Wednesday, 4 March 2015

A tale of two general election years

A recent article in the Guardian drew attention to the BBC’s current efforts to increase the numbers of disabled people on and off-screen. Tania Motie and Tanni Grey-Thompson argued that there are three stereotypes applied to disabled people - we are heroes, scroungers or brave victims. The BBC, they wrote, has a role in challenging this, and that:

Sophisticated, multi-faceted, authentic portrayal influenced by disabled people will really help to break down barriers and allow disability to become part of the DNA of our society.

This reminded me of how, 23 years ago, in 1992 - which like 2015 was also a general election year - the BBC launched a series of programmes made with and about disabled people, together with a booklet and poster advertising.  The series and the booklet were called Disabled Lives: we wanted to call it Disabling Society but Channel 4 had got there first with their own series that same year. The initiative resulted from an Advisory Group made up of disabled people brought together by the BBC to help them  develop programmes which challenged the stereotypical and unrealistic ways in which disabled people’s lives were portrayed. 

It sounds familiar doesn’t it? But there were some differences.  

The key difference is that, in 1992, disability was increasingly being identified as a civil rights issue, whereas today public debate is dominated by arguments and counter-arguments about whether we are ‘scroungers’ or ‘vulnerable’.  

The 1992 booklet said that it, and the BBC series of programmes, was about:
one of the most exciting civil rights issues of our times, the right of disabled people to participate equally and fully in the communities in which we live….Today, there is a growing movement of disabled people who insist that our lives have value and that we want to be treated as equal citizens with equal rights.

This was before the Disability Discrimination Act which was finally passed in 1995 after many years of campaigning.  The programmes and the publicity gave a voice to this demand for an end to discrimination, but also emphasised the importance of changing the dominant cultural representations of disabled people, arguing - as Elspeth Morrison (one of the Advisory Group’s members) put it:

If we have no representation of ourselves other than those images used in charities’ advertising, crippled witches in children’s books, brave and tragic media stuff, theatre and film’s metaphorical use of disability as social inadequacy, social decay - if there is no expression of life as we live, it, how do we begin to validate ourselves and learn about each other?

One of the photographs (taken by David Hevey) used in the booklet and in the posters  - was of the Direct Action Network holding up a bus in Manchester.  No buses were wheelchair accessible at that time and access to public transport was an important part of the campaign for anti-discrimination legislation.

Independent living (having choice and control) was also a key focus, for people with the whole range of impairments and across all ages. The Independent Living Fund had been established in 1988 and more and more people with high levels of support needs were accessing it and starting to live the kind of lives their non-disabled peers took for granted. In general, more disabled people were demanding, and getting, their entitlements to support to enable them to go about their daily lives. 

Organisations of disabled people (as opposed to the charities speaking for disabled people) were increasing in number and influence in the early 1990s, reflected in the fact that the people on the  BBC’s Advisory Group were mainly from organisations of disabled people.  The initiative encompassed Deaf people, people with physical and/or sensory impairments, people with non-evident impairments and health conditions, people with learning difficulties, mental health service users and older disabled people.  As People First (the organisation of people with learning difficulties) said:

We are for difference
For respecting difference
For allowing difference
Until difference
Doesn’t matter anymore.

In the early 1990s, the most influential stereotype of disabled people was of us as objects of pity, as tragic victims who, at best, could be admired for ‘overcoming’ against all odds, at worst were considered to have lives not worth living.  The response of a government Minister to one of the petitions calling for anti-discrimination legislation was to say that he didn’t believe employers discriminated against us, rather they felt sorry for us.

Nevertheless, in 1992 things were shifting.  In the run-up to the general election, the Conservative Party (in government since 1979) devoted a specific section in its Manifesto to commitments to disabled people, celebrating that:

Under the Conservatives, more disabled people than ever before are getting the help they need and deserve. Since 1979, the number receiving Attendance Allowance has more than trebled; the number receiving Mobility Allowance has risen six fold; the number receiving Invalid Care Allowance has risen 25-fold. Today we spend some £12,000 million a year on benefits for long-term sick and disabled people. Even after allowing for inflation, that is 2½ times as much as Labour spent in the 1970s.

The Tories promised to introduce “new disability benefits [Disability Living Allowance and Disability Working Allowance] which will, in the next Parliament, bring extra help to at least 300,000 people. By 1993-94 these and other improvements will mean that we will be directing an extra £300 million a year to long-term sick and disabled people.”

They were proud of the “great success” of the Independent Living Fund and gave a manifesto commitment to maintaining it. 

The Labour Party had very little to say about disabled people in their 1992 manifesto. There was a nod to ‘training’ opportunities, to health services for people with long-term conditions and to better community services for people using mental health services and for people with learning difficulties.  The Liberal Democrats’ manifesto had more, committing them to introduce a Citizen’s Income with a specific disability component, human rights legalisation (to include disability) and a Charter of Rights for disabled people.  

In those days, very few people argued that too much was spent on disability benefits. Very few people thought that disabled and sick people were making false claims for out of work or disability benefits. 

In fact, in 1992 the Conservative government felt that not enough disabled people were being helped and introduced new benefits for which more people were eligible.  Today the Coalition government argues that too many people are receiving help with the additional costs associated with impairment and disability. The Disability Living Allowance - which the Conservative government of the early 1990s was proud to introduce - has been abolished and replaced with Personal Independence Payment with the aim of reducing the budget by 20% and accompanied by such long delays in responding to claims that a Judicial Review has been granted of the process.

In 1992, the government were proud of the Independent Living Fund and vowed to keep it.  Today, they have abolished it and many people with high support needs are at risk of losing the ability that ILF funding gave them to live ‘ordinary lives’

In 1992, disability was a civil rights issue and we were on our way to getting the Disability Discrimination Act, enacted by the Conservative government in 1995.  Today, access to justice under the legislation has been severely undermined by cuts in legal aid, and the introduction of fees for taking a case to an Employment Tribunal.

In 1992, public debate was about whether disabled people were to be pitied as the objects of charity and needed to be ‘looked after’, or whether we should have equal rights to access education, employment, independent living.  Today, public debate is about whether we are avoiding our responsibilities to seek employment and need conditions and sanctions to get us ‘off benefits’, or whether we are ‘vulnerable’.   Instead of recognising the additional support, and the removal of barriers, which are required in order for us to access the same opportunities as others, we are - in order to avoid being labelled as ‘scroungers’ -  once again forced into the role of tragic victims, where the legitimacy of our requirements is to be measured by how ‘vulnerable’, ill and/or impaired we are.  

So if we are to avoid being identified as ‘scroungers’, we have to prove how ‘vulnerable’ we are made by our impairments, illness and/or age.  Yet ’vulnerability’ is created by the society in which we live - by lack of appropriate support, and by prejudicial attitudes. ‘Vulnerability’ is created, for example, by removing benefits from someone because they failed to fulfil conditions which illness, impairment and/or poverty made difficult for them to do. ‘Vulnerability’ is created by threatening to stop providing support to enable someone to go to the toilet when they need to. ‘Vulnerability’ is created by a lack of suitable, affordable housing for a family affected by illness and disability. 

Tackling discrimination, removing barriers, providing appropriate support which gives us choice and control in our lives - none of these are on the agenda for public and policy debate anymore. Instead, our social worth is to be measured by whether we are ‘hard-working’, which means engaged in productive labour.  Other important social roles - looking after others, bringing up children, contributing to our friends, families and communities - are not deemed worthy of support or celebration.

The BBC’s current initiative - all these years after the 1992 initiative - to increase the numbers of visible, ‘happen to be’ disabled people on screen and to increase their employment off screen is laudable.  But we also need to change the language of public discourse about sick and disabled people.

In particular, we need politicians, and all those participating in public debate in the run up to the election in May, to change the way they talk about disabled people.  We need to revisit the language and images the disability movement tried so hard (with some considerable success) to promote during the 1980s and 1990s - language which returns to some of the hopes reflected in the BBC’s booklet all those years ago:

Disabled people are fighting for a society which celebrates difference, a society which does not react to physical, sensory or intellectual impairments, or emotional distress,, with fear and prejudice.  We want a society that recognises the difficulties we face, but which also values us for what we are.

Our hopes for the future are based on the justice of our wish for control over our lives, the strength of our demands for equal participation, the passion of our belief in the value of our contribution to the communities in which we live.

Monday, 16 February 2015

Lifetime Homes are not an 'optional extra' but a mainstream issue.

Thirty years ago, I acted as an advocate for a man who, paralysed following an accident, had spent three years in a residential home separated from his wife and children because of a lack of accessible housing. Today one in five people with spinal cord injury are discharged from hospital to a care home because suitable housing is not available. 

But this isn’t just an issue affecting people with spinal cord injury (though with one person becoming injured every 8 hours these are significant numbers). A review of the costs and benefits of housing adaptations found that suitable housing can significantly reduce the need for health and social care (including admissions to nursing/residential care) amongst older and disabled people in general.

During the period that disability was identified as a civil rights issue, rather than - as is too often the case these days - as being about ‘vulnerable people’, one of the demands concerned access to suitable mainstream housing. 

Thirty years ago, housing for disabled and older people was designated as ‘special needs’ housing. Mainly available in the social housing sector, it was often physically separate from ‘general needs’ housing and was commonly confined to one bedroom properties.  By the late 1980s, roughly two-thirds of ‘special needs’ housing were one bedroom or bed-sits yet most disabled people lived in households which required two bedrooms or more - which meant that while housing need amongst disabled people was severe local authorities and housing associations often had difficulty letting their unsuitable ‘special needs’ housing.  

A small number of local organisations of disabled people (such as Greater London Association of Disabled People) started campaigning on housing issues in the 1970s and 1980s and the British Council of Organisations of Disabled People held a Conference on housing in 1987 which identified a shortage of suitable affordable homes and an inadequate legislative framework.  Shelter took up the issue and published its own research in 1990(1), followed by sponsoring a Conference on housing and independent living (2).  This was the first time that disabled people led a Conference attended by professionals and politicians.

Habinteg, a housing association originally set up by Scope, together with the the Joseph Rowntree Foundation got involved, not only in funding the Conference and further research but also in their role as housing providers.  The Foundation worked with architects and disabled people to develop Lifetime Homes standards and both the Joseph Rowntree Housing Trust and Habinteg demonstrated how to build homes to these standards without significant additional costs. 

This is not just an issue for the current population of disabled and/or older people. The clue is in the name: the aim of Lifetime Homes standards is to build housing which is suitable for households over the course of their lifetimes - from families with young children through to households with age-related mobility issues.  The initial standards - level access, plug sockets and light switches easy to use, a downstairs toilet, windows you can see out of from a seated position - evolved to the current 16 standards intended to create homes that are suited to the needs of the majority and easily adapted when people acquire significant mobility and/or support needs. 

Although adherence to Lifetime Homes standards in social housing was made mandatory by the last government, it remains up to local authorities as to what they require from the private sector.  Progress has been slow : only about a third of new housing is currently being built to Lifetime Homes standards.  The Greater London Authority is the only local authority in the country which requires all new homes to be built to Lifetime Homes standards (and 10% to wheelchair standard), and only 4 out of 10 local authorities require at least some proportion to reach these standards

Yet there is a danger that new legislation could halt what progress has been made. The Deregulation Bill, nearing the completion of its journey through Parliament, is an expression of the Coalition government’s belief that the state should have a minimal role and that most things are best left to ‘the market’. 

This ideology trumps all the evidence that a failure of the state to set standards can lead to greater costs for both individuals and society. The current government itself estimated that, using 2005 data (the last time relevant data was available) about 720,000 households required adaptations to make their housing suitable for their needs

As Richard Best (Director of the Joseph Rowntree Foundation at the time the standards were developed) said in the House of Lords during debate on the Bill

"We know now, as our population ages, how inadequate standards of accessibility—steep steps, narrow doorways, cramped bathrooms, having no downstairs loo, and so on—have helped to create an A&E crisis. The false economy of skimping on accessible, disabled-friendly standards on day one can mean that, later, thousands of us have to remain in hospital when we could otherwise be discharged; readmissions multiply as we are returned to inaccessible properties; and premature moves into expensive residential care are necessary because our homes are inaccessible."

He also pointed out that new housing currently being built is to a lower space standard generally than in the rest of Europe and that, while the need for more and more new homes is indeed great, we should always bear in mind what Aneurin Bevan said when he was the post-war Housing Minister: “In one year’s time we will be judged on the number of homes we have achieved; in ten years’ time we will be judged on the quality of those homes”. Lower standards result in homes being less adaptable for changing needs, thus increasing costs and diminishing the quality of people’s lives.

The government has tried to claim that the Deregulation Bill is not a threat to Lifetime Homes standards.  The Bill allows local authorities to adopt ‘optional standards’ in Building Regulations which are technically a better way to implement standards than, as currently, through planning controls.   However, local authorities will be required to demonstrate that they have carried out a ‘rigorous test’ of the need for Lifetime Homes standards.  It is the government’s view, expressed in the House of Lords debate and elsewhere,  that these are not standards which should be generally applicable and that they are costly for developers and might make local housing developments unviable.

Lifetimes Homes Standards are a way of ‘mainstreaming’ an issue which affects most households at some point in their lives but which current dominant ideology wants to treat as a minority ‘special needs’ issue.  From the Coalition government’s point of view the standards are seen as ‘optional extras’ rather than as something to be achieved for the benefit of society generally.  This is just one example of the retreat from progress made in the recent past. Sometimes this retreat is subtle and nuanced as it is here.  Everyone agrees Lifetime Homes standards are a ‘good thing’ but confining their advantage to a particular group undermines their value as a general social good, from which we will all benefit.  

Political ideology driving the reduction in the role and responsibility of the state is responsible for this move away from a universalist approach. Disability and old age are mainstream issues. We should not be talking about the ‘special needs’ of ‘vulnerable’ people but about what we want for ourselves when we grow old, if we acquire an impairment and/or long-term health condition, or have a child who is disabled.  I don’t know anyone who isn’t affected in some way (either personally or through friends or family) by the needs associated with impairment, illness or old age. It’s about time government and developers alike recognised this.

(1) Jenny Morris, 1990: Our Homes, Our Rights, Shelter
(2) Linda Laurie, 1991: Building Our Lives: Housing, independent living and disabled people, Shelter.

Friday, 9 January 2015

There is only one thing worse than the denial of disabled people’s human rights and that is that no-one notices

On 6th January, disabled people who currently receive an Independent Living Fund grant, and their supporters, staged the latest in a series of protests against the closure of the Fund (scheduled for June this year). They are amongst the 18,000 or so people who rely on the ILF to enable them to live ordinary lives in their own homes. 

The ILF existed to ‘top up’ the funding available from local authorities, in recognition that those with the highest levels of support needs require assistance which local authorities could not provide.  Although funding will be transferred to local authorities from the ILF when it closes in June, this funding will be less than that currently required to support ILF users.  

Everyone involved - from government through to disabled people themselves - knows that the amount of money to be transferred is not sufficient to continue supporting the same numbers of people at the same levels which they currently receive. Government and local authorities alike have recognised that this will mean that personal budgets will be lower than the amount individuals currently receive. 

The ILF closed to new applicants in 2010 and we do not know how many people, who would previously have received an ILF grant, are currently either struggling to cope with insufficient support at home, or have been forced into residential care, or whose family members’ lives are unacceptably restricted by their caring role. We do know that many people with significant learning disabilities and/or autism are being admitted to so-called Assessment and Treatment Units; that people with 'severe learning disabilities' are the largest group of ILF recipients; and that despite a government commitment to move people out of such units more are still being admitted than are leaving. We do know that such short-term placements can turn into years of sometimes inhumane or neglectful treatment; that people in such Units can die unnecessarily; and that it is proving more and more difficult to support people to live in their own homes.  

No-one has monitored the impact of the closure of the ILF to new applicants over the last five years.  And it looks as if no-one will monitor what happens to current ILF users when the transfer of inadequate funding happens in June. Baroness Jane Campbell urged the government, last March, to monitor what happens to them and expressed her concern that local authorities will “fail to meet 21st-century rights of disabled people to independent living, as articulated in …..the UN Convention on the Rights of Persons with Disabilities.” 

The problem is that the legislative framework for delivery of support is underpinned by ‘welfare’ not rights.  The Care Act and the statutory guidance which accompanies it, as Tabitha Collingbourne identifies, are severely limited by the fact that the principles and outcomes set out there, while welcome, are unsupported by enforceable individual rights. 

This opens the door for local authorities to reduce the amount of support received by people who are currently funded by the Independent Living Fund.  The Association of Directors of Adult Social Services has explicitly stated that such reductions in funding are likely to occur and the Care Act guidance itself assumes that this will lead to some people having to sack or reduce the hours of support workers who they currently employ to help them go about their daily lives.

A lack of individual rights means that a disabled person can be denied the help they need to go to the toilet. It means that the level of support to live at home can be so insufficient that the only alternative is residential care. It means that people can be denied the support they need in order to work, to attend college, to look after their children, to participate in their family and community. 

We need to document what happens, not only to people who currently use ILF funding but also to those who would previously have been able to apply for it. There is only one thing worse than the denial of disabled people’s human rights and that is that no-one notices.

Sunday, 19 October 2014

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?”. 

Monday, 29 September 2014

"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.

Monday, 22 September 2014


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. 

Monday, 14 July 2014

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.