Friday, 19 June 2015

"This is starting to feel like a Monty Python sketch"

So here’s the second of my blogposts based on ‘stuff’ that I’ve found difficult to throw away while clearing out my study.  (The first one was about language and human rights).   What is also relevant to this blogpost is the lobby of Parliament planned for Wednesday 24th June 11a.m. in a last ditch attempt to persuade the government to change its mind about the closure of the Independent Living Fund (see for more details of this and the petition).
In 1991, I received funding from the Joseph Rowntree Foundation to carry out research which aimed to explore what independent living meant to disabled people.  The research concerned people with physical impairments under retirement age, who were either living in residential care, receiving social services in their own home, or employing their own support workers (1).

The general context was the NHS and Community Care Act 1990, which had the potential to enable more access to independent living but which also had its limitations.  The other important context was that the Independent Living Fund had been set up in 1988 and was already making a difference to the lives of a small but growing number of people. In addition a few pioneers of independent living received cash payments from their local authority to enable them to employ their own support workers (though technically local authorities were prohibited from doing this).

When clearing out my study last month I found the notebook I kept during the process of doing the research.  These included notes of my experiences of visiting residential homes to carry out interviews which I had set up by letter and telephone with people who lived in these settings.  The interaction with staff when I arrived at the homes was often rather disconcerting, as in this example: 

Two people are in the office; they both look at me as I come in but carry on talking to each other.  Not in a way of finishing off a conversation.  It becomes almost embarrassing the way they seem to be deliberately keeping me waiting.  Eventually, I butt in and ask if they could let KT know I’m here.  “Are you from an organisation or is it personal?” I explain that he’s expecting me.  “Yes you can see KT.  That will be alright”. 

I assume these two women are care workers as both are wearing uniforms though neither of them have name badges or, at any point, say who they are. 

After chatting a bit more, one of them goes off and then comes back to say “He’s on the toilet”.  Ten minutes later “He’s still on the toilet. He takes a long time”.  More time elapses.  “He says he doesn’t know who you are”.  I explain I’ve received a letter from him and have also talked to him on the phone to set up the meeting.  I then ask for ND (another person who has agreed to take part in the research).  She goes off and then comes back to tell me that NF is out.  I say, No it was ND I’ve arranged to see.

This is starting to feel like a Monty Python sketch, particularly as she’s walking around with a parrot on her shoulder - but it’s not dead. [I have no memory of this but it must have been true, I was writing these notes sitting in my car afterwards.]

Another care worker comes up to me and says “You’ve waited long enough.  I’ll go and find ND for you”.  I thank her and ask whether she could also check whether KT is expecting me. 

And so, finally, I get to see both of them.

During the 20 years or so that I carried out research I went into a lot of institutional settings to interview people who lived in them.  Sometimes I had good experiences but mostly they were of a very disconcerting nature.  Partly staff were thrown by the fact that, although I was presenting as a ‘professional’, I also looked like many of the people living there in that I’m a wheelchair user.  So I think they found it rather disconcerting as well.  I was ‘out of place’, not in the role that they were used to for people ‘like me’. 

I’ve kept the interview transcripts of the 50 people I interviewed in 1991, including those of the two men in this particular residential home.  One was in his early 20s and had moved there straight from a residential school:

I ask when I want help here, there’s a buzzer.  Half an hour later they come.  It’s very frustrating.  Sometimes they’re quicker, sometimes not.  I get nagged here - about nothing.  I don’t know what they want me to do.  It’s because I’m young.  They treat me like a child - some don’t but some do….I want to live in my own flat because here the staff tell you what to do.  They’re not supposed to but they do….. I want to have control over my life.

And the other man, who had been there for 18 years said: 

It’s got worse over the years, it’s more now what the staff want. I don’t have control over my life…..  I’ve been trying to leave for 8 years…at first I had a social worker who was no good but now I’ve got a better one and I’m going to get help, she’s sorting that out. 

Both these men were looking to the Independent Living Fund to enable them to leave residential care, in the hope that this would give them more choice and control over their daily lives - in the hope, indeed, that it would give them a future.  The momentary feeling of powerlessness I experienced in my interaction with the care staff that day was nothing compared to the lack of autonomy which pervaded their daily lives.

The Independent Living Fund had been set up in 1988 as a result of changes to the social security system brought in by the 1986 Social Security Act. This brought in a new Income Support system which abolished the additional payments for ‘domestic support’ that had been part of the Supplementary Benefit system. At the same time there was some recognition that the benefit system was not flexible enough to deal with the particular costs that some disabled people had, partly because costs varied according to individual requirements and partly because many people not in receipt of means tested benefits had just as much difficulty meeting these costs. 

The ILF was therefore set up as a charitable trust funded from the social security budget.  We have lost sight of how revolutionary the original ILF was.  It was open to people of all ages (older people made up 37% of recipients by the time the original Fund was closed down in 1993).  It was also open to people with a wide range of support needs, including those who needed just a small amount of help as well as those who had high support needs. Although there was a means test applicants did not have to be in receipt of benefits in order to qualify for a grant.

It also illustrated that it was possible to operate a system where national eligibility criteria triggered a right to a cash payment but the level of payment varied according to individual circumstances. Most importantly, it “demonstrated that large numbers of even the most severely disabled people want to manage their own personal assistance and are capable of doing so”. (2)

The radical nature of the original ILF was made possible because the government mistakenly thought that only a very small number of people would apply and the original budget was set at only £5million.  But by 1992 its annual budget had reached £97million and over 18,000 people were receiving ILF grants. 

For a brief few years therefore, our social security system enabled people, of all ages and any impairment who have additional support needs, to be funded to meet those needs in ways which gave them choice and control over their lives.  The explosion of demand illustrated what disabled people and their families aspired to and how lives could be transformed. 

However, when the original ILF was replaced by the 1993 Fund, eligibility was restricted to those aged 16-65, who received the higher rate of the care component of Disability Living Allowance, who were on Income Support, and who already received at least £200 worth of local authority-funded services per week. This meant access was denied to older people and to, for example people with mild learning difficulties who did not meet local authority eligibility criteria. It also created wide variations according to local authority practice in referring people to the ILF93 (ironically one of the reasons the current and last government gave for abolishing the ILF). In addition, an upper limit of £300 ILF grant was imposed.

In spite of these limitations, the ILF93 has enabled thousands of people to do the kinds of things, lead the kind of lives, most non-disabled people take for granted.

I stayed in touch with some of the people I interviewed in 1991/2, including the younger of the two men mentioned above.  When I lost touch with him, in 2000, he was still in the same residential home but about to be moved because the charity running the home was ‘decanting’ (as they called it) ‘residents’ (as they called them) into ‘independent living flats’ (as they called them) on another site so that they could sell for development the rather desirable piece of land on which the home stood. 

The radical nature of the original Independent Living Fund happened by accident, not by design.  Those who do design policies about how to support disabled people often have the best of intentions and are sometimes profoundly influenced by disabled people’s own ideas and aspirations.  This was the case with the history of direct payments, which were developed by a small number of individuals who demonstrated that giving them the money to enable them to arrange their own support not only enabled them to lead ‘ordinary lives’ but was also cost effective.  

However, once direct payments were adopted as national and local policy (from 1996 onwards), its implementation was put in the hands of people who are working within a culture that assumes the primacy of ‘professional judgement’, that distrusts people to determine how best to meet their own needs, and which - most importantly - is dominated by the need to ration ever scarcer resources. These factors have held back the potential of direct payments ever since their introduction but they have become even more dominant in recent years. 

The result is too often a denial of autonomy, of self-determination - perhaps the most fundamental of human rights. 

Twenty-five years ago, very few of the people I visited in residential homes, or those receiving home care social services, felt they had choice and control in their lives.  The powerlessness and isolation they experienced is what current ILF recipients fear when the ILF is closed down at the end of this month (June 2015).

People like Penny Pepper have described the difference that the ILF has made to their lives  

ILF, through the care workers it paid for to match my needs and lifestyle, was a revelation. I had the same three people helping me wash and dress; the choice to change my mind in what I wore, what I ate, in when I got up – and the freedom to go to the toilet when I needed. It’s impossible to overstate the effect of this liberation.

There is a woman in my village who is struggling to remain living in her own home.  She gets what is considered an ‘intensive care package’ from the local authority - which means she gets a half hour visit at 10a.m., an hour at 12.30 and another half hour at 7.30.  As one of the neighbours supporting her says, ‘she is going stir crazy stuck inside. Having spent her whole life working the fields she is finding herself quite suffocated at the moment”.

As I said in my previous blogpost, human rights, and their abuse, begin in the detail individuals’ lives.  They begin in the way we relate to each other, the language we use. But they are also manifest in the way our society responds to the needs of people who require support to go about their daily lives, who need assistance if they are to exercise the basic choices that most people take for granted.  The closure of the ILF and the refusal to adequately fund social care represent our society’s acceptance that many disabled and older people face isolation and a lack of choice and control over the basic activities of daily life. 

(1) Jenny Morris 1993. Community Care or Independent Living? Joseph Rowntree Foundation ;
Jenny Morris, 1993.  Independent Lives? Community care or independent living, Macmillan.
(2) Ann Kestenbaum 1996. Independent Living: a Review, Joseph Rowntree Foundation.

Sunday, 31 May 2015

Language and the small places of human rights

I’ve spent this month (May 2015) not only feeling devastated by the general election result but also trying to clear out my study - both of which have made me feel that half my life is being thrown away.  

The ‘stuff’ accumulated over most of my working life up until 2010, when I retired, represents the battles waged to articulate disability as a human and civil rights issue.  It has been (and continues to be - I haven’t quite finished it yet) very very hard to divest myself of these various documents - many published in the days before internet publication. It’s made even more difficult because at the same time we are faced with five years of a government seemingly determined to roll back the progress disabled people have made. The five years since 2010 were bad enough - now things can only get worse.

So, partly to make myself feel a bit better but mainly because it’s so important not to lose what we’ve already learnt, I’m going to write a series of blogposts based on some of the stuff which I’ve found it impossible to throw out.

This first one links language and the current assault on human rights. 

In 1995, an organisation called Community Partners, based in Guildford, published this in ‘The Advocate’ Newsletter.
 You and I

I am a ‘resident’
You just live at your place

I live with seven others, a couple of whom I don’t really like
You’ve just got a new place with a couple of friends because you didn’t like the people you were sharing with

I’d like to leave my room in a mess but staff tell me I’m learning something when I clean it up very day
You tell me your room is a disaster area

I am aggressive
You are assertive

I have behaviour problems
You are rude

I’m non-compliant
You don’t like being told what to do

I’m on a special diet because I am 5 pounds over my ideal body weight
Your doctor gave up telling you

When I ask you out for dinner, it is an outing
When you ask someone one - it is a date

I want to talk with the nice looking person behind us at the grocery store.  I was told it was inappropriate to talk to strangers
You met your husband at the cheese counter.  He couldn’t find the brie

I think some of the people who are paid to work with me are my only friends
You have lots of friends; none of them are paid

I don’t have anything to say who I am
You’ve got your driving licence

My Case Manager, Psychologist, Occupational Therapist and House Staff set goals with me for the next year
You haven’t decided what you want out of life

I don’t know how many people have read the progress notes people write about me.  I don’t even know what is in there
You didn’t speak to your best friend for a month after he read your journal.

This juxtaposition between ‘ordinary life’ and that of people identified as ‘service users’ is all too familiar to disabled people and their families.  Mark Neary is only one of many who has drawn attention to it in more recent years but we seem to be banging our collective heads against a brick wall as far as ‘services’ are concerned.  

The issue of language used about people who need support in their daily lives is not a trivial one.  Such language creates a separate group of ‘service users’ and this separation undermines our common humanity.  

It’s the failure to recognise common humanity which lies at the heart of the whole continuum of the way disabled people are so often treated - it starts with dehumanising language and ends with the worst kind of ‘institutionalised’ abuse such as that which took place at Winterbourne View or Orchid View.    

If you see someone as fundamentally different to you then you are unlikely to treat them as you would wish to be treated yourself. A failure to apply this golden rule of ‘Do as you would be done by' is evident in so many  of the more or less routine ways in which people are dehumanised. To take just a few examples:

Do you think that the Chief Executive of Southern Health was applying the golden rule when she wrote about the Root Cause Analysis carried out, to the grieving mother of a young man who died while in the care of her organisation?

Do you think that those responsible for allocating resources put themselves in the position of young people with learning disabilities when they make decisions leading to so many being incarcerated and mistreated for years in what are supposed to be ‘short-term placements’? 

Do you think the politicians responsible for closing down the Independent Living Fund put themselves in the position of people like Mary Laver whose whole way of life is threatened as a result?

It’s important to make links between the ongoing struggle amongst disabled people and their allies for recognition of our common humanity and the current onslaught on human rights generally, in the context of the Conservative Party’s manifesto commitment to “scrap the Human Rights Act”.

The underlying principle of human rights is that they are universal - by definition they apply to us all by virtue of our common humanity. A failure to acknowledge and uphold an individual's or a group of people’s human rights is a denial of their humanity.  For disabled people, this denial often happens implicitly - with assumptions that a particular right is not ‘relevant’ or that denial is in someone’s ‘best interests’. 

The website,, is running 50 stories about the real-life application of human rights law and several directly concern disabled people.   

For example, disabled people’s right to a private and family life was upheld when the High Court ruled in 2003 that a local authority had breached a disabled woman’s right to a private and family life by failing to correct a situation where she was unable to use the bathroom in her house because it was inaccessible to her.  

Another example is from 2014 when the Supreme Court ruled that  “Human rights have a universal character and physical liberty is the same for everyone, regardless of their disabilities”. Therefore, as put it, “Thanks to the Supreme Court in this case, all disabled adults in care are now included in the word ‘human’ of human rights and entitled to the same dignity and status as the rest of us”. 

The fight to prevent the government repealing the Human Rights Act is a fight on behalf of us all.  At the same time, we must remember that, as Eleanor Roosevelt said: human rights begin “in the small places, close to home - so close and so small that they cannot be seen on any maps of the world”.  Human rights, and their abuse, begin in the detail individuals’ lives.  They begin in the way we relate to each other, the language we use: “Unless these rights have meaning there, they have little meaning anywhere”.

Wednesday, 1 April 2015

A housing policy question for all politicians

One of the depressing things about having been politically active during the 1980s is that so many of the things we warned about happening, as a consequence of Tory policy then, have come to pass. 

Like many other policy areas, 1979 was a watershed in the landscape of housing opportunities in this country.  From 1918 to 1980, owner occupation and council housing grew while private renting gradually declined.  By 1980, a third of housing was rented from local authorities, just over half was in owner occupation while only 11% was privately rented.

By 2012, the private rented sector had increased to 17%,  while 10% was rented from housing associations and council owned housing had fallen to 8% of the total housing stock. 

It was the Right to Buy, and associated policies, which were responsible for this fundamental change in the pattern of housing tenure. Councils were always able to sell their housing to existing tenants but it was voluntary, and sales required the approval of central government.  However, the Conservative Party manifesto of 1979 manifesto made the sale of council houses a key part of the election campaign, offering generous discounts and no restrictions on resale. 

Conservative housing policy was also aimed at reviving the private rented sector by introducing shorthold tenancies, in order to make housing a more profitable investment for private landlords.

These polices were part and parcel of a wider agenda on the welfare state, which started in 1979 and continues to play out today. As two academics at Bristol University wrote in the early 1980s: “The reduction in the size of the public housing sector has become part of a general strategy to restructure and reduce state provision across the whole range of welfare services, from education, and health, to refuse collection”. (1)

Indeed this was the first, but by no means the last, government policy which promoted ‘subsidised individualism and residualised collectivism”. (2)

Thirty-five years after the Conservative's 1980 Housing Act we are facing the results of this fundamental shift in housing policy. The residualisation of council housing is reflected not only in the reduction in the size of the tenure but also in the increasing proportion of council tenants in receipt of social security benefits - partly because the better off ones bought and partly because of the rise in rents. 

Housing costs have increased across all tenures: amongst owner occupiers and private renters because of the continuing shortage of supply; amongst housing association and council tenants because of changes in housing finance.

There has been a fundamental shift of expenditure from capital investment in housing (building new homes) to revenue expenditure in the form of housing benefit (propping up higher rents in social housing and subsidising the profits of private landlords).  The latest manifestation of this shift is the introduction of ‘affordable rents’ for new housing association and council tenancies, set at a maximum of 80% of market rents and acknowledged by government as costing more in the long term because of the resulting increase in housing benefit expenditure.

The shift from capital investment to subsidising high rents has accelerated in the last five years, reflected in the dramatic reduction in the numbers of social housing properties built: in 2009-10, there was a total of 39,492 housing starts of properties to be let at social rent levels; by 2013-14, this had fallen to 3,961.  Even including housing to be let at ‘affordable rent’ levels and ‘affordable’ home ownership there had been a 22% reduction over this period.

The Coalition government has decried the increase in housing benefit, focussing on the ‘failure’ of individuals to find a job or work hard enough to get themselves ‘off benefits’.  In reality, it is government policy which has created the need to subsidise rents, but the focus on individuals suits the Conservative Party’s desire to bring about a residualisation of collective provision (i.e. the welfare state) until it only caters for a small stigmatised minority.

Not only have individuals suffered as a result of the shift in housing policy since 1979, but local authorities (and indeed government) now have less influence over whether housing markets will meet housing need. An erosion of local authority influence over rent levels (because of changes in housing finance) and over local housing markets generally makes it harder to, for example, ensure sufficient affordable housing to support local employment, or to prevent second home owners pushing up house prices.

The tragedy is that there seems to be very little resistance to the ideology which underpins these changes in housing policy and in particular very few people are defending the idea of secure, affordable, publicly owned housing. And now the Conservatives have floated the idea of extending the Right to Buy to housing association tenants, although they have been warned that this would severely threaten the financial viability of the sector. 

There is general agreement that the fundamental cause of housing problems in this country is the lack of supply, so Tory and Labour vie with each other to promise to tackle this by increasing house building.  The main sources of increased supply are, however, assumed to be in the owner occupied sector where government action is primarily limited to demand-side policies whose main impact is likely to be an increase in house prices.  At the same time the rent levels for any new social housing will not be set, as they previously were, by taking into account what local wage levels could sustain.  Instead, rents will be set in relation to market rents which, in high rent areas (but particularly London and the South East) will belie their Orwellian label of ‘affordable rents’ for many many people. 

The advantages of social housing used to be that you paid a rent which was affordable in the context of local wage levels, you got security of tenure, and you didn’t have to worry about the costs of repairs and maintenance.  In order to undermine this important option, Conservative policies since 1979 have resulted in an increase in rents, undermined security of tenure, and promoted individual self-interest to remove properties from future generations of households in housing need.

Buried in the Coalition government’s Impact Assessment on the introduction of ‘affordable rents’ is the statement: “ An increase in social supply reduces the numbers in housing need by three times as much as a rise in private supply of the same amount, with these housing services better targeted at those in need.”

So, a key question for all politicians during the rest of this general election campaign is: An increase in the supply of social housing is the most effective way of reducing the numbers in housing need, so will you invest in secure, affordable, publicly owned housing?

  1. Ray Forrest and Alan Murie, 1984. Right to Buy? Issues of Need, Equity and Polarisation in the Sale of Council Houses, University of Bristol, p.59.
  2. Ditto, p. 60.

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.