Washed and dressed by 8am with no-where to go. (Reported by a woman at a Glasgow Disability Alliance Seminar)

bettys_pictures_407 (2)Today, many see care as an act of charity or protection; or the management of helpless incapacitated dependents by able autonomous superiors. However, within dictionary definitions of care, there is a distinction between the practicalities of ‘caring for’’ and the emotions of ‘caring about’, and this allows us to consider care as a two-way street.

I would argue that ‘the dependent’ may not be able to do practical tasks for their ‘carer’ – but that does not diminish the extent of their feelings of anxiety, concern, or fondness for them and their ability ‘to help’ in other ways. As Robin, the disabled husband of Laura says:

“I get very involved with Laura’s work … she knows she can bring it all home and dump it (stress at work) on me …. But I do like to feel I can help her to look at it from a distance.’ (1)

Such a ‘two-way’ street within the ‘helper / helped’ relationship exists whether that be between the ‘helped’ person with little communicative ability and her carer, or the personal assistant employer and her assistant. Indeed within the current system of ‘self-directed support, under employment law, the employer (the helped) has ‘a duty of care’ over her assistant.

Disabled people within the “Independent Living Movement” advocate that the outcome, or objective, of ‘care’, or what they call ‘personal assistance’, should be the promotion and sustenance of full and equal citizenship. The recipient of social care should have choice and control over the assistance required; and such assistance should be based on social justice, directed to supporting the recipient’s rights and responsibilities as citizens.

However, I would maintain, the majority of today’s social care provision does little but maintain dependency, via its eligibility criteria, and poverty, via what local authorities euphemistically call, ‘the client contribution’; but what disabled people and their carers increasingly refer to as ‘the care tax’.

Public services today are said to be controlled by ‘neoliberal managerialism’. The ethos of which has been to strip them of any moral or ethical values; replacing such with the market language of costs, efficiencies, profits and competition. (2)

I would argue that such neoliberal managerialism has devalued social care by devaluing the ethics and professionalism of front-line workers alongside the dignity and human rights of recipients; inflating recipient’s isolation from family, friends, as well as their community at large; and restricting the recipient’s ‘choice and control’ over their lives by diminishing opportunities and resources to ensure real ‘choice and control’ is viable.

Far from the harsh charitable outlook of Oliver Twist’s Mr Bumble towards the ‘deservedly needy’, which is so prevalent in today’s social care system, the prime function of social care needs to be viewed in terms of citizenship. This would place a duty on the state to promote and sustain such citizenship.

Fundamentally, that citizenship should be seen as including the ‘classical liberal’ idea of having ‘the status’ of citizenship (of belonging). This would benefit those whose impairment, or medical condition, is such that they cannot physically contribute to society.

However, citizenship also includes the ‘civic republican’ concept of participative citizenship where everyone has an equal right to be involved in economic, civic and cultural life. It is only when the state accepts these two basic duties of social care that no-one merely uses it to get up in the morning then has nowhere to go.


(1) Morris, J (1993) ‘Community Care or Independent Living’, Joseph Rowntree Foundation York

(2) Lynch, K (2014) ‘New managerialism’ in education: the organizational form of neoliberalism’, Open Democracy,16 September 2014 https://www.opendemocracy.net/kathleen-lynch/%27new-managerialism%27-in-education-organisational-form-of-neoliberalism

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When is a tax not a tax

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Westminster politicians are presently arguing over the ethics of taxation; its value to public services, and its fairness to those who pay. Yet many in Scotland fall shy of recognising that ‘charges’ imposed upon disabled and elderly people for personal and social care are, in reality, ‘taxes’.

Could this be because ‘taxing care’ to ‘vulnerable’ people, may be seen as politically insensitive?

Or, could the cost-effectiveness of ‘taxing care’ be seen as too politically risky to the scrutiny of public auditing agencies; as its administration costs are 15%, compared with the 0.83% for income tax, or even 4% for council tax?

Or, could ‘taxing care’ up to a rate of 95% of personal income, just be political dynamite? But that is precisely what those in receipt of care have to pay – leaving them in a state of abject poverty, both materially and socially.

Charging for ‘care’ began with the post-war welfare legislation and the creation of ‘home helps’, who were to be an additional support to new-borne children and their mothers. Local authorities could, if they wished, levy a ‘charge’ for such help.

However, the emphasis today has moved such ‘help’ away from new mothers to helping severely disabled and elderly people to remain in their own homes, rather than large hospitals. So what could have been seen as a little ‘extra’ has become an essential support to the health and welfare of disabled and elderly people – and elderly people still do need to pay for social care, like cleaning and shopping; only ‘personal’ care, like washing and eating, is free to them.

Such care has always been associated with the elderly. However, there are 30,900 disabled people dependent on personal and social care, many of whom could not participate in society, if it were not for such assistance from local authorities.

In fact, a new campaigning group of disabled people, Scotland Against the Care Tax (SACT), contends that such assistance is a human right against which a tax should not be levied. They also believe the Scottish Government is breaching several equality laws. To this end SACT is seeking legal opinion from a QC.

Local authorities are now promoting the term ‘co-payment’. This term comes from the American private health care sector, which believes that if their insured clients were not made to pay an additional ‘co-payment’, health care claims would be not only unmanageable but uninsurable. In fact, the same attitude prevails amongst Scottish local authorities. Their ‘co-payments’ are charged over and above the other ‘normal’ taxes disabled people pay, including NI and the council tax. But they are charged at such an exorbitant rate the use of care taxes can be plainly seen as providing a gatekeeping role to essential services disabled and elderly people require to exercise their citizenship and equal participation within society.

Granted, care in Scotland costs around £2.93b. To this, a mere 5% is added from the care tax. However, this care tax can mean a weekly choice for the taxpayer between paying for care or food.

The care tax is iniquitous in other ways. Different local authorities charge at different rates and in different ways. For example, if ‘John’, living in Falkirk, moves over the Kincardine Bridge to Alloa, he would be taxed twice as much. But if he moves to Fife, just a few miles on, he would pay nothing at all.

The Scottish Government is talking with CoSLA (but sadly not with disabled people) about creating a standardised ‘Financial Assessment Template’ to iron out such iniquities. As the proposal guarantees no local authority will get less money, it follows that nearly every care taxpayer will pay more.

Not only are care taxes going up, but the criteria for care are narrowing to such an extent that only those in dire need are eligible. Many who, with such help, could get a job, or train for a career, cannot because they do not meet such narrow criteria.

Therefore, the care tax is being used to maintain the poverty and dependency of disabled and elderly people in the community, and to deny them their right to participate therein, as equal citizens.

On the 17th of February, 2015, SACT representatives will be asking the Scottish Government’s Petitions Committee to abolish the care tax completely. But will the politicians be listening?

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The tyranny of the majority

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As a member of a permanent minority (disabled people) I am increasing concerned about the aftermath of the referendum debate in Scotland; and,especially, how it will affect the ‘Yes’ camp if they become ‘the minority’ within this so-called democratic decision-making process.

I voted by postal vote before the ‘No’ campaign effectively became the ‘Devo Max’ campaign, so my vote was cast on a different choice to that which will be before voters on 18th September. If you remember, the ‘Devo max’ choice came into being after a poll showed the ‘Yes’ campaign was narrowly ahead, by just a few percentage points.

This situation reminds me of Lord Acton, the Liberal politician, who in 1877, wrote: “The one pervading evil of democracy is the tyranny of the majority, or rather of that party, not always the majority, that succeeds, by force or fraud, in carrying elections.” (The History of Freedom in Antiquity)

In my case, my minority group consists of 20% of the Scottish population. However, in the case of this referendum if the ‘Yes’ camp becomes the losing party, that minority may well be in its high 40%; a much more significant number.

Assuming this will be the case, and I realise it may not be so; but if it does transpire that there will be a minority ‘Yes’ vote then they will be forced to accept the ‘gifts’ bestowed upon them by Acton’s force of a fraudulent party – namely the Westminster Government and its Opposition

Probably there will not be a judicial inquiry into the legitimacy of this vote. Yet, as I bemoan my situation as a member of a disabled minority, who is taxed without representation, I can sympathise with those who could well lose after such fraudulent intervention, by parties who do not represent them.

In my case, after paying my income tax, I pay another 43% of my remaining income on care taxes, without any representation from my minority group among those who decide how much tax (called ‘client contribution’ by the DWP’s Independent Living Fund, in England) I should pay. In the case of the possible losing ‘Yes’ voters, they too will live under conditions, decided by others, down in England, who did not involve them in their decision-making processes, either.

Indeed, I am so sad to think that this referendum may be swung by such corrupt and devious actions, including that of encouraging big businesses to appeal to the selfishness of individuals by saying that basic food and drink prices will go up if we become independent – an assertion based on some dubious assumptions. I feel sad because people are being encouraged to vote selfishly, when scientists such as Peter Kropotkin, George Price and Samuel Bowles have shown that ‘unselfish’ acts of individual members of a species, be it a fish or a human being, can benefit the whole species and develop its welfare and evolution.

Wouldn’t it be great if this referendum were seen in terms of what was best for the whole of society; to benefit all of us; to undo the social injustices of the  UK Government’s neoliberal austerity cuts which have led to five of the richest families in the UK having more money and assets than 200,000 of the poorest; to form a more just, inclusive and mutually beneficial society. After all, we are Scots, who are more naturally friendly, open and community minded.

In the 19th century, John C. Calhoun, a Southern United States politician, developed the notion of a ‘concurrent majority’. To deal with what he also called ‘the tyranny of the majority’; in his case, by the Northern States within Congress; he advocated that great decisions (such as the one Scotland is engaged with today) are not merely a matter of numerical majorities but require agreement or acceptance by the major interest in society. Therefore, concurrent majority, according to Calhoun, is a constitutional method of enabling minorities to block the actions of majorities by giving them a power of veto, particularly if that decision inhibits their human rights

I can’t see this as a practicable solution to this debate, but Calhoun was writing just ten years before the American Civil War. Let’s hope the historical trajectory of the future governance of Scotland will find a more peaceful solution to this perpetual problem of the tyranny of the majority.

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Letter from 10 Downing Street

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I am in receipt of an  undated letter/circular, from 10, Downing Street and signed by David Cameron, which I have found to be rather insensitive and insulting.

It refers, in a rather self-congratulatory manner, to the Government’s introduction of the new Employment Allowance, which reduces employers’ NICs by up to £2,000 per year. This, the letter says, would give me, an employer of five part-time people, a “cashback on the cost of jobs that (I) can choose how to spend”. You conclude by urging me to follow the simple procedure of applying by going on-line at: https://www.gov.uk/employment-allowance

After taking up this invitation, I discovered that I cannot claim the Employment Allowance, because I “employ someone for personal, household or domestic work, such as a nanny, au pair, chauffeur, gardener, care support worker”.



As a disabled person I employ five ‘Personal Assistants’ to help me carry out the personal and social activities throughout the day, which I require to do in order that I participate, both socially and economically as an equal citizen of the UK. As such I am realising the government’s own policy to give disabled people ‘choice and control’ over their own lives.

See: http://odi.dwp.gov.uk/odi-projects/independent-living-strategy.php

However, along with the savage cuts in social care provision and increases in social care charging, disabled people, like me, who employ their own “care support workers”, are now being excluded from the benefits other employers are offered. Not only that, but from April 6th we will no longer be able to claim reimbursement for Statutory Sick Pay following the abolition of the Percentage Threshold Scheme.

We are all familiar with the neoliberal Nozickian political ideology of the Government’s welfare reforms, which has consequentially engendered such general public negativity towards disabled people.

However, disabled people who employ “care support workers” not only do so to enable their active participation in the socio-economic life of their families and geographic communities, but to create job opportunities for others who may otherwise rest alongside them on the unemployment registers. Such fiscal disincentives will do nothing to support their endeavours; and much to continue the misery they are forced to experience with the roll-out of your ideologically driven welfare reforms.

It should also be noted that some disabled people prefer to engage a ‘care agency’ rather than directly employ someone themselves. This has encouraged the sprouting of many private companies throughout the country to meet the new market demands for such a service. I assume these exclusions will also affect their profits, so presumably they will leave the market, thus reducing the ‘choice’ of disabled people – a basic facet of your Government’s independent living strategy.

I’ve replied to David Cameron asking him to make a request to the Treasury to reconsider these repressive and discriminatory measures.  It is repugnant that a Con-Lib government should include much needed social care workers within the same category as superfluous posts of the rich.

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Asset Based Participative Citizenship: the Role of the Independent Living Fund in some ‘blue sky’ thinking.

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Five disabled people recently won an appeal in the High Court in London to halt the closure of the Independent Living Fund (ILF). They argued that the Government had not followed their duties to assess the impact this would have on the quality and equality of disabled people’s social and civic life under the Equality Act of 2012.

In his judgement Lord Justice McCombe noted that the need to remove or minimise the disadvantages faced by disabled people and the need to encourage their participation in public life were requirements which were not optional in times of austerity.

McCombe emphasised it was clearly:

“…. the Intention of Parliament that these considerations of equality of opportunity are now to be placed at the centre of formulation of policy by all public authorities, side by side with all other pressing circumstances of whatever magnitude.”

In conjunction with some ‘blue sky’ thinking, called for by the Scottish Government in their consultation around what should be done when the Fund closes, these comments reminded me of the 18th century philosopher Thomas Paine. He argued in his book “Agrarian Justice” that the state should promote citizenship by providing everyone with the basic assets so to do. Such thinking is now being reconsidered in political philosophy under the guise of ‘asset based citizenship’ whereby citizens are, for example, provided with a basic income, not just to live (as is said to be provided by the present welfare system) but to participate in the economic, social and civic life of society.


But first, some background: the ILF is an executive body of the DWP. It operates under the management of independent trustees. Since it was created in 1988 it has helped many thousands of disabled people to move or stay out of institutional care and live independent lives.

Through the provision of money, rather than direct care, the disabled person chooses who, how and when their support should be delivered. That support could entail contracting with an agency, or directly employing a personal assistant.

The ILF provides a ring-fenced budget specifically for the independent living needs of the most severely disabled people in the UK, enabling them to live in the community, to work, and to play an active part in their community as full citizens. It enables disabled people to control the way they use the funds and it currently provides support to some 19,000 people at a total cost of £330m.

The ILF system was set up in recognition of the fact that people with high support needs are at high risk of social exclusion and face particular barriers to maintaining independent living and working. In this regard their needs were not adequately addressed by council provision with its primary focus on meeting basic needs.

To be eligible, people must already receive a substantial care package from local authority social services, but ILF funding provides a top-up for those with high support needs, which many in receipt of such money report can mean the difference between basic survival and having a real life. The system provides national consistency and is ‘portable’ between different areas should users need to move, in theory ensuring that they are protected from variations in council care provision based on local funding considerations and competing priorities. However, the minimum of £340 per week of the care still has to be negotiated with the new local authority.

In 2010 ILF Trustees were forced to close, temporarily, the Fund to new applicants because the DWP had reduced the amount of funding provided. The DWP subsequently announced that it intended to keep the Fund permanently closed to new applicants, and on 18 December 2012 announced its decision to close the Fund completely in 2015, leaving all those who would previously have been eligible to rely solely on local authority adult care services. This was at a time when the funding for councils was being dramatically reduced and many authorities were cutting services for disabled people. It was this decision-making process that was the subject of the legal challenge.

Prior to the December 2012 decision the DWP carried out a consultation on the closure proposal. It did not consult on any other options. The consultation ran from July to October 2012. The consultation paper proposed that ILF funding responsibilities would be ‘devolved’ to local authorities after 2015 so that the people currently receiving ILF support would, in future, be assessed and supported by social work services departments and only receive funding for care from them. However, it did not say how much funding would be ‘devolved’ or if the funding would be ring-fenced, to ensure that it was spent on supporting those people whom the ILF was set up to protect, or even on care provision at all. The DWP said that it could not assess the impact on disabled people until after the consultation had ended.

Under the Equality Act 2010 public bodies, including government departments, must have “due regard” to certain equality principles when they make decisions and develop policies. This is the “public sector equality duty” and it applies when decisions and policies are likely to affect a group of people with a protected characteristic. Disability is a protected characteristic. The public sector equality duty in the Equality Act builds on and develops previous anti-discrimination legislation including the Disability Discrimination Act. Under this duty, public bodies must have due regard to the need to eliminate discrimination and advance equality of opportunity for disabled people. The Equality Act goes on to specify three distinct elements involved in having due regard to the need to advance equality of opportunity:-

  • the need to remove or minimize disadvantages suffered by disabled people,
  • the need to take steps to meet the needs arising from their disabilities, and
  • the need to encourage disabled people to participate in public life and other activities where their participation is disproportionately low.

The Act makes clear that public bodies must give due regard to each of these factors in all that they do. The DWP needed to take steps to find out how the proposal would affect ILF recipients and other disabled people, in order to be in a position to give such due regard to the relevant considerations.

Consultation can be one part of the process of gathering information but is not necessarily enough on its own. Due to the importance the ILF has been to the lives of so many severely disabled adults, the claimants argued that there was a very strong duty on the DWP to find out full information about the likely impact, including asking the right questions and keeping an open mind. The DWP also needed to gather information to enable it to consider whether the purpose of the proposal justified the likely impact, and to consider whether there were alternatives that could avoid or mitigate the adverse impact.

The claimants’ case was that the DWP had acted unlawfully in failing to gather the right information for the Minister to consider, and also in the way that the decision was ultimately made in light of the information that was available from the consultation and other sources.

The claimants also argued that as part of her task in considering the factors required by the public sector equality duty, the Minister failed to take account of provisions within the UN Convention on the Rights of Persons with Disabilities (UNCRPD). This was ratified by the UK in June 2009 and includes a number of important provisions which must be taken into account in all Government decision-making that has a particular impact on disabled people. For example, includes Article 19 which contains the right for disabled people:

“… to live in the community with choices equal to others … [and] to choose their place of residence … on an equal basis with others and … not [to be] obliged to live in a particular living arrangement.”

In announcing the closure decision in December 2012, the Government made clear that whatever funding may be ‘devolved’ to local authorities it would not be ring-fenced. [1]

The Equalities and Human Rights Commission intervened in the case to advise the court on how the public sector equality duty should have been discharged by the DWP. Their submissions also explained how this should have been informed by Article 19 and other provisions of the UNCRPD, in order for the Government to meet its international obligations under the Convention.

The matter came before the High Court in March 2013 and was considered by Mr Justice Blake, who upheld the Government’s decision, accepting its arguments that it had carried out a lawful consultation and applied the equality duties properly in making the decision.

The claimants sought and obtained permission to appeal and the case was considered at a hearing in October 2013 before three Court of Appeal judges, Lords Justice Elias, McCombe and Kitchin. The court heard argument for one and a half days and decided that Mr Justice Blake had been wrong to conclude that the Minister had complied with the public sector equality duty: they held that the decision was therefore unlawful, quashed it and allowed the appeal.

The Appeal Court found that the Minister was not properly briefed on the nature of the public sector equality duty in relation to disabled people and there was no evidence that she had applied it consciously, in substance, with rigour and with an open mind as the law requires. It did not accept that the consultation process was so flawed as to be unlawful in itself, but found the Minister had not read the full responses and the summary given to her by officials:-

“…did not give to her an adequate flavour of the responses received indicating that independent living might well be put seriously in peril for a large number of people”. (leading judgment of Lord Justice McCombe)

The Appeal Court emphasised the very specific requirements of the duty that the Minister had failed to properly consider: the focus on the need to advance equality of opportunity, the need to minimise disadvantage and the need to encourage independent living and participation in public life and other activities.

The judgment made clear that, irrespective of austerity or “other pressing circumstances of whatever magnitude”, Parliament intended each of these considerations need to be “… placed at the centre of formulation of policy by all public authorities … an integral part of the mechanisms of government”.

Other than a recommendation by an official in a briefing note that the Minister should read the Equality Impact Assessment and Impact Assessment documents in order to “…comply with our public sector equality duty” and “…ensure we do not increase the likelihood of a successful claim”, Lord Justice McCombe held that:

“…there is nothing to identify a focus upon the precise provisions of the Act that seemed to the Minister and her officials to be engaged, what precise impact was envisaged to persons potentially affected and what conclusion was reached in the light of those matters… this was not enough”.

The Appeal Court also agreed that there was no evidence that the Minister had in any way considered the Government’s obligations under Article 19 and other provisions the UNCRPD as they informed the public sector equality duty.

It remains to be seen whether the Government will seek to revisit the idea of closing the ILF; however it confirmed in the course of proceedings that any preparatory steps were at an early stage and could be reversed if necessary. Any fresh decision would require the Government to go back to the drawing board, properly assess the impact the decision will have on the lives of ILF recipients with regard to the factors in the equality duty, and consider whether it is justified or a less damaging alternative is possible. As the judgement stated, the duty does not prevent the Government from taking difficult decisions like this but it does mean that they have to confront the consequences of such a decision and

“… the inevitable and considerable adverse effect which the closure of the Fund will have, particularly on those who will as a consequence lose the ability to live independently.”

This judgment is of major importance for all disabled people and will force the Government to think again about how it funds care for severely disabled people so they can maintain their independence throughout their lives. However, there is no doubt that the UK coalition government is determined to follow its original intention, irrespective of any consultation or equality duty, to close the ILF and devolve the money to local authorities. No-one knows for how long such devolved money will go to local authorities and whether such money will be ring-fenced, or left to local authorities to spend on other things, such as road works, or festivals. Ultimately, it is clear, the UK coalition government wants to let already hard pressed local authorities pick up the bill.

The Scottish Scene

In Scotland, the Scottish Government has just concluded a consultation on what to do with its share of the money, if the Fund were to be devolved. Scottish Ministers and CoSLA leaders have already announced that they have set independent living as a priority for co-ordination of action across the public sector, and against which they will be required to report on progress.

The Vision for Independent Living in Scotland, co-signed by the Scottish Government, the disabled people’s Independent Living Movement, CoSLA and NHS Scotland states:

“…based on the core principles of choice, control, freedom and dignity, disabled people across Scotland will have equality of opportunity at home and work, in education and in the social and civic life of the community” [2]

They have then gone on to define independent living as:

“… disabled people of all ages having the same freedom, choice, dignity and control as other citizens at home, at work, and in the community. It does not mean living by yourself or fending for yourself; it means having the rights to practical assistance and support to participate and live an ordinary life.”

The Independent Living Fund is one example of the support that has contributed to some disabled people being able to live independent lives. It has made a significant contribution to individuals being able to be active citizens, equal to all other citizens.

Scottish Disabled People’s Organisations (DPOs) have called for any new fund to be open to new recipients. The decision by the UK Government to close the ILF to new recipients did create a massive amount of unmet need; and the complete closure will further exacerbate inequalities between disabled and non-disabled people in the future. These inequalities are not helped by local authorities only providing support packages with basic cover [3]; or by the UK Government’s targeting of disabled people in the welfare cuts, creating even further poverty. [4]

And as an existing recipient of ILF, I do agree that any new use of existing money should not come from the funding of existing support packages, by top slicing or reducing existing disabled people’s support packages. These funded packages should not only be secured, but under-written by guarantees that additional resources will be available for any additional increases in costs of meeting the increasing personal need, providers’ fees, or employers’ responsibilities of existing clients. Such increases in personal budgets should come either from the attrition within the existing budget or from other Scottish Government budgets.

I do not say this for selfish reasons, but for ethical ones. It has been argued that society has a duty of beneficence and non-maleficence, as well as care and justice, especially to those who are not as strong and resilient as others. [5]

Despite it happening within several local authorities, today, it is also morally wrong to take from Peter to give to Paul, especially if both are within a protected group as designated within equality legislation; and both are seen as being ‘in need’ within current community care legislation. It is not ethically comfortable to think that the state redistributes resources to the disabled people from disabled people, when they have a duty to equate their status and opportunities with non-disabled people

I am truly grateful to the Scottish Government for accepting this principled stance, from the onset; but would urge it to resist any pressure from any quarter to change from it

Need for some ‘blue sky’ thinking

However, , I should like to take this opportunity, as an individual to do some ‘blue sky’ thinking on the issue of what to do with the attrition within any ‘new’ independent living budget when it does eventually come to Scotland, or indeed, if there were any additional monies forthcoming.

I do realise that such thinking may be impossible to realise, given the current political thinking which dominates society’s attitude and actions in the light of ‘austerity Britain’. It may also necessitate some kind of enquiry or commission into the present state of neoliberal managerial social work, which places budgets and organisational systems before social work ethics and social justice. My main contention is, however, that such an enquiry could also investigate possible ways social work services could promote and support a system which values proactive participative citizenship, as suggested by Thomas Paine.

There is the obvious disadvantage that such an enquiry may push the issue into the ‘long-grass’. Nevertheless, I strongly believe there would be a more vibrant and inclusive society if it transferred its concern from the cost of social care to its value, not just to the recipients and their families, but to society as a whole. In addition, I do hope that I will drop some seeds for thought, which might gestate over a period of time and eventually flower as time goes by. I am personally convinced that the transfer of the ILF budget to Scotland could accelerate that process.

I do agree with the DPO submission to the Scottish Government’s consultation that given the vagaries of what James Madison, 4th President of the USA, termed ‘the tyranny of the majority’, the most secure option cited by the consultation paper is a “New Partnership and/or Trust” (Option 4). Giving the budget to local authorities would not guarantee that it would be spent on community care. And given the caprices of local government, it could end up filling pot-holes, or paying for some feast-day.

Even if it were added to local authority community care provision, it would only provide more fuel to the furnace of the neoliberal managerialism of present day social work, and continue the post code lottery of provision, along with the exclusion of the voice/influence of the end user, who constitutes the minority in local authority elective decision-making, but 100% of the recipients of its service provision.

A new Partnership/Trust would give more security to existing recipients and tick the advantages described within the consultation document. If it also worked in co-production with disabled people, [6] it would overcome the issues discussed in the previous paragraph. It would also safe-guard the current aspects of the ILF which are important for the future of any funding, namely:

  • The money remains ring fenced to provide care and support and that the current level of 97p of every £1 spent reaches the end user
  • It is delivered on a national eligibility criteria focussed on supporting and delivering independent living.
  • It is portable and flexible. The national consistency of the application of ILF moneys means that the provision is not subject to a post code lottery and it offers portability of support. This is crucial for disabled people to enjoy their freedom of movement around the country for their employment prospects, or to be near family, etc., without having to re-negotiate their funding
  • It is provided after a co-produced assessment with the end user
  • It is provided after a regular review to ensure needs are met appropriately
  • It is provided as a Direct Payment. The ILF has shown a pioneering history and wealth of experience in delivering Direct Payments since the 1980s. This method of support has supported choice, control, freedom and dignity in the lives of disabled people in a way that more traditional care and support have been unable to offer
  • It is monitored in a way that supports accountability whilst being flexible and non-intrusive

I also agree with my DPO colleagues, that the following principles be used to develop any successor system for the ILF in Scotland:

  • Overarching principles of independent living, equality and human rights: The principles of independent living, equality and human rights should steer what happens – this includes promoting, protecting and supporting the full participation for all disabled people as equal engaged citizens.
  • Freedom: users of community care are free to live their life in the way that they choose, without barriers to such freedom created by care and support systems, which are inflexible and operate to their own convenience.
  • Choice: users of community care can choose how to live their life, what they do with it and who they involve in it.
  • Dignity: everyone is entitled to dignity in their own life and others respect this dignity – from the point of accessing support to the delivery of it.
  • Control: people can and should control their own lives, including what they do, with whom, and when they do it.
  • Participation: disabled people have a right to participate in society and decisions which affect their human rights.
  • Accountability: those responsible for the promotion and delivery of respect, protection and fulfillment of human rights are accountable to those who hold such rights.
  • Non-discrimination and equality: Community care is crucial for the equality and human rights of disabled people. Without it, many disabled people cannot live free from discrimination and harassment – as the Equality Act 2010 promotes;  enjoy the human rights to which they are entitled on an equal basis to others – as set out in the Human Rights Act and the European Convention of Human Rights; nor contribute to a wealthier and fairer, smarter and healthier, safer and stronger, Scotland. [7]
  • Empowerment: disabled people know their rights and how to claim them. They are supported to play an equal, engaging part in society and lead an ordinary life.
  • Legality: decision makers must make an explicit link with human rights legal standards in all processes and outcome measurements.
  • Stability: disabled people do not live in fear of losing their support or about the perception of others of the cost of such being not worthwhile. This includes; decisions and practice around funding levels, assessment, eligibility and review processes; as well as decisions around the continuation of ‘buying’ a consistently high service – either as ‘good employers’ or to retain a preferred agency/provider.
  • Better outcomes for individuals: rules and processes, including assessments and eligibility criteria, work to the benefit of the individual and their best interests. The outcomes for disabled people and other users of community care, in terms of better health and wellbeing, should be at the centre of both the legislation and the way that it is implemented.
  • Portability: Disabled people and other users of community care have clear entitlements to it, regardless of where they live. Disabled people know that they can move freely, for whatever reason, across Scotland and that their support package can come with them.

Nevertheless, I am concerned that a new Trust would continue the bifurcation of social care. The recipients of the new Trust will be on one branch of social care (and a pretty precarious one at that) where they will have the empowering resources managed within the principles mentioned above. However, the majority of social care recipients will remain on another branch. They will continue to be under the control of the present-day neoliberal managerial policies and practices, including notions of budget driven services, single-assessments, markets, competition, productivity, resource allocation systems, etc.; all of which limit positive outcomes, and are merely available to those few who meet the highly restrictive ‘life and limb’ criteria of the assessment process.

Such limited numbers of disabled recipients of social care provision will also continue to be confined to dependency, segregation (even within their own home) and denial of their full and equal participative citizenship, as the needs which such a system assess are confined mainly to what are termed as ‘bed and breakfast’ services.

Sometimes, such needs are met by indignant and deeming provision, such as providing adults with incontinence pads at night. I daresay that some within social work services will claim this is a misrepresentation of social care practice, today, but such has been well documented in the literature. [8]

On the other hand if the new fund meets the criteria which are detailed in the box above, there would be another system of social care which enables its recipients to fulfill more ably their familial, cultural, social, civic and economic lifestyles. This system could be more directly inclusive of the recipient in its policies, practices and assessments; and sees the recipient as an equal, participating and engaged citizen. And if such a service were founded, I contend it would be a beacon which could influence the dismantling of the present day neoliberal managerial system of social care.

Therefore, I would suggest that any new Partnership / Trust be set up on a long-term, but changing, basis; primarily to secure the continuation of support to existing recipients, but also to stimulate change within mainline services. Any attrition, along with any additional money (possibly from the new combined budgets of health and social care) would be used to set up pilot schemes within local authorities to carry out similar packages of support, based on the same criteria and management systems, and the principles and actions of which have been outlined above, However, they would be directed more pronouncedly at supporting participative citizenship.

It has been shown that such active participation within society at large, supported by social work services, can reduce higher dependency on health and social care later on in life. [9] Therefore, the expectation is that these projects would work like immunisation programmes within health, changing the metabolism not just within the body of the individual, but the culture and systems of the organisation itself. Unlike health, there is little money spent on preventative exercises within social care.

The Scottish NHS, in this fiscal year, has spent £17m in flu immunisation alone. This is above that spent on its child immunisation programmes. Politically, it is generally accepted that such preventative measures save greater harm to the individual and greater expenditure to the health service when large scale epidemics arise. If such preventive measures were applied to social care budgets, the consequences of ‘unmet need’, and the additional expenditure to meet them, would be less, when they are finally acknowledged as severe ‘life and limb’ cases.

It is generally agreed that there is a widening gap within social care, not only in Scotland, but around Europe, between rising need and falling expenditure. [10] If falling expenditure continues merely to meet the ‘life and limb’ need of a diminishing number of people, that gap will never narrow. As said previously, health and wellbeing has been found to be greater among those who are empowered to participate in the lives of their community and within relationships. [11] It has been found, for example, that overcoming the isolation of being housebound, leads to improved health and wellbeing outcomes. Starting up small scale projects to maximise social and civic intercourse would help in such preventative measures.

Adopting this ‘improvement model’ [12] i.e. starting small pilot projects and building on their learning, will facilitate the closure of this gap. The theory and practice of the improvement model, is well known to the Scottish Government and has been widely used in the organisation of infection control within the health service. [13] It is also being used with some relative success by local authorities within the roll out of their Change Fund for older people.

The Scottish Government could oversee and facilitate such a programme of improvement pilots, facilitating solutions to any initial problems and ensuring the pilots meet and sustain their initial objectives; criteria which the present Change Fund has not always been able to maintain. As these pilots grow in number and geographic spread, they should influence mainstream local attitudes and practices within social care, presently dominated by neoliberal managerialism

It should also be noted the Scottish Government’s Christie Report [14] on the future delivery of public services identified four key principles that should underpin future reform:

  • Reforms must aim to empower individuals and communities receiving public services by involving them in the design and delivery of the services they use.
  • Public service providers must be required to work much more closely in partnership, to integrate service provision and thus improve the outcomes they achieve.
  • We must prioritise expenditure on public services which prevent negative outcomes from arising.And our whole system of public services – public, third and private sectors – must become more efficient by reducing duplication and sharing services wherever possible.

Asset Based Citizenship

The pursuit of asset based citizenship and welfare would, I believe meet these fundamental principles.

As stated above, ‘independent living’ is a human right for disabled people, under Article 19 of the United Nations Convention of the Rights of People with Disabilities. The exercise of rights and responsibilities are part of an engaged citizenship. If social services were designed around promoting and sustaining such exercise, rather than ‘needs’ as acknowledged and assessed by gate-keeping professionals, there would be much more dynamic participation by disabled people within the community, leading to a much more progressive, inclusive and engaged society.

But what is meant by ‘participative citizenship’? The meaning and purpose of ‘citizenship’ has been discussed and debated by philosophers and sociologists, ever since Aristotle and beyond. However, more modern theories were first proposed by T H Marshall in 1950. He proposed that “Citizenship is a status bestowed on those who are full members of a community. All who possess the status are equal with respect to the rights and duties with which the status is endowed”. [15]

According to Marshall, there were three types of rights – civil, political and social – and the development of citizenship in democracies involved three phases marked by the establishment of these three rights:

  • Civil rights are those necessary for individual freedom – “liberty of the person, freedom of speech, thought and faith, the right to own property and to conclude valid contracts, and the right to justice”
  • Political rights are “the right to participate in the exercise of political power” either as a member of a political authority or an elector.
  • Social rights are “the whole range from the right to a modicum of economic welfare and security to the right to share to the full in the social heritage and to live the life of a civilised being according to the standards prevailing in the society”

In 2005, Jenny Morris wrote a paper for the then Disability Rights Commission. [16] In it, she looked at what citizenship meant for disabled people. She took three concepts which their movement had been (and still are) promoting and suggested that there was a very close relationship to Marshall’s three concepts of citizenship rights.

The three concepts which Morris referred to were:

  • Self-determination. This has been an important concept for both the independent living and self-advocacy movements. Within the wider citizenship debates, there is an assumption that individuals have capacity for free choice and, particularly within the liberal tradition full citizenship involves the exercise of autonomy.
  • Participation. This concept is often used by disabled people when engaging with the debate on social exclusion. In terms of wider citizenship debates, the concept includes the civic republican concept of political participation but also encompasses the broader concept of community participation.
  • Contribution. Disabled people have emphasised the value of our contribution to economic and social life when we make the case for both anti-discrimination legislation and the resources required for a reasonable quality of life. Such arguments dovetail with the communitarian emphasis on responsibilities and reciprocity, and with debates on the limits to social rights.

One of the major benefits of the present ILF has been the enabling of disabled people to fulfill the pluralistic aspects of their citizenship. Equal participative citizenship is the key objective of disabled people’s independent living movement.

The development of the disabled people’s movement and its relationship to the various models of citizenship has been outlined in several works. [17] However, I just want to mention one – that of a stakeholding citizenry – for it would take a specific type of welfare state and social work service; one which supported the rights and responsibilities of an engaged citizenship, to underpin a society of stakeholding citizens. Giving disabled people a direct payment is a concrete example of developing an asset based stakeholding citizenry. If such suggested pilot schemes as above were to be based on such concepts, this would revolutionize social care in Scotland, and overcome a large structural barrier to disabled people’s independent living opportunities.

As far back as the 18th century the idea of giving citizens assets (money) to develop their active participation as equal responsible citizens in the government and wellbeing of society has entertained much debate. The idea is to build on the assets each and every individual has by giving them money and opportunities; and for them to decide how to use it to assist their contribution to, or engagement with, society, not just to participate in its labour market, but its social, cultural and civic environs. Such stakeholding assets could be used to buy tools for a job, or pay for a course to improve their education, or take up some cultural pursuits, etc., etc. Such money, it has been argued, would be recouped through inheritance tax. [18]

Two competing arguments are made in this discussion. First is the libertarian argument that if people ‘stake-blew’, i.e. frizzled the money away, they were free to do so. The republican argument is that such assets should only be used to promote the engagement of the individual with society; and to ensure such engagement took place, there should be a light handed monitoring of such assets, for detailed policing of such would be impossible. [19]

These arguments around the use and misuse of such money have been going on ever since Thomas Paine first suggested asset based citizenship in 1795; and have also dominated the field of direct payments, now ‘self-directed support’, since its inception.

The republican argument is based on a set of principles of democracy, very similar to communitarian thinking and that advocated by the independent living movement in Scotland. [20]

These are;

  • The common good
  • Independence
  • Inclusion
  • Deliberative decision-making
  • Participation and
  • Economic egalitarianism.

If we are to develop a stakeholding society supported by social services and the welfare state, then these principles must be intrinsic to their policy and practice. The independent living movement has been in the vanguard of promoting similar principles. In particular, the idea of a direct payment to pay for support can be seen as an asset provision to enable participation in, and engagement with, society. The independent living movement also encourages inclusion, participation and deliberative decision-making. It has also advanced the concept of ‘co-production’ and published a ‘Toolkit for co-production’ which explains in plain language how disabled people can participate in policy and practice decision-making at both local and national level. [21]

Asset based welfare to promote engaged citizenship has been discussed in both America and Europe. [22] This should not be confused with “workfare” programmes devised in America and presently being replicated within the current Con-Lib welfare reforms, for ‘engagement’ means more than just participating in the paid labour market.

Within Britain, the idea of giving assets to people to empower their reciprocal role as citizen has been trialled by the last Labour government in the development of its Child Trust Fund. Each child was to be given £250 at birth, followed by another £250 at age seven. This money was to be invested in a Trust which would attract interest and growth in the stock-market over time. Families were also allowed to contribute to their children’s Trust which would mature at age eighteen. The libertarian concept of the child being free to do whatever she wished was assumed¸ although politicians hoped the accrued money would go towards her further education

It is also true to say that within Britain, asset-based welfare has been discussed mainly around helping the poor to save money. But in America, Scandinavia and others parts of Europe, asset-based welfare has a wider remit in engaging mainly ‘the poor’ to be engaged in their citizenship development and favours the uptake of education and employment opportunities. [23]

It would make sense therefore, if we are to change welfare and social services to be an asset creator for an engaged, participating citizenship to start with policies and practices around independent living.

A direct payment to enable a disabled person not just to get washed and dressed, but to become active in her family, cultural, economic and civic life, is truly an asset-based welfare provision. However, it should be remembered that, although realised programmes of ‘asset based citizenship’ mainly started within programmes for ‘the poor’, the original concept was that it would be a ‘universal’ provision, Nevertheless, it is considered that some may require more assets than other to achieve the same things.

For example, the Economics Nobel Prize Winning Professor Amartya Sen, with his PhD student Wiebwe Kuklys, found that when ‘conversion handicap’ (those assets which are needed by disabled people to achieve the same things as non-disabled people) was added to ‘income handicap’ (that which is the difference in income between disabled and non-disabled people) the difference in the poverty gap between the non-disabled poor and the disabled poor rises from five to thirty percentage points. Therefore, as disabled people need more assets (money) to achieve the same as non-disabled it may be sensible, as previously stated, to start asset based welfare with this group of people. [24]

Referring to asset provision and ‘republican democracy’, the principles of which are stated above, White [25] states:

“The vision is not of a utopia, of a society which fully realises the values of liberty, equality and ‘fraternity’, which have historically inspired progressive politics. But it is an ambitious vision nevertheless. It pictures an active state working to disperse property and increase the accountability of decision-makers throughout society. At the same time, as part of the process of dispersing power and enhancing accountability, the nature of the state itself is transformed by greater citizen participation in and around policy-making. We should not want a state that swallows up society, but nor should we reconcile ourselves to the neo-conservative vision of a market society (in which the market swallows up the society). The challenge is to put the state and the market in their place so as to build what we may call a citizen society.”

But social care is only one area of structural barriers to disabled people’s independent living: independent living is not just about personal support. Disabled people have identified 13 areas of living and support to which the policies and practices covered by the independent living paradigm can be applied.

These include:

  • inclusive education and training
  • equal opportunities for employment
  • full access to our environment
  • fully accessible public transport
  • technical aids and equipment
  • accessible and adapted housing
  • an adequate income including income from benefits
  • accessible and readily available information
  • advocacy and working towards self-advocacy
  • counseling, including peer counseling
  • accessible and inclusive healthcare provision
  • communication and appropriate support for communication
  • personal assistance

It can be seen how independent living touches on all aspects of life and much of government policy and expenditure. If the attrition of this new budget were to be enhanced with a tiny sum (say 0.01%) from each of the relevant budget headings, then along with the growing attrition, an alternative, if not additional, use of the new budget could be to fund programmes or projects which tackled the structural barriers within each of the 13 areas covered by the independent living paradigm, as itemised above. Such funded projects would be based on the principles and practices of ‘co-production’ as detailed within the Scottish Independent Living Movement (comprised of DPOs in Scotland). [26]

Once more, the Scottish Government, which already works to the principles and practices of co-production, could oversee the implementation of such structural programmes,  as it has used the improvement model in the health service.


It is true to say ‘when one door closes, another opens’. Although it must be said that the five disabled people who won this ground beating legal judgement should be warmly congratulate, the question still remains over the future of the Independent Living Fund.

Over the last 30 odd years of the Fund’s existence, it has shown how disabled people can flourish as family members; employees (and employers); sports people; as well as actors in leisure and civic pursuits. It would be shameful (and wasteful) if such asset based provision of citizenship support were lost to feed the whims of local authorities and their gluttonous approach to neoliberal managerialism within social care.

It is true that the Fund, and its continuation, do allow for a bifurcated social care system. But if it, or its successor, could be used as a beacon for future mainstream services by building on its principles and practices to support equal proactive citizenship, then not only will disabled people prosper, but society at large; making Scotland a more healthier, wealthier and inclusive country.


[1] In the UK Government’s published response to the consultation it was stated that “in their response to the consultation, most local authorities said they would be strongly opposed to a ring fence around this funding” but this was completely untrue. Not one of the local authority responses obtained by the Claimants under the Freedom of Information Act expressed opposition to ring fencing; 33 out of 80 were in favour of ring-fencing or suggested it should be considered and several authorities expressing qualified support indicated that their position depended on whether the funding would be ring fenced. The rest made no comment about ring fencing.

[2] Our Shared Vision for Independent Living in Scotland, co-signed by the Scottish Government, the Independent Living Movement, CoSLA and NHS Scotland, 5 March 2013  http://www.scotland.gov.uk/Resource/0041/00418828.pdf

[3]  http://www.scope.org.uk/news/other-care-crisis and http://www.inclusionscotland.org/documents/FiveAsks.doc

[4]  http://www.inclusionscotland.org/news/story.asp?id=4181

[5] Darwall, S (ed.) (2003) “Deontology” Blackwell Publishing, London

[6]  http://www.ilis.co.uk/get-active/publications/co-production-toolkit

[7] ILiS; “ILiS Response to the JCHR Inquiry into the Implementation of Article 19 of the UNCRPD”, 2011

[8] See, Harlow, E, Berg E, Barry J and Chandler, J (2013) “Neoliberalism, managerialism and the reconfiguration of social work in Sweden and the UK”, Organisation, vol. 2, no 4, pp534-550; Ferguson, I and Woodward, R (2009) “Radical social work  in practice: making a difference”,  Policy Press, Bristol; Regowski, S  (2013) “Critical social work with children and families: theory, context and practice”, Policy Press, Bristol

[9] See, for example, Curry, N (2006) “Preventative Social care: Is it cost-effective”, King’s Fund, London

[10] Tarricone, R and Tsouros, A D (2008) (ed) “Home care in Europe: the solid facts” WHO, Univerita Commerciale Luigi Bacconi

[11] Wallerstein, N (1992) “Powerlessness, Empowerment, and Health: Implications for Health Promotion Programs”. American Journal of Health Promotion, Vol. 6, No. 3, pp. 197-205

[12] Langley, G  J, Moen, R, Nolan, K M, Nolan, T W, Norman, C L and Provost, L P (2009) “The Improvement Guide: a practical approach to improving organisational performance”, Jossey Bass, San Francisco

[13]  http://www.scottishpatientsafetyprogramme.scot.nhs.uk/docs/usingthemodelforimprovement.pdf

[14]  http://www.scotland.gov.uk/About/Review/publicservicescommission.

[15] Marshall, T.H. 1950. Citizenship and Social Class, Cambridge: Cambridge University Press.

[16] Morris, J (2006) “Citizenship and disabled people: a scoping paper prepared for the Disability Rights Commission.  http://www.disability-studies.leeds.ac.uk/…/morrisCitizenship-and-disabled-people-f.

[17] See, for example, Beckett, A E (2012) “Citizenship and vulnerability: disability and issues of social and political engagement”, Palgrave McMillan, Basingstoke

[18] Prabhakar, R (2008) “Assets and citizenship” in White, S and Leighton, D (eds) (2008) “Building a citizen society: the emerging politics of republican democracy”, Lawrence and Wishart, London

[19] White, S (2008) “The emerging politics of republican democracy”, in White, S and Leighton, D (eds) (2008) “Building a citizen society: the emerging politics of republican democracy”, Lawrence and Wishart, London

[20] Elder-Woodward, J (2013) “Independent living: the frontier to communitarian welfare”, Disability and Society, vol 28, issue 2

[21] http://www.ilis.co.uk/get-active/publications/co-production-toolkit

[22] Sherraden, M (1991) “Assets and the poor; a new American welfare policy”, M E Sharpe Inc.; Le Grand, Julian (2013) “Subsidiarity and individual responsibility: quasi-markets and asset-based welfare”. In: Brugnoli, Alberto and Colombo, Alessandro, (eds.) Government, governance and welfare reform: structural changes and subsidiarity in Italy and Britain. Edward Elgar, Cheltenham,

[23] Emerson, C and Wakefield M (2001) “The Saving Gateway and Child Trust Fund: is asset-based welfare, ‘well fair” The Institute of Fiscal Studies, London

[24] Kuklys, W (2005) “Amartya Sen’s capability approach; theoretical insights and empirical applications” Springer, Berlin

[25] White, S and Leighton, D (eds) (2008) “Building a citizen society: the emerging politics of republican democracy”, Lawrence and Wishart, London

[26] http://www.ilis.co.uk/get-active/publications/co-production-toolkit

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Personalisation and the value of social care

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Talk given at Social Services Expo and Conference; 19 March 2013

In their report to the Scottish Government, in 2005, Charles Leadbetter (the grand godfather of Personalisation) and Hannah Lownsbrough (of the think-tank Demos) state:

“Good social work is done with people and not for them. That requires: mutual respect and trust; keeping the person at the centre of the work; enabling them to define desired outcomes; and supporting them to develop their own solutions (Leadbetter and Lownsbrough, 2005, p. 4).[1]

However, in 2012, just seven yrs later, the great innovator and protagonist of Personalisation Dr Simon Duffy wrote a formal apology for promoting the idea and system. He states:

“I believe I should make a written apology for two mistakes that are having increasingly negative consequences:

  1. Complex Resource Allocation Systems (RAS) – using questionnaires, points, weightings and formulas to calculate a fair budget
  2. Support Plans – which are now being abused and which are undermining the autonomy of disabled people and families[2]

The roots of personalisation

Some of the roots of “personalisation” are to be found in the disabled people’s movement of the 1960’s and 1970’s. Their origins can therefore be discerned in the emergence of the independent living movement and the articulation of the social model of disability.  Key principles and values of this movement are:

  • Independent living
  • Co-production
  • Participation
  • Control, Choice and empowerment

“Personalisation” also owes its origins, at least in part, to the values and principles of the social work profession.  The philosophy of “putting the individual first”, “respect for the individual”, and “self-determination” have long been at the heart of social work.  BASW [3] states that social work is committed to the five basic values of:

  • Human dignity and worth
  • Social justice
  • Service to humanity
  • Integrity
  • Competence

The Complex RAS

Knowing what your budget is a useful way of enabling you to take more direct control over your own life and your own supports. It promotes autonomy, creativity and a rightful sense of entitlement.

However this does not require a Complex RAS.

Duffy states that the reason that we started to develop a Complex RAS was primarily because senior managers said directly or indirectly “we don’t trust our social workers to make judgements about what is fair and reasonable”.

As Duffy also points out, when people with more power say that they do not trust those with less power, this is never because those with less power are not trustworthy. Rather, it is because of the incompetence of those with more power.

Sceptics of personalisation rightly pointed to the likely problems:

  • The process would disempower social workers and service providers
  • The process would keep breaking – it was too ambitious
  • The process would be used to disguise unfair cuts and cap budgets
  • Local authorities would not show how they did their calculations
  • The process would not empower disabled people and families

Each of which, in some way or other, has happened somewhere in Scotland

One such sceptic is Iain Ferguson, Professor of Social Policy and Social Work at the University of the West of Scotland

He argues that the Personalisation Agenda fails to acknowledge the conflicting agendas involved in current policy debates and, specifically, the extent to which personalisation is also consistent with a neoliberal social and economic agenda which limits, rather than extends, social justice. [4]

He states that personalisation is based on the ‘hybridisation’ of the Independent Living model and neoliberal managerialism within what is now a free market economy within social care.

There is a general failure, Ferguson concludes, within the personalisation agenda to address issues of redistribution (as opposed to issues of recognition) or to locate the experience of people with disabilities within the wider framework of today’s neoliberal capitalism and the effects of the imposition of neoliberal welfare reforms; all of which limit the Agenda’s usefulness as a basis for a progressive social work system.

So, how do we move forward?

Duffy says to make progress social workers and clients alike have to try and do several things at the same time:

  • Avoid solving false problems, problems that are not real but are just symptoms of a flawed system
  • Keep innovating, finding simpler and more respectful solutions to real problems
  • Challenge injustice, don’t accept unfair cuts or damaging policies
  • Build community, share our ideas and be prepared to listen, learn and change

The Independent Living in Scotland Project (which  is part of Inclusion Scotland, an umbrella body of 88 groups of disabled people throughout Scotland) convened a “Pop-Up Think Tank” to discuss Personalisation and Independent Living.  This think tank comprised of representatives from the independent living movement, carers organisations, professionals and academics.

From that think tank it was clear that the goal of professionals and users of social care alike should be that of citizenship and human rights.

However, it was also clear that ‘personalisation’ – a system based on individual allocation of resource, with processes that support that – not only does not deliver this goal, but disempowers both the professional and the user.

It was agreed that a preferred way forward included such things as:

  • Secure a shared vision for a system of social care based on human rights, citizenship and independent living
  • Take advantage of the current integration of Health and Social Care Bill as a significant opportunity to achieve the holistic system desired
  • Develop both a clear set of coproduced entitlements to realise this vision and a funding mechanism that supports such entitlement
  • Support and resource a system of coproduction that ensures power is shared among users, policy makers, front line staff and the local community – this includes supporting DPO’s to engage in this
  • Empower the professional by removing financial considerations from their decisions and supporting common sense based solutions
  • Develop a framework, outlining the route to a system of social care based on citizenship and independent living
  • Set up a commission on the funding of a social care system based on citizenship and human rights to consider at the macro level, decisions on funding needed to underpin this approach

To conclude therefore, I believe that this final point of setting up a commission to look at the value and purpose of social care is vitally important.

As an example, OECD figures for 2009 show the UK only spent 3.7% of its GDP on social services, compared with 7.7% in Sweden; 6.9% in Denmark; and 5% in Norway. Even the tiny country of Iceland spends more on social care than we do, at 4.6%[5]

We – professionals and clients together – do need to stop colluding with successive government, by making do with totally inadequate social care budgets; and in the  process denying disabled people their right to full and  equal participative citizenship.

Together, we need to get back to basics. We need to trust one another; work in co-production; but most of all, together, we need to stand up and ask – what kind of society do we want Scotland to have.  One continuing to be built on the outmoded utilitarianism of the Victorian Poor Law; or one built on equality and active citizenship?

[1] Leadbetter, D. and Lownsbrough, H. (2005) “Personalisation and Participation: The Future of Social Care in Scotland”, London, Demos.

[2] Duffy, S (2012) “An Aapology”, Centre for Welfare Reform, http://www.centreforwelfarereform.org/library/by-date/an-apology.html (accessed 14/03/2013)

[3] BASW (British Association of Social Workers) (2002) The code of ethics for social work, Birmingham: BASW

[4] Ferguson  I (2007) “Increasing User Choice or Privatizing Risk? The Antinomies of Personalization”,British Journal of Social Work (2007) 37, 387–403 doi:10.1093/bjsw/bcm016

[5] OECD (2001) “Social Expenditure in OECD countries after the crisis”,  http://www.oecd.org/els/soc/OECD%282012%29_Social%20spending%20after%20the%20crisis_8pages.pdf  (accessed 14/03/2013)

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Expert Welfare Reform Group

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The Scottish Government has set up an Expert Welfare Reform Group to look at how welfare could be costed in an independent Scotland.

This cannot and should not be done without some thought being given to what kind of welfare we want to see in an independent Scotland.

I welcome the Scottish Government’s policy linkage between health and well-being; and would advocate that an independent Scotland should link both of these to welfare, as well.

In terms of welfare provision, an independent Scotland should also take into consideration the recommendations of its Christie Report on Public Service Reform and its recent Finance Committee’s Report on Preventative Spending.  Both of these reports included the economic and social advantages of promoting and supporting measures of prevention and independent living for disabled people. [i]

It is also important to note that that there are several studies from as far back as the1960’s showing the fallacy of a society not valuing its welfare systems and those who are supported by it, for society at large, and everyone within it, will lose out in the end.[ii]

In the past the UK Governments, of whatever colour,  have shown their scant regard of the value of welfare provision and those in need of it; and have tried to get welfare on the cheap.  But as with buying anything on the cheap, cheapness costs

Cheap welfare costs the recipient their health and wellbeing; it costs family stress and break-ups; it costs ineffective education due to poor student motivation and participation; it costs uninhabitable housing and ugly environments due to lack of repair and maintenance; it costs crime to increase; and so it costs the tax-payer – the original provider of welfare – much more to try to put all these concomitant factors right

Research on well-being reveals the significance of personal relationships, trust and participation to sustain quality of life. Yet it is the 18th century utilitarian, or economic, model of paying welfare recipients “less than the lowest peasant in the field” that remains the dominant basis for welfare today. [iii]

In his book “Welfare and Well-being”, Professor Bill Jordan of Plymouth and Huddersfield Universities, presents an analysis of well-being in terms of social value.  He outlines ways in which social value could be incorporated into public policy decisions.  He also argues that it is ‘culture’ and personal relations, rather than ‘contract and consumption’, which are the keys to better quality of life and true well-being.

In addition, Professor William Talbott of Washington University argues, in his book “Human Rights and Human Well-being”, that securing human rights would lead to improved human well-being.  Within the UK welfare has been based on the assessment of ‘need’.   Such assessments have been done by ‘gate-keepers’ of those resources which could be used to meet such ‘needs’  However, being primarily ‘gate-keepers’ those  needs are not always assessed and/or met properly.  For those, mainly Scandinavian, countries which base welfare on human rights, and restrict wide variation between the ‘rich’ and the ‘poor’, a greater sense of well-being is felt throughout the population.  This has been validated by the epidemiologists Richard Wilkinson and Kate Picket, in their seminal work, “The spirit level”.

Today, the argument should not be around ‘the safety net’ of welfare, but how welfare can empower people to be good, participative citizens in an equal and progressive society.   The former Emeritus Professor of Disability Studies at Greenwich University, Mike Oliver advanced the concept of emancipatory services. [iv] These services are designed to develop disabled people as full and equal citizens, actively participating not just in the economic sector of society, to which the present welfare system is solely geared, but to its civil and social sectors as well. Emancipatory services are based on four principles: self-assessment, self-management, participation and citizenship.[v]

As was indicated above, a Scottish ‘welfare system’ would benefit from a holistic approach to ‘welfare policy’, i.e. if welfare, health, social care, housing, well-being, etc., were seen as connected and inter-related within the economic, civic, cultural and social policies of Scotland, Scottish society and the quality of life within it, would benefit.

A more holistic view of welfare would enable a wider range of ‘outcomes’ to be associated with its provision.  To explain, at present the welfare system is geared to one outcome – placement within the labour market.  But as feminine sociologists, like Selma Sevenhuijsen, Professor of Women’s Studies at Utrecht University, and others[vi] have argued over the value to society of the informal ‘caring role’ women play in society and how that should be recognised as part of ‘citizenship’, so society should value other roles disabled people might play in the civic, cultural and social life of society.  It has to be acknowledged, though, that economic self-sufficiency would still be the ultimate goal; but the welfare system could provide incentives to volunteer or participate in other activities outside the labour market, as possible stepping stones, or even as a permanent alternative (if assessed as such) to employment.

Finally, it should be argued that up until now, the welfare system has only attended to the supply needs of the labour market.  Apart from the “Access to work” budget, which could still be argued relates mainly to the supply needs of the market, and anti-discrimination legislation, which is rarely enforced, there has been little done too alter the demand side of the labour market.

Even from government statistics, it is plain to see the  need to open up  the demand side of the market.  Of those Atos have ‘re-assessed’ as being ‘fit-for-work’, only 2.9% have actually gained work.  As the recent BBC documentary has shown, the vast majority, who are really hard to place, have been ‘parked’ as they are seen as “lazy, thieving b*****ds”.  This allows private companies, like Triage to make a quicker buck on the 2.9% who are the easiest to place.[ia]

If the welfare system were to be placed within a more holistic structure of policy developments, then action could be taken to ‘open up’ the market to those on welfare who could only meet part of a job description, or who could only work a few hours a day, rather than a few days a week. Support for such an approach comes from the work of Shigehiro Oishio, Professor of Psychology at the University of Virginia.  He states:

“Fully functioning individuals are …. those who have loving relationships and contribute to society via work, family, volunteer work, and political engagement”[vii]

As with civic participation above, such activity might be seen as a stepping stone to fuller employment, or it could be seen as a permanent arrangement between the employer and the welfare system with each paying their share of the person’s income.

However, the employer may also need to be incentivised in some way, through subsidy, contracts or reduction in taxation. Nevertheless, the principle should be considered – to open up both society at large and the labour market in particular to the active participation of disabled people therein.  Again, as Bill Jordan advocates:

“The evidence of stalled well-being seems to me to strengthen the case for this (tax-benefit) reform.  An ethic of care and a citizenship of active engagement would be far easier to promote if all paid work and unpaid work received the same treatment from the tax-benefit authorities.  Indeed, a policy for increasing well-being, rather than income and employment, would be impossible without this measure.”[viii]

[i]  Independent Living means:

‘… disabled people of all ages having the same freedom, choice, dignity and control as other citizens at home, at work, and in the community. It does not mean living by yourself or fending for yourself. It means rights to practical assistance and support to participate in society and live an ordinary life.’

For disabled people to live their life in the way they choose, they must have rights to:

  • inclusive education and training
  • equal opportunities for employment
  • full access to our environment
  • fully accessible public transport
  • technical aids and equipment
  • accessible and adapted housing
  • an income including income from benefits
  • accessible and readily available information
  • advocacy and working towards self-advocacy
  • counseling, including peer counseling
  • accessible and inclusive healthcare provision
  • communication and appropriate support for communication
  • personal assistance

[ii] See Alcock P et al (2001) “Welfare and wellbeing: Richard Titmuss’s contribution to social policy” Policy Press Scholarship  online http://policypress.universitypressscholarship.com/view/10.1332/policypress/9781861342997.001.0001/upso-9781861342997-chapter-11 (accessed 06/03/2013) and Titmuss, R(1968)”Welfare state and welfare society” in “Commitment to welfare”  Allan  and Unwin

[iii] Bentham, J (1781) “An introduction to the principles of moral legislation” http://www.utilitarianism.com/jeremy-bentham/index.html (accessed 06/03/2013)

[iv] Oliver, M (1994) “Move on: From welfare paternalism to welfare citizenship” Social Action, vol 2, no. 1

[v] For a fuller discussion about emancipatory services, see Elder-Woodward, J (2002) “Social Work and disabled people: from crafting clients to sustaining citizens” http://disability-studies.leeds.ac.uk/files/library/elderwood-SWDP-Paper.pdf (accessed 06/03/2013)

[vi] See for example, Sevenhuijsen S (1998) “Citizenship and the ethics of care: feminist considerations on justice, morality and politics” Routledge, London.  Barnes, M (2006) “Caring  and social justice”, Palgrave, New York; and Held, V (1995) “Justice  and care; essential readings in feminist ethics”, Westview Press, Oxford

[vii] Oishi, S, Diener E and Lucas R E (2009) “The Optimum level of well-being: can people be too happy?” in Diener, E “The science of well-being: the collective Works of Ed Diener” London, Springer p192

[viii] Jordan, B (2007) “Social work and well-being”, Dorset, Russell House Publishing, p137

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The Bedroom Tax, some facts and figures

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2012 has already seen 49,730 recipients of Local Housing Allowance (LHA) lose an average of £10 per week as a result of changes in housing benefit brought about by the UK Government’s welfare reforms. In addition, 9,000 (18%) LHA recipients with a disability have lost their £15 excess per week. That’s just under £33M taken out of the Scottish economy in one year alone.

However, from April 2013 housing benefit for all working age people in social rented homes will be linked to the size of property councils believe they need. This change is being called “The Bedroom Tax”, as people will be charged for bedrooms deemed superfluous to need.

In contrast to the changes to Local Housing Allowance already in place, this change will disproportionately impact on households containing a disabled person. DWP figures show that across the UK of a total of 670,000 households affected by the bedroom tax about 450,000 (66%) will contain a disabled person.

DWP Ministers say that they want housing benefit claimants to choose to rent properties that they can afford when/if they go into work.

However, the households affected are more likely to be older than the general working age. The DWP estimates that 55% of the households affected will contain a householder aged between 44 and retirement age. The bedroom tax will also disproportionately impact on women within 350,000 households, for more than half (52%) of all those affected are headed by a single female.
The Scottish Government’s Welfare Reform Project estimates that 95,000 Scottish households will be affected by the bedroom tax alone, losing up to £16 a week in Housing Benefit.

The Scottish Government estimates are useful but probably underestimate the scale of numbers of people who will suffer. This is because it only looks at the impact of a single benefit loss, and doesn’t take account of the fact that many of the same households will also have lost or will lose the contributory benefit part of their Employment Support Allowance due to its time limitation, or failing the Work Capability Assessment and other assessments for Disabled Living Allowance or its successor Personal Independence Payments. They may also face other reductions under Universal Credit in time.

If the DWP’s estimate that two thirds of the households affected will contain a disabled person holds true then more than 60,000 disabled people and their families will be affected by the bedroom tax.

Research commissioned by the Scottish Federation of Housing Associations (SFHA) shows that just under one third of their working-age tenants “under-occupy” their tenancies by at least one bedroom. This means that the number of Scottish Housing Association tenants likely to be affected is somewhere between 24,000 and 31,500. This would cost these tenants between £13.6 million and £18million in lost benefits over a year.

Housing Association tenants most likely to be affected by the under- occupancy rule are single adults, two adult households and single parents (one adult plus children).

More than half of under-occupying tenants are single people (52%). The most common scenario would appear to be “the empty nest”, with 56% of those affected aged 45 years or older.

Although tenants will be penalized for under-occupying, they have little option but to do this, because there is a chronic lack of one bedroom properties in the social housing sector. The SFHA shows that 44% of working-age Housing Association tenants need a one-bedroom property, but only 24% occupy one; and that across all tenants, 62% need one bedroom but only 34% have this. The Scottish Government has estimated that of the 95,000 tenants affected by the bedroom tax, only 8,000 will be able to find a downsized property, due to the availability of one bedroom properties.

Applying the DWP figure of two thirds of those affected by the bedroom tax are disabled people, this means that only 5,000+ disabled people in Scotland will be able to find any downsized property.

For these disabled people, the situation is even more dire. No-where in the legislation is there an acknowledgement that for some, an additional bedroom is essential to accommodate an overnight carer, or a partner who cannot share a bed with the disabled person, or to store medical equipment; and no-where in the legislation is there provision to adapt the downsized property before it can be lived in.

During the same period that Housing Benefit reforms are being introduced the DWP aims to reduce expenditure on Disability Living Allowance (DLA), and its replacement the Personal Independence Payment (PIP), by 20% by 2013/14.

Almost one in five Housing Association tenants and one in six working-age tenants receive DLA, so the impact on both tenants and Housing Associations could be very hard indeed.

If 20% of current recipients of DLA were found to be ineligible, this would be 4% of all tenants. However, the tenants of specialist housing providers for disabled people (such as those in the Margaret Blackwood’s Housing Association) will be most affected by these cuts as they have a much higher proportion of disabled tenants.

Even before benefit reforms began, 20% of Housing Associations / Co-operatives working-age tenants on Housing Benefit said they were in “some financial difficulties”, a further 5% were in, “deep financial trouble”, and 15%, “didn’t manage very well”.

If 40% of working-age tenants on Housing Benefit found finances difficult to manage before the cuts how many are going to be plunged into even greater poverty and debt after they take full effect?

The SFHA is calling, at a minimum, for disabled people who live in adapted properties to be exempt from any restrictions to Housing Benefit. However they also want the UK Government to reconsider the impact of the bedroom tax on all households, urgently.

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Internalising ‘the haves’ perception of ‘the have nots’

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I’ve been reflecting on the position most of us are presently in, that of resource poverty, within a financially austere society: we all seem to be scared of asking for, or even mentioning, things which should be rightfully ours in a just society

This has even been seen in our hesitancy to use the term ‘resources’ in our replies to government consultations; we can’t be seen to be asking for ‘more resources’ in our consultation replies. We are scared to ask those, who are seen as the ‘haves’ within the resource distribution equation of today’s society, in case we get even less.

We ‘have nots’ have internalised the miserly thinking of ‘the haves’ within this period of austerity, caused in the first place by them, the ‘haves’, who have so greedily wanted more. We ‘have nots’ are in danger of seemingly adopting the ‘haves’ perception that we, the ‘have nots’, are really the ‘not deserving’.

Within general conversation I suppose ‘resources’ does mean ‘money’; but ‘resources’ can also mean other things as well, such as land, plant, equipment, manpower (personal assistance); as well as internal things, like skills, talents, knowledge, status, prestige, etc.

I note that some writers also use the term ‘goods’ to describe all of the above, but such a term is not in common use, other than within capability theory and other philosophical theories.

However, in this day of the big society and co-production, the term ‘assets’ is more generally used and I was wondering if we couldn’t use it to our advantage. In today’s ‘neoliberal’ politics of individualism and self-reliance, ‘assets’ are normally seen as being intrinsic. In terms of Charles Leadbetter, it is these ‘assets’, in terms of knowledge, skills and experience, which we ‘plebs’ can bring to the professional’s table of ‘coproduction’.

But, as with ‘resources’, ‘assets’ can also be seen as extrinsic; e.g. a large bank account is a substantial asset. The issue is that within today’s political neoliberalism, ‘assets’ is the term more readily associated with internal capabilities, whereas ‘resources’ tend to be associated with external ‘goods’, or tools

I do think there’s a job to do when discussing with others, the virtues of the big society and co-production, that the use of terminology surrounding ‘resources’, ‘goods’ and ‘assets’ must relate to both the internal and external dimension of such terms; otherwise we will be in the situation where disabled people will be called upon more and more to use their internal ‘assets’ at a time when their external ‘resources’ are being depleted; whereas, in reality both terms are really the one thing.

It was Professor David Miller of Oxford University who pointed out that to sustain social justice; the individual requires external resources to take advantage of equal opportunities. It is no use making theatres accessible to disabled people if they cannot get on the bus to get there, or have no money to pay for the ticket.

Similarly, you cannot promote or maximise the use of an internal asset / resource, such as skills, knowledge, or experience, without having the respective external asset / resource, such as money, suitable transport, or accessible information.

Both internal and external assets / resources are co-dependent.

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Is it right to buy a right?


Are we turning our market economy into a market society, where everything can be bought for a price, including privilege and rights?

This is the question set out in a new book by Michael Sandel, Professor of Philosophy at Harvard University; “What money can’t buy; the moral limits of markets”.

I believe such a question is valid to the development of health and social care policy here in Scotland.

Ever since the Second World War we have been advocating the moral virtue of queues.  We used to queue for shopping when food was rationed both during and after the war.  We now queue at the bus stop, at the theatre door; we queue for medical care in hospital and for social housing.  But now we can jump queues at airports by buying a speedy boarding ticket; and we can go to a private hospital to get treatment quicker.

We can also treat fines as fees.  In a study in Israel, a nursery school started to fine parents who were late picking up their children.  Instead of decreasing, they found that the rate of late pick-ups actually increased, as most parents considered the fine as an extra fee for longer child care.  Within my own experience, I was once talking to a rich disabled person, a land owner in Dumfries, who used to drive from his home to London to attend a meeting and drive back the very same day.  He was caught for speeding in his Jaguar one day, but instead of bemoaning the fact, he thought it was just the price for speeding all the other days.  His fine that day paid for his choice to break the morality of safe driving, avoiding harm to himself and others on the road.

Within the field of health and social care, we can see the increasing marketization of services.  To some extent this has favoured the growth of independent living for disabled people, for it has allowed us to choose and control our own support.   Instead of being at the mercy of state controlled services, we now have money from the state, to buy and control the type of support we want, from the people we want to provide it and at a time we want it.

However, for that privilege, we are being charged, often at a rate which maintains our poverty no matter how hard or how long we work; assuming of course we have the opportunity to work in the first place.  Community care charges paid by disabled people only contribute 4% towards the total budget of local authority social care.  However, that same community care charge can constitute up to 90% of an individual disabled person’s income.  As one such person said:

“What you’re buying with your charge is a human right, and I don’t believe that anyone in our society should have to pay for a human right. No-one else pays to go to the toilet or to get out of bed in the morning.”

This person was right, independent living is a right under the United Nations Convention of Human Rights of Disabled People; and has been signed up to by the UK Government.  But until it has been put into ‘domestic’ law, no-one can take any legal action to safeguard such a right.

However, despite disabled people working with the Convention of Scottish Local Authorities to re-write its guidelines on implementing community care charges, the legal basis to give local authorities the choice to charge or not is still on the statute books.  Yes, local authorities can choose not to impose such oppressive taxes on disabled people, but only two in Scotland have made that sensible and correct choice.

Now that social care is being integrated with health care, there is a fear at large (justifiable or not) that rather than social care eventually becoming free at the point of delivery (as is the case for health care) more and more aspects of health care may well become chargeable.

However, as Michael Sandel points out, people can and have used ‘market forces’ to advance their philosophical and moral beliefs.  In Paris, a group of citizens felt that having to pay to use the Metro (the underground railway system) barred their freedom of movement.  They, therefore, created an insurance fund into which they paid £5 per month instead of £50 for a monthly rail ticket.  This “mutuelle” would pay for any fine and legal expense if anyone were to get caught.

Several prominent disabled people have already refused to pay their community care charges, like Professor Michael Oliver.  Mike was a professor of disability studies in London who refused to pay his community care charges and challenged his local authority to take him to court – which, of course, they didn’t.

But there has never been a concerted nationwide boycott of community care charges.  Confidence and commitment are certainly major factors in such a boycott.  There may well still be a fear among many of being taken to court; and of losing services.  As stated above, an insurance fund, or “mutuelle”, might alleviate the former.  Confidence may also be bolstered by understanding the fact that the local authority is still obliged to keep providing the services they have assessed, even when the person withholds payment.  The only way they can withdraw the service is by re-assessing the person; and if there were to be a mass boycott, it seems unlikely they would want to do that

One other drawback is that for many on self-directed support, the local authority takes off the charge before they issue the direct payment; i.e. the direct payment given is minus the community care charge owed.  But even here the local authority itself may be at jeopardy of the law, for it should treat all of their clients, whether receiving a direct payment or not, equally and fairly.  And obviously they do not.

However, from a theoretical point of view, it would be interesting to speculate on how likely such civil disobedience of this type would be in the context of community care charges.  For example, a nationwide six-month boycott of paying charges by disabled people would require the generating of a significant level of indignation and sense of social injustice at large.  It would also require a great deal of leadership and organization by individuals, rather than organizations, within the independent living movement.

Certainly, compared to an issue such as ‘free public transport for all’ such a sense of social injustice does not seem to be in doubt.  Many disabled people and their supporters believe they are being subjected to double-taxation.  First they pay for local authority services through general community charges; then they are taxed again through community care charges, for one specific service.

But this feeling of social injustice is not shared by others who do not directly experience it; and whether it’s the price of tea, the poll tax, or the cost of petrol, we know there’s nothing more emotive than a widely held acknowledgement of unfair taxation to raise the hackles of a disgruntled general populace and stir up direct action.  Indeed, one wonders if this issue could manage to re-ignite the fires of direct action which we haven’t seen since the DAN protests of the last century

Franklin D Roosevelt once said, “We have nothing to fear but fear, itself”, but he had two men each morning to get him out of bed.  And there’s the iniquitous rub

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