Occupations and means of living in adults with cerebral palsy or meningomyelocele during two decades in Sweden

Abstract

The aim of this study was to focus on education, work and means of living during two decades in two groups of people with cerebral palsy (CP) or meningomyelocele (MMC) within the framework of social policies. Two groups of patients at an adult habilitation unit were interviewed by telephone – Group A (n=55) in 1983 and again in 1997 (n=42), and Group B (n=30) in 1997. All but one subject in Group B had attended upper secondary school (1997), compared with 61% in Group A (1983). In 1983, a majority of Group A worked or studied. In 1997, most of them still worked or studied, compared with only two thirds of the 1997 Group B, but both the A and B groups worked part-time significantly more often in 1997 compared with Group A in 1983. Of those who worked, about one third of Group A and more than half of Group B had wage subsidies from the state in both 1983 and 1997. The majority of Group A thought that over the period from 1983–97 the labour market had generally become harder, which had affected people with disabilities in general in a negative way. Almost all in Group A in 1983 and Group B in 1997 were content with their work tasks and work environment, but one third of Group A had problems within these areas in 1997. Significantly more people had disability pensions, of varying amounts, in 1997 (A and B groups) than in Group A 1983. In conclusion, it seems as if social policies have managed to integrate these people into the regular educational systems and support them financially, but have failed to stimulate the labour market to offer them work, especially regular and permanent work without wage subsides.

Keywords:

• occupations
• means of living
• working conditions
• disability history
• marginalization
• cerebral palsy
• non-experimental clinical study
• meningomyelocele

Acknowledgements

Many thanks to Lena Ericson, statistical expert at The Swedish Social Insurance Administration in Stockholm and Anna Lindam at the Epidemiological Centre at the Swedish National Board of Health and Welfare. Both helped us find national statistics on people with disability pensions in the two groups of diagnoses.

We are grateful to Susanne Bähr, medical social worker, who conducted the interviews in 1997. This study is in part funded by The Handicap Committée of Västra Götaland