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Caring for the vulnerable

Jane Campbell

Published 11 August 2008

Over-reliance on family members can seriously weaken the very relationships we are going to need. Plus how the the country with the greatest longevity cares for its elderly

Our approach to care today is little more than a safety net, providing limited protection from the worst excesses of neglect, hunger, abuse, isolation and physical and mental pressures.

The best way to modernise public service care and support is to adopt an approach based on promoting equality and human rights. Then and then only would we guarantee the essential freedoms we want for everybody.

Many have concluded that publicly funded support is an unaffordable option in our ageing society, focusing instead on expanding the family’s role. But I would question whether the projected three million extra unpaid carers is economically or socially sustainable.

If we value our families and private lives as essential freedoms, we might arrive at very different decisions about the best balance of responsibilities between the individual, family and state.

As someone with a disability myself, I know that if my personal assistants go off sick and I have to rely on my husband for the support they provide, the main service we very quickly require is Relate counseling! Over-reliance on family members can seriously weaken the very family relationships we are going to need. People require support to maintain strong family life.

The need for support is too often a trigger for the individual or a family member - more often than not women - to leave paid employment, bringing avoidable hardship. Families should be eligible for support, which optimises their collective opportunities for paid employment and mitigates the risk of poverty, including by extending working lives.

Progressive employers are already beginning to ask whether choosing to rely on unpaid care over developing our public services is in the best interests of productivity and growth.

There has been a number of recent disturbing cases of men with learning disabilities being targeted, tortured and murdered. Kevin Davies from Gloucestershire and Steven Hoskin from Cornwall died at the hands of people who had variously subjected them to physical and mental torture, beatings and confinement. In a number of such cases, the attackers had engaged in a lengthy period of 'grooming', exploiting the vulnerable situation in which these disabled people led their lives, isolated and largely unsupported, by becoming their ‘friends’.

Independent advocacy would help people with learning disabilities make better decisions about the people they befriend, so promoting their security without compromising their freedom to live in the community.

Currently those receiving a care package cannot transfer that package to another local authority area should they for example wish to move to take up a job offer or to be near the informal support of family members. We should finally free people from the long shadow of the Poor Law, allowing the 'portability' of care and support from one area to another to give those who require support the freedom of movement they do not currently enjoy.

Equality and human rights provides the best framework for creating a system which allocates and is seen to allocate resources fairly, and in the best interests of individuals, families and communities as we meet the challenges ahead.

Baroness Jane Campbell is Commissioner of the Equality and Human Rights Commission

For more information on care and support click here


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3 comments from readers

Carl Jones
12 August 2008 at 01:09

Jane, the future is "local", we need to get back to a society where families stay where they started. My mother lives in North Wales, my Father in France and I in London....this is utter madness.

"Allocate resources fairly"....here is the NWO lecture, there won`t be enough resources, so its going to be rationed. Once, the pension coffers were full, so full, that everyone could have retired early on a good pension, but the NWO didn`t want this, they wanted to lift the retirement age, never mind that many people never make it to retirement. I wouldn`t be supprised if the numbers are being massarged.

Look at Amerika, pensioners have a choice, eat, or drugs, so they eat cat food....this is Englands future, but the Welsh and Scots will be ok.LOL

Claire
12 August 2008 at 08:33

I had to take a year out of work to care for my father in law. In the end I managed to find time to go to my GP and ask her to dose me up on anti depressants so I could cope. Its taken another year for me to get back into full time professional employment - a combination of the hole in my CV and shattered confidence. There was no support available. Don't tell me that was good economics, good for my father in law or good for me.

chessman
11 September 2008 at 01:34

I am registered blind, I use digital hearing aids and am a wheelchair user. (I have Alstrom Syndrome a rare set of problems including: deafblindness, diabetes, obesity and chronic heart failure, but can also include liver, kidney, lung and hormonal problems. I also have DISH (Diffuse Ideopathic Skeletal Hyperostosis) or Forestier's Disease which is akin to Osteoarthritis but worse. I have very little movement in the neck and chronic pain in the spine, upper arms, numbness in my fingers (even though I'm typing this on a pc it's very difficult for me), also pain in my hips and all the way down my thighs and legs. Despite all this i am quite independent and just have to get on the best i can with my sister-in-law the only person coming to assist once a fortnight to clean and do odd jobs. I get no care from social services, all they want to offer me is Direct Payments which at £9.97 an hour (the maximum Social services say they can give me and a maximum of 20 hours help which isn't good enough) less all the things you have to pay to register a carer suc as Sick Pay, National Insurance various registrations only just allows for the bear minimum of £6.50 an hour (the minimum wage) having taken these payments that i would have compulsorily to pay before paying my carer is not enough. to get the right amount of care I would need, I would have to pay someone with the right qualifications somewhere between £30-40 an hour and I would need somewhere between 50 and 80 hours a week, some weeks in areas outside where I live and even overseas with accommodation and other costs involved. (This is because, although I don't work due to disability and don't havethe stamina to learn, I attend a lot of meetings and conferences on behalf of Alstrom Syndrome UK and as this is a charity I'm not paid to attend those meetings but I do it for interest and information as well as representing other people with the same syndrome as myself, i am also a very strong chess player thus having to play in places like Devon and overseas, and the hospital which is the only one in the UK for treating Alstrom Syndrome adults in the country is in torquay) The Government wont pay for this number of hours or the accommodation for my guide and other related costs, and says I don't need the help. I can't pay for it, although I have been paying my own costs for as many years as I can remember: I do receive Disability Living Allowance Higher Mobility and Middle Rate Care (I am not eligible for Higher Rate simply because I have a ground floor flat, can get in and out of bed, dress myself and use the toilet. If I'm away from the flat for any reason, I need help going to the toilet, I need help getting in and out of a taxi, train or aeroplane, indeed need carrying up or down steps in some instances, finding somewhere to eat, help sorting clothes, just to mention a few of the hundreds of things I need help with. if I'm not eligible for the Hgher Rate of Disability Living Allowance Care, I'm also not eligible for Independent liing Fund Allowance). All this spending has left me in debts of many thousands of pounds and I fear I will eventually become bankrupt and have to stop doing my many activities which keep me sane and active. I would wish to do more. i haven't done any swimming since my back deteriorated and meant six years ago I had to start using a wheelcair most of the time, although I can get out with difficulty with help to get into a taxi or car or on to a toilet or chair so long as they are close by. i haven't got the confidence and would need to learn from start as if I haven't swum before as I don't know how my body will react to the new disabilities, I assume i will be in a lot of pain and believe I will float on my back but may sink on my front as I am 15 stones in weight. My exercise is Other movements via my legs and arms in the chair or someone taking me out, for fresh air or to local chess matches because of my complete blindness and partial deafness, I don't go out on my own unless in a taxi or very rarely someone assisting me in their car. In short, what do others say in comment to all I've said?

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