Painting of woman pressed against window pane

"Inside" with thanks to © Ann Whitehurst

Under New Labour for awhile there was much talk of ‘joined up thinking’ in terms of policy development. Interestingly, one area where ‘joined up thinking’ would’ve made perfect sense – addressing structural and system barriers faced by disabled people – very little was actually done. What we did see is a re-working of an old paradigm. Why am I talking about this now? Well I want to embark upon a piece of ‘joined up thinking’ myself and link the campaign against the cuts with an appraisal of Disablism in 21st Century Britain. People better informed than me have argued the Spending Review has little to do with the nation’s debt – there are areas like Trident where the money could come from – but is more to do with an ideological re-shaping of the State and its relationship with modern society. Moreover, I would argue, this process had begun long before the global markets were screwed by greedy bankers an multi-national companies.

During the 1980s and 1990s there was much talk of “community care” however by the time Labour took office the idea of care in the community and the linked practices were under fire. Much of the criticism was valid but too often there was a failure to notice that the original concept of ‘community care’ was nothing like the Thatcherite policies that were under attack. Walter Benjamin once explained how ruling classes who were fearful of radical ideas would borrow the language of these ‘radical ideas’ yet empty out the meaning of these ideas and replace them with meanings which supported the status quo.

A close examination of policy issues in relation to disabled people would reveal that the State at national and local level, along with all the major disability charities, have adopted the language and concepts of the Disabled People’s Movement but in forms which are a pale reflection of the original concepts. It is almost a version of the emperor’s new clothes – our oppressors pretend they have collected new clothes to sell in charity shops to benefit us but in reality it’s the same old garb designed to keep us under their control.

These bodies talk about: ‘adopting the social model’, independent living’ and ‘direct payments’, yet their policies and practices fail to empower disabled people or remove the structural and system barriers I spoke of earlier.

One example of these ‘new clothes’ was the project of developing what the Blairites called ‘Health and Social Care’ was a form of ‘joined up thinking’ but its aim was both to reduce costs and to restructure the State’s intervention into the lives of disabled and elderly people. However this is not the time or place to rant about the bankrupt nature of the concept ‘social care’ nevertheless it’s important to highlight its oppressive ideological methodology – a methodology based upon ‘the medicalisation of social need’. In my opinion the Blairite ‘social care’ project acted as the launch pad for the attack on disability benefits.

Instead of protesting against the policies of New Labour – their hypocrisy in terms of ‘adopting the social model’ and the so called 2025 Equality agenda – the major disability charities all climbed on board the gravy train and gladly spoke on behalf of disabled people. Even now some of the same people are jumping all over each other to claim front seats in the CONDEM’s Big Society sell out whilst making muted noises about Welfare Reform. Meanwhile Disabled People’s Organisations are either going to the wall or having to whore after local authority service level agreements designed to cut jobs, reduce services and quality.

Disabled People Against Cuts has spoken a great deal about disability and housing benefits and the overall impact of the cuts on disabled people’s lives, however, there is now an urgent need to look specifically at the massive destruction of what the Disabled People’s Movement would call Independent Living. Independent Living is often associated with meeting “Seven Needs” which were first developed by the Derbyshire Coalition of Disabled People and identified those needs as follows:

Information: Disabled people require information on what is available to assist with independent living.

Peer Support: Disabled People need the support of other disabled people to discuss and draw strength from our shared experiences.

Housing: Disabled People need accessible housing. By this we mean accommodation that meets our access requirements and is close to family, friends and local facilities so we can live independently

Equipment: Many disabled people need information and resources to obtain practical equipment to assist them in living independently.

Personal Assistants: This is the one to one support that some disabled people need to live in their own home and be part of the community.

Transport: This may mean improved public transport in terms of physical access, information about the routes, more assistance for passengers who are unsure about using public transport.

Access: The most obvious examples are about physical access such as dropped kerbs, tactile paving, provision of induction loops etc. However access goes much further than this because there are barriers created by systems, practices and attitudes which prevent disabled people from participating.

I want to suggest that these “Seven Needs” are under severe threat and the whole basis of Independent Living is being undermined by the CONDEM Government’s “new clothes” vis-à-vis direct payments, personal budgets, entitlement to and cost of social care.

A recent BBC You and Yours programme revealed a variety of different perspectives on Social Care. In November, Care Services Minister Paul Burstow unveiled the Vision for Social Care which pledged that one million older and disabled people who were eligible for social services support should be assessed for personal budgets by 2013. A number of disability charities have voiced concern over the relationship between this policy and the cutbacks in local authories because personal budgets for social care are being used by some local authorities to save money. Geoff Fimister of the RNIB was quoted as saying:

“When misused as an opportunity to implement cuts, the introduction of personal budgets could have a negative impact on care services and fail some of the most vulnerable members of our society”

This is denied by Jeff Jerome, national director for Social Care Transformation, who is reported to have said ‘… there was no reason a council would use the change of mechanism to allocate resources to individuals differently.’ DPAC has paid particular attention to two quotations from Jerome and have analysed them in terms of reports coming in from all over the country. Jerome:

“Councils have got to pay attention to the resources that they have available to them for every individual and they should assess every individual’s needs fairly and equitably in an open way and say this is what we think you are entitled to because of your own needs.”

Firstly, consider the emphasis: ‘….pay attention to the resources that they have available to them’. This we would argue has helped to determine who councils grant an assessment to. Birmingham and Camden look to be adopting similar approaches. For example in  Birmingham the Council has proposed to move to a “super-critical” eligibility threshold, thus the plan is to only directly fund users’ critical personal care needs. This policy would mean Birmingham would be establishing a care threshold that is higher than the four bands set out in the government’s Fair Access to Care Services (FACS) guidance: critical, substantial, moderate and low.

And what of other service users’ needs? The message from Birmingham is extremely disturbing:

“….people with substantial needs and critical needs that do not involve personal care will be supported outside the formal care system by external agencies, assisted by some funding from the authority.”

The most obvious question to ask is: where will the additional money come from? Using the example of Birmingham we can now consider the second quotation from Jerome:

“And whether that’s given to them as a service or a pound sign, shouldn’t make any difference. It still should be an open transparent and fair way of telling people what they’re entitled to.” Yeah, right.

I’m reminded of what a poster on the BBC’s Ouch messageboard wrote recently:

“And just in case anybody forgets the disingenuiously named “Fairer” Charging guideline were issued under the last government in 2003 and updated to makes sure the same applied to Personal budgets before the last election.” (Peter aka Sociable)

Whilst sharing many of the concerns expressed upon the You and Yours programme by the disability charities, I couldn’t help feeling there was also a degree of self-interested mixed in with the genuine concern. On the same programme Sue Bott, chief executive of the National Council for Independent Living (NCIL), said there was a “crisis” in social care.

“My great fear is that, years and years ago, we got people out of residential care into the community, … what we are going to end up with now is people being institutionalised in their own homes because they will only have enough funding to do the absolute basics of toiletting, feeding and getting in and out of bed. And there will not be the resources for anything else.”

This point of view was echoed by Ann Macfarlane from the Kingston Local Involvement Network who said, “…people living independently with disabilities would be forced into care homes by the care charge increases.” Here is the another aspect of my own ‘joined up thinking’ – alongside the disabled people who may lose services altogether are those who are going to have a massive hike in having to pay for services.

David Lindsell reported that nine organisations which work with elderly and disabled people have written an open letter criticising a consultation on charging more for vital services like dressing, washing and preparing meals. Kingston Council‘s price hike would begin in April and affect an estimated 600 people who currently receive home care, respite care or direct payments. Jane Young, Kingston Council’s former disability equality and access officer described the consultation as a total shambles. She was quoted as saying: “The vast majority of disabled people are unaware of how much of their income and savings they stand to lose as Kingston seeks to charge huge sums for their basic care and support.”

It is a similar picture emerging elsewhere. Councillor Rory Palmer, lead member for adult services on Leicestershire City Council reported increased charges for care homes would only affect 45 people, while about 500 of the 2,000 people using home care services would end up paying more. He also said: “Let no-one be in any doubt that this is as a direct result of Government cuts. We don’t want to do this, but we have to.”

Those forces fighting the cuts at a local level, especially within Labour areas need to be mindful of this type of argument. There is a danger that it can produce this kind of response:

“We now recognise that the local authority is in dire straits and we’re more concerned about services being cut altogether than price increases. These are means-tested so will only affect those who are in a position to pay. The key thing here will be to make sure people are informed of the rises clearly and with enough time to prepare.”

DPAC doesn’t accept the argument that measures of this kind will only impact upon the lives of those able to pay; means-testing has had a negative impact on disabled people’s lives over decades. The truth cost of disablism is rarely taken into consideration.

My ‘joined up thinking’ has reached this conclusion. Nearly all the gains disabled people have made over the last thirty years are being taken away. Disabled people are not only losing their rights, many risk increased poverty and the lost of independence. We should not ignore or play down the stark reality that many disabled people could be forced into residential care against their wishes because of inadequate support and high cost. The Tories have made no secret of their dislike of the Human Rights Act, but now alongside the three illiberal and anti-democratic monkeys – Clegg, Alexander and Cable – they are prepared to deny disabled people their basic human rights and we must do our utmost to thwart them.

–Robert Williams-Findlay

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