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!

Welfare State: Benefit Britain 1949

Below is my thoughts on Channel 4’s ‘Benefits Britain’ programme, aired 12/08/13 at 9 pm. If you live in the UK, I am sure you can watch it online. Be warned, this post contains spoilers! You don’t have to have seen the programme to be able to debate the issues raised… this is currently a ‘hot potato’ about which nearly everyone has an opinion. Would love to know what happens in other countries too, when people are unable to work, for whatever reason.

I have to admit, I was rather skeptical whether Channel 4’s latest programme about the problems with the Welfare State would prove anything. This time, they went back to 1949’s rules about who should, and should not, get benefits. For television’s sake, redecorated a couple of buildings to look similar to 1949’s equivalent of Jobcentre Plus, and gave the 1949 rule-book to a couple of welfare assessors with 60 years experience between them. It was interesting how much tougher the rules were. If you had paid into the system, you got the equivalent money you would have got in 1949, which meant initially that Melvyn and Karen got money, and young Craig only got emergency money of about 7 pounds for a week.

It was interesting to see how much the assessors were allowed to meddle in people’s lives, but it did mean Melvyn got help when he was unable to cope. His brother and sister were too elderly to help, and none of the neighbours said they had any time to help him. This, I think was one of the saddest parts of the programme. If this was genuinely happening in 2013, then he could have been struggling on his own, in debt, with no-one to help. This has actually happened, where people have eventually died of loneliness and starvation because they have been unable to cope and no one has noticed. Back to Melvyn later. (I’ve been calling him ‘Norman’ in my tweets!! D’oh!)

What of Karen? Overweight, with diabetes, heart problems, arthritis, and the rest. She did not welcome the benefit assessor “‘spying'” on her, or the intrusion into her life, but it did transpire that her son did almost EVERYTHING for her. What kind of life does he have? He’s an adult with his own life to live. This kind of thing makes me very uncomfortable, even more so where younger, teenage or child carers are involved. Twitter was not kind to Karen in general, especially when her attitude was on show, and the swearing started. The medical was interesting too, as it asked her to do practical tasks which actually have a bearing on real life! Invisible disabilities were not recognised in 1949, as I expected. She was judged to be capable of ‘light’ part-time work. I’m sorry, but even I do more than Karen round the house and that’s even though I have carers to do the really difficult things. It’s wrong to compare disabilities, but I live with chronic pain, like she does. There is nothing for it but to get on with it. I was hoping the workshop type environment would help her, but she refused to do anything, instead breaking down in tears. I am glad the public have seen how being contant agony can wear someone down, as it is something which can have a profound impact on your quality of life. However, this will be lost on people because they were too busy judging her weight, and saying all she did was sit on her bottom. The last bit was true. It is very difficult to lose weight when you have mobility problems to begin with, for sure, but diabetes and so on does not have to be a disability. I know people with severe diabetes who work or have worked all their lives. I think part time work would help her self-esteem and her confidence, and give her something to focus on besides the pain.  It is true that if she were judged capable of doing some work in 2013 she would not be on full benefit, as disability activists have rightly pointed out. Pain does play absolute havoc with your ability to concentrate and all the rest of it. Karen in a vicious cycle by the looks of it, similar to myself. You are in pain and unhappy so you eat, you are unable to burn it off, so you put on more weight, then you are in more pain, so you are more unhappy and you eat more… you get the idea. She needs specialist intervention to help her manage it all and lose weight, but it’s easy to judge when you only see edited snippets of someone’s life on a television programme. However, her attitude really did not help her, and won’t help her in 2013 either.

My friend Sue Marsh (@suey2y) thinks the producer specified which kind of people s/he wanted for the programme in order to stick to conventional stereotypes. It is true that Karen’s character at least was a stereotype; but she has gone further than this and said “Showing someone bedridden told they must attend WRA (work related activity) wld have been explosive”. This may be true, but someone laid in a bed with an invisible disability would be open to the same accusations that Karen was, of faking or exaggerating the extent of the disability. Also, if Twitter did go crazy, the press would swoop, and after the 5 minutes of interest in their story the person would be dropped for no longer being interesting.  In my opinion, it is the luck of the draw who reads the medical form which describes how your disability impacts your life – I got someone who understood, and I also had lots of pages of close handwriting explaining everything. Someone also said on Twitter that each person was a stereotype: an older person forced to go into a home; a wheelchair user, and a ‘malingerer’ with invisible disabilities.

The final participant, Craig, , who has spina bifida and uses a wheelchair, was completely lovely. Initially he only got emergency help of £7 something as he has never worked. Not because he didn’t want to work. He was completely capable, but had just never been given a chance. However, he was given a training allowance similar to his benefits now, a medical, which rightly judged sedentary work to be best, and a day’s work experience in a call centre. He did brilliantly. More of that later.

The programme raised at least three interesting issues:

1. Disability quotas, introduced after the war and abolished in the 90’s once the Disability Discrimination Act came into force in 1995 forced employers to take on a certain percentage of disabled workers. If they refused, they were punished accordingly. Equally, the numbers of disabled people of working age in work was much higher, about 94 per cent compared with just over 40 per cent today. It was heartbreaking to see the likes of Craig, lovely, with a great attitude, who desperately wanted to work, unable to get even work experience in 2013. He had never worked, so had no work experience, so could not get a job, a vicious cycle he could not get out of however hard he tried. However, the 1945 system gave him more results – work experience, and a job offer, which he gladly accepted. Should ‘disability quotas’ be reintroduced into the workplace?

2. The issue I discussed in my previous post, that one system of assessment does not fit all. There was no “‘mass production'”  but instead, a completely individual, ability based approach was put in place instead. Of course, they were dealing with much smaller numbers in 1945, and mostly war-wounded or industrial industries, which is completely different to someone with multiple impairments today where it is hard to say what work is suitable if any. Of course, I would not have survived birth in any age before now, nor would most of the babies born with multiple impairments who will never be able to work. They simply would not have survived. There are debates to be had about how much intervention is too much, and what constitutes quality of life. However, that is a debate itself and for another time.

3. As was mentioned in the programme, some of the impairments which Karen had existed, but were simply not recognised. The female assessor asked at the end of the programme whether it was right that 2013’s sickness and disability recognise a wider range of impairments. People are living longer, and therefore develop more complex health needs, and the state cannot afford to keep giving out. However, where do you draw the line? I bet if you asked people on the street that each person would give a different answer. Twitter was vocal, and almost unequivocal – Karen was ‘fat’, ‘lazy’ and ‘should’ get a job. That’s putting it mildly. To give you an example, @CavanaghJess said: “Being overweight and diabetic is not disabled love. GET A JOB!!” As was pointed out on twitter, if she was ineligible for benefits they would have been taken off her, or not given in the first place, but her situation does raise difficult questions. We ignore them at our peril.

Someone on twitter did question whether Karen could work in a call centre, but she could work in an office if she had voice activated software that would answer the phone for her, and she could speak to the computer what she wanted to say and software would type. She might be eligible because of her chronic pain and arthritis, however, Access to Work, the Government Grant scheme which pays for help an equipment disabled people need in order to work no longer provides this, so it would depend on whether an employer was prepared to pay the costs. If a small business owner was faced with a choice between someone healthy, with a compliant, friendly attitude, who was prepared to work hard, or someone who needed adjustments made and potentially expensive equipment bought for them, there is no way someone like Karen would have a chance of employment.

At the end of the programme, the three guinea pigs, sorry, participants all met up and were asked by one of the assessors who they would give the benefits / allowance to if only one of them could have it. Melvyn, the pensioner said Craig was more deserving than he, despite his tough experiences in the programme. However, Craig refused. Karen then kicked off and said she had more wrong with her than Craig and therefore deserved it more. Karen and Craig both had different attitudes to their disabilities, and it really showed.

The two assessors both had questions at the end of the programme. One, questioning that there’s something really wrong with a system if it cannot provide for the most vulnerable (hear hear!!) and the other assessor questioning whether the range of conditions considered for help was too large, and questioning whether the system should keep giving handouts. Would love to know what you think!

There was a lovely moment at the end of the programme where the ‘assessors’ gave Melvyn back the watch he had pawned in order to survive (his grandfather’s) but many others have to do the same, with no one to buy it back for them.

Would love to know what you all thought of the programme, or indeed if you have any opinions on, or answers to any of the questions raised in this post 🙂 Until Friday…