the main rationale for the changes is to avoid making cuts in front line services. However, later decisions by HCC will clearly impact on front line services due to cuts in funding of organisations that provide services to disabled people and most notably with the 50% cut in the budget for the Community Support Service.

2. No mention is made at all about the inclusion of services provided by the Community Support Service to those in sheltered accommodation including those with extra care arrangements and/or those living in the community who none-the-less need to make use of their services from time to time like myself. In fact it was only the fact that I was considering moving into such sheltered housing myself whilst the consultation was underway that a member of staff "warned" me not to follow that option as they were aware of the implications for my net income if I was relying on the existing arrangements for Community Support.

3. In fact HCC went even further and actually forbade front line workers discussing the changes to charging with this particular group with the only direct information about the impending changes being that contained in the letter from Community Support Services to clients dated 4th February despite the fact many in this group will be hardest hit by the changes as currently those on housing benefit are entitled to free support but will be subject to the full impact of the changes to the tune of approximately £55.00 per week in many cases (pg 91)

4. Again no mention is made about the increase in charges for Meals on Wheels but this is included in the final report as though it had been part of the main consultation.

5. Despite it being obvious that the main group affected by the changes will be exactly the same group as were hit by the original change to "fairer" charging i.e. single adults in receipt of the severe disability premium of Income support or the equivalent for those on pension credit as they will now be extremely likely to lose the entire amount of the premium in charges but the "worked examples" used during the consultation (and indeed also the current charging for care leaflets provided by county to potential service users) fail to clarify this.

6. In effect HCC will now be taking the equivalent of the Carers allowance from disabled people even where they are only providing a few hours of care per week whereas those in receipt of Carers allowance have by definition to be providing a minimum of 35 hours of care per week to qualify.

7. It is impossible to read the original consultation documents without being given the impression that those who will be being expected to pay more would be the people with the means to pay because they were relatively affluent when the reality is that it is those on Income support levels of income who will effectively have 100% of their "disposable" income taken from them.

8. Whilst an albeit flawed consultation was carried out for some of the changes to the so called "Fairer" charging policy no such consultation has taken place with regard to the reductions if funding to key providers of support to disabled people which as recent case law has established is of itself a direct breach of the Disability and other Equality Duties the local authority has.

9. Perhaps the most stark evidence that this consultation and the Equalities Impact assessment were little more than a tick box exercises is that simple fact that the original proposals as included in the consultation have passed into policy with only minor changes to the day to day running of the scheme with regard to appeals but which still do not provide a truly "independent" review other than via a complaint to the Ombudsman.

10. Above all what is evidenced by all the documentation I have provided is that HCC have asked only "Can we do this?" and not asked the question "should we do this?" which should be the paramount concern of local authorities who are charged with helping to redress the disadvantage disabled people face rather than actually make matters worse for them.

N.B. The change in the policy will increase charges for care dramatically, especially for those on benefits, with people like myself seeing an increase in costs from about £35 per week to £55 as from April Fools Day.

Even worse for those current under the supported People Services in sheltered housing or extra care sheltered housing will see an increase from zero now (if they are in receipt of housing benefit) to the full charge of about £50 to £55 per week in one giant leap.

As I said in my "Everest" thread over on Ouch this is a battle I have to fight, even if I lose, because at least then the local authority will know that their actions are being challenged and not simply hidden in this years budget as "efficiency savings" with no mention at all that services are being cut or that disabled people are facing dramatically increased charges and that third party organisations expected to pick up the slack have all had their funding slashed.

For those wishing to follow the progress of the case the case number issued by the Administrative Court at the Royal Courts of Justice in London is CO/1873/2011

Further updates will follow as and when I have more news.

As it says in the Bible: "Go though and do likewise". LOL

Peter aka "Sociable"

"Go placidly..be gentle with yourself..strive to be happy"

But don't take any $hit from either the DWP or your Local Authority. :)

Whose care is it anyway?

Like most of the country, the Riven and Celyn Vincent case has taken up a considerable amount of space in my brain this week. Thing is, I seem to be concerned with very different elements of the case to the majority of the population.

The press coverage of the story has weighed quite heavily on my mind. Most news outlets are referring to it as the "Riven Vincent case." Celyn, the disabled person in need of a care package, doesn't usually get a name check until paragraph three; as though she's an unimportant afterthought in the story. In fact I'd bet that the majority of people who've seen/read the story probably don't even remember Celyn's name, only that of her mother. Sure the articles all come with a photo of her so people might remember that she's an absolutely beautiful girl with adorable ginger curly hair, but the photos are captioned "Riven Vincent's daughter" rather than "Celyn Vincent".

There are thousands of disabled people in the UK, both children and adults, with inadequate assistance packages. No-one wants to hear those stories. It's only when a non-disabled mother reaches snapping point that it's national news. It reminds me of how the story of Francecca Hardwick and her mum is usually referred to as the "Fiona Pilkington case". Disablist hate crime has killed many, many people over the years and none of those stories have come to the forefront of public consciousness. So why did that case? My theory is that, for the first time, disablist hate crime was responsible for the death of a non-disabled person.

And so it is with Celyn and her mum. Disabled people up and down the country are forced to sit in a puddle of their own piss for the best part of a day until their carer comes in for 15 minutes at bedtime to help them change; and inadequate social care is not a national scandal. A mother reaches snapping point and people are, rightfully, horrified.

One of my friends said "But at least there's a story involving social care cuts that the public is getting behind. It's something, and a step forward." I, however, wonder if it is a step forward or if the story is actually going to prove advantageous for disabled children and their parents at the expense of the social care of disabled adults.

I'm not for a second suggesting that support for disabled children should go out the window in favour of support for disabled adults. Not only do I think that everyone should have their support needs met, but once upon a time I was a disabled child myself so I understand that in some respects a disabled child's social care needs can be more complex and costly than those of an adult. A really good example is wheelchair provision; as a child I needed new wheelchairs much more frequently than I do now because I was growing.

I think there's a very real risk that with so much attention being directed at children's social care packages at the moment that more cuts will be aimed at adult services to preserve the funding for assistance of children and their parents.

David Cameron said that "he did not believe the case was connected to public service cuts." And as the Vincents have always had 6 hours a week assistance and that hasn't gone down, he was probably telling the truth. But if he wants disabled children and their families to have more help while his buddy Osborne is cutting local authority budgets, where is that money for the extra help going to come from if the money isn't being taken from adult social care to pay for child social care?

We have to remember that in the run up to the election Cameron kept on saying that he wanted life to be simpler for the parents of disabled children. He never, ever, even once, expressed any interest in or concern for disabled people over the age of 16. So I really don't think I'm just being cynical when I expect him to hang disabled adults out to dry.

I really hope Celyn Vincent gets a care package that will allow her to be an equal in her family, rather than just a stressor. I want to see all disabled children get the assistance they need to be a "normal" part of family life. I want to see all disabled parents have the help they need for their child to not be a carer. I want elderly people to not have to sit in their own incontinence for 12 hours. I'd quite like someone to help me with the more painful aspects of housework rather than having to look at my filthy floor wondering how much longer I can get away with not hoovering. I'd also very much like to be proved wrong and for the current focus on children's care to not have the end result of making life harder for over 16s.

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.

Stealth Cuts – Other ways we are being hurt – Part 2

While massive spending cuts hit us all, my council – Waltham Forest - has taken the step of asking its residents where they should make savings. A friendly green website presented me with 8 different categories such as “children’s services” and “your streets” and invited me to make cuts of £55m. Suddenly I realised the mammoth scale of this undertaking – the way that no facilities or services can escape unscathed. However, I gave myself the challenge of maintaining adult social care at its current rate.

Don’t get me wrong; I don’t think adult social care is currently even adequate in my borough. I have been told that if someone can manage to give themself a flannel-bath, then they are not entitled to any kind of care. Of course this doesn’t take account of any inability to cook safely, nor to take out the rubbish or manage laundry! But simply trying to juggle cuts while keeping rates of social care at their current level made me aware of the huge task that councils are facing.

Each topic came with a slider – I simply had to pick categories and drag them to save money, and the website would let me know the impact of my actions. For example as I removed all funding from “Sport & Leisure” I was informed that the impact would be "reduced support to voluntary sector sports clubs, reduced sports activities in parks and estates and reduced sports activities and participation in competitions and events". While any cutback is a shame, I don’t feel guilty in removing sports activities when compared to helping disabled people to eat, be clean and maintain independence.

However, although there are eight categories and sliders to adjust, it is instantly clear that some categories will have little impact in making the £55m of required savings. After all, the total budget for Housing & Homelessness is just £4.85m. For Culture, Learning & Community Libraries the budget is £6.91m. In fact, if I set 6 of the 8 sliders to zero – removing all funding in those categories whatsoever – I still need to save another £28m. This money can only come from Children’s Services & Education, or the Adult Social Care that I am fighting to protect. In fact if I maintain adult care at its current level, the system shows me that I have no choice but to cut Children’s Services by more than 25%, removing several social workers and forcing large numbers of at-risk children to stay in their home rather than go into care – something which the real world would not tolerate. My changes would even impose the removal of care packages for disabled children; it seems that whichever way I go, with the huge quantity of cuts required, there will be a direct impact on disabled people one way or another.

Because adult social care comprises such a very large proportion of a council’s expenditure, it’s natural that many people will think that this is an obvious way to make savings. And although any such cutback is abhorrent to my mind, it may be essential in order for our councils to stay solvent. I am pleasantly surprised that although adult social care draws so much money, respondents to Waltham Forest’s website have only voted for a 7% reduction in our services. “Only” 7%. If the council implement cutbacks based on this consultation, they will “only” ...increase charges for their services (when many service users may be on benefits and unable to contribute financially for their care) ...reduce programmes to support vulnerable people and their carers ...and make staffing cuts so there will be even longer delays for assessments than there are at the moment.

Wow. Yet when I play with the figures myself, I can see that this may be a lucky escape - no matter how bad it seems, things can always be worse!

Unfortunately, in the three weeks that this website has been running, only 733 people have responded. That’s a quarter of 1% of everyone who lives in the area. How disappointing, that we are offered this opportunity to have our say and shape service provision for the future, and yet barely anyone bothers? It’s not for want of publicity, as a flyer went out with “Waltham Forest News”, a council newspaper delivered to every household in the borough.

I am utterly opposed to cuts of services and benefits which help disabled and older people to remain independent. I am increasingly concerned about these “stealth” cuts made by boroughs, where there is no right of appeal. But even I must admit that I can’t see what the solution is, other than to hope the economy recovers quickly, and that disabled people are the first to have their services reinstated when more funds are available.

In the meantime, I fear hearing about the human side of these cuts. I already see case studies in the local paper, I know people who are struggling, and situations where older or disabled neighbours have to provide food for one another. I know this is already happening on my own doorstep and I am dreading the situation getting worse. It seems the councils are between a rock and a hard place. All we can do is tell them to cut anything, everything, but adult social care.