Feature

Living is about more than bed and breakfast

Being able to do what other people do after they have got up is what independent living is all about, Frances Hasler explains

For most people, their day starts properly after they have got up, washed, dressed and breakfasted. For some of us, who need the assistance of another person in order to get this far, life can become limited to these prosaic activities, our lives defined by our need for assistance. The independent living movement has developed as more and more disabled people have challenged the assumption that support should be limited to ‘bed and breakfast’ activities and demanded that they are enabled to do what other people do after they have got up — be it work, study, parenting, socialising, volunteering or any other activity.

In the UK, the roots of the movement are in the 1970s, when disabled people in residential care began to query why so much money was being spent on keeping them segregated and dependent. They argued that if they had control over the money themselves, they could arrange the support they needed.

A small group in a home in Hampshire banded together to put the theory into practice. They found suitable housing locally, then persuaded the local authorities (who were funding their residential placements) to let them have the equivalent of the care fees in cash. They then used the money to hire workers — personal assistants — who could deliver the help they needed.

But they did not stop there. They published booklets, explaining how they had achieved this, and to share their experience with other disabled people. This was the birth of the Hampshire Centre for Independent Living. Similar developments were happening in other parts of Britain and, as people met to share ideas, the UK independent living movement was established.

Spreading the option of direct payments nationally was hampered by a technical problem. Payments in lieu of services were unlawful (except in Scotland). Guidance to the 1992 NHS and Community Care Act reiterated this. Supportive local authorities utilised ‘third party’ schemes, arranging with a voluntary organisation to broker the cash to the disabled person, as a way of getting around the legal block. But only a change in the law could ensure direct payments were available across the country.

Disabled people and our allies successfully campaigned to change the law and, in April 1997, the Community Care (Direct Payments) Act came into force. The Act allows local authorities to offer cash payments instead of community care services to disabled people who are both willing and able to take on this responsibility. The payments enable disabled people to employ workers of their choice, or perhaps to buy other things such as equipment or transport.

The Act applies to people with any sort of disability — physical impairment, learning difficulty, HIV & AIDS, mental health difficulties — but it does have one serious limitation. It is restricted to people under 65. This age discrimination was supported by some of the local government organisations, which feared overwhelming demand if their largest community care client group, elderly people, were allowed direct payments. This exclusion will be reviewed in 1998.

The Direct Payments Act represents a significant step forward in official recognition of the aspirations of the independent living movement. The Department of Health has funded a project run by disabled people to help both local authorities and disabled people’s organisations to implement the Act. It is the National Centre for Independent Living (NCIL.) The pioneers of direct payments in the 1980s were keen to spread their methods to other disabled people. This grassroots skill sharing is an integral part of the independent living movement. NCIL promotes this tradition, urging that all authorities which are implementing direct payments should ensure that a suitable support scheme or Centre for Independent Living is funded in their locality, to offer practical guidance and moral support.

Recent research confirmed that the majority of local authorities in the UK do intend to implement the Act.¹ But it also revealed stark regional variations in the availability of payments. The authorities which have provided direct or indirect (third party) schemes are much more numerous in the southern half of England than any other part of the UK. The pattern of authorities intending to implement the Act mirrors this: in northern regions of England only half the authorities have made plans to implement direct payments; in most of the south 100 per cent are doing so. Most authorities in Wales have yet to decide on implementation. In Northern Ireland, a decision was made to implement the Act across the province. Scotland, with its longer experience of making payments, is also implementing the Act widely.

The Community Care (Direct Payments) Act is a good move. But as its name implies, it is firmly rooted in existing community care arrangements, and thus affected by all the limitations of community care services. Two aspects of this are causing particular concern: the first is ‘cost ceilings’ on individual community care packages; the other is charging for services.

Many local authorities operate a cost ceiling as a way of controlling their community care budget. In some this is a guideline to care managers, in others it is a straitjacket. In authorities operating a rigid cost ceiling, people whose care needs exceed a set amount are directed to residential care. The money to meet their needs over and above this sum becomes the ‘price of freedom’. People in residential care lead ‘unnecessarily isolated and restricted lives’. They are unable to take paid work and, in all but a few cases, are unable to contribute to their local communities.² Within the disability movement, campaigners have been arguing that it is both inefficient and inhumane to force people into residential care because of lack of funds for community-based support. The resulting waste of human potential is a poor use of national resources, as well as personally damaging to the people concerned.

This problem can be helped or hindered by local authority relationships with the health service. The assistance required in many high-cost packages includes an element of health-related care — bladder, bowel and skin maintenance, ventilator care, or injections for example. Direct payments cannot be given in lieu of health services, but they can be used if the NHS is making an agreed contribution to the care package arranged by social services. Not all areas have these arrangements in place, and NCIL knows of people who have become stuck in institutional care because local statutory authorities cannot agree on funding for a community-based package.

Charging for community care services also affects people who are living independently. Apart from its obvious tendency to impoverish, it sets up unnecessary dependency. Many charging regimes assume that all income over a certain level (linked to income support amounts) is available to pay for services. This can lead to someone spending most of their wages on personal assistance. A survey of payments users in one county showed that almost all of those with jobs were facing giving up work if the proposed charging regime went ahead.

The independent living movement is an international one. People in other parts of the world were developing ideas on personal assistance at the same time as people in Britain. Networks with other European countries are particularly strong. The issue of who pays for long-term community-based support for disabled people is a crucial one for the independent living movement and NCIL is hosting a European seminar in May 1988 which will discuss this question. The seminar will also look at how to make direct payments a reality for all disabled people who want them, including people with learning difficulties and people who are survivors of the mental health system.

There is a need for discussion on the best ways of extending direct payments; most payments users to date have a physical impairment and a network of peer support to include people from other impairment groups has not yet been developed. In addition, some of the current models of independent living may not be appropriate for everybody. The definitions in the box emphasise choice and control. This has often been expressed through a ‘hire and fire’ model, giving disabled people all the control (and all the responsibility) of being an employer. Other models might work better. It may be, for example, that some people prefer to share control of their workers, so that at times when they are acutely unwell they can devolve some of the responsibility, while still retaining choice.

There are issues to be addressed with and on behalf of people who have cognitive or communication impairments. People can have as much help as they need in managing a direct payment but this must fall short of passing control to another person. (Direct payments are about increasing independence, not simply replacing one sort of dependence with another.) Developing advocacy and support arrangements to serve the varied needs of different disabled people will take time and imagination and a lot of commitment.

NCIL does not have all the answers to all the questions on independent living. But we are convinced that as long as disabled people are driving the agenda, sharing and developing ideas, answers can and will be found.