Independent Living Journal

Care and Dishonesty - where have our morals gone?

2009-09-15T12:35:00.000+01:00

I wonder whether you were as shocked as I was to hear about the latest research findings on the subject of dishonesty.

Our legal system - and indeed the functioning of our society in general - is based on the idea that reasonable and honest people share an understanding of what constitutes a dishonest act. So it is rather dispiriting to find that less than half of women, and even fewer men, think it is dishonest for a care home nurse to put pressure on an elderly patient to change their will in their favour. In fact, it was regarded as only marginally more dishonest than snapping the stalks off broccoli in the supermarket before weighing/paying. More than 80% of these same people think that
it IS dishonest to lie about your age on an internet dating site...

The fear of being frail and dependent is one that haunts many of us as we get older: thinking that a majority of the people you may be relying on for your day-to-day care believe that it's OK to manipulate you in this way is really scary.

Whatever happened to the caring and compassionate society that was supposed to come out of the global economic meltdown? It sounds more like "I'm all right, Jack, devil take the hindmost" - if I can mix my metaphors! Perhaps the people who responded to the survey will change their opinion when they are faced with choosing residential care for their own frail elderly parent (after all, it will then be their putative inheritance that is being redirected) or better yet, themselves.

Certainly, there is an increasing interest in services offering to vet or monitor carers on behalf of the client's family, reflecting the widespread suspicion that not all carers are as compassionate or as altruistic as we would like them to be.

What do you think? It feels as if every time you pick up a paper or turn on the radio there is another story about vulnerable people being let down or exploited in some way, yet at the same time we seem to be enmeshed in more and more legislation designed to prevent these things happening. While inspections involve being able to tick lots of boxes on a sheet, and most of us have such a shaky grasp of basic morality, it is perhaps not surprising that there is such a gap between the standards we allegedly aspire to and what is actually delivered.

Bring it on! Disabled people don't need positive discrimination

2009-08-05T12:41:00.000+01:00

I found it rather depressing to read comments from some disability charities, criticising Scope for not reserving the post of chief executive for a disabled candidate. One, Mary Colley, the voluntary coordinator of learning difficulties charity Danda, went so far as to suggest that: "It would be difficult for a non-disabled chief executive to understand the needs of disabled people"

Surely, we have moved beyond the apartheid model, where it is held that the needs of disabled people can only be understood by other disabled people? Because taken to its logical conclusion, we would be saying that only a wheelchair user can understand other wheelchair users, only a blind person can relate to other blind people, etc ad infinitum. Society would then be broken up into lots of little, introspective groups of individuals who only want to communicate with other people just like them.

Now that the DDA makes it illegal for an employer to discriminate against a job candidate on the basis of an impairment, isn't it right that all the many talented applicants who happen also to be disabled, compete in a fair way with those who happen not to be?

Amarjit Raju, chief executive of Disability Direct, accuses Scope of traditionally having "a tokenistic approach to employing disabled people", but I suspect that anybody appointed to a position that they knew to have been specially reserved for a disabled person would feel very much "token". I applaud Alice Maynard, Scope's chair, for saying that their "priority is to find the right person for the job, and that person may or may not be disabled." The organisation wants to create an alliance between disabled and non-disabled people, and I suspect that most of us would endorse that as the sort of society we would like to live in, where our experiences as carers, friends, parents and colleagues are just as valid in enhancing quality of life and opportunity.

The truth is that every single one of us has faced some form of discrimination in our lives; each time we are rejected for a friendship, a sports team, a flatshare or a job, we experience the negative emotions associated with not being the chosen one. It is simply a part of life which we have to learn to deal with. Hopefully, it teaches us the valuable human quality of empathy, because that is what enables one person to understand the difficulties faced by another - not happening to share the same impairment.

When is impartial advice not impartial?

2009-06-16T12:23:00.003+01:00

I make no apology for returning to a subject that I've touched on before, when it is something as important as choosing the right mobility aid. The Independent Living website only exists to provide as much information as possible, so that anyone looking for assistance in any area of daily life can inform themselves of the choices available. Equally, where there is more than one possible solution, we always recommend that the user should "try before they buy" - preferably in a non-pressured environment, such as a Disabled Living Centre.

This is one of the reasons why we are concerned about the involvement of supermarkets in selling mobility aids, since it is bound to lead to people picking products off the shelf, without either knowing that what they are buying is the most suitable for them, or indeed that there are alternatives to what they see on display.

But we have recently become aware of an even more potentially hazardous marketing technique, namely the peddling of what purports to be impartial information, but which is actually only promoting the products of, and generating leads for, one supplier. We have seen examples relating to products from stairlifts to mobility scooters, and unless the reader had good knowledge of the market, they would probably not realise that they were being misinformed about product options, and directed towards a particular supplier who might not actually be the best option in their particular circumstances. What is worse, in order to receive the information, the enquirer is required to give personal contact details, and can no doubt look forward to a follow-up call with a persuasive sales pitch....

As always, it seems that the onus is on the buyer to practise constant vigilance; not to take information at face value; and to dig below the surface of any useful-sounding "free" offer - even if it is something as innocuous as free information. Somehow, that pamphlet has been paid for, and if it is not immediately obvious how, then you should probably be a bit suspicious about the motives of the supplier.

Sadly, many of the people looking for aids to mobility and daily living, are, by definition, more likely to be frail and/or vulnerable to high-pressure sales techniques. Perhaps the "good guys" in the industry - of whom there are many - should get together to stamp out promotional practices that are calculated to mislead?

Let us know what you think! You can post your comments, anonymously if you prefer, below.

Motability response on wheelchair accessible vehicles

2009-05-28T12:28:00.006+01:00

I wrote recently about the costs of buying a wheelchair accessible vehicle, and the fact that for many drivers, the Motability leasing scheme was not the best or most cost-effective option. Delia Ray, head of marketing at Motability Operations, has responded with the following comments:

"Motability maintains a range of highly affordable motoring options for all drivers. The Scheme has seen exceptional growth in recent years, in tandem with record levels of customer satisfaction, and this is across the range, on all types of cars.

For more than four years we have consistently provided more than 200 cars at no advance payment, including family cars such as the Ford Focus and Vauxhall Astra, plus a range of automatics.

In relation specifically to the VW Touran, both the 1.9 diesel and 1.6 petrol models are currently available at £799 advance payment.

As well as standard cars, we aim to meet the needs of disabled drivers who require adaptations, with a range of driving controls, including hand controls, at no extra charge. Last year more than 12,000 customers ordered cars with adaptations through the Scheme.

We also supply a range of wheelchair accessible vehicles at less than £500 advance payment, and now have more than 10,000 customers who have therefore been able to access the mobility that a WAV provides at the most affordable levels.

The cost of a Motability lease package includes all insurance, servicing and maintenance, breakdown cover, windscreen and tyre replacement.

Clearly, Motability is not immune from the economic climate, and car prices have increased from many suppliers in line with reduced levels of production, and the fall in value of the pound against the Euro. However, we are committed to providing a full choice of affordable cars for all our customers for the long term." Delia Ray, head of marketing at Motability Operations

You can read my original article, including an individual motorist's experience, and based on feedback from people in the conversion industry, by following this link:

Independent Living Journal: Motability and buying an adapted vehicle

And don't forget you can share your experiences with other visitors to Independent Living, by adding a comment here!

Charities still exploiting their position unfairly

2009-05-15T12:55:00.005+01:00

I am publishing this on behalf of a well-respected manufacturer who wants to remain anonymous.

"I thought you may be interested to learn about a letter I received a couple of days ago. An independent charitable organisation has approached us requesting we consider them to become a retailer of our products - no shocks there then, this practice now appears to be becoming very common.

The real shock to me was that they are hoping for big lottery funding at the end of September this year to allow them to set up a full retail outlet for mobility products!! Not only that but in the meantime they have requested that we provide them with an account on a sale or return basis!!

You can't blame them for trying I suppose, but somehow I just can't get my head around the fact that they not only expect us to fund the business venture through charitable donations (lottery funding etc) but they also want the goods they stock for free!!

Furthermore, what about our existing retail partners who are loyal to our products and with whom we have developed a quality business relationship - do they expect us to ignore them?

I am a great believer in competition, I think it engenders a healthy environment for development and improvement but - and it is a big but - there needs to be consistency and a fair, level playing field.

For all the reasons you have previously reported, charitable organisations have the upper hand over non-charitable business, and as a manufacturer we are deeply concerned at the emergence of these so called charity retailers as it puts us and our retail partners in a very difficult position.

Taking this situation to its ultimate conclusion, perhaps all businesses should simply register as charitable organisations? Either that or we could potentially see the slow decline of the business community as we currently know it."

I've written about the commercial activities of charities before, and although I have some sympathy for organisations that are doing good work, and hurting in the current financial climate, I don't see why good, caring businesses - which are probably even more affected by the credit crunch - should be disadvantaged in this way.

What do you think?

Support the BT Paralympic World Cup

2009-05-11T10:34:00.008+01:00

The BT Paralympic World Cup is back in Manchester between 20th and 25th May.

Now in its 5th year, the annual event is an important opportunity for British athletes to test themselves against a strong international field, and has been described by Sebastian Coe, Chairman of the London Organising Committee of the Olympic Games and Paralympic Games, as "...a significant stepping stone for many athletes aiming to compete in London and beyond and the event is a place where they can raise their game and test themselves against strong international opposition, providing vital preparation but also a great sporting spectacle along the way."

This will be the first major international multi-sport elite disability event since the Beijing Paralympic Games, and is expected to attract major international stars, as well as a strong British contingent. Over 400 competitors from some 31 countries are scheduled to compete, including ParalympicsGB athletes Nathan Stephens and John McFall and Paralympic legend Oscar Pistorius.

The Paralympic World Cup has been held in Manchester since its inception, helping it to cement its reputation as a host city with superb facilities, sporting history and a vibrant volunteering culture. World-class competition venues include the Manchester Regional Arena, Aquatics Centre and Velodrome, all of which will see action during the Games.

You can find out more from the ParalympicsGB website or by calling 0844 8471622. Or join the Official Paralympic Facebook Group

If you can't get to Manchester, look out for live coverage from the BBC on Monday 25th May.

Supermarkets Selling Mobility and Daily Living Aids

2009-04-25T09:39:00.004+01:00

Two major supermarkets, Asda and the Co-op, have both recently launched into the sale of mobility and daily living aids. The attractions for them are quite clear - we all know about the demographic shift which is growing this market as longevity increases and the post-war baby boomers become pensioners, demanding an increasing range of products to help maintain independence and quality of life.

Having already diversified successfully from their core food lines, where competition is fierce and margins narrow, into areas such as fashion, electronics and homewares, the supermarkets are keen to repeat the trick, using their strong branding and purchasing power to develop new and profitable ranges. Which in some ways is fine - as consumers we have certainly benefitted from the might of the big retailers driving down the cost of our weekly shop and increasing the variety of goods we can conveniently buy under one roof.

There are some daily living aids which fit perfectly well into the supermarket model, such as easy grip utensils, big button phones and remote controls, bath rails and non-slip mats - but I really think we need to ask the question: should walking aids, for example, be regarded as just another product to pick off the shelf along with the washing powder and coffee? Given that somebody who is looking to buy a walking frame necessarily has difficulties walking, and that choosing the wrong one could cause them additional problems, should we not be ensuring that they can talk to someone who is well-trained in assessing such needs and recommending a suitable solution, rather than leaving them to take whatever their local supermarket has decided to stock?

Co-op Xest, the website and catalogue via which the Co-op is selling their range, does not include wheelchairs: interviewed by the BBC, their spokesperson said: “... we are not selling wheelchairs and we have just under 1000 products, but wheelchairs are not amongst them because of the specialist advice that you need.”

Asda, on the other hand, appears to have no such qualms - visitors to the 75 stores piloting the sale of mobility products will be able to buy a wheelchair for significantly less than £100. Their spokesperson indicated that giving specialist advice would not be a problem as he expected their customers would obtain the necessary information from the NHS before purchasing from them. An interesting idea, but one that doesn't really stand up to close scrutiny. Will checkout staff be asking buyers whether they obtained appropriate advice before going to the supermarket? And how will they know whether the product they have selected accords with that advice?

This is just the latest example of major mainstream brands rushing to grab their slice of the apparently lucrative special needs market: we have already seen it with bed and easychair suppliers and bathroom manufacturers. You can certainly argue that the increased competition has done wonders for aesthetics: today's mobility and daily living aids bear no resemblance to the ugly functionality of a decade or so ago. But the cost has been an increase in inappropriate selling techniques, with vulnerable people spending significant amounts on products that are unsuitable for them, because the supplier is more concerned with making a sale than meeting the user's needs.

Having spent twenty years in this business; ten of them editing the Independent Living website, advising people always to make sure that they try a range of mobility products - ideally in an impartial environment such as a Disabled Living Centre - before buying, I am more than a little concerned at the involvement of the supermarkets. Selling mobility aids is about more than simply shifting boxes, and I think we all need to give this new development some careful thought, rather than sleepwalking into a situation where giant retail chains become the 100lb gorilla in this special market.

Motability and buying an adapted vehicle

2009-04-08T08:56:00.000+01:00

Any household with a disabled member will be even more dependent on their car than the rest of the population - and the overwhelming majority of us seem to be pretty much hooked anyway, even without being Jeremy Clarkson-style petrolheads. Not surprising, then, that the motoring section of Independent Living is very popular with site visitors, and equally unsurprisingly, particularly in these tough time, we have had some comments lately about the funding of a converted vehicle, and some questions about the role of Motability in the way that prices have risen recently.

This is an extract from a letter from site visitor Mike Morley, who has just bought an adapted VW Touran:
"I looked at obtaining the car through Motability but I would have had to pay an advance payment of about £6,000. I decided to buy the car myself as I had one to trade in and the hand controls were fitted before I took delivery. I was able to get the whole purchase exempt of VAT under VAT Notice 701/59, so all I had to pay was £3,900 and I kept the mobility component of my Disability Living Allowance. Obviously not everyone's circumstances are the same but every angle is worth investigating."

Mike also went on to point out that, if the initial purchase of a vehicle is VAT-exempt, then any repair or servicing can also be zero rated. All the individual needs to do is complete a declaration about their disability and the use of the vehicle.

The Disabled Motorists Federation is also concerned that disabled drivers and carers are having to pay over the odds for adapted vehicles through Motability. Their chairman, Jim Wheelton, has written an open letter expressing his worries - here is an extract:
"The Renault Scenic was a very popular vehicle that used to have a down payment set at around £1000, this has now shot up to £3195, well beyond the pocket of most of the present disabled drivers of this vehicle"..... "Because Motability are a government sponsored charity many disabled people go to this scheme thinking that, since the government effectively fund it, it must be the best. In actual fact the rates work out at over 17% in most cases, more than many credit cards are charging."

We are in a position to speak to many people involved in the industry, and based on their feedback, have put together an overview of the adapted vehicle market. It is clear that there are some rather major problems currently, and the steps that Motability are taking to redress the imbalance caused by having supplied so many vehicles at no upfront cost - like hiking the deposit back up to several thousand pounds - will obviously have an impact on the ability of many families with a disabled member to afford a Motability car.

Though perhaps with 500 cars a day coming back to the organisation as their leases terminate, haunting the auction rooms could be a better route to a find a bargain...

You can share your experiences of buying or selling an adapted vehicle, or working in the industry in any capacity, by clicking the "Comments" link below.

Looking on the bright side

2009-02-06T11:33:00.008Z

So the news this morning was, once again, full of bankers' bonuses - should they, shouldn't they, how should the rest of us feel about them. Personally, I'm having to work quite hard on not turning into "Disgusted, St Leonard's-on-Sea" when I think about large quantities of money going to people who have caused great difficulties for many formerly successful companies who are now struggling to find credit to finance projects, or to cope with their margins disappearing in the black hole caused by sterling falling off a cliff.

And to be honest, I was not much moved by the explanation that failure to pay bonuses - even when the businesses have performed miserably - would be de-motivating and cause the "best" people to leave. When other industries are being forced to lay off workers, or pay them partial salaries not to turn up for work, when many of us are putting in extra effort because we're afraid that if we don't, it will be our job that goes as the recession bites harder, it is difficult to believe that bankers are still so insulated from reality, that they will chuck in their job if they don't get an extra lump of money. In fact, if it really is the case that they would behave like this, all the more reason to withhold the bonus payments, and let them go out there and try to find another position...

What I would prefer to believe is that most people aren't really just motivated by money. That doing a job well - the more so when times are tough - is often its own reward. In this industry particularly, we are surrounded by examples of businesses and individuals who are achieving great things in spite of having to overcome obstacles the average merchant banker probably couldn't dream of. People who have set up their own businesses because the world of work has deemed them too old, too disabled or just too much trouble to employ. Employers with the imagination to 'take a chance' on somebody who doesn't, at first sight, look like the first choice employee, who yet repays their leap of faith by delivering beyond all expectations.

We've seen how bad untrammeled capitalism is at running the world - perhaps now it's time to back the people who don't fit into the narrow stereotypes of traditional success, and see whether imagination and good-will can get us a bit further than recent economic theories have.

Is charity just another big business?

2008-11-25T10:17:00.004Z

"Some big charities are more commercial than many traditional businesses, and are exploiting their charitable status as an unfair competitive advantage."

It is a bold statement - and reflects what an increasing number of smaller businesses are saying in private, if not in public. Casting aspersions on organisations such as Help the Aged, Red Cross, the RNID and RNIB, which are generally held in such high regard, is risky; not least because adverse comments are likely to be misinterpreted as an attack on the charities themselves, when in fact it is their trading activities that are causing the rumbles of concern.

This website provides information about products and services to help with living independently. Although what we do may be considered a valuable social service, we are not a charity, but are funded by subscriptions from reputable suppliers. Over the last few years, we have become increasingly aware of powerfully marketed product ranges emanating from charities such as those mentioned above.

There is a growing trend for charities to become involved in business. The government encourages this, having recognised the valuable contribution that can be made to delivery of social and healthcare services by not-for-profit organisations. The "third sector" is flourishing, with more than 55,000 social enterprises across the UK investing most of their profits in socially beneficial activities, rather than turning them to the benefit of shareholders or business owners. Charities who seek grants are advised that they are more likely to be successful if they set up a trading arm: grant-making trusts regard those with a business generating income as a safer bet than charities which rely on more traditional methods of raising money.

So charities are definitely part of the business environment, and they are not going away. It is perhaps not surprising that the leviathans of the sector have decided to exploit their brand recognition to market products to the public. These brands have been built up through decades of charitable work. Consumers may well be more inclined to buy from Help the Aged or British Red Cross because they know the name in a philanthropic context. Their purchase also becomes a charitable donation; nobody feels that they are doing good to anyone but themselves when they buy a hearing aid or a stairlift - but if it comes from the RNID or Help the Aged? And in some respects, their activities have been beneficial: for example, their concern to protect their brand gives them a powerful interest in ensuring that the products and services provided in their name are of the highest quality.

But there is so much confusion about what is charity and what is business that I don't find it at all surprising that many business people are suspicious of and threatened by the charities' commercial activities. Charities enjoy exemption from corporation tax, some VAT exemptions, and rates relief of at least 80 percent. Whilst the trading arms and any independent companies which run their businesses for them do not, the lines between the different areas are often very blurred. For example, from personal experience, charities expect (fruitlessly) to receive at no charge a subscriber page on Independent Living for which the companies they are competing with have paid the full price. They don't say: "We are the trading arm of charity x, so of course we understand that we should be treated like any other business." Rather, they tend towards: "We are a charity, so you should be donating your services to us." Or they request a link as a charitable organisation, but then direct that link towards their online shop. If they are not honest about what they are doing, how can they expect their customers or their competitors to understand what is going on? Charity shops selling new goods are already a powerful presence on the high street, undermining many small retail enterprises with a combination of big business-style purchasing power and charity-style tax breaks. 'Charity muggers' who ambush you with a hard sell designed to persuade you to commit to a regular donation are probably paid workers, rather than the volunteers they often claim to be.

The overwhelming advantage enjoyed by charities is their name and reputation. A traditional company selling goods in our market, however well-run and ethical it may be, will always be on the back foot when competing with them. But as they become ever-more closely aligned with the world of business, they should not be surprised if their carefully nurtured brands lose some of their lustre through the association.

A Duty Too Far?

2008-09-23T08:54:00.003+01:00

One of the most difficult topics ever broached is the "end of life" question, which has recently been projected back into the headlines by Dame Mary Warnock with her perhaps ill-judged comment that dementia sufferers ought to be assisted to commit suicide.

It is unfortunate but not surprising that comment has focused around the phrases with the most shock value, effectively preventing a balanced debate on what is a delicate ethical question.

"Right to life" and "Right to die" advocates are equally passionate, and both cases have merit. It is hard to argue the case against assisting somebody with an incurable degenerative disease to have a painless and dignified death at a time of their choosing, rather than forcing them to suffer weeks, months or years of pain and dependence while their disease runs its course. Yet at the same time, every human life has a value, and nobody except the person living that life can/should be able to decide whether or not it is worth living. It is very easy to see that the possibility of being assisted to die could metamorphose into the duty to take this route.

Society is excellent at being judgmental. Consider how smoking cigarettes has moved from normal, mainstream behaviour, to being discouraged, to being outlawed except in the privacy of the home. Now anyone brazen enough to continue enjoying a smoke is made to feel like a pariah. The same is beginning to happen with diet. Food packaging regales us with details of fat, calories, salt, and every advertisement urges us to take more exercise and stop eating so much of the fun stuff. I fully expect to wake up one day and find that the government has decided to ban chips, or put a 'health tax' on the price of a cream cake. And the propaganda is working. Everybody now knows that they should be eating a lot more fruit and vegetables, far fewer biccies - and we are beginning to look askance at those who don't follow the rules. One of my oldest friends - very fit and slim - actually apologised for taking sugar in her coffee; an automatic defence, she told me, because so many people take the opportunity of voicing their disapproval when she asks for the sugar bowl.

Now imagine that we manage to pass legislation allowing us the right to die. Initially, of course, we will be ultra-cautious. Individuals who want to pursue this right will no doubt have to jump through many hoops to demonstrate the hopelessness of their position and their fixed determination to end their life. Then gradually, as we become more at ease with the idea that mortality can be quite easily controlled - and as society strains to cope with the needs of many more elderly people - there will be a shift towards perceiving euthanasia first as a sensible decision for anyone with poor quality of life, then as a positively good way of easing the burden of caring for the frail, confused and disabled.

We may then find ourselves casting the same look of disapproval at an elderly citizen inching their painful way along with their walking frame, as we now do when we see a huddled smoker in an office doorway, or a fat shopper with a trolley full of carbohydrates.

Although I started by believing myself to be in favour of the right to assisted suicide, I find that I have now come full circle. The risk of abuse is just too great, and I for one would not care to live in a society where a single person was made to feel that they had a duty to die, for the greater benefit of the state.

Better Dead than Disabled?

2008-07-11T14:12:00.002+01:00

I have just read a shocking survey, commissioned by Disaboom, which suggests that more than half of Americans would rather die than live with a serious disability.

The research also showed that more affluent and more educated people were more likely to choose death over disability than those with lower incomes and poorer standards of education.

What on earth does this say about the United States? What would the results of a similar survey in Britain show? There may be very few but a militant minority who would actually choose disability rather than life without an impairment, but death rather than life? When we are surrounded by so many examples of people living fantastic, fulfilling lives despite serious disabilities?

I may not agree with their current political leadership, or their attitude to other countries' ability to manage their own internal affairs, but I have always thought of Americans as the ultimate "can-do" citizens. These are the people who believe in selling or spending their way out of economic downturns; who pity us poor Brits for failing to capitalise on our wonderful inventions; the home of the superhero, where any achievements are hailed with admiration, rather than envy or embarrassment.

So why are so many of them apparently ready to wimp out when it comes to dealing with disability? Is this a reflection of their inadequate public healthcare system, a general ignorance of the possibilities of independent living, or something else altogether?

What do you think? If you are affected by disability, please add your comments here - anonymously if you prefer - and we can compare our entirely unscientific survey of Independent Living visitors with our cousins across the water!

Heralding an end to ageism in the NHS

2008-06-27T10:54:00.003+01:00

Anyone who has achieved "retirement age" and had cause to visit their GP may well be aware of the rampant ageism within the NHS. One doctor at our own surgery was proposing a range of tests to identify the cause of my husband's sudden bout of exhaustion and weakness when he realised that he was 65, not 60 as he had thought, and changed his recommendations. No tests, just a prescription for a tonic and a suggestion that it was perfectly normal to feel like that at his age.

Although his manner was probably less subtle than the average, the message has been equally clearly received and understood by many older patients: if you are feeling unwell or in pain, it is very likely due to your age, and you needn't expect the over-burdened NHS to do much about it, now that you are no longer a productive member of society. Many of this generation, the last to be brought up with less confidence about their rights, have absorbed the message so well that they don't even bother to consult their GP, but simply live with conditions that limit their activities and enjoyment of life - and which could perhaps be ameliorated, if not cured.

So it was wonderful to hear that as part of its new anti-discrimination legislation, the government will make it illegal to refuse medical treatment on grounds of age. The new law will not, of course, endow the NHS with limitless funds, and hard choices will still have to be made, but hopefully they will be made on a case by case basis, rather than by reference to an arbitrary number.

Since ageism in the workplace became illegal two years ago, the number of people working beyond the official retirement ages of 60 for women and 65 for men has increased quite dramatically, with the number of older women in employment growing faster than any other group - 850,000 now; the highest since records began.

It is scarcely logical to treat individuals in one context as valuable members of a shrinking workforce, and in another as unwarranted burdens on an overstretched health service.

And can a society call itself civilised if it values people purely on their productivity anyway? The confused and frail old woman rendered passive by unnecessary antipsychotic drugs, or left dehydrated and malnourished by carers who have no time to care, could have been you or me yesterday. And unless we all act to change attitudes to the most vulnerable in our society, it may well be you or me tomorrow.

Have you contributed to the government's Independent Living strategy?

2008-06-10T11:45:00.009+01:00

Earlier this year, the government launched its Independent Living Strategy, a set of aspirations designed to work across government departments, in order to improve the life chances of disabled people. The broad aim of the Strategy is to remove barriers to disabled individuals exercising choice and control in areas such as housing, transport, health services, education and employment.

As many people have discovered, there is often quite a gap between national policy on Independent Living, and the reality on the ground - this strategy aims to fill the gap.

If you are wondering why I am writing now about a document published several months ago, it is simply because we are nearly at the end of the time allowed for consultation. Your comments need to reach the Office for Disability Issues by June 20th.

This seems a bold attempt to pull together the rather fragmentary policies and procedures that currently affect many lives, and one of those rare occasions when service users' opinions and ideas are actually being canvassed - and may even be acted on!

From the Executive Summary of the Independent Living Strategy (which you can download as a pdf by clicking here), here are the key points presented for feedback:

1. How best to involve disabled people, at a national level, in the monitoring of progress on implementation of the Independent Living Strategy, for example, by setting up an Independent Living Scrutiny Group.

2. We would welcome views on current arrangements for promoting the involvement of disabled people and their organisations and the contribution these arrangements may make to the monitoring of the Independent Living Strategy.

(The "current arrangements" include the Department of Health's aim to have a user-led organisation in every locality by 2010; the new performance framework for local government which encourages involvement of users in the commissioning and delivery of local services; and the Disability Equality Duty (DED) .)

3. There are many existing networks of disabled people which could be drawn together to provide a resource for the involvement of disabled people at local and regional levels in implementing the Independent Living Strategy. Is there a need for a “network of networks” to facilitate this?

4. The Independent Living Review’s Expert Panel advised of the importance of building leadership capacity amongst disabled people of all ages. They suggested that Partners in PolicymakingTM courses would be useful in promoting disabled people’s involvement in implementing the Strategy. Views are sought on current initiatives to build leadership capacity amongst disabled people, on whether further work should adapt the Partners in PolicymakingTM model, and/or whether there are other models that should be considered.

5. The Expert Panel identified a range of different mechanisms to support delivery of the Strategy. The Government Offices for the Regions play a key role and there is a need to assist them to support local strategic partnerships (LSPs) to deliver independent living policies, linking with user-led organisations, and monitoring implementation. We would welcome views on the best ways to assist implementation and monitoring of the Strategy at regional and local levels.

And finally, 6. Any other views on the Independent Living Strategy.

You should send your responses to:

Independent Living Strategy Consultation
Office for Disability Issues
Department for Work and Pensions
The Adelphi
1-11 John Adam Street
London WC2N 6HT
Telephone: 0207 712 2845
Textphone: 0207 712 2032
Fax: 0207 962 8096
Email: independent-living-review@dwp.gsi.gov.uk

As always, you can post any comments here too, for other Independent Living site visitors to read.

Wheelchairs with folding wheels - what do you think?

2008-05-13T13:04:00.006+01:00

An interesting new project came my way recently; a folding wheel - the Crossbreed - which is being developed by Duncan Fitzsimons at InnovationRCA, a product incubator unit at the Royal College of Art in London.

Initially designed for a bicycle, the Crossbreed wheel is now being adapted for wheelchairs, so that users can benefit from the easy manoeuvrability of large wheels with an integrated push rim, combined with the practicality of being able to fold the chair into a small package for transport and storage.

A wheelchair fitted with folding wheels could even allow a whole new type of wheelchair to be designed: one that can fold up into a small package similar to a golf bag in shape and size. This wheelchair could be as high performance as any other, yet fold up small enough to fit into an overhead locker on an airplane, wheels and all!

First models of this wheel will be made from carbon fibre composite, to meet the weight and stiffness requirements of the most demanding wheelchair users and Duncan hopes that these can be supplied at a cost which is as close as possible to non-folding high performance wheels. Further down the line he plans for a range of models to be made available for different budgets and performance needs.

You can find out more on the designer's website

What do you think about this idea? Is there room in the market for a wheelchair that folds much smaller than existing models? Or do you think that the current chairs with quick-release self-propelling wheels do a good enough job? Whatever your opinion, do please share it!

Piers Clough, an MBA student at Imperial College, has produced an online survey, to enable wheelchair users, carers and professionals to give their feedback. Click here to access it

"Shadows in Wonderland"

2008-03-20T09:34:00.005Z

I have been an avid reader for as long as I can remember, and even my day job, which involves trawling through articles, reports and media releases, many of them rather poorly written, has not killed my enthusiasm.

On the other hand, I probably wouldn't pick up a book about serious illness and hospitals if it hadn't come my way for review - but having started reading it, I found that I couldn't stop.

"Shadows in Wonderland" is written by Colin Ludlow and published by Hammersmith Press. It is his account of how he was found to be suffering from bowel cancer, his treatment at London's Royal Free Hospital, and how it all went terribly wrong. At the same time, it is a thoughtful analysis of the state of the health service in this country, how far apart are our expectations and the reality.

Colin Ludlow was a television producer before his illness, and his acute visual sense brings the hospital environment alive, in all its grimness. He makes the point, which had not occurred to me before, that our expectations of hospital are largely shaped by TV dramas, which condition us to expect a lot more action - and definite answers - than real-life medical treatment generally delivers.

His own experience, which he relates honestly and without self pity, is that medical interventions bring consequences, which may well be much worse than the patient imagines when starting their treatment. If we understood completely ahead of time, perhaps we would be much more reluctant collaborators in the process. So his initial surgery to remove a tumour in the bowel - a routine, albeit fairly major intervention - is followed by severe internal haemorrhaging, a dose of MRSA, and months of drip feeding, which sets off an unsurprising series of problems with his digestive system.

In reading this book, I learned that there is a word for illnesses caused by medics - iatrogenic - and also why it is necessary. The hospital environment itself, dreary, confusing and inadequately provided with simple facilities, such as comfortable waiting areas and natural light, is shown to be an obstacle to recovery. It is telling that the first time the writer finds himself in a hospital building which is bright, welcoming and restful, he realises that he is in a hospice wing for the terminally ill: you have to be dying before the NHS treats you like a human being.

"Shadows in Wonderland" is a compelling read, whether you are a healthcare professional or a "consumer" of the increasingly business-oriented NHS services. It clearly illustrates the fact that patients are more then just a set of medical conditions, and hospitals should be more than just a collection of facilities. Until we recognise this at the deepest level, treating the whole person in an environment that makes a positive contribution to wellness, the NHS is not likely to deliver the sort of results that we should aspire to as an affluent society in the 21st century.

In Sickness and in Health

2008-02-22T09:29:00.005Z

I spend rather more time reading and listening to the radio these days, as my arms remain determined to pursue their status as redundant appendages, rather than reliable tools. I continue as editor of this website, using iListen, voice recognition software, which despite hiccups along the way, as we learned to accommodate each other's foibles, has now become an indispensable part of my working life. Although still not 100 percent reliable, the fact that it can make possible a job that formerly required hours of keyboard and mouse use, is a testament to the progress that has been made in this area.

And when I heard Alan Johnson, the health secretary, announcing that in future doctors should be issuing well notes, rather than sick notes, to encourage employers and employees alike to think about what people could do, rather than what they couldn't, my own situation seemed to provide an interesting illustration.

Almost certainly, if I had an employer, they would have stopped me working many months ago, when overuse of the computer first made my hands and arms too painful to continue. Rest is always the first prescribed treatment for repetitive strain injuries, and - perhaps also with an eye on some very large tribunal awards for work-related disabilities - responsible employers take no chances with the long-term well-being of their people.

But not having an employer, I don't have anyone telling me I mustn't work. Independent Living is my passion, and I'm not about to relinquish it.

So, rather as the government minister is recommending that occupational therapists should be assessing how much and what type of work someone can do when they have been ill, I have run a uniquely qualified eye over my own situation, and acquired the necessary tools to help me keep working. I am not as productive as I used to be - but given that high productivity almost certainly contributed to the problem, maybe that isn't so bad. And most importantly, instead of adding mental health problems of stress and depression to my woes, I do wake up most mornings, focused on what I can do, rather than what I can't.

Fall Prevention - priorities

2008-01-21T10:04:00.000Z

"Fall prevention" is a subject that has exercised both the NHS and the government considerably in recent years. The National Service Framework for Older People includes prevention of falls as one of its "Standards", and health authorities around the country have been scrambling to develop Fall Prevention Strategies that demonstrate their focus on the problem.

Depending on whose figures you read, somewhere between a third and half of people over 65 suffer a fall in any given year, and the cost to the NHS of treating these fractures is very nearly £1 billion.

Preventing falls is clearly something that is well worth spending resources on, in financial terms alone, never mind the human costs of pain, lowered self-confidence, loss of mobility and independence.

And yet, all this high-powered attention has largely failed. The major effort has gone into osteoporosis screening and subsequent drug therapy for those identified as "at risk". Osteoporosis is a horrible condition, and there is no doubt that people whose vulnerability to it has been recognised will be grateful for the intervention. But the strategy has at least two weaknesses. Firstly, the test itself, which assesses bone mineral density (BMD), is not reliable, frequently either under- or over-estimating the condition, and therefore encouraging doctors to prescribe drug therapy for the wrong people. And secondly, the drugs - bisphosphonates- are quite expensive if over-prescribed. It has been calculated, for example, that the cost of preventing one hip fracture - the result of medicating 577 post-menopausal women for 12 months - is £120,000.

How does taking bisphosphonates stop you falling? The answer, of course, is that it doesn't. What it should do, is help to build up bone strength, so that the individual is less likely to suffer a fracture if they do fall. But as a means of preventing falls, it can have no value - and given that 80% of falls occur amongst people who don't have osteoporosis anyway, perhaps we should not be surprised that the overall strategy is not delivering the hoped-for results.

The real causes of falls are many, and can be complex. Certain illnesses, such as Parkinson's and Alzheimer's, bring an increased risk, as do some medications, notably antidepressants and diuretics, both of which are widely used in the most vulnerable age-group. Equally, there are many falls which could be avoided with a combination of exercise and commonsense. Exercise - and specifically gait-training - to improve strength, confidence and balance. Commonsense, to ensure that we remove hazards around the home (where most falls occur), such as rumpled rugs, trailing electrical flexes and general household clutter left in hallways.

Perhaps PCTs would do better to devote more of their resources to training their patients in how to keep themselves safe from falls, starting with those people most at risk due to medical conditions and medication regimes. Then we might see a real decline in the number of older people who lose their ability to live independently as the result of an accident.

You can read our guide to preventing and coping with falls here: Independent Living - fall prevention

Grasping the nettle of Incapacity Benefit

2007-11-21T11:17:00.000Z

The government is planning to introduce a new test for incapacity benefit. Commentary from groups representing disabled people has been almost universally hostile, and there are no doubt very real fears that pressure may be put on vulnerable people to take a job when they are not really able to cope. People with mental health problems and certain conditions with symptoms of varying intensity are likely to be most affected.

Currently, some 2.64 million people receive incapacity benefit; a figure significantly augmented by unspoken government policy over the years to keep unemployment figures at a respectable level by encouraging greater take up of incapacity benefit. In areas where jobs are in short supply, it is not unknown for as many as one in five of the working age population to be in receipt of this benefit.

Clearly, this nettle had to be grasped, and the government has been promising to do so for some time. I find the principle of introducing a test that focuses on what an individual can do, rather than what they can't, wholly admirable. It is surely right to work from a presumption of ability, rather than adopting a patronising attitude that people with disabilities are unable to make a contribution.

Since the Disability Discrimination Act became law, we have seen attitudes slowly changing. Businesses are much more aware of the needs of disabled consumers, and while the situation is far from perfect, it is significantly easier now for individuals with a range of impairments to access goods and services without a struggle. Places of work and education are required not to discriminate on the grounds of disability - if we make the case, rightly, to employers that disabled people have a lot to offer, surely we must apply the same criteria to judging the capabilities of an individual who is currently not in work.

All the research shows that people who work enjoy better health and well-being than those who remain on benefits for an extended period of time. And it is a fact that anyone who spends two years on incapacity benefit is more likely to retire or die than to find a job. This has to be changed.

When I wrote recently about the dangers of positive discrimination, the response was pretty mixed, with a number of disabled people saying that they found it so hard to get a job, they'd take any assistance that was offered. I still believe that the risks inherent in ringfencing jobs for individuals with disabilities outweigh any benefits, but at the same time, society must work to remove obstacles in the path to employment. A test that focuses on abilities, rather than incapacities, allied to a support system that will genuinely assist individuals in obtaining the skills and confidence they need to return to work, is surely a step in the right direction.

Your power chair - mobility aid or obstruction?

2007-10-12T12:52:00.001+01:00

In response to my recent article in the Spinal Injuries Association magazine concerning changes to EU legislation on wheelchair accessible vehicles (WAVs), Chris Povey has contributed the following article, which sets out one man's so far unsuccessful quest for a suitable powerchair to use as a "drive from" as well as for normal daily activities:-

Chris Povey writes:

"The part of the article where you suggest that wheelchair manufacturers might put disclaimer clauses on their products, rather than going to the expense of modifying them for use in a vehicle is, I feel, the real issue - namely the design of wheelchairs, be they powered or pushers, is wholly unsuitable for users' needs.

I drive a Braun converted Voyager from a powered wheelchair. I have noted/complained about/searched for a solution to the trend for chairs to increase in size and weight since the mid 90s. My last adequate one was the first mark Cheetah: since then seat heights have risen so I could not get knees under hand controls; frame widths compromise side entry (let alone using toilets); total weight makes overcoming steps by man-handling a health & safety issue.

I currently use an obsolete Invacare Twister, modified by a local bike co-op and an auto engineer to address the problems I found with the original design.

For my last vehicle I decided I wanted, after thirty odd years of absence, a head restraint. This could not be fitted to the vehicle, so I pushed for one attached to the wheelchair - if it could be moved out of the way for normal living. Nothing exists in the market so the vehicle converter made one out of a spare ramp actuator. This has worked perfectly for two years.

I then decided to design my own wheelchair seat with the minimum features needed to live all waking hours in the same seat. It would need to pass vehicle crash testing, and more importantly, survive day to day living and be easily repaired. I based my design on high grade, light, strong marine and climbing components, mostly aluminium and titanium. The maximum width is 57 cms (actually it can be less - probably 55 cms - I want to increase comfort by having a wider than normal cushion).

The rising headrest has been incorporated with smaller, lighter actuators and designed so that it rises in an arc to position itself better. The armrests have been the hardest parts to design, probably because I have set myself very difficult requirements.

They must be operable in the dark, one handed with spinal injury C5/6 dexterity. They must work from a single pillar set well back so that the vehicle seat belt works optimally for crash testing.

Another major design problem has been to remove welds, as these break down on armrests.

The original intention was to make a couple of these seats, then transfer them to power bases for the rest of my life. The original fabrication costs (£4000 - £5000) would be absorbed over that period by cheaper bases, which from past experience last about three years.

In Autumn of 2005 I met the CEO of Dundee-based manufacturers, Lomax Mobility at a function, and was very surprised to see that the base of their Powermax wheelchair would nearly fit my requirements.

I negotiated with their engineers that I would get the seat fabricated if they would modify the Powermax frame so it would offer a lower seat option. Their technology is old but reliable; I was willing to sacrifice range for reliability and a very small footprint of chair.

Lomax were then taken over by Sunrise Medical, who shelved the project. Had it continued as I wanted, there would now be a working, marketable, small footprint powerchair admirably suited to the 'drive from wheelchair' option. It would have an integral, retractable headrest; repositioning of seat tilt and back incline - all features vital for a reasonable cost "travel in vehicle" wheelchair. Equally, it would fit easily into a metro-type taxi, would be light enough to avoid breaking its ramp, and would be manoeuvrable into the rearward-facing position required by taxi insurance. The headrest in up position would prevent what I am assured by a vehicle crash testing expert is the inevitable decapitation of a wheelchair user in a forward shunt accident in a taxi.

My design for the ultimate seat on a Lomax base was only the first step. I want a long-range variant. I will probably have to design a base as well, using lithium batteries in a container which can hold two chargers, to run in parallel for fastest charging; transfer board; tools; and spares. The footprint will be as small as possible, for train/bus/taxi travel. The total target weight including batteries is less than 70 kg.

After that I would want to increase the maximum speed so that the powerchair can use cycle paths. The objective being that an urban user should not need private transport - looking towards the day when buses are required to become DDA compliant. From talking to people who are working on projects to motorise such modes of transport as bicycles and rickshaws, it appears that it is cheaper and lighter to buy volts rather than amps; so the motors on powered wheelchairs need to run at much higher voltages.

I want to simplify chair controls. I only need two settings: one to carry drinks and the other to avoid able bodied people who step in my way without looking. The first requires very low acceleration settings, the second requires extremely high settings. A possible third for higher speed on cycle ways will suffice.

I don't need lights, indicators, horns, or seat positioning on the main controller; if you want them, then have them as separate remote/radio controlled units.

What we need is simple, reliable, easy-to-use controllers that won't go 'rogue' as can happen with some more complex units. I don't want seat risers, pneumatic tyres, automatic brakes, suspension, kerb
climbers etc.

I want to use pub toilets, even with a guard on the door - not their car parks. I want to get my knees under restaurant tables. I want to get into those pubs and restaurants in my powerchair - even if they have steps.

The problem is that Sunrise, Invacare, Pride, Balder, Permobil etc do not seem interested in designing to do these things. In my experience, it's not the engineers in these companies that are the problem. They have generally given me pretty good service when necessary.

It appears to be the more peripheral departments, like marketing and legal, who want ever heavier, more stable machines with extravagant options such as suspension, seat risers and standing facilities.

Maybe we the users and our professional advisers are the culprits: we have forgotten that wheelchairs are primarily mobility aids for going to places - and increasing the weight and size cuts down the number of places we can get to."

Carers and Caring

2007-09-25T14:46:00.000+01:00

September is rushing by at even more than its customary speed - after the more languid months of summer, everything seems to move up a gear at this time of year. One of the customary markers on the calendar for those of us with an interest in independent living is conspicuous by its absence this time round. I'm talking of course about the annual exhibition which shares our name, and has been held regularly at various London venues until the last event staged in 2006.

Whether this absence represents a hole in your diary or a welcome reprieve from what seems to be an ever increasing roster of exhibitions will depend on many factors. Personally, I have definitely been suffering from exhibition overload in the last few years, and this seems to be a feeling shared by many businesses in our industry, who find themselves trying to stretch their marketing budget around an increasing number of shows, which may or may not deliver the audience they are seeking.

Visitors also are expressing their interest in less stressful forms of research, with a growing enthusiasm for online, virtual events, where they can catch up with the latest news in the comfort of their own home or office, and at a time that suits them.

For Age Concern, last week was "silver surfer week" - a time to highlight increasing internet use by older people. The driver for this rush into new technology is, apparently, the desire to stay in touch with grandchildren who probably don't live nearby as they did in earlier generations. Internet, email and mobile phones are therefore essential tools. Whatever the reasons, the over-65s now spend more time on the web than the 18 - 24s, making products and services of interest to this group a real growth area.

Carers have been very much in the news recently - and there are perhaps a few small signs that they are moving up the political agenda as well. Such a large group of people, who are estimated to save the country as much money as the entire NHS budget - £87 billion - every year, certainly should be receiving rather more attention. Already, ten percent of the population is caring on an informal basis for a friend or family member who can't manage alone: as increasing numbers of us develop diseases such us Alzheimer's, this percentage is bound to grow.

Caring for each other, gladly and without expecting recompense, is an important part of the glue that holds society together: as we see it become increasingly fragmented and dysfunctional, it seems ever more vital to cherish those elements that still work. Even if it was affordable, can you imagine anything more soulless than a world where all care was delivered professionally and in an institutional setting?

Don't forget that we have an extensive area on the site dedicated to resources for carers

Please let us know if you come across any useful products or services that aren't yet included. And of course we always want to hear about your personal experiences, good or bad.

Please feel free to add your comments here.

World Alzheimer's Day - 21st September

2007-09-06T12:01:00.000+01:00

As we approach World Alzheimer's Day, on the 21st September, it is sobering to think that dementia is now second only to heart disease as a cause of death in Great Britain. And yet £5.5 million is spent on Alzheimer's research in a year, compared to the £188 million spent annually on cancer - now nudged into third place in the league of killer diseases.

An estimated 800,000 people in Britain are currently suffering from dementia - and will eventually be killed by it. This is the illness that we most fear developing as we grow older, and yet NICE has decided that sufferers in the early stages of dementia should not receive treatments costing £2.50 a day which can slow down the development of symptoms. This decision was recently upheld by a judicial review, even though the drugs in question are widely available to sufferers in other parts of Europe.

Six million people in Britain currently act as informal carers for friends or relatives who are unable to live independently without support. Demographic changes are bound to have an impact, as longer lifespans bring a steady increase in the number of people suffering from age-related conditions such as Alzheimer's.

There are no cures, and so far, few effective treatments, a situation that can only improve slowly, if at all, while dementia remains the cinderella branch of medical research.

At the same time, there is a big question mark over the standard of care offered to sufferers. A survey last month suggested that nearly 60 percent of nurses would not report abuse of an elderly patient or care home resident, through fear of making an incorrect accusation or of reprisals. The same survey found that more than 10 percent of the nurses would not want one of their own relatives to be cared for in the institution where they work.

No wonder fear of finding ourselves increasingly frail and helpless as we get older is so prevalent!

So what can we do? First of all, on a personal level, we can make it less likely that we will develop dementia. Eating a healthy diet, high in fruit and vegetables and low in saturated fats, is a first step, along with giving up smoking and drinking alcohol moderately. There is good evidence that remaining physically active helps, as well as exercising mental faculties and maintaining social activities.

More money for research will depend on making dementia more compelling as a cause. Goodness knows, that should not be hard, given the statistics, but it is still the case that heart disease and cancer are the automatic choices of many when deciding where donations should be made. And as for the NHS - one articulate, high-profile cancer victim seems better able to influence spending decisions than an army of carers and dementia sufferers who tend to remain largely invisible.

We can make it clear to the government that more money needs to be spent on dementia care by supporting the campaigning organizations such as the Alzheimer's Society and Alzheimer Europe.

Politicians probably don't need reminding that older people are the most consistent voters: the party which pledges adequate resources to deal with a condition affecting one in 14 of the over-65s, one in six of the over-80s, is likely to see the benefits in the ballot box.

Disabled Workers' Co-operative

2007-09-03T11:40:00.000+01:00

You may well have come across the Disabled Workers' Co-operative during the last couple of years: project manager, Neil Wood-Gaiger, has been tireless in raising awareness of their work as widely as possible.

The charity was set up with lottery funding as a forum for disabled people to advertise their skills and for employers to find qualified and motivated applicants for their vacancies.

There has been considerable debate recently - both here and elsewhere - about the rights and wrongs of positive discrimination. There is absolutely no doubt though, that many disabled people find it extremely difficult to get a job, and a service such as the Disabled Workers' Co-operative, which provides an opportunity for workers and employers to make contact, must be a useful addition to the employment market.

I have just heard from Neil that the project is in a financial crisis. Since their funding contract ended at the beginning of the year, they have kept going on their small reserves and the goodwill of the people involved - a situation that couldn't last for very long. Although they hope to obtain some European funding next year, this is not certain, and in any case they are facing financial difficulties right now.

If you feel able to help with a financial contribution, I know that it will be much appreciated and well spent. It seems a real shame that all the hard work and hopes of the last few years should go to waste.

This is a link to their website www.disabledworkers.org.uk where you can read more about their work and how to help.

If you currently have a job available, advertising it here is a great way of demonstrating your commitment to equality of opportunities. If you are disabled and would like to be more fully occupied, you can list your skills in an arena where potential clients or employers can readily find you. There are opportunities for voluntary work too, if earning is not a prerequisite.

An extra burden for parents of disabled children

2007-08-07T12:11:00.000+01:00

Children are expensive - and the parents of disabled children have many extra costs in addition to those faced by every family.

A nasty extra surprise may be in store for families with teenagers, as local authorities are now able to charge for transport costs to special schools once the students are aged over 16.

Parents often find the that they have to travel a considerable way in order to find a school or college that meets the needs of their disabled child: the nearest school is often just not an option. So it seems pretty tough to present them with a bill for transport when they really have little choice in the matter, and especially when the government is trying to encourage everybody to remain in full-time education until at least the age of 18.

In rural areas particularly, this extra cost can be quite heavy.

If you agree that this places an unfair burden on families, you can sign the petition that has been set up on Downing Street website:

http://petitions.pm.gov.uk/disabledtravel/

And let us know what you think! Anyone can comment on any story posted here - just click the button and have your say.

What do you think about positive discrimination?

2007-08-03T18:45:00.000+01:00

"Make disability news" goes the headline in the sits. vac. entry for an editor for Disability Now, billed as the UK’s leading disability monthly.

It sounds a great job for anyone with a passionate interest in people, society, the news and issues that shape the lives of disabled people, carers, campaigners...

But read the small print, and you realise that it isn't a job for anyone who fits the criteria - no matter how well qualified you may be, there's no point applying unless you are also disabled.

"Time to get equal" says Scope - but when did positive discrimination ever improve the situation for any minority? You've only to look at the media coverage of female Labour MPs who were elected on the basis of their gender in Labour's '97 election landslide to see that nobody benefits from such attempts at social engineering, however well-intentioned. Those who are arbitrarily excluded feel rightly resentful; those given preference must surely ask themselves whether they would have achieved their position on their own merits. And they must continually sell themselves to sceptical colleagues - a tiring distraction from the task in hand.

So what is Disability Now thinking of? It cannot surely be that only disabled people have an insight into issues of disability and equality. What about the parent who has negotiated the maze of social services, education and healthcare on behalf of their disabled child? Or anyone who has cared for a family member with a long-term illness or disability? Are their experiences less appropriate? How about people with professional or commercial experience? Therapists, teachers, specifiers... still not relevant?

Perhaps this is why the DN post has remained unfilled for so long: the people with the necessary skills and talents would really prefer to be selected on ability, not disability.