Deinstitutionalization

The policy initiatives in the United States during the 1960s and 1970s produced profound and far-reaching changes offering the integration of people with mental retardation into mainstream community life.

The number of people with mental retardation in public institutions and state psychiatric facilities was drastically decreased, falling by 23 per cent between 1967 and 1976 from 193 183 to 148 752.(3) However, at the same time, there were in addition '18 226 people with a primary diagnosis of mental retardation' living in state mental hospitals.(3) The picture changed more dramatically over the next 20 years. By 1996 the American population of people with mental retardation in institutions fell by 46 per cent.

This change was paralleled in the United Kingdom. The movement away from institutions began in the 1950s with government support, including the White Paper Better Services for the Mentally Handicapped (1971), the Mental Health Act 1983, the Special Education Amendment 1984, and the Disabled Persons Act 1987.

Between 1980 and 1993 the hospital population of people with mental retardation in the United Kingdom was reduced by over 26 000. By the beginning of the twenty-first century at least 10 000 more people will move. Data from the 1991 census show a substantial regional and national variation. (4) The overall level of residential provision is significantly lower than the Department of Health target of 1.55 places per 1000 adults. The process has, however, accelerated in recent years and residential places continue to be developed by statutory and private sector organizations. The size of residential settings has been reduced considerably and the range of vocational programmes and daytime activities diversified. Mainstream education has become available to more children with mental retardation, respite care is largely community based, and the availability of domiciliary support has increased significantly.

An overview of the international changes in the use of institutional care from 1981 to 1991 showed great diversity, (5) ranging from 3.1 to 9.7 in 10 000 among four Scandinavian countries, from 4.7 to 20.9 in 10 000 among eight countries in the European Community, from 6.1 to 13.8 in 10 000 among three Eastern European countries, and 4.5 in 10 000 in the United States, based on 1991 to 1993 figures. Rates of annual decrease in the use of institutions were from -1.6 to -5.9 per cent in Scandinavia, from +0.4 to -5.0 per cent in the European Community, +0.6 per cent in Eastern Europe, and -3.3 per cent in the United States.

The organization of services for people with mental retardation in the United Kingdom has been influenced by the implementation of governmental policy initiatives. The National Health Service (NHS) and Community Care Act in 1990 separated purchasing from provision of services, enhanced the role of local authorities and the independent (private) sector, and introduced new procedures for the assessment, care management, and monitoring of services. At the time of writing, further changes are pending following the White Paper The New NHS: Modern, Dependable published in 1997 and the Green Paper Our Healthier Nation published in 1998. Both highlight the need to improve health and reduce inequalities. They emphasize improving the quality and effectiveness of services, with longer term contracts and service agreements organized around particular care groups or disorders. Commissioning of services will gradually be taken over by primary care groups. There will be new statutory duties of the health authority to work in partnership with local authorities and to support joint working. The implications of these changes are as yet unclear. These papers set a direction for services, but are not prescriptive. It is proposed that responses to them will be dependent on local considerations, taking into account the framework they have set.

Significant improvements in the health care of people with mental retardation have been made, particularly in primary health services. Enhanced management of epilepsy, better diagnosis and treatment of medical disorders, and more effective understanding of motor and sensory impairments have contributed to the successful resettlement of many people in community schemes. In addition, the provision of more appropriate models of social care have substantially improved the quality of life of people with mental retardation enabling staff, carers, and families to be more involved and more effective.

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