1. Social policy and social capita: Parents and Exceptionality l. Experiences of having a disabled child in Icelandic families 1974-2007 Professor Dóra S. Bjarnason University of Iceland School of Education Faculty of Education Studies dsb@hi.is http://wp.khi.is/dora 1DSE conference Ghent 28th-30th May

2. 2 Iceland: Small population 319.000, large island, high standard of living, Nordic type welfare society, economic vulnerability, economic crash in 2008

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4. 4 The study 2005/2006-2008: The focus of the study is on parents perspectives of informal and formal support due to a childs disability. The disabled children are born between 1974-2007. 1974-2008 is the time when the legal framework and relevant service systems were put in place or adapted to accomodate disabled people and their families. This is a time of great change both in the Icelandic society and in its welfare: social, educational, health and disability policies. – The crash - Now the welfare policy is ?

5. DSE conference Ghent 28th-30th May5 The goals of the study are: – Describe and explore the experience of parents of disabled children and youth giving birth to and bringing up a disabled child – and their experience of different formal and informal supports to the child and the family. – Compare the experiences of parents of disabled children born over a 35 year period - a period of significant changes in law and services aimed at families and disabled children. – Explore whether and in what way there is a connection between support and decisions and choices that parents make on behalf of their disabled children (e.g. regarding their placement in segregated or inclusive settings). – Explore positive and negative implications of increased specialisation and increases in formal services directed towards disabled children and their families, and examine how specialised and generic supports can empower disabled people and their families.

6. DSE conference Ghent 28th-30th May6 Questions How does Icelandic social disability policy impact the quality of life available to families with disabled children over time? What formal and informal supports were the parents able to engage with over time, how has that changed the social construction of disability in the families, and why ?

7. DSE conference Ghent 28th-30th May7 Theoretical perspectives Social constructionism I am interested in the meaning making in the face of change. Social capital theories (Bourdieu, Coleman, Putnam, Allan) Poststructuralism (Foucault 1975, Allan 2008) Words: Support – formal and informal Bonding -, bridging-, linking social capitals Cultural capitals Social welfare policy

8. DSE conference Ghent 28th-30th May8 Method: Qualitative Sample: Strategic sampling 75 families (75 mothers, 51 fathers/partners) Data sources: interviews with one or both parents of disabled children, interviews with 5 couples (5 men and 5 women) that selected to abort a foetus with a diagnosis, interviews with 12 professionals, 3 focus group interviews with staff at local bureaues serving disabled people and their families, document analysis.

9. 1990 law on separation of state and municipalities DSE conference Ghent 28th-30th May9 M. HealthM. Educ. Disability National Insurance Background: A few Milestones marking changes 1974-2008 Ministry of Social Affairs Municipal authorities 1979 law on the support of the M. R. (the Board) 1983 law on the affairs of the disabled 1986 the Diagnostic centre opens 1992 law on the affairs of the disabled 1974 comp. school law 1977. Spec.Ed. regulation 1991 comp. school laws 1995 law 1996 schools to municip. 2008 inclusion 1979 Areal Boards for the services to the M. R. 1983 Areal Boards for the services to disabled people 1990 law on separation of state and municipalities services. 1994 Experim. municipalities Health insurance Pension Insurance Occup. Injury Insurance and Social Assistance 2000,law on a 9 months parental leave 2007 moved partly under M of Health State Services Amalga- mations, restruct- uring of helth Services and hospit.

10. Parent in Context of Social Policy Group 1. Children born 1974-1983 (15 families) Group 2. Children born 1984-1990 (15 families) Group 3. Children born 1991-2000 (25 families) Group 4. Children born 2001-2007 (20 families) 10DSE conference Ghent 28th-30th May

11. The big story of change in the lives of the families Significant improvement in the quality of lives of the families with changes in policy and services (but varies according to municipalities) Accessing formal support gets complex except in experimental municipalities that link one person to the family and coordinate formal support over time. From no schooling, via segregated education to integrated / inclusive education and beyond... From parents as architects helping build the formal support system to parents as consumers. From a help discourse to a rights discourse. 11DSE conference Ghent 28th-30th May

12. Smaller stories: themes across the parent narratives Bonding social capital typically weakens at the diagnosis of a disabled child. Little informal support – especially to fathers. Mothers become the captain of the family ship, fathers take on a viscosious role. Accessing the flow of bridging and linking capital is related to social status, education, place, political party membership and family connections. Both parents feel emotional loneliness – and that they have to fight for their child. A normal life with a difference The problems with the label of autism The terrible choice – to have or not to have the baby DSE conference Ghent 28th-30th May12

13. DSE conference Ghent 28th-30th May13 Working class mother of John born 1974: There was nothing in our part of the country. We had to put him into the institution Ml. class mother of Sif born 1986: She has been my life. I have fought all the way, used all my contacts, but she got some of what she needed. But I am getting tired, but I would do it again if I had to Skilled worker, father of Kristján born 1989: I cut through the shit and call the Minister if I need to. He is a relative and we know each other from the party Professional father of Freyja born 1992. We use as little service as we can, except the schools – we are private people and want to look after our own. When we need something we naturally consult colleagues

14. DSE conference Ghent 28th-30th May14 Working class mother of Þórunn born 1995: This is all so very complicated. We got all the help she needed, but our home was often like a public place, strangers coming and going This is the systems responsibility now I have been struggling for years to have her placed in a group home She moved out last month and we are getting our lives back. We have done our best and will of course visit and all that… we love her, especially her father…

15. DSE conference Ghent 28th-30th May15 Ml. Class Mother of Guðrún born 2000 in an experimental municipality It was so terrible, I was so frightened, but things have turned out for the best…The doctor, a young woman in jeans and a tee-shirt, told us … [about the disability]. She sat on my bead, listened and explained what she knew and what she didnt … …my fiancé was fantastic, and both our families and friends all came. I was very weepy for a while, but soon Joan (the personal coordinator) came. She called and asked if she could come… She was lovely, gave us information, offered to help fill in forms, find a physiotherapist, and much more. We have her mobile and can call her when we need to – She is fun and drops by like a friend. She will come to our wedding...

16. DSE conference Ghent 28th-30th May16 Life gets easier yet more complex over time These findings coincide with changes in Icelandic society, the welfare policy, growth in professional groups, the increased scaffolding between professionals working with disabled people and their families. The findings reflect similar findings elsewhere in modern societies (Ferguson, P. 2001, Ferguson, Ferguson and Jones 1988, Goodly, D. 2008, Lundeby and Tössebro 2009 and others.) but in one complete and complex welfare society. Exception from that is that these families were economically OK and most owned their homes. Only one family can be described as poor. Services in the larger experimental municipalities provided by an expert with a human face, who links parents with relevant services really works. If parents are able to engage with their bonding capital and accept help of a support person to access services aimed at the whole family, then life with a disabled child (who is expected to live into adulthood) is an ordinary life with a difference

17. At long last my book will appear ! Bjarnason, D.S. (expected in fall 2010). Social policy and social capital: Parents and Exceptionality. Experiences of having a disabled child in Icelandic families 1974-2007. New York: NOVA Science publishers At long last my book will appear ! Bjarnason, D.S. (expected in fall 2010). Social policy and social capital: Parents and Exceptionality. Experiences of having a disabled child in Icelandic families 1974-2007. New York: NOVA Science publishers DSE conference Ghent 28th-30th May17

18. DSE conference Ghent 28th-30th May18 Conclusion