ASSESSING AND ENHANCING THE QUALITY OF LIFE OF PEOPLE WITH INTELLECTUAL DISABILITIES

Mitchel Fleming, Clinical Psychologist, Daughters of Charity Services, reviews two recent articles which examine quality of life issues.

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Prof David Felce from the Welsh Centre for Learning Disabilities Applied Research Unit, examines the changing pattern of residential services in Britain and offers suggestions on ways of enhancing the quality of life of people receiving residential support. The number of people living in large hospitals in England and Wales has fallen by over 70 per cent in the last 25 years. Most of those who left hospital moved to community-based accommodation. Research findings show that this move has resulted in people with learning disabilities having a much better quality of life. Typically, people who move from hospital to community accommodation enjoy better physical surroundings, have more personal possessions, have increased competence, are more engaged in domestic activities and use community facilities more. However, there remains a significant gap between what people with learning disabilities experience and what advocates of the ‘an ordinary life’ movement had hoped would be achieved. Too often small community group homes can resemble mini-institutions, have inflexible staff shift patterns, group residents bureaucratically, and fail to support people’s personal relationships and desire for self-determination.

Supported Living

To overcome these shortcomings, Felce advocates the adoption of ‘Supported Living’ principles as a way of ensuring that the full range of desirable reform hoped for by deinstitutionalisation can be achieved. Supported living principles include common entitlements or expectations which most of us take for granted. For example, adults should own their homes, or at least have protected tenancies. They should be able to choose with whom they live and where they live and, in doing so, take account of the people and places they want to be near. Also, adults should be able to expect to live in their home as they choose. These principles may seem ambitious for people who are far from independent; however, it is important that their vulnerability should be recognised in the quality of support and protection they receive, not in a reduced aspiration for a typical quality of life.

Active Support

To avoid many of the undesirable features of institutional care gaining a foothold in community-based services—such as people with learning difficulties being unoccupied for substantial amounts of time and being socially isolated—attention has to be given to several aspects of service delivery. These include the technical sophistication of services, their managerial leadership, working methods and staff training so as to ensure that people have opportunities to live a more fulfilling lifestyle. This will involve planning activities and training staff to actively support residents, especially those with more severe disabilities, to engage in constructive activities. Actively supporting people to engage in constructive activities is not an intuitive skill and requires the adoption of effective working methods, backed by good management and staff training.

Assessing Life Satisfaction

Dr Della Money and Graham Collins, from the Nottinghamshire Health Trust, describe a framework for assessing life satisfaction for people with intellectual disabilities. The system is designed to be applicable to all service users, no matter how disabled they are. It is, they argue, a practical system which allows staff to gather routine information around quality of care. The information gathered can be used for the benefit of both the individual and the group to enhance the quality of the service.

Life satisfaction is measured using O’Brien’s (1987) Five Service Accomplishments (i.e., community presence, choice, competence, respect and relationships). One of three survey methods is used to obtain information. The first method is used for verbally-able people. Individuals are given the opportunity to express their wishes and opinions about the services they receive. The second method is for people with limited language and communication skills and allows them to express their views by means of pictures and symbols, eg happy and unhappy faces. The last method is for people with no formal language and communication skills. It relies on direct observations and ratings by others who know the person well. The authors accept that relying on others as a source of information for a persons life satisfaction is not ideal, but they believe it is better than nothing. To minimise subjectivity ratings are always obtained from at least two people.

The life satisfaction information obtained can then be used either to help meet individual needs and/or to draw up a profile for each residential/day unit to give an indication of the global satisfaction or dissatisfaction. Money and Collins state that their system for assessing life satisfaction can provide a broad overview of a service based on the experiences and opinions of service users. However, they do not recommend that the system be used to compare units or as a research tool.

Both of these articles place the rights and opinions of service-users at the core of service innovation and evaluation and provide useful ideas on ways by which service quality can be enhanced.

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