Why we need to build on the Independent Living Fund

The Court of Appeal’s decision to allow the appeal against closure of the Independent Living Fund has given us a chance to step back and consider why we are really opposed to the closure of the ILF.  Up until now the main focus has been on how the closure would be a disaster for disabled people because local authorities are not in a position to make up the shortfall when responsibility is transferred to them (see, for example, this excellent analysis by DPAC).

However, this is an argument that belongs to this point in time, in the context of the draconian cuts to local authority budgets.  There are those who argue that, if personalisation of social care was properly funded and properly implemented, then it would make sense for disabled people’s independent living needs to be met by social care services. 

But would it? 

Consider the history of the Independent Living Fund.  It was set up to replace the Domestic Needs Allowance, a social security payment which covered the additional costs of those people who needed help with ‘ordinary domestic tasks’ like cooking and cleaning (see my previous blog).  It was thus part of a system based on entitlement – if you met certain criteria you had the right to a certain amount of money. Up until 2008, the Fund was not cash limited and therefore the assessment of eligibility did not include any element of rationing scarce resources. Neither were there the local variations in people’s experiences of getting help which are so much part of the local authority social care system (except, after 1993, variations in access created by local authorities’ gate-keeping role).  

Research has always found that disabled people generally had positive experiences of ILF assessments and there was little evidence of the ‘social worker knows best’ type of attitude which many complain about when receiving social care assessments.

Even the 2007 Review of the ILF  – used by the current government to justify its closure – highlighted the favourable experiences of assessments, and its much valued and “unusual” example of national portability. Whatever the faults of the ILF, its relationship with disabled people was different to that of social services professionals who – struggle as many do to be more empowering – are working within a culture with a long history of ‘doing unto’ people and a strong, often now overwhelming, element of gate-keeping scarce resources.

If you have an impairment and/or long-term ill health in our society you face additional costs of daily living.  Currently, these additional costs are recognised partly through the social security system (DLA/PIP) and partly through social care. In its original form (between 1988 and 1993) the ILF – although set up as a discretionary trust – was part of the social security system: cash grants were delivered on the basis of entitlement, were not cash-limited, and, to begin with, it wasn’t even clear that they were means-tested. From 1993, ILF funding became a hybrid, sitting between the two systems – funded out of the social security budget but accessed once someone qualifies for a certain level of social care.

The question is: Why do we think that it’s appropriate that some additional costs are funded via a system of entitlement based to a large extent on objective criteria (imperfect though this is) and some via a system of cash-limited, professional social work judgements about what a person’s ‘needs’ are?

Now that we have a United Nations Convention covering the rights of disabled people, with the right to independent living at its heart, why do we think it’s appropriate that our assistance needs are met within a system called ‘social care’?

For years, disabled people and our allies have tried to reform social care systems so that these systems and their resources are used to deliver the building blocks to true citizenship.  In the 1990s, we worked to develop understanding about the difference between a ‘needs-led assessment’ and a ‘service-led assessment’.  In vain we struggled to stop social care assessments being about rationing, about fitting people into existing services.  Then we thought that direct payments would deliver choice and control, yet once implemented they were subject to such bureaucratic monitoring and restrictions on how they could be used that the original vision was all too often impossible. During the 2000s, we thought that personal budgets, Resource Allocation Systems, service brokerage, self-directed support could all transform social care into an empowering mechanism for delivering independent living.

Most developments in social care over the last 30 years have been driven by people who are very committed to empowering the people for whom they provide services.  There are many individuals who I admire for their dogged determination to keep trying to bring about a real transformation in the system and in people’s lives – and some things have changed for the better and many individuals have benefitted.

But progress has been very limited, has arguably stalled in the current climate, and – in any case – can ‘social care’ really deliver a right to independent living?

When I was working on Improving the Life Chances of Disabled People – the Labour Government’s 25-year strategy for delivering full citizenship for disabled people - we identified the following characteristics as necessary for delivering independent living:

-   a single system which would address all aspects of disabled people’s needs for support and/or equipment or adaptations

-   choice and control over the resources allocated

-   self-assessment to be a key part of the process of determining eligibility, acknowledging disabled people’s expertise in how to best meet their needs

-   access to advocacy where this is needed.

Disabled people have long argued against the fragmentation of our lives across different budgets and services. We have argued that we have the expertise about how best to meet our needs for additional support so that we can go about our daily lives.  The Right to Control – an attempt by the last government to bring together six different funding streams – was just one example of how this could be done.  Disability Rights UK has recently recommended that employment support funding should be put in the hands of disabled people themselves, rather than the myriad of contractors and sub-contractors who have such a poor record of success. Neil Crowther’s argument that we need something like an Access to Living fund which brings together all the different sources of funding daily living costs is just the most recent example of an idea which goes back 30 years or more.

It is no coincidence that disabled people were prepared to fight to preserve the Independent Living Fund. It is no coincidence that the ILF has been particularly effective at enabling people with high support needs – including people with significant learning disabilities who otherwise end up in institutional care – to live in their own homes.   Far from abolishing the ILF we need a system which builds on the way it has enabled thousands to lead ‘ordinary lives’. We need a system which funds the additional costs that disabled people have – of all ages, and across the whole range of impairments and long-term health conditions. It needs to be a nationally consistent system, with no element of post-code lottery.  And it needs to be based on universalist principles, like child benefit and DLA/PIP are.  Universal payments, unlike means-testing, are the most efficient way of delivering support, having lower administration costs and creating no disincentive to employment or to increase wages and hours of work.  What is more, by recognising additional costs they help reduce poverty and inequality. 

Critics may say this is unrealistic – particularly in the current context.  I would say that those disabled people who were willing to go to court to defend their right to independent living have shown us that we need something worth fighting for – and the current tinkering with the social care system is not it.  Building on what is good about the Independent Living Fund gives us many more opportunities for working towards the goal of implementing, in full, the vision of independent living that disabled people have been fighting for over the last 30 years.

Self-determination and the closure of Scope's residential homes

Scope’s announcement that it is embarking on a programme of closing residential homes faces two sets of criticisms.  For those campaigning for full social inclusion for disabled people, Scope can never go far enough or fast enough to close down institutions (schools, colleges and Homes) which are seen as sites of oppression and exclusion.  On the other hand, for many of those who live in what is their home – some of whom have lived there for over 20 years – there may well be justifiable fear of moving, and anger that a decision which fundamentally affects their lives has been taken without their involvement. Although residents and family members will be 'consulted' during the process of making the changes, there is no getting away from the fact that the decision to close was made without their involvement.

Setting the decision in not only its current, but also its historical context helps us to understand that we should be wary of assuming that laudable motivations necessarily lead to good outcomes.

Before exploring this, I want to make clear – as otherwise I know I am in danger of being misinterpreted – that I completely support Scope’s decision to close residential homes and, like many, I wish they had taken this decision years ago.

Today, Scope is criticised for running segregated education for disabled young people.  This is a long way from the origins of the organisation, when three parents and a social worker formed the Spastics Society in an attempt to give children with cerebral palsy – at that point deemed uneducable – a right to education. Today, Scope is criticised for not being a genuine ‘of’ organisation – i.e. run by disabled people.  Yet its beginnings are to be found in parents’ dissatisfaction with the way disability organisations of the 1950s were dominated by professionals and mainly concerned with research rather than disabled people’s opportunities. 

Similarly, it is worth remembering that another major provider of segregated services, the Leonard Cheshire Foundation, had its origins in an explicitly human rights framework. Both organisations, like many others which were founded in the period after the Second World War, set up segregated services – residential homes and special schools – as a reaction to the denial of opportunities for disabled adults and children.  While such services have become locations of social exclusion, the values motivating their founders were in fact very similar to the values motivating the fight for their closure today.

The parents who campaigned for education for their disabled children in the 1950s would have had no quarrel with Scope’s vision set out in its 2013 Strategic Direction, of “a world where disabled people have the same opportunities as everyone else”. But where, in the 1950s, segregated provision was seen as a means of achieving these opportunities, today we believe it is a major barrier.

Indeed, how can it not be?  The arguments being made by some against Scope’s decision to close a third of its residential homes actually demonstrates why such provision should have no place in disabled people’s lives today.  The decision itself illustrates the unequal power relationship which is inevitably created when someone moves into a residential home.  This is a service which provides what is at the core of all of our lives – a place to live.  Moreover, because it concerns people who need assistance to go about their daily lives, it is a service which determines what you can do each day, what opportunities you have, and whether you can make decisions over the most basic things as well as the most important things in your life.

Yet the decisions about whether people can continue to live in these Homes are made by others, not by the people living there. Those decision-makers are motivated by the best of reasons – to promote civil and human rights. They want to promote disabled people’s right to autonomy, to self-determination, but the decision-making process itself denies such right, as is illustrated by some of the responses to Alice Maynard’s blogpost about the decision. 

But this in the end demonstrates the fundamental correctness of the decision.  The way such residential provision is organised (and funded) sets up an unequal power relationship and we have to confront the fact that it is this unequal power relationship which is yielded in order to make the decision to close the Homes.

However, while supporting the decision, and the values behind it, we cannot trust the outcome. 

There are two major barriers in the way of good outcomes for the individuals involved.  One is the context in which the changes are being made.  As Scope itself points out, there is a social care crisis which currently means that almost 40% of disabled people receiving social care support are not having their basic needs met including eating, washing, dressing or getting out of the house.  And things are set to get worse. There is a very real danger that people will experience a reduction in the level of support they receive – being confined within the four walls of ‘independent’ housing with the bare minimum of support is not the outcome which anyone would want. As Mark Neary has pointed out in the context of the closure of day centres, phrases like “accessing the community” have been used to put a progressive gloss on what is, in reality, a dramatic decline of support. 

The second barrier is a stubborn lack of understanding about what ‘independent living’ means.  It does not mean living on your own, or even living in your own home.  It does not mean ‘doing things for yourself’.  Independent living is about full citizenship, and is most fundamentally about self-determination.  You cannot have self-determination if you cannot decide where you live, who you live with, and who provides you with daily living support.  Self-determination – autonomy – is a fundamental human right. The segregation and exclusion currently faced by many disabled people is a direct result of others making decisions on their behalf.   

Many of Scope’s service users have significant communication impairments and this can be an additional barrier to self-determination.  If you do not have people in your life who understand how you communicate your preferences, then you cannot even get anywhere near having self-determination.  In 2002, Scope published a Good Practice Guide for those working with people with communication impairments. It was written by disabled people from Essex Coalition of Disabled People who had provided training for both workers and service users in some of Scope’s residential homes, and was co-produced with them.   

It was, in fact, while delivering training in the Homes that it became apparent that the basic building block of enabling choice and control was often lacking. It was common to be told “He can’t communicate” or “She has severe learning disabilities and won’t be able to tell you anything”.  The lessons learnt – and the good practice guide – are as relevant now as they were then.   

The contradiction at the heart of Scope’s decision about its residential services – a contradiction which means the decision is both right and wrong – will only be resolved if what is put in place is underpinned by self-determination. And this goal has to be pursued for everyone.  Anyone can express a preference, whatever their level of communication or cognitive impairment – the responsibility is on us to find ways to understand those preferences. Unless this fundamental human right is realised, the outcomes of today’s decisions will only be criticised in the same way that the outcomes of the decisions of 50 years are today.

Are there certain things that we value which cannot be delivered by market forces?

There’s been a lot of welcome publicity these last few days about the increasing use of zero hour contracts for homecare workers, and of rushed 15 minute visits for people who need intimate personal care.  Last night on Channel 4 News Rochelle Monte, a homecare worker, talked of the huge turnover of staff caused by poor wages and conditions of employment. 

This reminded me of a question which the philosopher, Michael Sandel asked at a Labour Party fringe meeting last year: “Are there certain moral and civic goods that markets do not honour and money cannot buy?”

This is a fundamental challenge to many areas of social and economic policy, such as the re-organisation of the NHS, but it is particularly a challenge to social care policy.

The nature of our society is increasingly determined by policies based on the assumption that good choices are made and good services delivered through self-interest and financial incentives.  The 1990 NHS and Community Care Act ushered in the ‘purchaser/provider split’ in social care services and after more than 20 years of privatisation, it is the market which determines the nature and quality of care services, rather than moral or political decisions about what kind of lives we want for ourselves and our communities.

But are there certain things that we value which cannot be delivered by market forces? 

Can people who need help to go about their daily lives - help which involves intimate care, that enables someone to access the most basic human rights like privacy and communication - rely on the profit motive to deliver this assistance in a way which protects and promotes their human rights?  Giving and receiving intimate care is not the same as having your car serviced.  To rely on another person in such a way is inevitably associated with a vulnerability to abuse, unless the person providing the care holds and promotes values which in many instances are incompatible with the profit motive.  Maximising profit requires holding down wages, increasing productivity by reducing the amount of time spent on each task to a minimum, only investing in training to provide basic competence, and minimising regulation.

This is not to say that services run by public authorities are necessarily any better at delivering our human rights.  The devaluing of the lives of disabled and older people was manifest in the abuse and poor care standards of the old asylums and institutions.  The mistake was to replace them with organisations motivated by profit and answerable to their shareholders.  The desire to drive down costs leaves little room for the development and delivery of services which are motivated by values relating to the public good and answerable to their users.

The early campaign by disabled people for direct payments was always clear that giving individuals purchasing power was only a means to an end, not the end in itself.  Disabled people’s local organisations (Centres for Independent Living) promoted a value system which would challenge vulnerability to dependency and abuse, and instead develop empowering ways of delivering assistance.  But much of this was lost as organisations struggled to survive and the more traditional charities and private sector organisations competed for contracts in a commissioning process which values cost (‘efficiency’) more than quality.

As Michael Sandel said: “If market practices sometimes crowd out non-market norms and attitudes worth caring about, then, in order to decide where markets serve the public good and where they don't belong, it is not enough to consider standard economic efficiency considerations alone. It is also necessary to anticipate when values and attitudes worth caring about may be crowded out by market considerations, and then to ask how important are those values and attitudes to our society.”

When disabled people campaigned for independent living in the 1980s and 1990s, we were campaigning for a different value system to that which had dominated both statutory and charitable support services.  Our tragedy has been that the progress we made on independent living coincided with the increasing marketisation of public services.  While private sector organisations may often use the language of empowerment, the bottom line is whether they can make a profit out of us.

Earlier this year, the Equality and Human Rights Commission published Guidance on Human Rights for Commissioners of Home Care

These are the values which need to replace the pursuit of profit and the driving down of wages and working conditions.  

Welfare reform and the social model of disability

One of the goals I set myself in writing this blog was to try and set current debates on disability and policy in the context of what has happened over the last 30 years.  The value of taking a longer term view is very much demonstrated, I think, by current debates about welfare reform and the relevance of the social model.

A key feature of these debates is the emergence of campaigners whose voices tended not to be heard amongst previous campaigning on disability issues.  Given a voice by social media, and fuelled by the unprecedented attacks on long-term sickness benefits, these are people who emphasise the impact of ill health (including mental ill health) and impairment on their ability to gain and retain paid employment.  People like Kaliya Franklin and Sue Marsh have written in detail about personal experiences of long-term ill health while at the same time challenging the government on their welfare reform policies.

This has prompted some to assert that the social model of disability is being undermined by the ways in which campaigns against welfare reform have focussed on the injustice of declaring ‘sick’ or ‘ill’ people ‘fit for work’.  For example, Mike Oliver wrote in his Disability Now blog: “most of the political campaigning that has taken place in defence of our benefits and services has forced disabled people back into the role of tragic victims of our impairments and has involved others undertaking special pleading on our behalf. In fact, it has taken us back more than 30 years to the time before the social model came into existence.” 

Mike also reminded us that those who developed the social model   “insisted that the link between illness and disability should be severed for the purpose of planning and delivering services.”

Neil Crowther has provided an excellent analysis of the implications of such a separation in the current context of welfare reform, concluding that “Creating a false dichotomybetween illness/sickness on the one hand and disability on the other, whetherto protect the social model or social security is in no-one’s interest.”

It is useful, however, to step back and both clarify the language we are using in this debate and set it in a wider context.

A common understanding of language is always important to analysis and policy development, but is even more important in the context of discussions about disability because of the enormous confusion over what we mean by ‘disability’.

In popular discourse, ‘disability’ means something being ‘wrong’ with your body or mind. In this sense, to be ‘disabled’ means to, for example, not be able to walk, or to see, or to hear, or to read or write, and it is assumed that these functional limitations determine what a person is able to do.  If someone is to receive help from the state, therefore, eligibility will be determined by assessing their level of functional impairment, i.e. their level of ‘disability’ which in this sense means their level of ‘inability’. Moreover, if the ‘problem’ is impairment then the response needs to be health and other specialist services aimed at curing, treating, rehabilitating or managing those conditions.

It may be tedious to those familiar with the history of the disability movement to reiterate how we have challenged this world view.  But we need to keep restating this challenge because changing the meaning of the word ‘disability’ is absolutely necessary to changing our position in society.

So, to be absolutely clear, during the 1970s and 1980s disabled people developed a different way of explaining our social and economic experiences – and in doing so adopted different meanings for the words ‘disability’ and ‘disabled’ than that described above.  As the British Council of Organisations of Disabled People explained, in 1981:

“Disability is the disadvantage or restriction of activity caused by a society which takes little or no account of people who have impairments and thus excludes them from mainstream activity.  (Therefore, disability, like racism or sexism, is discrimination and social oppression).’

Impairment is a characteristic, feature or attribute within an individual which is long term and may or may not be the result of disease or injury and may:

1.  affect that individual’s appearance in a way which is not acceptable to society, and/or;

2. affect the functioning of that individual’s mind or body, either because of, or regardless of society, and/or;

3.  cause pain, fatigue, affect communication and/or reduce consciousness.”

Refusing to use the word ‘disability’ to mean impairment – but instead using it to refer to disabling barriers/oppression – is as important as refusing to refer to adult women as ‘girls’.  It is part of bringing about a wholesale change in social attitudes – a necessary precondition to changing socio-economic experiences.

The social model enables us to place our experience of disadvantage in the context of how individuals, organisations and institutions interact with us.  The medical model places the focus entirely on how we experience our impairments. Medical model thinking is embedded within our culture – as deep-seated as sexism, and as damaging.  In spite of the government, and many local authorities, claiming that they take a social model approach, eligibility for benefits and services is still determined by assessment of how much our bodies are affected by impairment and/or illness, rather than the disabling barriers we experience.

The insistence on separating out the experience of our bodies from the disabling barriers we experience came out of the struggle against segregation and exclusion.  Indeed, many of those who developed the social model had been consigned to institutional care.

As Liz Crow wrote, the social model has been liberating for many, many disabled people: “It has enabled a vision of ourselves free from the constraints of disability (oppression) and provided a direction for our commitment to social change.  It has played a central role in promoting disabled people’s individual self-worth, collective identity and political organisation.  I don’t think it is an exaggeration to say that the social model has saved lives.”

The damage that the medical model inflicts on us is demonstrated by its application by the social care system, as illustrated by one mother writing about her daughter’s recent experience of being assessed:

“…now my daughter has turned 18, and she is entitled to support in her own right. She has a desire and right to live an independent life, apart from me, replacing my unpaid support with social care. But to get this, she has to claim she is desperate, unhappy, "crumbling". She has to conform to the image of the thwarted disabled girl she – and I – have spent the last 18 years fighting. She has to openly declare her life is a tragedy. The assessment process is entirely based on what you can't do. In several interviews with social workers, each lasting over two hours, my 18-year-old daughter has had to talk about her inability to wash, dress, walk, sit, get in and out of bed… As soon as the social worker left, my daughter burst into tears. Spending over two hours talking about all the things you can't do is hard for anybody. In a world in which being proud, powerful and disabled means challenging every assumption made about you, this is particularly wounding.”

No wonder we don’t want to talk about what our bodies can’t do, about pain, fatigue, about feeling so depressed you can’t bring yourself to speak to anyone.  No wonder we insist that assessments and eligibility shouldn’t be about our incapacities, our ‘vulnerabilities’ but instead about what support we need and changes others should make to enable us to go about our daily lives.

But to deny the experience of our bodies is, in fact, to take a rather simplistic approach to the social model.  In order to apply the social model – in other words to identify the adjustments and supports that are required to enable equal access and opportunities – we need to articulate how our bodies are affected by impairment or long-term health condition.  It isn’t a question of handing over assessment and treatment to the medical profession but of identifying what our additional requirements are – some of which will involve access to appropriate medical treatment, some of which will involve addressing other types of barriers.  These barriers include, for example, changing working conditions in acknowledgement of low energy levels, experience of pain or fluctuating levels of mental health, as well as the more easily recognised barriers of physical access for wheelchair users.

The point is that, as long as we don’t acknowledge, and incorporate, the experience of our bodies into the social model, we won’t be able to demand the changes which will liberate us.

For example, a common criticism is that a social model approach to employment rights and to support doesn’t address the needs of someone with significant mental health difficulties, or chronic fatigue syndrome.  Such an assertion is based on a misunderstanding of the social model but it isn’t surprising because we often have not gone far enough in identifying the changes that need to be made if we are to address the barriers experienced by people with such experiences.  Properly addressing those barriers means a fundamental challenge to how paid work is organised, and indeed a challenge to what ‘work’ is. But in order to identify what adjustments are required to accommodate people with a long-term health conditions, we have to open up spaces which enable the articulation of the experiences of our bodies.

There has always been a tension between those who want to only talk about barriers, and those who want to connect the identification of barriers with our experiences of impairment and/or illness. In the late 1970s and 1980s, this tension was played out in the debates between the Union of the Physically Impaired against Segregation and the Liberation of Network of People with Disabilities.  UPIAS focussed on developing the theoretical coherence of the social model, insisting that the focus had to be on disabling barriers (see Campbell and Oliver, 1996, Disability Politics: Understanding our past, changing our future).

The Liberation Network on the other hand, influenced by feminism, attempted to incorporate the politics of the personal into the social model.  They pointed out that, unlike other forms of oppression, being disabled is “often an additional drain on the resources of the individual, i.e. it is not inherently distressing to be black, while it may be to suffer from painful arthritis” (In From the Cold, June 1981). 

Ten years later, in 1991, I wrote how this struggle to incorporate the personal into the social model was continuing – “In our attempts to challenge the medical and the ‘personal tragedy’ models of disability…we have sometimes tended to deny the personal experience of disability.  Disability is associated with illness, and with old age (two thirds of disabled people are over the age of 60), and with conditions which are inevitably painful.”

And Liz Crow, while stressing in 1996 how liberating the social model has been, also went on: “The experience of impairment is not always irrelevant, neutral or positive.  How can it be when it is the very reason used to justify the oppression we are battling against?  How can it be when pain, fatigue, depression and chronic illness are constant facts of life for many of us?”

The crucial point is that we need to take ownership of the experiences of our bodies instead of leaving it to others.  If we don’t articulate what our requirements are which result from the impact of impairment and/or illness we cannot hope to either get the adjustments we need, or ultimately challenge disabling public attitudes which treat such experiences as tragic at best and, at worst, as manifestations of personal inadequacies and/or of a life not worth living.

We do need to avoid using the kind of language which invites people to feel sorry for us, which emphasises our ‘vulnerabilities’.  In campaigning against the punitive nature of current welfare reforms, we mustn’t forget that we want the right to equal access to employment opportunities.  What is wrong is the assumption that a failure to gain paid work is a failure of ‘motivation’.  What is wrong is systems to determine eligibility which do not measure disabling barriers, but which instead force people into emphasising how ill or impaired and ‘vulnerable’ they are in order to get support.  

We need to keep pointing out that ‘vulnerability’ is socially constructed, created by lack of support and by abusive attitudes and behaviours.  Most importantly, we need a fully developed social model which enables us to articulate the experience of our bodies so that we can identify the barriers to be removed and the support that we require.

Current activism by disabled people is a reflection of how far we have come in changing how disabled people view themselves.  Those of us who were campaigning for disability equality 30 years ago should be proud of the current generation of campaigners who are continuing the struggle.  They are building on what has gone before, using new methods of campaigning which weren’t open to us.  I for one am very grateful for what they are doing.

"What's your plan for these people whose lives we apparently can't afford?”

During the recent House of Lords debate on the Care Bill, Baroness Rosalie Wilkins raised the closure of the Independent Living Fund and asked three very important questions of the Government: 

What steps will the Department of Health and the DWP jointly take to ensure that funding is available after 2015?

Will the Minister assure the House that ILF users will not be forced into residential care or confined within their own home with only ‘life and limb’ care following the transfer of funding responsibilities to local authorities?

If this Care Bill is to fulfil its principle of well-being, what level of funding do the Government believe is necessary to ensure that we do not return to the days when disabled people with high support needs had no opportunity to live independently?

Unfortunately, but not surprisingly, this only elicited a ‘non-answer’ from the Government’s Earl Howe:

Following the closure of that fund, we have committed to passing funding to local authorities in order to allow for ILF recipients to be brought into the mainstream care and support system. Final details will be announced as part of the spending round on 26 June.

These weasel words are no fig leaf for the outrage that the closure of the ILF is likely to inflict on disabled people with the highest support needs.  

Here’s just one story (there are many others on the DPAC website, as well as a petition).

Jean Willson is the mother of Victoria, who has very high support needs because of physical impairment, learning disabilities and complex health conditions.  Twenty-three years ago Victoria moved into a flat which she shares with another young woman with similarly high support needs.  These two young women were pioneers – in previous times they would have been consigned to institutional care and would have been lucky to have survived much beyond early adulthood.

Jean tells of how the ILF assessor “changed Victoria’s life; he saw immediately what she needed, he helped us through the minefield of funding and benefits and changed her life and our life as a family”.  ILF funding means that she has one-to-one support throughout the day and evening but also has 6 hours when there are two staff to help with moving and lifting, with her personal care, with her uncontrolled epilepsy and other health conditions.

For the last 23 years, Victoria and her flatmate have lived safely in their own home.

But Jean fears that even a hospital wouldn’t be able to meet Victoria’s needs and that she will die if her level of support is reduced.

All the messages coming from government and from local authorities alike confirm that people currently receiving ILF funding will receive less support once responsibility is transferred to local authorities (see my previous blogpost).

Jean says: “I think things will be OK for the first year of transition, because the funding is transferred for that first year.  But after that the funding is not guaranteed, so Victoria will be re-assessed by the local authority and my fear is that they will decide she doesn’t need two-to-one care at all – it’ll be a resource-driven assessment, her quality of life will diminish overnight and her life will be put at risk. She would die – and she would die very quickly.  I’m not being over-dramatic.  It’s only because she’s had expert care and it’s been a joint partnership with her family, that she’s survived and had a good quality of life”.

In March this year, Guardian columnist Zoe Williams, asked  the government a question we would all like an answer to – “What's your plan for these people whose lives we apparently can't afford?”

Is there a silver lining to the High Court decision on the Independent Living Fund?

Following an application for Judicial Review of the decision to close the Independent Living Fund, the High Court has ruled that the Government carried out an adequate consultation and had not breached the public sector equality duty.  The applicants are appealing – Disabled People Against the Cuts has full information about all of this here.

The High Court judgement does appear, however, to lay down a marker to the government as to under what circumstances it would be in danger of failing to meet its Public Sector Equality Duty.  The judge recognised that ILF users will be “significantly disadvantaged” if they have to rely solely on existing local authority provision. He went further and said that something more is expected of government in order to protect ILF users and, in particular, to fulfill the government’s obligations under the UN Convention of the Rights of Disabled People.

He stated that if the forthcoming legislation on social care, or the Code of Guidance on transferring responsibility for ILF users to local authorities, “does not arrive in time or turns out to be too anaemic in content to enable the Convention principles to be brought to bear in individual cases”, then there would need to be re-consideration as to whether the Public Sector Equality Duty had been fulfilled.  He also said that this would also be the case “if the level of Treasury funding for disabled people generally or for this class of ILF users in transition back to [local authority provision] in particular is so austere as to leave no option but to reverse progress already achieved in independent living”.

While it is disappointing that the application relating to closure of the ILF was refused, the judgement does seem to contain a clear warning to government that it could be subject to successful legal challenge if there is evidence of a reversal of the progress achieved in recent years towards independent living for disabled people.

Before the ILF was closed to new applicants in December 2010, its funding was available to disabled people (between the ages of 16 and 64) with the highest level of support needs.  From its messy origins it had evolved into a highly efficient and very much valued source of funding (by both local authorities and disabled people) for the small proportion of people who need more support than the average user of social care services.  In order to qualify for support people had to be in receipt of the highest rate care component of Disability Living Allowance and to have support needs which were in addition to the level of funding available from their local authority.  These are people who, in previous generations, were consigned to institutional care. 

The largest group of ILF users (almost a third) are people with “severe learning disabilities” and around 6 in 10 have some form of learning disability.  According to the ILF, about one third are using their ILF grant to enable them to live in supported accommodation often with 24 hour care.  The ILF told the Dilnot Commission that

“Many of these people have previously lived in residential care or long stay hospitals….Local authority representatives have

told us that supported living placements for this group are becoming harder to finance since the ILF stopped accepting applications.”

Local authorities are facing a funding crisis and were clear, in their response to the government’s consultation on closure of the ILF that they would not be able to support people at the same level that the ILF had. There seems to be a general acceptance – within central and local government alike - that this may well lead to some people having to live in institutional rather than community settings.   

For others, while they may continue to be able to live in their own homes, there is an assumption that, although ILF funding enabled them to do things that non-disabled people take for granted such as engage in voluntary or paid work, leisure and education activities, local authority funding is only likely to be available for basic needs, such as help with getting up and going to bed, going to the toilet, and so on.  Whether people have to move into institutional care, or experience ‘institutionalisation in the community’ it would reverse a trend towards independent living which has been evident since the 1960s. 

Documents disclosed to the Court during the Judicial Review reveal that Esther McVey, Minister for Disabled People, asked her officials for information on how ILF users might be ‘protected’ after 2015.  Officials responded that the Treasury would not be sympathetic to a DWP bid to maintain funding and that the only course open to the Department was to develop a Code of Guidance on how independent living outcomes could be maintained once people are transferred to local authority funding.  However, as it was made clear that transitional funding was only going to be available for the financial year 2015/16 and it is very likely that people’s support will be reduced after that.

It’s difficult to see how progress on independent living will not be reversed in these circumstances. 

We need to document what happens, not only to people who currently use ILF funding but also those who would previously have been able to apply for it.  And challenge the government if there is evidence that people with high support needs are not being able to choose where and with whom they live, and do not receive support to enable them to participate in work, voluntary or leisure activities and in family and community life. 

Perhaps now is the time to start thinking about how we gather such evidence.

Satirical Elegy on the Death of ‘Lady’ Thatcher

Guest post by Mick Sullivan

With full acknowledgement to Jonathan Swift’s ‘Satirical Elegy on the Death of a Late Famous General’: 

‘Lady’ Thatcher! - what, dead!
Of old age too, and in her bed!
And could that ‘mighty warrior’ fall,
And so inglorious, after all?
Well, since she's gone, no matter how,
The last loud trump must wake her now;
And, trust me, as the noise grows stronger,
She'd wish to sleep a little longer.
And could she be indeed so old
As by the newspapers we're told?
Fourscore and seven is pretty high;
'Twas time in conscience she should die!
This world she cumber'd long enough;
She burnt her candle to the snuff;
And that's one reason, some folks think,
She left behind so great a stink.
Behold her funeral appears,
No widows' sighs, or orphans' tears,
Wont at such times each heart to pierce,
Attend the progress of her hearse.
But what of that? her friends may say,
She had those ‘honours’ in her day.
True to her profit and her pride,
She made them weep before she died

Come hither, all you empty things!
You bubbles rais'd by finance kings!
Who float upon the tide of state;
Come hither, and behold your fate!
Let pride be taught by her egress,
How mean a thing's a ‘Baroness’;
From all her ill-got honours flung,
Turn'd to that dirt from whence she sprung.

- and for her ‘children’ (or ‘grandchildren’) in the present coalition cabinet – in particular Messrs Osborne and Duncan-Smith – I recommend Swift’s ‘Modest Proposal’ as a source for further ideas on cutting welfare:

Disabled people challenge government over closure of the Independent Living Fund

Last week, five disabled people who receive support from the Independent Living Fund went to the High Court to challenge the government’s decision to close the Fund.  Their challenge relates to the government's consultation last year on the closure of the Fund – and there does seem to be a yawning gap between the responses to that consultation and the government’s conclusions. In particular, it would appear that the DWP’s response to the consultation mis-represented the submissions made by local authorities.

The DWP stated that “Most local authorities and their representative bodies expressed strong support for the proposal in principle”.  Yet, looking through those submissions – from both individual authorities and from organisations such as the Association of Directors of Adult Social Services – it is hard to see much evidence of ‘strong support’.

Even those authorities that said they did support the principle of closure usually attached qualifications to this support. Indeed, the government acknowledged, in response to a Freedom of Information request about the proportion of responses supporting the proposal, that: “The overwhelming majority of respondents chose to provide longer responses with many expressing mixed feelings about the proposals or laying out conditions on which they would support it.” 

Most local authorities’ responses (and those of their representative bodies) made the assumption that the closure was going to happen anyway.  Many responses said not enough information had been provided or details of how the transfer would work. Some referred to the advantages of there only being one system for allocating support but all referred to potential problems of closing the ILF, primarily the likely reduction in funding available to individuals. 

Most focused their attention on what mitigating action could be taken, with the primary suggestion being “The obvious mitigation is compensatory growth in the government support for adult social care services” (Association of Directors of Adult Social Services/Local Government Association).  Of course the reverse is happening – by 2015 social care in England will be have been cut by £8billion – a real term cut of about a third of the total budget for social care. 

Disabled People Against the Cuts have reported that, during the two day hearing last week, further information emerged from the DWP which indicates that the transitional funding to local authorities – which is not ring-fenced but which could be used to support current ILF users – will be limited to one year.

As I pointed out in my last blog about this issue, the people who are currently funded by the ILF are those who in previous generations would have been consigned to institutions.  Is this what will happen again – as the National Association of Financial Assessment Officers (the people who carry out the means-test to determine whether disabled and older people should be charged for their care) told the government “some councils may determine that residential care would be a less expensive option than a high cost home care package. 

Guardian columnist, Zoe Williams, writing about the court case last week, asked perhaps the most pertinent question – “What's your plan for these people whose lives we apparently can't afford?”