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?”.
