A COMPARISON OF SERVICE PROVISION FOR ADULTS WITH INTELLECTUAL DISABILITY IN FIVE EUROPEAN COUNTRIES

John Hillery summarises the report of a study undertaken by the MEROPE Consortium. Dr John Hillery, Clinical Psychiatrist, Stewart's Hospital Dublin 20

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Introduction

The MEROPE Consortium was funded by the EU Biomed Programme (BMH4-98-3760) to report on service provision for people with dual diagnosis (intellectual disability and mental health problems). There is a dearth of systematic information available as regards services for people with dual diagnosis in Europe. The aims of this project are:

  • to systematically collect and collate information,
  • to assess the usefulness of a validated assessment tool (the PASS-ADD),
  • to assess methods for training frontline staff in recognition of mental health problems in people with intellectual disability, and
  • to plan a European database related to dual diagnosis.

The Consortium has representatives from five European countries–Ireland, the United Kingdom, Spain, Greece and Austria. The members of the group are clinicians who work with people with dual diagnosis. The first stage of the project resulted in a summary report on the history and current status of mental health services for people with intellectual disability in their countries. This article outlines the main points of a paper on the results of the summary report published in the Journal of Intellectual Disability Research (Bouras et al. 2000).

Context

Although it differs in details from country to country, the historical background has commonalities: early neglect, the involvement of psychiatric institutions and eventual intervention by philanthropic groups or government to improve services. All countries have adopted the tenets of normalisation and integration. The implementation of such philosophies differs in evolution and extent between the five countries. The horrific impact of National Socialism on people with intellectual disability in Austria during the 1930s and 1940s and the more recent distress concerning conditions in the island-based institution of Leros in Greece are well known. The resulting interventions to ensure that such actions or environments are not repeated are less well known. In Austria, successful efforts have been made since World War II to ensure a high quality of life for people with intellectual disability. In Greece the intervention of the European Parliament, coinciding with national legislation setting up a National Health Service, continues to have a positive impact on the lives of people with intellectual disability. Institutional settings persist, but newer services propagating a community-based lifestyle are evolving. In the UK, de-institutionalisation initiated by the 1971 White Paper, Better services for the mentally handicapped (DHSS 1971), continues to this day and is promoted both by research and advocates. De-institutionalisation in Spain has followed a similar time-course, although legislative decentralisation has led to different models of service delivery from region to region. In Ireland the ongoing cooperation between advocates and voluntary bodies and the policies enunciated in documents such as Needs and abilities (Review Group on Mental Handicap Services 1991) have promoted normalisation principles, although institutional care still gives cause for concern in certain areas.

Epidemiology

The National Intellectual Disability Database gives a prevalence of intellectual disability of 0-76% in the Republic of Ireland. The UK figure is 1%; Greece, 1.5%; Austria, 0-58%; and Spain, 0-4%.

Current practices and policy

The five countries represented in the MEROPE Consortium have national policies that support de-institutionalisation to varying degrees. The specific needs of people with dual diagnosis have not been addressed in policy, although proposals have been made in the UK (e.g. The Mansell Report (London, HMSO, 1993) and in Ireland (Discussion document on the mental health needs of people with mental handicap (Dublin, 1996)). Legislation relating to the general rights and needs of people with intellectual disability exists to varying degrees in each country. In Austria provinces enact laws based on a national framework. A federal law passed in 1990 put an end to the admission to psychiatric hospitals of people without active mental health problems. In Ireland the document Planning for the future proposed the same policy. It has been implemented to varying degrees–advantageous and detrimental (the latter being a lack of in-patient beds for people with intellectual disabilities who have active mental illness). In Spain the Law for Social Integration of the Handicapped (1982) sets out the rights of people with handicap of any sort. The law deals with supports for integration, environmental needs and guarantees of quality of life.

As stated already, all partner countries recognise the importance of de-institutionalisation and community integration, and they have implemented this with varying degrees of service development. In Austria people with intellectual disability are, in the main, supported and live with their families, although there is a remaining problem of ongoing inertia toward people living in psychiatric institutions. In the UK, community residential services grew by 100% between 1876 and 1984. There is a variation nationally in types of residential services and the level of residential provision is lower than need, but the size of residential settings has been generally reduced. In Greece there has been a substantial reduction in institutional beds, but there has been less development of community settings than in other European countries. In Spain public and private service providers cater for people with intellectual disability and de-institutionalisation has reduced numbers in institutional care by at least a third (correct figures are difficult to assess, owing to the regionalisation of administration). In Ireland the report Services to persons with a mental handicap: An assessment of need, 1997-2001 showed that though service provision is improving, an uncomfortably large number of people (7722) lack a service or are inappropriately placed.

Conclusion

All countries in the MEROPE study are pursuing planning for people with intellectual disability based on philosophies of normalisation and integration. The practical implementation of these philosophies differs between and within countries. The degree to which legislative provision backs the implementation of these philosophies also differs from country to country. Ireland has not given legislative backing to such policies, although policy documents suggest an intention to follow through on them. The mental health needs of people with intellectual disability are catered for in different ways, the UK and Ireland probably taking a lead, although service gaps remain.