Care, employment and families – big week for disability

Trust the Government to squish debates on such big issues into the last week in the hopes not as many MP’s will attend / notice / care. As usual, as mentioned by Scope, the numbers of people now not qualifying for care, and therefore having little or no help to prevent a health or care crisis such as a hospitalisation, means the cost to taxpayer escalates despite attempts to save money. Typical Government too, to underestimate how much money good, ‘preventative’ social care costs.

Also, it has not been mentioned here that cuts to disability living allowance -500,000 less people are eligible or will lose out when assessed for it’s replacement. This matters, because the people not eligible for social care might have had the funds to pay for something, at least, but will now have no plan B, surely increasing demand on all fronts. Also, people eligible for social care could previously use their Disability Living Allowance to ‘top-up’ their care, though for many, once assessed for PIP, their benefit amount will be less, if eligible at all, and therefore a further gap in funding exists. The only funding which ‘tops up’ the gap a little is that after several attempts, the Government were unable to close the Independent Living Fund, used to pay for care for those people judged most severely disabled, after the decision was quashed by a last-ditch appeal attempt. However, as this money goes to a relatively small number of people, there is still a massive shortfall. Yet again, the Government has failed to understand how difficult, and complex life can be when you are sick and/or disabled, and just to be seen on a par with your peers requires significant mental and physical energy, and considerable extra costs (phoning ahead, transport, planning for toilet stops, meals, medication… heck, just getting up and dressed even with help, can be beyond me some days!! Those who are able to be on a par with ‘normal people’ in the workplace, in home-life, and comminity life can, and should be given this support — yes, perhaps at quite a big cost. However, to not plough money into it will cost something greater — physical and mental health of sick and/or disabled people will deteriorate costs health and social care systems more in the longterm, and especially where there is also increased pressure and stress from wrong benefit / tribunal decisions too, lives.

Scope's Blog

It may be the last week before Christmas, but politicians are making time between mince pies and mulled wine to look at a couple of important disability issues.

Today MPs have their first opportunity to debate the Government’s plans for reforming local care – including capping care costs for elderly and an end the postcode lottery in care.

Councils say the crisis in social care sits behind big health issues such as pressure on A&E and GPs – if older and disabled people don’t get preventative, community care, they risk becoming isolated and slipping into crisis.

The Care and Support Alliance – representing 75 charities – is today saying that the bill is a real achievement but risks being undermined by a funding black hole which has forced councils to restrict who gets support.

The CSA has published new research from the LSE that reveals that if we had the…

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The one about the ‘Magic Moments’

Hands up who remembers the song about ‘magic moments’, which graced a television advert or two some years ago? It might be a cultural reference which is UK specific. I have been thinking a lot about ‘moments’ recently from different things I have seen, and read. One is an e-book, another a blog post, and another, a campaign led by a daytime television programme here in the UK. Each has expressed a similar sentiment in different ways.

What is wrong with ‘take a moment’?

I think, judging by the success of the latter, this sentiment about seizing, or making the most of the moment, is having a ‘moment’ in the spotlight. I say this in part because our government has seen the bright lights of the’ popular vote’ and declared that for every ‘moment’ of their time This Morning show viewers give to someone in need (it if is then recorded on the show’s website) our government will donate £5 to ITV’s Text Santa campaign. They are asking for 50, 000 moments, which means a lot of donated money by the government, which sounds good in theory…This morning are doing this to celebrate their 25th Anniversary which asks views to select their favourite moment from their 25 years of the programme.

I am sorry that I sound such a cynic, but in my opinion the above is nothing but a gimmick. I get that the government’s donations to ITV’S Text Santa campaign will do some good, but instead of the Government donating this money to charity, I would rather they dedicate this money to supporting poor and vulnerable children and families in the long-term, and by safeguarding the services they rely on, rather than cutting or dispensing with the services they dependent on altogether. As ever, the Government is giving with one hand, and taking with the other, while those they are supposed to help suffer. So much for the ‘Big Society’ which ‘Dave’ (Cameron) was formerly so fond of.

The other major flaw I can find with This Morning’s ‘Take a Moment’ campaign is that by volunteering to help, the public is giving of their skills, time and talent temporarily rather than on a longer-term basis. This is ill-advised for a variety of reasons. If an older, ill, or disabled person needs help with a particular task, they are likely to need this more than just once. Therefore, to only help once smacks of tokenism. Additional benefits of offering help on a longer-term basis are, that vulnerable people are less isolated, vital in an age where families are fragmented from estrangement, geography or being time-poor. It also gives families surrogate grandparents, aunties, and uncles, while teaching children of the necessity of, and value in helping those in need, demonstrating kindness, compassion, and how to share what they have with others.

Why ‘moments’ matter…

Though I have expressed cynicism and found much to criticise ­­­­­­in the first part of this post I see much value in another aspect of the ‘moment’ – making the most of every single one of them. This is something I am coming to value as ever-more important, the more limited my energy seems to become. It has taken me multiple attempts to write this post as I keep falling asleep, or being unable to concentrate. In the times I can however, my Twitter friend Lou’s post on making the most of her time while she waited for her baby to be born really spoke to me.

I have a choice here. I can believe that as I am in a transition, I have nothing to offer until I become a mother or I can do all I can, as I can right now. I don’t want to miss out by rushing ahead. I don’t want to miss opportunities that I will not get to have again.

On my bad days, in pain and exhausted,  is easy for me to believe that I don’t have anything to offer, however this is not how my Heavenly Father sees me.  I too have opportunities that I should grab before they go. Other things I am reading at the moment are encouraging me to make the most of the little things, and to find adventure where I may not have seen it before. Normally, I try to do useful things in my support time, however, as a one-off, I went to see a movie with my main carer. Something I would not normally watch. We had junk food lunch, which I try not to eat normally, and popcorn, and settled down to watch the movie. ‘Rush’

Time
Time (Photo credit: Moyan_Brenn)

directed by Ron Howard, is about the rivalry between Niki Lauda and James Hunt during the Formula 1 season in 1976. I love human interest stories, which this was, and the sense of danger in the movie just made it more exciting. I definitely recommend it, if you haven’t already seen it! By trying to find the things I can do to vary my life a bit, I am trying to make the most of my time. I’ve been inspired to do this by the sense of adventure in Wendy Van Eyck’s e-book Life, Life, and More Life, which s­­­­he wrote after she and husband Xylon found out he had cancer. They made a conscious decision to make the most of whatever time they have:

The reality is that life doesn’t wait for me to be ready before good and bad things happen. In the midst of life happening around me, in hospitals and on holiday, I’ve realized I can embrace life. I can live fully, and I can live without regrets.

Again and Again I have found nuggets within Wendy’s writing which not only encourage and inspire me to live a Godly life in the midst of my own messy life, but also teach me about the faithfulness of the God I serve and his unfailing love for me. I urge you to check out Wendy’s blog, if you have not already done so (http://www.ilovedevotionals.com). I am trying to find other ways to make my restricted life an adventure. The next of those was hydrotherapy with Community Physio, tattooed and pink haired carer, risk assessor … basically a hoot from start to finish. The next several hours of ‘moments’ will be spent comatose continuing to recover from hydrotherapy yesterday! Night night!

The welfare state: If Hawking can work…

English: NASA StarChild image of Stephen Hawking.
English: NASA StarChild image of Stephen Hawking. (Photo credit: Wikipedia)

Last year a majority in the British Medical Association have come out in support of disabled people, declaring the Work Capability Assessment (WCA) unfit for purpose. Additionally, after many months and much campaigning by disabled people, ATOS Origin, The French IT company given the contract to oversee self assessments and carry out face-to-face assessments, have been forced by the Department for Work and Pensions to retrain their staff. This is even after previous insistence that everything was fine and ATOS would not be fined, despite  appeals overturning the previous decision that the person concerned was fit enough to work costing £66 MILLION in 2012-13 alone!! A report published by a coalition of more than 90 Disabled People Organisations and Charities in 2012 produced a damning verdict as to the impact of assessments and cuts on disabled people. In particular:

  • Nearly 9 in 10 (87 per cent) welfare advisors said the constant re-assessments for benefits are damaging people’s health
  • 9 in 10 (90 per cent) welfare advisors said that too many disabled people are slipping through the net and are left without adequate support by the welfare system.

Mencap have also raised concerns over whether there is enough understanding of the way learning difficulties affect people, and how this impacts on a person’s ability to work.

Despite all this, GP Philip Peverley has recently claimed that: “I had considered, at one point, putting,  up a portrait of Professor Stephen Hawking in my consulting room with a caption that said, ‘This bloke is not on the sick’.” To those who are entirely unaffected by the benefit cuts, and have no reason to disbelieve the skewed headlines produced by some sections of the media, this kind of statement may well make sense, and is the kind of logic behind the Goverment’s portrayal of benefit claimants as ‘scroungers’. However, to think this, and indeed, to declare it publicly is to completely gloss over a whole host of issues which he may well know nothing about which prevent disabled people accessing work, and a host of medical issues which make work difficult, some of which I have described below, This is to say nothing of possible discrimination, access barriers including need for specialist equipment not covered by Access to Work Grant, difficulties getting to and from work, and lack of transport to get there, extra costs, pain, fatigue… the list goes on.

I admit there may be some truth in some of what he says including that some people well enough to work to everything to prove they are too ill to do so. If there weren’t there would be no need for reforms, however, the levels of fraud are not nearly as high as the Government would have you believe. However, according to the article, “A poll of 4,000 family doctors by the Department for Work and Pensions in May showed three quarters feel that – even when there is no medical need – they are obliged to issue sick notes to patients”. This may well be true, and it is not the first time I have heard a GP asking that they could opt out of assessing patients fitness for work. If not they, then who? GP’s position as ‘Gatekeepers’ to NHS services makes them ideally placed to have overview of the main issues affecting a patient and the clinics they see and services they receive. I have already established that ATOS are in no position to do this on GP’s behalf, despite Peverley’s claim that “ATOS nearly always gets it right”!! He has also failed to acknowledge that Hawking is able to to pay for costs associated with his disability in ways that the majority of disabled people can only dream of. Money means access to better care, better food, higher quality housing and a better quality of life in general. This will have a positive affect on his impairment, despite its severity. He is so intelligent he can work using his voice only and has all the support he needs, something very few disabled people can say. Journalist Sonia Poulton‘s response to this article was to post a tweet containing Peverely’s reg. number for the General Medical Council for anyone who wished to complain!!

The last time I worked was in 2004. I did the kind of office job referred to in the article. I did full time (8.30-5.00) work for 6 weeks to cover sick leave, in the summer holidays while I was a student. For two weeks, I walked to work while my parents were on holiday, or I got a lift from colleges if they passed me on the way to work. Otherwise, my Mum drove me there and back. I don’t remember if there were steps in front of the building or not. I do remember that there was a lift. This was in the days when I was still on my feet, without a walking aid, or a wheelchair, except I used a scooter in term time to negotiate university grounds. I was also on minimal medication, and no prescribed painkillers. This was the year before my diagnosis of Chron’s disease too. This is all significant, because by the afternoon, I would have severe shooting pains from my hips to tips of my toes, and often stomach cramps too. I would be so tired I would have uncontrollable giggles, and my speech would be slurred. How very professional. I struggled to concentrate to do meaningful work, and I made mistakes. I was never disciplined over it though. Clearly not capable of office work, despite this doctors claims.

What about if I were to attempt this work today? Well, before I got to work I would have to be up very early because it would take me a long time to get ready. If my carer phoned in sick, the office may not be able to cover it, as I am often the first name on the rota, and not every one can work that early. Even with care, I often have to go back to bed to sleep off the effects of a disturbed night, or the effort of getting up and organised. If I did not do this, I would be asleep at my desk. This is often the case even try to write blog posts, which is why there was no post on Wednesday this week.

What about getting to the office? I am unable to drive because the part of my brain responsible for spatial awareness is too damaged, and reaction times were so erratic in the simulator during my driving assessment the Occupational Therapist advised that I would need to use hand controls to be able to drive but that I lacked the necessary co-ordination. Getting the bus is also out of the question, as I do not have the strength to propel my annual wheelchair on my own, and my electric wheelchair is too big. Taxi it is then. However, most taxis are the wrong size or shape to fit my wheelchair, and those it will fit are in demand. Even if I can get one, there is often no space between my head and the roof off the car, causing me a head injury if it crashed. I have been in town before, and even though I have pre-booked a taxi to take me home, none will turn up. I would need a motability van, but as I can’t drive myself, I would need a PA to drive one for me, even though funding is being squeezed in every budget including Access to Work, and the list of things which can be funded is now minimal. Add in cuts to social care and the disappearance of the Independent Living Fund in 2015 and this is an impossibility. (To read about the impact of these cuts on another disabled person, click here to read an excellent piece for the Indy’s Comment is Free by Jess Thom).

Assuming I could get there, I would not consistently be able to do any work for so many reasons… My pain killing medication exhausts me, making my speech slurred, and even then it does not take away all of the pain, and I often squirm in my wheelchair due to back pain, and other pain I cannot write about in a public forum. Then you add in the times my ileostomy bag bursts (which I cannot change by myself, and the bladder spasms causing me to wet myself. Have I forgotten anything? The last time I filled in a WCA form there were at least 3 or four extra pages of close written small script explaining my disabilities and the effect these have on my day to day life, including all the equipment I need to help me. Still think I can work?

Of course, I would love to be able to work, but at the moment is something I can only dream of. One of the reasons for starting this blog was to give another purpose to my day. I have been surprised and delighted to the response from my first post for a few weeks, about childhood dreams. Before you lose the will to live, I shall go off and take my medication, as the dispenser fondly known as the UFO is making itself heard! Until next week…

Why are disabled people fighting the cuts?

Jane explains what’s at stake much better than I can. I started allowing care to be put in too lste to apply to the ILF but perhaps I would have agreed more readily had I been given a taste of the kind of independence people with ILF have had. To hsve had it, and no for it to be snatched away is Indeed cruel. Independence is expensive so no one wants to vouch for it, all they see is pound signs. Many will be reduced to the kind of kife I often have. Bored because energy or support or money is not there to di what they want to do. Please pray about ilf if you pray, and fight with us before it’s too late.

Jane Young

Since the Coalition Government came to power, it has become increasingly clear that through a combination of austerity policies and ideological cuts (or ‘reforms’) the independence which disabled people have fought for over several decades is under real threat. These threats include, but are not limited to: the replacement of DLA by the ironically-named Personal Independence Payment, the scrapping of the Severe Disability Premium under Universal Credit, the closure of the Independent Living Fund and the pressures on local authority adult social care services which are increasingly under-funded and over-stretched. These latter two threats go hand in hand, and both are in the news today.

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With every breath…

Today’s daily prompt:

Who’s the most important person in your life — and how would your day-to-day existence be different without them?

I am wary of repeating what I have already written on this subject, as I have already written recently both about having no significant other (yet!) and how important my Gran is to me. Then, of course, there are the/my carers. Without them, there are some days I would see no one, and other days I would struggle to get out of bed. The other people I don’t think I have mentioned are my parents. There are other posts where I may not have mentioned them, but without them, I would not have achieved what I have. Their sacrificial, unconditional love would be the envy of many.

Were I to lose either or both I would miss them with every breath. I need them in a different way that other people need their parents. In some ways I still feel quite dependent on them, being single and disabled. This also means I do not feel as grown up as I might, with a significant birthday approaching. What I do manage, at the moment, is to live independently thus far. Time, my health and the actions of local and national government may yet change things. I don’t wish to talk to much more about my parents as I do not wish to embarrass them. However, they have done much for me and continue to do so. This includes te way both of them live out their faith and the example they are to me. As I’ve said, were I to lose either of them, I would miss them with every breath, every moment of every day.