1. A home and an ordinary life with support Dóra S. Bjarnason dsb@hi.is vefir.hi.is/dsb

2. Quality life with support 2Dóra S. Bjarnason

3. 3 Adulthood – a social construct The status of adulthood is most often correctly assumes as part of a tacit exchange of complex informationthrough the interactive elements of language, social context, and cognitive interpretation of rellevant information about age (e.g. appearance, voice, size,and so forth Bates 1976 (in Ferguson and Ferguson, 1996:52)

4. Dóra S. Bjarnason4 Three dimensions of adulthood Personal dimension Cultural dimension Family dimension From: Ferguson, D. L. and Ferguson P. M. 1996 “Communicating Adulthood”. In Topics of Language Disorders 16,3:52-67

5. Social capital 5Dóra S. Bjarnason

6. 1998 The proposal Extract from a proposal to the Minister of Social Affaires, and the municipal authorities in Reykjavík. This proposal is based on the service needs of young disabled people who need services 24/7, and are enabled to carry out the role and status of a fully fledged adult within society. The service is adapted to the individual, his or her personality, talents, interests and needs. The young disabled person is the employer, and hires his/her own assistants, with the help of his or her personal ombudsman. 6Dóra S. Bjarnason

7. Goals (1998) The service should enable disabled individuals to: live in their own homes, alone or with a person or persons they themselves have chosen; create a home according to his or her own taste, age and gender; be employed in regular work on the labour market, and receive necessary and sufficient support to do so; part take in a variety of leisure activities in accordance with his/her interests and talents; go on holiday trips with family or friends like their peers; utilise appropriate generic services like other citizens; add new friends and acquaintances and cultivate older friendships; cultivate ordinary family relationships; have opportunities and relevant support to enact roles, status, responsibilities and obligations associated with adulthood; enjoy personal safety, rehabilitation and health services; Enjoy appropriate respectful and flexible support. 7Dóra S. Bjarnason

8. Egmont hojskolen 2000 School trip tol Prague 8Dóra S. Bjarnason

9. 1998-2001 I negotiated with the authorities 1998 – 1999 and the project was accepted as an experiment. Benedikt went to Denmark to study at the Egmont Höjskolen for one year. We hired his ombudsman 2000 Benedikt bought a flat in Reykjavík 2001 – Itinnery – Location – Finance – Common problems Benedikt moved in summer 2001 Staff and support group 9Dóra S. Bjarnason

10. Ombudsman Dóra S. Bjarnason10 The ombudsman is an employee of Benedikt, and his spokesman… The ombudsman must pledge not to quit unless he has found and trained his replacement. The ombudsman is not a director of a group home; The ombudsman is Benedikt’s representative vis a vi his staff, family and support group The ombudsman hires and helps train new staff, ensures that no gaps occur in the support. He carries out, on Benedikt’s behalf, paperwork, payments of wages, job search, and supports the social context and interactions in Benedikt’s home, securing that his personal life and rights are upheld at all times. The ombudsman is responsible to Benedikt’s support group and to the steward over his property (ráðsmaður eigna hans)… The support group and the steward over Benedikt’s property, can jointly fire the ombudsman, if he violates Benedikts rights or proves unable to carry out his job.

11. 2001 11Dóra S. Bjarnason

12. 12Dóra S. Bjarnason

13. 13Dóra S. Bjarnason

14. Dignity of risk 14Dóra S. Bjarnason

15. What went well? What needs improvement? What mistakes did we make? What proved difficult? What was unexpected? Why? 15Dóra S. Bjarnason

16. Lessons Hindrances relate to: 1.The staff 2.The home is also a workplace 3.Flow of information 4.Routines 5.Mother should not interfere too much... 6.Keeping and renewing Benedikt’s social capital 7.Finance Connections/solutions relate to: 1.The staff 2.The ombudsman 3.Flexibility 4.Flow of information 5.Focus on solutions 6.Trust 7.Finance 16Dóra S. Bjarnason

17. 17 New addition to social capital

18. Dóra S. Bjarnason18 Social capital can be built, but not once and for all – We need to be aware of the importance engaging with different forms of social capital – bonding, bridging and linking. The adult roles and status of many disabled people, demands support should at all times be re-evaluated in light of their age, gender, interests and needs, rights and obligations. Inter-dependant adulthood. Almost everyone can live in his or her own home and live a regular life, with appropriate support. No one solution suits everybody. “The proof of the pudding is in the eating”. Here the ingredients are based on knowledge, trust, cooperation, respect and humour. Conclusion

19. Dóra S. Bjarnason19