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.