It is now 10 years that the Independent Living website has been here, providing impartial information for carers and disabled or elderly individuals looking for equipment and services to help them manage more independently.
Perhaps not surprisingly, site visitors have sometimes confused us with the local organisations which are generally known as an Independent Living Centre or Disabled Living Centre. Given the similarity of the names, it is an understandable mistake, and to be honest, considering ourselves all to be in the same business of providing information without strings, we have not chafed at the confusion, and have often directed enquirers to their nearest DLC, as the place where they could try out a range of equipment without any commercial pressure.
Sadly, this fundamental fact about ILCs or DLCs is not a fact.
Depending on which centre you visit, you may indeed find that you can view a range of equipment, and perhaps try it out, or you may find that you are in a mobility retailer.
Without any apparent debate, it seems that a number of DLCs have turned themselves into shops. I find this difficult to understand on a number of levels. First, and most significantly, the entire raison d'être for an independent advice centre is to provide independent advice. As soon as the people giving the advice are also selling products, it is no longer independent. Individuals visiting a DLC are doing so almost always because they don't know the options available, and they should be able to expect a fair overview of the market, rather than a nudge towards whichever products the centre manager has for sale, regardless of their suitability.
However well-intentioned the staff at a centre where products are sold, they cannot possibly be fulfilling the brief to give impartial advice: they may well say that there is no pressure on people to buy, and that if the visitor is not happy with what they have for sale, they refer them to other stockists, but that is not the point. Inevitably, a person who is not familiar with mobility aids will be swayed by the selection that has already been made by the expert they are consulting. It may not even occur to them to ask about other possibilities.
My second concern is that Independent Living Centres often have charitable status - they are certainly all grouped under an umbrella organisation, Assist UK, which is a charity. I have written here before about charities that muddy the waters between themselves and commercial operators - Is Charity Just Another Big Business? - and I fear that this may be another example of enterprises that should be at one remove from commercial activities, getting involved regardless.
Having sought feedback across the network, the responses I have received underline the confusion. They range from what I would have thought defined an ILC:
"... in general all centres offer impartial advice so don't retail, all centres have a good range of equipment for people to try and most employ an occupational therapist." Swindon ILC
and "We do not sell anything, but our clients are given advice about how to proceed and also given information about manufacturers and retailers." The William Merritt Disabled Living Centre (Leeds)
To "a range of daily living and mobility aids for people to 'try and buy'....We are currently in the process of expanding our service, so much more will be available in the coming months." Inspire Community Trust, Kent
and "We do have some products in stock to sell, if not we are usually able to get them in with in 2 days." Disability Equipment Bradford
A look at the Disabled Living Foundation (the London DLC) website makes it absolutely clear that they don't sell any products, yet I understand that Manchester, one of the largest in the country, is well advanced with plans to integrate a retail and online shopping facility into their advice centre.
My researches suggest that perhaps twice as many don't sell as do; it is certainly not yet universal, and indeed there seems to be concern in some more traditional centres at the idea of getting involved in sales.
Surely this debate should have been conducted in an open fashion, rather than allowing commercialisation to creep up on what were centres of excellent, impartial advice, in a backdoor way. If you went to your local Citizens Advice Bureau, and they offered to sell you the services of a debt consolidation company, how would you feel? Would you still trust them to give you the best advice without commercial consideration, or would it seem that they had lost their special, trustworthy status?
There are many people working in this field who don't want Independent Living Centres turned into mobility shops - there are plenty of those around already. Despite the steps that have already been taken along this path, it isn't too late at least to ask the question, and challenge all those people involved to let us know why the ethos of DLCs has been changed in this way.
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3 December 2009
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16 comments:
Hi Francis
I agree totally with your comments. The disability marketplace is agog with able-bodied people who see the disabled marketplace as a good place to be, so as to make a lot of money, and it should not be. It should be full of people whose first priority is to feel the problems of the disabled person and try then to sort them., and then perhaps lead them into areas where they can purchase items to improve their lives.
Admittedly I am conducting such a business, and if my products are useful for people it is necessary to obtain income - but I am disabled with MS and the first priority is always to ensure that the product suits the person, and he/she goes away with a smile on their face before I think about the income.
The disabled marketplace needs to be cleansed and if the able-bodied are not able to do this, then surely there is someone within perhaps the Government who can.
We also agree with your observations on the ILCs, so we have launched two demonstrators (one a renovated terraced house in West Bromwich and an unaltered flat in North Staffordshire) to demonstrate new products and technologies not only to those with disabilities and long term conditions, but also to the health and social care commissioners to try to get these products adopted and supported, perhaps through personalised budgets.
The demonstrator locations have attracted nearly 400 commissioners in the last year, and have paved the way for MedilinkWM to be around the table and raise the issues about access to technologies both practically and financially, and access to unbiased advice for people (and patients).
www.MedilinkWM.co.uk/assistedliving
Thank you, Michelle, for sharing your experience in the West Midlands. I think it underlines the appetite for impartial advice in these very important areas.
I fully, entirely, completely and utterly agree!
I wholeheartedly agree with your comments, I now oversee the management of the Daily Living Centre in Brighton & Hove and have resisted numerous offers of selling items of equipment (or becoming agents for a certain ubiquitous stairlift company) purely on the basis of it compromising the centre's impartiality. I passionately believe that DLCs should be places where people can go to get honest and impartial information and advice about DLE and adaptations, rather than enhanced showrooms.
However, I would also argue that can any DLC be truly impartial? As to get hold of equipment to demonstrate, they have to deal with suppliers and retailers to persuade them to loan or donate their stock. The negotiations that go into these loan agreements can often be very specific, with companies looking to see a certain level of return for their support, which in the current financial climate is not unreasonable. It would be remarkable for a company to loan its equipment for it not to be promoted in a positive way.
I would be interested to know if Assist UK have been approached for their thoughts on this matter, as it was a major issue for debate during my time as one of their trustees?
Hi I manage the Nottingham DLC and agree that any selling will impact on impartiality and we deceive ourselves if we think other wise.
I fear in this economic climate centres see this as a way to survive and their funders have encouraged it as a move towards the retail model. Most independent centres are struggling to find the money to retain their independence and selling at lower margins than local private outlets is seen by local people as opportune. I feel this is bad for the market and will ultimely be bad for the centres and the people who use them . YES YES IT DOES NEED DEBATE
Thank you, Joanne, it's always interesting to hear from someone at the sharp end. I do understand the financial pressures, but like you, don't think this is an excuse for moving into retail selling.
My name is Ian Cole, I am the cases secretary of the Southampton and West Hants. panel of REMAP.
I can see exactly where you are coming from with your comments but I wonder unless all DLC's or ILC's are independently funded, how can they ever be truly independent? Would it be more pragmatic to perhaps campaign for a 'code of ethics' and for it to be illegal for a single commercial source in this field to be able to impose themselves upon any retail outlet?
Where I live in a large village about 10 miles outside Southampton we have a 'disabled equipment shop' selling scooters etc., they have involved me in my REMAP capacity with modifying scooters for two of their clients. This has enabled me to make a minor judgement on the way that they operate and I feel that overall, if they were not able to make a profit and continue to do business, then disabled people locally would lose out. As you know transport is usually a problem for disabled people and from here it is quite a haul to the centres in Southampton
and Bournemouth.
REMAP members often find themselves advising clients about commercial equipment which might solve a problem for them. Although we are not professionally qualified to do this (most of us are retired engineers), we have a lot of combined experience in this field and we do have medical and Occupational Therapist colleagues with whom we consult.
I believe that there are a very large number of people 'out there' needing help, we are dealing with 87 cases this year in this area. I applaud you for wanting to see a 'more perfect' service, but I always feel that when I go out and see a disabled person in, say for example, a scooter that is perhaps not the ideal model for what they are doing, I always think that at least they are outside shopping and meeting people and not indoors alone, looking out of a window to a grey depressing winter sky.
Hi,
I am the OT at the Halton ILC, and I too agree wholeheartedly that we must maintain our impartiality and be able to advise on the wider range of equipment, without pressure to recommend stock items. However, I often find that people are disappointed, when they have made the effort to get to the centre, and then have to go elsewhere to purchase the equipment, especially small items.
We have considered having a retail outlet at the centre, but one that it is completely seperate from the OT service, so that we maintain that independent advice. So far, it is only an idea, as we have yet to find a way to action it so it is beneficial for the customer, without compromising the independent advice and assessment we currently offer.
The topic so definately needs much more discussion and debate.
Thank you, Helen, for this thoughtful contribution - I do agree that this needs discussing in an open way, so that the needs of users come first.
We are a U. S. based manufacturer of the Liftvest, a denim vest with a webbing harness for the manual transfer and ambulation of persons with mobility problems.
I am not familiar with the centers that you discuss since we do not have exact replicas in the U.S. However there are numerous private and public AT centers that act as resource centers. I have not run into any that are acting as sales agents.
As an instance, NYC Metro CP has an exhibition room for AT products which they display. They dont sell but they will give info and advice if asked. That sounds to me most appropriate. I would be very troubled if they were pushing and selling products.
We wholeheartedly agree that ILCs should maintain their impartiality by not selling equipment and by providing a service enabling people who need equipment to make informed choices about what is right for them.
We are also concerned at the shops and retailers who have 'ASSIST UK' logos, 'BHTA' logos or 'Trusted Assessor' certificates displayed in their adverts or windows, implying that they will be giving an impartial assessment of need.
I am pleased that some retailers are taking their responsibility seriously and ensuring their staff have awareness or training for the job they do, but these certificates and memberships don't actually prove any competence from the staff employed.
We have a good relationship with retailers in this area who do advise people to contact us if they feel their needs are complex. We have been asking Assist UK for sometime to ask national publications to insert a box in all pages advertising equipment recommending that people call their local ILC for advice before purchasing equipment as we hear too many sad stories of people buying expensive and inappropriate equipment from high pressure salespeople from companies who advertise in these publications; people feel that if the advert is in 'Yours' magazine then the company must be reputable.
I understand that due to funding difficulties some ILCs are having to sell equipment BUT I think they are the minority and most ILCs continue as we do to provide this impartial service.
Yes ILC's should remain impartial & I have worked in one for many years. We did sell equipment 20 years ago when it wasn't as obtainable as it is now because what was the point of advising someone to have some equipment but then not being able to provide it easily. Why come to an ILC for an assessment & then have to go to a shop when you can just go to a shop & buy equipment? I know the assessment is important as part of the process of getting the right equipment. I have recently found it has become harder to obtain equipment from manufacturers due to the down turn in the economy so limiting choice. TCES & opening up the marketplace may be good for competition on price & choice but I feel the public are sometimes getting poor advice. Selling equipment also raises issues over after sales care which we couldn't provide.
Does Assist UK needs stronger guidelines over impartiality & selling equipmetn as part of their memebership standards or will that just deter centres from joining?
PCTs/LAs run their centres to different standards & see selling equipment as income generation, a source of money needed when the cash is tight. There is a large market out there & an opportunity for money to be made.
A number of interesting points raised in this comment, particularly about quality of advice and also the point about after sales care, which ILCs are not geared up to provide.
I appreciate that times are tough, and ILCs are being pressured over funding, but turning to retail really doesn't seem the best solution.
The Greater London Authority supports the principle of independent living, which has been one of the priorities of its disability equality scheme. The developments you mention appear to conflict with the principles of choice and autonomy, although I am not in a position to comment on the facts at particular Centres.
We will publish a new Disability Equality Scheme in 2010. Disabled people will be involved throughout the process, which will include a full discussion of independent living and any relevant developments.
Whenever i see the post like your's i feel that there are still helpful people who share information for the help of others, it must be helpful for other's. thanx and good job.
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