17.June 2003, Dóra S. Bjarnason1 Social disability policy in Iceland and its impact on the quality of life opportunities for young disabled adults with significant needs

17.June 2003, Dóra S. Bjarnason2 Introduction How does Icelandic social disability policy impact the material and existential quality of life, available to young disabled people? Social disability policy The disability legislation Us and Them The fit between the legual ends and the means A room of your own Three lives- three models Conclusion

17.June 2003, Dóra S. Bjarnason3 - Quality of life options -Social policy (Titmuss 1974, Ólafsson 1999) Welfare expenditure in 2000 The total expenditure to welfare as a percentage of GDP ranged from approx. 25 – 29% in Denmark, Finland and Norway, in Sweden it was over 32%, but barely 20 % in Iceland and The total expenditure for disability pensions and services as a percentage of GDP was around 4% in Finland, Norway and Sweden, 3,3% in Denmark, and 2% in Iceland. (National Statistics Bureau Home page 2003) Social disability policy in Iceland

17.June 2003, Dóra S. Bjarnason4 The Disability Legislation 1979 Law on Support for the Mentally Retarded 1992 Law on the Affairs of the Disabled The aim of this law is to secure disabled people equal rights and a comparable quality of life to that of other citizens, and to create for them opportunities to lead a normal life... (paragraph 1) The person has the right to services under this law who is disabled physically or mentally, and needs special services and supports for that reason. This includes people with intellectual disability, mental illness, mobility disability, visual- and hearing disability. Further, disability can also be the result of chronic illness or accidents. (paragraph 2 )

17.June 2003, Dóra S. Bjarnason5 Us and Them: Who are the ”other citizens” ? -Other citizens -Typical citizens - Disabled citizens adulthood young adulthood lifestyle and life choces

17.June 2003, Dóra S. Bjarnason6 The fit between the end and the means Disabled people shall be provided with opportunities to live in homes in accordance to their needs and wishes as far as possible…” (paragraph 19, law 59/1992) Table 1. Existential and material criteria for opportunities to lead a life comparable to other citizens A Economic resources Material Existential B Opportunity for being with others, autonomy, choices C Personal space / private life

17.June 2003, Dóra S. Bjarnason7 An informal survey In 2003, there were 82 group homes in Iceland with 426 inhabitants. Of those 12,4% had private space (their bedrooms) that was less than 10 m2. 16% had a private bathroom. 12,6% had a small flat (Bjarnason and Sigurðsson 2003) On the waitinglist were 170 addults years old. A room of your own Maximum of 6 people can live in a group home, personal space Should not be less than 10 square meters for each inhabitant, and in new group homes bathrooms should as “far as possible” be part of an individuals’ personal space. (Statutary regulations no )

17.June 2003, Dóra S. Bjarnason8 Two stories – two lives ThorBjörg

17.June 2003, Dóra S. Bjarnason9 Structure: The Board The Personal Agent The Daily Helpers Accountabillity A Home of my own – Benedikt

17.June 2003, Dóra S. Bjarnason10 Conclusion Little has changed in Icelandic disability social policy since the first legislation Bureaucratic structures, serve to secure disabled peoples’ lives as dependents. For many, to be labeled disabled involves living in poverty, and sometimes in a segregated “world”. Creative approaches to choice lifestyles and quality life options, are possible. Their very existence in the service flora brings certain optimism. What needs to change in Icelandic social disability policy? The policy ends are clear and rellevant, but the means to those ends are unclear, undersupplied and over bureaucratized. Individually tailored and flexible supports are of utmost importance if the policy ends are to be taken seriously.