Issues
These pages are a work in progress, but are intended to provide background information on issues that repeatedly arise on the site, or are of particular relevance to UK policy.
Discussion will be increased in the weeks ahead but, if there are subjects you would like to see included, please use the 'Contact Me' link at the foot of every page.
Articles on this page:
The public cost/private care loophole
For over 20-years organisations, utilities and services that had been operated within the public sector have been transferred to the private sector - they were privatised.
The privatisation of British Airways, British Gas and various other well known companies occurred so long ago [22-years in the case of British Gas] that discussion of whether they 'should' be privately or publicly owned is largely a thing of the past.
However, as many of you will understand, privatisation did not stop with the selling of these large organisations and the level of privatisation continues apace, with everything from air traffic control to the Probation Service included.
Of particular concern to many disabled people - and others with an interest in public services - the Department for Work and Pensions has been particularly active in identifying areas of public service that can be moved to the private sector. Indeed, recent announcements about 'getting people off incapacity benefit" make a great deal of the role of (and potential profits to) private companies.
Whilst such moves may be welcomed by some, there are human rights concerns, not least that international human rights obligations apply to governmental organisations, not to private companies or charities.
The practical result of this was seen in a line of cases, many involving elderly people in residential care, who were arbitrarily moved from the institutions in which they were living. Although living in private accommodation - rather than a home owned and operated by a local authority - the fees for accommodating these people were paid by local authorities.
This situation should, as far as the Government were concerned, have been of no consequence to such people's human rights; according to Ministers, the Human Rights Act was written in such a way that such people's human rights should have been protected, allowing cases to be brought before the UK courts and, where necessary, appealed to the European Court of Human Rights, in Strasbourg.
No matter what Minister's may have intended, the courts (or, more specifically, judges) had other ideas: in a line of cases, beginning with Callin v Leonard Cheshire Foundation in 2002, UK courts held that residents of private residential institutions could not claim their rights under the Human Rights Act, even where public funds were used to pay for that accommodation.
Not surprisingly, many people - including Government Ministers - were alarmed by such judgements and, in particular, charities for elderly people campaigned to correct this loophole in the Human Rights Act.
To date, the loophole remains unfilled, but an announcement by Ivan Lewis - Minister for Social Care - on Thursday 27 March suggested that the Health and Social Care Bill, currently working its way through Parliament, may become the means to plug the loophole... at least in the case of elderly people in residential care, paid for by public funds.
What is less clear is what the proposals in the Health and Social Care Bill will actually amount to, although such a Bill would not seem the ideal mechanism for closing the private provision of public services gap in other areas. For example, if people receiving incapacity benefit are to be forced to attend work focussed programmes - or even fitness for work assessments - with private companies, how can their human rights be safeguarded?
Such concerns are not merely academic or political, but very real: if governments can simply side-step their human rights obligations by privatising services, the international human rights mechanisms will be rendered irrelevant. If private companies are to undertake such work - which necessarily involves the collection of private and sensitive information - how will the government ensure that it is kept private; for that matter, is it appropriate for private companies to ever have access to this type of information when those involved have no opportunity to object to it? If private companies are to turn a profit - and directors of private companies have a legal obligation to act in the interest of their shareholders - how can the government ensure that profits are not put before the well-being and best interests of the public?
Such concerns are not confined to disabled people or incapacity benefit, there is evidence that increasing numbers of individuals and organisations are questioning the extent to which the state should be turned over to the private sector.
As will be clear from the discussion above, this issue concerns the human rights of individuals, but it also concerns wider issues of policy and politics. With disability still treated as a 'special interest' issue, that is to say an issue that is not seen as being of interest to the wider population, the risks are high.
Additional Reading
Inquiry into the Meaning of Public Authority under the Human Rights Act
Joint Committee on Human Rights, Ninth Report: The Meaning of Public Authority under the Human Rights Act [ in HTML and PDF]
The private care loophole has received significant attention in the legal and care professions, so you may also find it useful to enter 'Callin v Leonard Cheshire Foundation' in your favourite search engine and review the range of articles written on the subject.
Organisations ‛for' and ‛of' disabled people
A distinction that is of a great deal of importance to some disabled people - and entirely incomprehensible to others, disabled or not - is that between organisations 'of' and organisations 'for' disabled people.
The purpose of this essay is to try and explain the reasons why this distinction is made and why it is so important to many disabled people; the purpose is not to undertake a personal catalogue of what I happen to think are 'good' organisations and others that are 'bad'.
This point is vital; it may not win me many friends in some parts of the disability lobby, but whether organisations are good, bad or indifferent [however one chooses to measure such things] has little to do with who runs and works for them. And this is where I alienate some people from the non-disabled, non-representative organisations: many of the measures of effectiveness will count against what are often called consumer or community organisations, precisely because they are from the community, are largely staffed by volunteers and have access to a fraction of the resources available to large, but non-representative non-governmantal organisations [NGOs]. To use the mantra of our time, community or consumer groups are too often dismissed as insufficiently 'professional'.
Professionalism and what it means was - for reasons that I no longer recall - a fascinating discussion that was introduced in my first year as a law undergraduate (I assume that it was intended to promote thought about the nature of the 'profession' that most of us would follow). One of the reasons this seminar has remained with me so clearly, unlike most from this dim and distant part of my history, is that the very idea of what a professional is proved enormously difficult to nail down. As far as I recall, the one compelling measure seemed to be whether there was a professional body that took responsibility for the maintenance of appropriate standards of conduct... a fairly weak justification for dividing some of us worker bees up as having a 'profession', whilst others only have a 'job' or 'trade'. We are surely not suggesting that all people working in fields disciplined in-house are always more professional than people who are not? My life has been pretty ordinary and unexceptional, but I can think of far too many occasions where individuals working in 'professions' have acted in a way that was so far from professional as to render the term meaningless!
Professionalism amongst and within charities has also become a mantra for some politicians, policy pundits and, let's be brutally frank, more than a few business people with a vested interest for their for-profit companies in recent years. The claim was that not-for-profit 'amateurs', 'had' to become more 'professional'. I saw a lot of mention of financial planning and prudence, employee qualifications and the like, but very little on commitment to a social cause or benefit. Funny old world, making charities look like a firm of stockbrokers or accountants is so obviously a good thing, no one seemed to be asking many questions about those social problems from which a surplus (or profit) could not be turned. Just for a change (irony alert) it was 'efficiency' over 'outcome'.
What has all this to do with organisations of and for disabled people you might ask; well quite a lot really, as there is now a chasm between large, well-resourced, high-profile charities, many of which you or I could name with barely any thought, and the smaller, less well funded, almost invisible organisations made up entirely of people who are driven by a commitment to a shared cause and common experience - disability for example.
More importantly, in the context of this essay, the chasm is between organisations that are involved in - let's say a disability-related field - but whose staff, management and board (or trustees) and patrons are all (or mostly) non-disabled and a group that may lack many or most of the advantages enjoyed by the former organisation (resources, paid staff, wide ranging expertise, etc.), but which is entirely controlled by disabled people themselves.
Now, and not before time you may say, we come to the crux of the matter: who should influence policy and services, who should set the debates about disability, a non-representative organisation of often well paid and qualified professionals or disabled people themselves?
In short, this is not about whether there should be non-representative NGOs, but whether they are best placed to speak for disabled people or, indeed, have any mandate to speak for disabled people at all.
It may be that some of the large NGOs are fantastic providers of services and information to disabled people, whose 'clients' are content - or even jump up and down, cartwheel around the room excited - about how well such NGOs provide services, but to suggest that such organisations should have significant - if not monopoly - influence on politicians and policy-makers seems, to me at least, similar to claiming that a successful women's clothes retailer should advise government on women's issues.
This discussion is all the more important with recent discussion about shifting the delivery of public services from government agencies to charities and the private sector, is this just another example of side-stepping community views [see 'Loathing of elections has led British democracy to atrophy', by Simon Jenkins in The Guardian, Wednesday June 18 2008 for a topical discussion of democracy and views to it], another turn in the long road to 'efficiency' and/or utility, a belief that the public sector cannot deliver the goods....?
I should admit some personal interest in this subject: having studied long and hard, undertaken a not insubstantial amount of research and possessing a keen interest in equality, I was invited to attend a meeting of one of the regional governmental organisations (probably best not to identify it) that had set up a committee to examine equality for disabled people. I sat there patiently as various people talked and then it was the turn of the non-disabled chap sat next to me who, it turned out, was employed by a disability charity with an inappropriate name but enormous influence with governments. Despite my being sat next to him, despite not having heard any of the contributions from the tiny minority of disabled people in the room, his message was unashamedly and unequivocally: "disabled people are incapable of speaking for themselves or deciding what is important, that is why they need people like me and the organisation that I represent."
Even worse, the chairman of the relevant committee sat there with a contented look on his face, entirely oblivious to the implications of what had just been claimed.
On another occasion, with a different regional governmental organisation, I attended a meeting on nanotechnology and was spellbound, as I am sure was every other participant, when a very senior bureaucrat revealed how much money his organisation was donating to the nanotechnology and biotechnology industries, to improve the lot of us disabled people. In my naivety, I innocently asked whether the bureaucrat, or any of his officials, had ever spoken to a disabled person to establish whether this substantial investment was one that we would agree was of assistance to us. I cannot now recall how long the pregnant pause continued, but I do know that it was a long time, and the individual involved was certainly unable to confirm that a single disabled person had been consulted, prior to this allocation of a substantial wedge of taxpayer's money.
Both cases illustrate the risks: some organisations - governmental and non-governmental alike - are so convinced of their omniscience, they are entirely indifferent to the views of the people they presume to 'serve' whilst others are so overwhelmed by their good intentions, they never have the inclination to stop to ask for the views of those directly affected.
Whatever the reason, it is this democratic deficit that bothers so many disabled people.