Unanswered question(still): What’s your plan for these people whose lives we apparently can’t afford?

In 1983 I spent five months in Stoke Mandeville spinal unit. For some of that time there was a woman in the bed opposite me whose name was also Jenny, and who like me was a single parent with a small child. Neither of us had much in the way of material resources. The difference between us was that, while she was paralysed from the neck down and needed help with personal care and looking after her child, all I needed was a wheelchair accessible flat, a good wheelchair and a car with hand controls. While I spent my time hassling the council to rehouse me into an accessible flat (I was already a council tenant), using my Mobility Allowance (as it was called then) to get a new car through Motability, planning my return to work and to looking after my daughter, she descended into profound grief and despair as she realised that there was no other option open to her than to enter residential care and to relinquish custody of her daughter to her ex-husband.  

I’ve been thinking of this other Jenny a lot lately, in the context of the campaign against the abolition of the Independent Living Fund.  In 1983, there was no Independent Living Fund, no direct payments, and no Community Care Act.  The only piece of legislation that would have potentially have been of help to her was the Chronically Sick and Disabled Persons Act, passed in 1970 but which most local authorities paid little attention to. 

This was the era when many young disabled people who needed a lot of help with personal care could expect to end up in, at best, a Young Disabled Unit (run by the NHS) or a Leonard Cheshire Home. Many more were in stuck in hospital or in ‘old people’s homes’. The OPCS Disability Survey carried out in the mid-1980s found a total of 72,000 people between the ages of 16 and 59 were living in ‘communal establishments’ and a Royal College of Physicians survey in 1985 found that over half of these were in “old people’s homes, psychiatric and geriatric departments and ordinary hospital wards”. 

This was the era when researchers from the Tavistock Institute concluded that if someone enters an institution because of physical impairment “they are displaying that they have failed to occupy or retain any role, which according to society, confers social status on the individual” and that “to lack any actual or potential role that confers a positive social status in the wider society is tantamount to being socially dead”.

However it was also the era when - unbeknown to those of us who were newly disabled - some disabled people in residential care were starting to put pressure on local and central government, and on the NHS, to support them to live in their own homes instead of shutting them away in institutions. Project 81 was formed by a group living in a Cheshire Home in Hampshire and they, together with other disabled people in Derbyshire, pioneered what eventually became direct payments. John Evans’ speech to the Independent Living Conference held in July 2014 explained the origins of the independent living movement and also points out the importance of the Independent Living Fund.  

Through the 1980s and 1990s, it became less likely that people like John, or ‘the other Jenny’, would have no option but to move into residential care. When the government set up the Independent Living Fund in 1988 they estimated that about 250 people would use it.  By 1992, it was enabling over 22,000 people with the highest support needs to live in their own homes. By the new millennium, as a result of pressure from the disability movement and our allies, we had disability discrimination legislation, a commitment to close down long-stay hospitals for people with learning disabilities, and direct payments being extended to more and more people (including older disabled people and people with mental health support needs).

By 2008, we had an Independent Living Strategy, supported by all political parties which promised that - over the next five years - “disabled people who need support to go about their daily lives will have greater choice and control over how support is provided”; and that they would have “greater access to housing, transport, health, employment, education and leisure opportunities and to participation in family and community life”. 

Significantly, this Strategy included a section on disabled parents because - as a result of earlier research and campaigning - it was finally being recognised that disabled people should receive practical support to enable them to be parents like anyone else.  Maybe someone like ‘the other Jenny’ would not have lost her child and her chance of returning to an ‘ordinary life’ if she had become paralysed 20 years later. 

However, since 2010 and for the first time in modern social policy, we are going backwards in terms of opportunities for independent living. Fewer and fewer disabled people receive support from social services and significant numbers of those currently receiving support from the Independent Living Fund are at risk of receiving little or no support when the ILF is abolished in June 2015.  According to Freedom of Information Requests carried out by Disability Rights UK, only 10 local authorities (out of 106 responding) intend to ring fence money transferred from the ILF in June 2015.  Even more worrying, the amount of money to be transferred is less than that currently spent on supporting ILF recipients, confirming the evidence given by the Association of Directors of Adult Social Services to the Joint Committee on Human Rights that they are unlikely to provide equivalent replacement funding for people currently relying on ILF grants.

People whose lives have been made possible by ILF funding have spoken of their fears that abolition of the Fund will result in them having to give up work, impact on their involvement in family and community life, and at best result in them being incarcerated in their own homes or at worst having to move into residential care. More and more local authorities are being open about their practice of limiting the amount of money they will spend to support someone at home to the cost of alternative residential provision.

People with “severe learning disabilities” are the largest group currently receiving funding from the ILF.  With the closure of the fund the question must be asked whether they will be more likely in the future to enter institutional provision - including provision such as the new hospital in Northampton planned for people with learning difficulties, autism or mental health needs (on the site of the old Northampton Lunatic Asylum).  New institutions have already taken the place of old forms of provision: young people with learning difficulties and/or autism are taken into ‘Assessment and Treatment Units’, supposedly short-term but often without much chance of moving out into their own homes - as illustrated by the failure (despite government commitment) to move people out of ATUs following the abuse exposed in Winterbourne View.    

Today, people with spinal cord injury are leaving hospital for residential or nursing homes where the majority of the other residents are older, with dementia, and where staff are not always able to provide the support they need. People expect these placements to be temporary until suitable housing can be sorted out.  But many need a lot of personal care support, including at night, yet often the maximum support offered is four visits a day of 15-30 minutes each. We don’t know how many people who would previously have been able to apply to the Independent Living Fund are now, since its closure to new applicants in 2010, stuck in nursing and residential homes, or imprisoned within their own homes with inadequate support. 

The continuing fight against the closure of the ILF is being waged by a handful of disabled people but on behalf of anyone who needs support - now or in the future - in order to live an ordinary life. It is hard to believe that our government has signed up to Article 19 of the UN Convention on the Rights of Persons with Disabilities, which concerns the “equal right of all persons with disabilities to live in the community, with choices equal to others”. 

In the run up to the general election, all political parties must be asked “What’s your plan for these people whose lives we apparently can no longer afford?”. 

"Family values"

David Cameron announced recently that: 

"A family test on all government policies will be formally introduced into impact assessments from this autumn. It will see every single domestic policy examined for its impact on the family. Policies that fail to support family life will not be allowed to proceed."

There were two narratives which accompanied this speech: one concerned ‘troubled families’, and how Louise Casey was going to be unleashed on yet more families in order to ‘strengthen’ them; the other storyline was about encouraging and supporting marriage. 

Yet these two narratives obscure the potential of a ‘family test’ for policies which affect the lives of families with disabled children.  It will be interesting to see whether the planned impact assessments examine whether policies support these families - or whether as is too often the case disabled children and their families are treated as invisible when it comes to the ‘mainstream’ policy agenda.  It would be even more interesting if the government looked at the impact of their current policies.

Over the last twenty years or so, the policy and legislative framework that affects the lives of disabled children has opened up more and more opportunities and support.  This improvement has continued with the Children and Families Act 2014, which is informed by many of the issues identified by research into families' experiences, for example the need to bring together education, health and social care.  

At the same time, however, there are other policies which - far from supporting families with disabled children - have actually made their lives more difficult since 2010.  Here are five issues which would be exposed if the Coalition government really did carry out proper Family Impact Assessments of their policies.

Families with disabled children are facing increasing poverty

The link between having a disabled child and poverty has been recognised for many years: if Disability Living Allowance is discounted (as it contributes to the additional costs incurred) 4 in 10 disabled children are living in poverty. Half of these live in households with a disabled adult and of these 50% live in poverty. As both the Children’s Society and the New Policy Institute point out, this is probably an underestimate because the additional costs of looking after a disabled child are considerable and are by no means always covered by Disability Living Allowance. 

Contact a Family’s 2012 survey found that increasing numbers of families with disabled children were going without basic necessities: 1 in 6 were going without food; 1 in 5 were going without heating. Many feared things were going to get worse and there were also reports of increasing stigma and negative attitudes towards disabled children and young people.

Current policies are exacerbating the risk of poverty amongst families with disabled children.  A cumulative impact assessment of the changes in tax and benefits, carried out by Landman Economics and the National Institute for Social and Economic Research, found that the reforms are more negative for families containing at least one disabled person, particularly a disabled child. Families with both a disabled adult and a disabled child were particularly badly affected, losing an average of £1500 per year each (see Figure 9).  

Unequal access to childcare

Families with disabled children experience unequal access to childcare, according to a recent Parliamentary Inquiry  This takes the form of:

• higher hourly rates being charged for looking after a disabled child
• local authorities failing to provide the level of support necessary to enable parents of disabled children to take up the 15 hours pw of early education which all 3 and 4 yr olds are entitled to
• insufficient supply of qualified and experienced child care providers.

(see also the survey carried out by Contact a Family)

The Inquiry heard from many parents who had had to give up, or were unable to return to work, because they could not afford and/or could not find suitable child care. At the same time, the current policy agenda on support for childcare is slanted towards helping families where both parents are in work - something which is less likely for families with disabled children.

Funding for short-break services is under threat

Over the 20 years or so prior to 2010, there had been steady, if slow, improvements in the support that local authorities offered to parents of disabled children.  The number of disabled children receiving short breaks rose from 57,383 in 2008-09 to 162,831 in 2010-11  and in 2011 the current government introduced a statutory duty on local authorities to provide a range of short break services. They also committed an investment of £800m over the four years from 2011/12 to 2014/15 in these services.  

However, this money formed part of the Early Intervention Grant and was not ring-fenced.  Moreover, this grant has recently been reduced and abolished with further reductions in the replacement funding structure being made for 2013/14 and 2014/15. While the statutory duty to provide short break services will to some extent protect these services, they are under threat, with recent government statistics indicating that funding on short break services for disabled children is falling back.

Mental health services for children and young people are in crisis

Freedom of Information requests submitted by Young Minds revealed that the majority of local authorities in England have cut or frozen their Children and Adolescent Mental Health Services (CAMHS) budgets since 2010 and three quarters of NHS commissioners are currently cutting or freezing their CAMHS budgets. Increasing numbers of children are being admitted to adult mental health units or being admitted to hospitals many miles from home, as a result of the closure of services for children and adolescents. The government has itself recognised that mental health services for children and adolescents are in crisis. Their  response was to set up a Task Force, which is unlikely to produce anything useful because there is no additional funding.

Institutionalisation of young people with learning disabilities and/or autism

Some of the families who are in particular need of support are those with adolescents with learning disabilities and/or autism.  Inadequate support for families, and also the difficulties of accessing sufficient support as these young people move into adulthood can result in admission to institutional provision which may not provide appropriate support and may be difficult to leave. 

Such situations are apparent in the slow progress that has been made at moving people out of secure hospitals and Assessment and Treatment Units following the exposure of abuse at Winterbourne View.  In spite of the programme set up by the government to achieve a “signficant and permanent reduction” in the numbers in such units, there are more people being admitted than are leaving.  During the last quarter for which data is available, more people - 358 - have been moved into such places than were supported to move out - 261 (you have to scroll down and click on the actual data to see this - the Department of Health do not draw attention to it on the main web page).  

Worryingly, the government’s response to this is to look to large voluntary sector organisations and to so-called ‘social investment’ to produce yet more ‘buildings-based’ solutions - rather than co-producing solutions with young people and their families (see Chris Hatton’s three blogposts of 15 August Part 1 and Part 2, and 17 September ) Proposals such as that to build a 110 bed health provision in Northamptonshire for young people with mental health needs, learning disabilities and/or autism raise the spectre of a return to long-stay hospitals. 

Was David Cameron’s promise to examine “every single domestic policy…for its impact on the family” an empty promise?  Did he really mean that “Policies that fail to support family life will not be allowed to proceed”?  I am sure he didn’t have disabled children and their families in his mind when he made this speech - but if the government really does implement the idea of family impact assessments they need to start by examining the impact of current policies on these families.

"Independence"

During the Scottish referendum campaign we’ve been inundated with the word “independence”.  I don’t think anyone can be in any doubt as to what independence means to those who advocated a Yes vote. To them, “independence” means autonomy, self-determination, the right for Scots to “decide our future for ourselves”.  People talked of “taking power to ourselves”, of “our own independence”.

Disabled people also have a vision of “independence”.  For forty years, since the late 1970s, we’ve campaigned for our right to self-determination, to autonomy.  

Autonomy means ‘self-rule’, being able to make choices which determine what you do. It means freedom from external control. 

Until disabled people started to challenge how they were treated, the assumption was that - if physical or cognitive impairment meant that you required assistance to go about your daily life - then you were “dependent” and had little capacity, or even need, for self-determination. Lack of control over your life meant that you could not choose where to live, whether to work, to marry and have children, how to participate in and contribute to your local community. 

The ‘light-bulb’ moment for disabled people came when some of those who were living in a residential home in Hampshire realised that it wasn’t their need for assistance which meant they couldn’t choose even what time to go to bed, but the way that assistance was provided.  Out of that realisation was built a movement which challenged the definition of “independence”.  As Simon Brisenden, one of the pioneers of that movement argued, disabled people are victims of an:

"ideology of independence.  It teaches us that unless we can do everything for ourselves we cannot take our place in society.  We must be able to cook, wash, dress ourselves, make the bed, write, speak and so forth, before we can become proper people, before we are ‘independent’."

Instead, the independent living movement redefined “independence”:

"in a practical and common sense way to mean simply being able to achieve our goals.  The point is that independent people have control over their lives, not that they perform every task themselves.  Independence is not linked to the physical or intellectual capacity to care for oneself without assistance; independence is created by having assistance when and how one requires it."

Over the years, disabled people campaigned for the removal of barriers, for anti-discrimination legislation and for government policy to change so that - instead of institutions and services which denied choice - public resources were directed in ways which enabled people to live in their own homes, with choice and control over the support they needed to go about their daily lives.  In setting out a 25 year strategy for full citizenship for disabled people, the last Labour government adopted our definition of independent living as:

"all disabled people having the same choice, control and freedom as any other citizen – at home, at work, and as members of the community.  This does not necessarily mean disabled people ‘doing everything for themselves’ but it does mean that any practical assistance people need should be based on their own choices and aspirations."

Internationally, this aspiration for “independence” was recognised by Article 19 of the UN Convention on the Rights of Persons with Disabilities, which concerns the right to choice and control over where you live and to “personal assistance necessary to support living and inclusion in the community”. It is significant that the right to choice and control is set within a human rights framework: unless disabled people have choice and control over the support they need to go about their daily lives their human rights are at risk, as has been illustrated over and over again.

So, just as it was clear in the Scottish referendum debate, that “independence” meant self-determination, having control over the country’s future, so disabled people have been clear that “independence” is about being able to make decisions for ourselves, about having choice and control, being freed from others making decisions for us.

Unfortunately, politicians and service providers are currently applying the word “independence” to us in a way which means the opposite.  In the policy arena of welfare reform, “independence” is defined as not being “dependent” on benefits.  The need for support is seen in entirely negative terms and the barriers created by discrimination, disabling working conditions and/or a lack of jobs are ignored. Instead, the cause of “dependency” is laid at the door of individual motivation and pathology, and the route to “independence” is to be found through “fixing” people’s attitudes by sending them on the discredited Work Programme and the application of sanctions. 

Disabled people’s organisations used to campaign for support to the right to work, for changes to the way work is organised and against discrimination.  Now the punitive impact of welfare reform on so many individuals means the focus has shifted to emphasising “vulnerability”, ill health and inability.  It has become dangerous to talk more positively about a right to work as this can sometimes be seen as colluding with the “shirkers versus strivers” narrative.   

In the social care world, the retrenchment is similarly damaging. Here “independence” is firmly defined as doing things for yourself, no longer in need of services, or only  needing much reduced services. Along with the Orwellian use of the word “efficiency”, which really means cuts in services, enabling “independence” means providing less or no support. 

Nowhere is this more apparent than in the final report of the Local Government Association’s Adult Social Care Efficiency Programme.  

This report reveals that the councils which achieved the necessary “efficiencies”, i.e. cuts, were those that, for example, embarked on a programme of reducing people’s existing care packages by doing what they called “promoting independence reviews”.  Some councils also achieved budget reductions by encouraging staff (through training and/or specific recruitment programmes) to change disabled people’s and family carers’ expectations of what services would provide. The ‘good practice’ examples set out in the report praise the reductions in expenditure and greater reliance on friends, families and neighbours, while ignoring the increased isolation and diminished quality of life.

The rhetoric associated with the implementation of personal social care and health budgets still uses the language of “choice and control” which disabled people promoted for so many years.  Increasingly, however, the narrative is changing to reflect what local authorities are actually doing - which is dramatically reducing their expenditure on support for disabled people.  Expenditure on adult social care has reduced every year since 2008 while at the same time the numbers of people needing support has increased. There is a distinct danger that we will lose all the ground gained in the last 30 years.

During the 1990s, all political parties gradually came to recognise that disability policy should be about removing barriers to, and providing support for, independent living.  By 1995, all parties supported anti-discrimination legislation and all came to recognise the importance of disabled people having choice and control over the support needed to go about their daily lives.  “Independence” was recognised as self-determination and autonomy, not about “doing things for yourself” and doing without support.  Support - whether in the form of personal assistance, equipment and adaptations, or an additional costs benefit (Disability Living Allowance) - was seen as necessary to enable disabled people to access equal citizenship. 

The big question for all us is how do we get back to that narrative. Unless we do the future is very bleak indeed. 

For the first time in the history of modern social policy things are getting worse for disabled people.

There was a lot of political consensus on disability policy during the 20 years to 2010.  Over that period, the disability movement gradually influenced all three main political parties to recognise the discrimination we face in all areas of life, and to acknowledge and make some provision for the additional costs many disabled people incur.  Labour, Conservative and Liberal Democrat parties also came to recognise and support disabled people’s wish to have choice and control over any assistance or equipment we need to go about our daily lives. It was a Conservative government that, in 1992, introduced Disability Living Allowances and a Tory Minister who first used the term ‘choice and control’ in Parliament to signify government support for this important aspiration. 

Then, in 2005, with all party support, the Labour government published Improving the Life Chances of Disabled People, which set out a vision that 

By 2025, disabled people in Britain should have full opportunities and choices to improve their quality of life and will be respected and included as equal members of society.

This was followed in 2008 - again with all party support - by the Independent Living Strategy. This set out an aim that, by 2013:

• disabled people who need support to go about their daily lives will have greater choice and control over how support is provided
• disabled people will have greater access to housing, transport, health, employment, education and leisure opportunities and to participation in family and community life.

[I should declare an interest here - I worked on both these policy documents.] 

There was a commitment to measure progress each year against a clear set of outcomes; and to consider the need for legislation on independent living if sufficient progress was not made by 2013.  

Unfortunately, in 2010 the Coalition government took a ‘ground zero’ approach to disability policy.  The Independent Living Scrutiny Group, chaired by Baroness Jane Campbell, was disbanded and 2013 came and went with no assessment by government on what progress had been made on the Independent Living Strategy.  I’ve therefore done the job for them, using what statistical evidence is available. It makes depressing reading.  I’ve summarised the main findings below, and the evidence for all these general statements is contained in the report itself.

There has been no progress in disabled people’s experiences of choice and control in their lives since 2008, and there is evidence that people who need support in their daily lives are experiencing diminishing opportunities to participate in family and community life.

Older people are finding it more difficult to access support and are experiencing fewer options and opportunities for independent living, while disabled people of all ages who have high levels of support needs are at increasing risk of institutionalisation. Mental health needs are increasing, but access to mental health services is becoming more difficult.

The employment gap between disabled and non-disabled people remains at the level it was in 2010, and there is no evidence that current policies to support disabled people into work are improving employment opportunities. Only 5% of disabled people on the Work Programme have found a job and, although the reported success rate for the Work Choice programme is better, only 1% receive this form of support. There has been a 16% decline in the numbers of disabled people receiving support from the Access to Work programme between 2009/10 and 2012/13.

Large numbers of disabled people have experienced a reduction in their household income since 2010, many are experiencing a reduction in housing opportunities and an increasing number are living in accommodation which is not suited to their needs. 

Although there has been a small decrease in the percentage of disabled people experiencing difficulties with transport, there has also been a large increase in transport difficulties experienced by unemployed or economically inactive disabled people.  Moreover, there have been significant reductions in expenditure on important programmes intended to increase transport opportunities.

This is the first time in the history of modern social policy that things are getting worse for disabled people.  Yet those with the power to change things are refusing to recognise how bad things have already become.  Unless there is a change of direction we are going to see more institutionalisation, more unemployment, more poverty, more prejudice and abuse. Opportunities for full citizenship amongst the current generations of disabled people are diminishing, and will only worsen for future generations unless urgent action is taken to reverse current trends. 

A small group of people have been meeting to discuss whether we can salvage anything from the Independent Living Strategy, and how we can campaign for the disability movement’s long-held aim of a legal right to independent living.  Some tentative proposals have been published via the Authors of our Lives blog and will be discussed at an Independent Living Conference on Friday 18th July. 

Communication is at the heart of being human

This blogpost is written as part of the #107days social media campaign which was started after Connor Sparrowhawk (‘LB’), an 18 year old with learning disabilities, died in an Assessment and Treatment Unit.  This was a “preventable death” according to an independent report (although he had epilepsy he was left unattended in a bath and drowned).  I’ve written before about this. The 107 days of action will end on the anniversary of LB’s death, 4th July, and includes some wonderful actions and blogs as part of the #JusticeforLB campaign’s aim to “to inspire, collate and share positive actions being taken”.

I’m writing this because LB’s death and the campaign itself demonstrate two really important things: firstly that - at a time when so many aspects of social policy and social attitudes are going rapidly backwards - we need to hang onto what we have learnt in the past about the importance of everyone’s human rights and how to promote them; and secondly that if we really want to bring about positive change we have to do something fundamentally disruptive to existing systems.  If the ‘abject failure’ of the Winterbourne View transfer programme teaches us anything, it is that you can’t change outcomes unless you radically change the systems that are responsible for the problems in the first place.  I’ll come back to this point.

The campaign is also making a quilt, made up of patches sent in by many different people.  The photo above is the patch I’ve sent and it sums up one important issue I want to highlight.

“Communication is at the heart of being human”.  Sadly, some people will react to this statement by saying “But some people can’t communicate and you’re therefore saying they aren’t human”.

Such an attitude goes along with a failure to recognise how people can and do communicate. Communication isn’t restricted to being able to speak, or write, or use sign language. Most importantly, communication isn’t incompatible with significant cognitive impairment or what people call “severe learning disabilities”. 

Communication is about recognition of a message being conveyed - it is a two way relationship and we should be paying far more attention to the ‘recognition’ part of the relationship.  Instead of saying “he can’t communicate”, we should be saying “I don’t understand how he communicates; I need to do more to understand, acquire more skills and knowledge, talk to people who know him better than I do”.

How many times have you heard someone say (as I heard only a few days ago):  “X has severe learning disabilities and can’t communicate at all.  She loves swimming and lots of different kinds of music”?   My heart sinks when I hear something like this and even more when the speaker then goes on to describe X’s “challenging behaviour”.  

The statement is both a denial of the human right to communication and - ironically - at the same time it is an unintended recognition that X has in fact communicated very effectively about what makes her happy.  

Attitudes like this go along with a failure to focus on ourselves as a recipient of communication, and instead place all the responsibility on the other person.  Such attitudes betray a failure to use and develop our own skills of observation and understanding; and a failure to use the skills and experience of those who know the person best and who understand how and what they communicate.  

When I was doing research in the 1990s about the experiences of disabled children and young people living away from their families, it was very common to be told that a young person “doesn’t communicate at all”.  We tried very hard to find people who had a different perspective on those whose experiences we wanted to explore, and if we were lucky we found people like the volunteer who came into a residential home once a week to spend time with one young man who we had been told didn’t have any way of communicating:

You have to wait a long time for him to react.  Although if he’s feeling negative about something he soon lets you know - he screams and shouts when he doesn’t like something but it can feel very unfocused because it feels so extreme.  It feels as if it’s just coming from inside him but actually when you think about it, it’s usually something outside himself that he’s reacting to…because his negative reactions are so obvious it’s quite difficult to see his positive reactions but they’re there if you really pay attention.

Imagine if everyone ignored you when you spoke or consistently misunderstood what you said.  Imagine if people do things to you, for you, without paying any attention to what you say, to what you want, need or feel. Wouldn’t you “scream and shout”?

One of the things I try and do with most of the posts I write for this blog is to remind ourselves of what we’ve already learnt, and sometimes achieved, in the past.  Many people who have contributed to the debate following both LB’s death and the ongoing failure of the Winterbourne Review Joint Improvement Programme have referred to the important work of those such as Jim Mansell and to, for example, the origins of Person Centred Planning. As Sara Ryan, LB’s mother, has written: “We sort of know so much in many ways and yet so little has changed for learning disabled people in the UK. “ 

Just one of the key lessons from the past was encapsulated by Alison Wertheimer in a book she edited for the the King’s Fund about good practice in developing opportunities for people with learning difficulties. Published in 1996, it included many examples of understanding what people were communicating when they exhibited ‘challenging behaviour’, and how changing environments and activities, addressing health needs, and providing support in different ways reduced and eliminated such difficulties.  Alison wrote:

Contrary to what usually happens, people with challenging behaviour need more rather than fewer choices, and more opportunities to control their lives in terms of what they do, where they spend time and who they are with.

We do actually have some mechanisms which would, as Alison recommended, give people who are locked away in ATUs etc more choices and more opportunities to control their lives. But these are not to be found in the kind of organisations described - in another publication from 20 years ago - as dominated by an Apollo culture:

Apollo was the god of order and rules, and these organisations try to divide up the work into neat and distinct areas, where everyone has a clear defined role.  Each role has a job description and a defined area of authority, with clear lines of accountability and hierarchical systems of decision-making.  

These organisations cope well with stability but struggle to deal with major change.  There is a danger that change will simply be incorporated into the existing structure and have little impact, if cultural and values issues are not explicitly addressed.

This publication was promoting person centred planning and challenging the way support is delivered, but the analysis can be applied in a wider context.  We have systems which result in people entering and remaining in institutional settings because housing isn’t available.  We have systems which create additional support needs because health needs are unrecognised and/or untreated. We have systems which take mechanisms, such as direct payments and personal budgets, intended to increase an individual’s choice and control but which instead apply an Apollo culture of order and rules which undermines self-determination - there are many examples of this but Mark Neary’s experiences are just one. 

A clear lesson from the past is that in order to bring about real change the entire system has to be disrupted so that the focus is on creating more opportunities for people with learning disabilities to communicate their preferences and experiences.  We need something like Chris Hatton’s proposal that control of all the money currently spent on keeping people in ATUs (an average cost of £4,500 per week!) should be given to a “ninja task force” which puts people with learning disabilities and families in charge and works to “develop local, individual supports for people moving out of these services”.  A key issue will be the availability of housing - though there are lots of good practice examples of how to provide real homes for people with learning difficulties instead of tying money up in institutional provision. 

One thing that most of the reports which follow ‘scandals’ in health and social care systems illustrate is that services which deny the fundamental human right of communication create at best ‘challenging behaviour’ and at worst abuse and neglect that can end in death. And this applies as much to, for example, older people as it does to people with learning difficulties. 

In order to bring about real change we have to reconstruct systems and services that have as their main motivating force the ability to recognise and act on what an individual communicates about their needs.  It is only by changing who has control over the available resources that we will have any hope of both protecting and promoting the human right of communication and of avoiding the wasteful expenditure on services which all too often fail those whose lives they are supposed to enhance.

Personal budgets and self-determination

Self-determination – in the sense of being able to act on, and/or have others recognise, your needs and aspirations – is key to the transformation of support which disabled people and their allies have been seeking over the last 40 years. More than that, it is central to disabled people’s demands for access to full and equal citizenship. As Simon Duffy argued, in making the case for the rights of people with learning difficulties to citizenship:

“Put simply, if you have self-determination then this means you are in charge of your own life.  If you do not have self-determination then other people are in charge of you” (Duffy, Keys to Citizenship, 2003, p.5). 

In the current debates about personal budgets and social care, we are in danger of losing touch with this.

This blogpost has been prompted by an article in the Guardian which attacks the roll out of personal budgets, cites research on limitations of self-directed support, and refers to a letter that has been sent to all Directors of Adult Social Services arguing that “the strategy for personal budgets and personalisation is not only failing: it is also undermining the quality of the care and support provided”.

The article claims that “SDS [self-directed support] has failed to deliver its foundation stone, the up-front allocation of money to allow people to choose their own support”. There is a danger here of confusing the principle of self-directed support with one of the mechanisms for self-assessment and support planning – the purpose of the ‘up-front allocation’ being to give the individual an idea of how much their budget might be in order that they can plan how their needs might be met.

The author also says that the “over-arching vision” of current social care policy “is to personalise services and so improve outcomes for service users”. This is not in fact what the original aims of personal budgets were: instead their origins are closely tied to the pressure from disabled people for choice and control over the support they need to go about their daily lives. In other words, the focus was not on personalising services but on increasing the autonomy of disabled people.  Choice and control over the support needed in your daily life means you can aspire to self-determination – without such choice and control many people can’t even choose when to get out of bed or go to the toilet, let alone participate in or contribute to their families, communities and the wider society.

I wrote about the history of direct payments and independent living in an earlier blog post, emphasising how important it is to know where we’ve come from in the context of addressing current challenges.  It’s similarly important to consider how personal budgets came to be adopted by both the Labour government and the current Coalition government, in order to understand the contradictions and difficulties we are facing in their implementation.

How did we get here?

During 2004, the Prime Minister’s Strategy Unit was developing a 25 year cross-government strategy Improving the Life Chances of Disabled People. In developing the chapter on independent living, the Strategy Unit built on not just the experience of disabled people’s organisations and direct payments, and the success of the Independent Living Fund but also the pioneering work that In Control had been doing on individual budgets (primarily but not entirely for people with learning difficulties).

What all these things had in common was that disabled people were able to decide, for themselves and/or with the help of families, friends and supporters, how to use the resources which the State made available to them to support them in their daily lives. 

However, while all these initiatives had been helpful in giving people more control over the support they needed, they only involved resources available for ‘social care’.  Yet one of the key messages from disabled people was that they were fed up with their lives being fragmented across different services and budgets. For example, the division between community health and social care services resulted in the ludicrous argument about whether the need for a bath was a ‘social’ need or a ‘medical’ need; while people claiming Access to Work support often had to face the argument from the Department of Work and Pensions (DWP) that they couldn’t fund a wheelchair used at work because it was also used at home.

Another key message was that disabled people’s own expertise in what their needs were and how to meet them was considered subordinate to professional expertise; while another was that some people, or the family members supporting them, wanted more control over resources but were daunted by the responsibility of taking a direct payment and organising their own support.

Life Chances therefore committed the government to developing a new system of delivering support which would include:

-  “a simplified resource allocation system, including ‘one stop’ assessment and information”, which “addresses all aspects of needs for support and/or equipment or adaptations”

-  Individuals being able to “take some or all of their budget as a cash payment and/or to have control over the budget (with support if necessary) without actually receiving the cash”

-  “self-assessment, with advice/information or advocacy support where required”

-   Each local authority area having a user-led organisation, modelled on existing Centres for Independent Living, which would provide support to disabled people to enable them to use individual budgets and direct payments.

The key elements of this proposed new system can thus be seen as:

-   bringing together different budgets and systems to deliver resources in the form of a cash payment and/or budget under the control of the individual disabled person;

-   based on self-assessment of needs and how best to meet those needs;

-   together with the provision of advice, information and advocacy required to make full use of such resources.

There was a lot of resistance, at senior level, within the Department of Health to these proposals but there was eventually agreement to pilot individual budgets, which would bring together six different funding streams.  There was also a specific project funded by the Department of Health to deliver the commitment on user-led organisations – a project which had some success even at a time when cut-backs were being made to local voluntary organisations, and which continues today in the Office for Disability Issues’s Disabled People’s User-Led Organisations programme

However, the attempt to bring together six different funding streams in the Individual Budgets pilot failed owing to the inability of the different government departments to work together to bring this about – there was a lack of understanding about, and support for, the rationale underpinning the policy, particularly within the DWP.  At the same time, the Department of Health was developing a strategy with the aim of ‘transforming adult social care’.  This resulted in Putting People First: a shared vision and commitment to the transformation of adult social care and included a commitment to personal budgets for social care, which owed much to the support of Ivan Lewis MP for the policy.  

While the proposals set out in Life Chances – and the Independent Living Strategy which followed in 2008 – were clearly grounded in the aspirations of the independent living movement, the Department of Health’s proposals were couched in terms of personalising social care services.  There is a potential tension between an approach which focuses on ‘tailoring services to individuals’ and one which focuses on the autonomy of an individual to decide how best to meet their needs.  The former approach is more likely to leave professionals and service providers in charge of deciding how best to ‘personalise’ services while the latter requires a fundamental transformation of power relationships.

Nevertheless, the implementation of personal budgets built on the model originally developed by In Control – which does aim to transfer power (in the form of information and resources) to disabled people.  A key part of this model is telling people, at an early stage, what level of resources they might expect.  This was considered necessary to enable people to be fully involved right from the start in deciding how best to go about meeting their support needs. It also places disabled people on more of an equal footing with social workers/care managers, who themselves usually have an idea of what level of resources are likely to be available. It does not – and was never intended to – replace the local authority’s statutory obligation to carry out a needs assessment as laid down in legislation, guidance and case law.

Barriers to self-directed support

Personal budgets, like direct payments, are merely a tool - albeit a necessary one – to enable people to have choice and control over the support they need.  If you don’t have control over the resources – in the form of a cash payment or a budget – then you cannot self-direct your support and your self-determination will be severely curtailed.  As Think Local Act Personal state on their website, “The aim of self-directed support is to give people control over their support so that they can live more independent lives. Rather than being passive, people are active citizens choosing how to spend their allocated budget with or without help”. Yet this is what current critics are urging government to jettison.

Of course, there are also other things which are necessary for self-determination: the level of resources must be sufficient; there must be an absence of unnecessary restrictions on how the resources can be used; information and advice will be needed about how best to use resources; assistance from others may be necessary in order to plan how best to meet needs and put the support in place; and there must be appropriate services, equipment or activities available from which to choose.

It should surprise no-one that there are many barriers to ensuring all these factors are in place and – in the context of unprecedented pressures on social care budgets – it is predictable that the local authority role of rationing scarce resources has become more and more problematic for those on the receiving end.  Such pressures are manifest in an intensification of bureaucratic processes associated with rationing activity.  In order to save money, local authorities have reduced the number of professionally qualified social workers carrying out assessments, increasing the number of assessments carried out by more junior, less qualified staff, while increasing bureaucratic procedures in order to keep a tight rein on how resources are allocated.  The introduction of personal budgets has fallen foul of the economic times in which they are being introduced, resulting in restrictions on inadequate budgets which – too often – fail to deliver the self-determination that the policy was intended to make possible.

To add insult to injury, many councils have glossed over the impact of budget reductions by talking about ‘personalisation’ and ‘transformation’, using the language of empowerment and choice and control (as is shown for example in Karen West’s study of one particular local authority).

The original introduction of direct payments – from 1996 onwards – similarly often failed to deliver the choice and control envisaged by campaigners but in that case and at that time it was more down to the attitude of a lack of trust amongst professionals: a fear that people might abuse the system and an assumption that many disabled people were not ‘capable’ of making choices or the ‘right’ choice.  Even so, there were occasions – as there are today - when councils sought to shut down valued services (such as day centres and residential respite), justifying this as necessary to put control in the hands of service users but in actuality driven by the wish to cut back expenditure on expensive, building-based, provision.

One problem for many of us is that the demand for direct payments and personal budgets can all too easily be seen as a way of marketising and privatising public services.  The problem for disabled people, and their families, is that – while we may want to defend public services – our experience is all too often that we have little or no say in how we live our lives.  We can only reconcile the two positions by developing mechanisms which marry collective provision with individual choice and control.  Individual choice and control cannot be achieved while power remains in the hands of institutions and professionals; but neither can it be achieved unless resources are made available to individuals through a progressive taxation system. This is what direct payments were intended to do – and where professionals and local authorities support people to use direct payments then this is what they achieve.  Personal budgets were a response to the criticism that managing direct payments was too onerous and daunting for some.  They were intended to deliver the same principle of self-directed support as direct payments. 

We need statutory guidance on self-directed support

The authors of the recent letter to Directors of Adult Social Services, referred to above, have said that a personal budget “need be no more than a signal that no support plan will be constructed solely on the basis of selecting services from a pre-purchased menu”. This would be to throw the principle of self-directed support out of the window. The forthcoming guidance on the Care Bill must include the principle of self-directed support – and set out how Councils should go about delivering this.  It will not be enough to merely require councils to name the amount of money available in a personal budget. If the guidance does not include the ways people can direct their own support there will be no leverage on councils to do anything other than they always have.

Many local authorities have resisted attempts to increase transparency in the processes of assessment and allocation of resources, and all too many professionals have little commitment to self-directed support as the route to disabled people’s self-determination.  It is very unfortunate that flaws in the way local authorities are implementing personal budgets are being used as a reason to undermine the principle of self-directed support.

Anything which undermines the gradual progress we have been making over the last 40 years towards independent living needs to be resisted.  And the current attacks on personal budgets are undermining that progress.   Up-front allocations and support planning are intended to help redress the balance between professionals and disabled people.  They are being misused by some local authorities as mechanisms for rationing and controlling what people spend their budget/direct payment on, and how.  This does not invalidate the value of such mechanisms.  Instead, it makes it even more vital that there is statutory guidance to help ensure they are used to empower rather than disempower people.