The experiences of parents of disabled children of formal and informal support over a period of 35 years of social and policy changes in Iceland Professor Dóra S. Bjarnason University of Iceland School of Education Faculty of Education Studies

D.S. Bjarnason AERA, San Deiago, Background: Iceland: small population, large island, high standard of living, Nordic type welfare society, economic vulnerability to economic crash in 2008

D.S. Bjarnason AERA, San Deiago, The study 2005/ : 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 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 changes both in the Icelandic society and in its welfare: social, educational, health and disability policies.

D.S. Bjarnason AERA, San Deiago, The goales of the study are: – Describe and explore the experience of parents of disabled children and youth of giving birth to and bringing up a disabled child – and their experience of different formal and informal support to the child and the family. – Compare the experience 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 decissions and choices that parents make on their disabled childrens behalf e.g. regarding their placement in segregated or inclusive settings. – Explore positive and negative implications of increased specialisation and increase in formal services directed towards disabled children and their families,for their full and active participation in society and identify in what way specialised and generic support can empower disabled people and their families.

D.S. Bjarnason AERA, San Deiago, Questions How does Icelandic social disability policy impact the quality of life, available to families with disabled children over time? What were the parents possibilities to engage with formal and informal support over time and how has that changed the complex social construction of disability in the families ?

D.S. Bjarnason AERA, San Deiago, 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

D.S. Bjarnason AERA, San Deiago, Method: Qualitative Sample: Strategic sampling – 75 families (75 mothers and 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 fetus with a diagnosis, interviews with 12 professionals, 3 focus group interviews with staff at local bureaues serving disabled people and their families, document analysis.

D.S. Bjarnason AERA, San Deiago, M. HealthM. Educ. Disabilit y National Insurance Background: A few Milestones marking changes 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 comp. school law Spec.Ed. regulation 1991 comp. school laws 1995 law 1996 schools to municip inclusion 1979 Areal Boards for the services to the M. R Areal Boards for the services to disabled people 1990 law on separation of state and municipalities services Experim. municipalities Health insurance Pension Insurance Occup. Injury Insurance and Social Assistance 2007 moved partly under M of Health 1990 law on separation of state and municipaliti es State Services Amalga- mations, restruct- uring of helth Services and hospitals

Parent Groups in Context of Social Policy Group 1. Children borne (15 families) Group 2. Children borne (15 families) Group 3. Children borne (25 families) Group 4. Children borne (20 families) 9D.S. Bjarnason AERA, San Deiago, 2009

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 ? From parents as arcitects helping build the formal support system to parents as consumers. From a help discourse to a rights discourse. 10D.S. Bjarnason AERA, San Deiago, 2009

Smaller stories: theams accross the parent narratives Bonding social capital typpically wekeakens 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 lonelyness – and that they have to fight for their child. A normal live with a difference The lable of autism The terrible choice – to have or not to have the baby D.S. Bjarnason AERA, San Deiago,

D.S. Bjarnason AERA, San Deiago, Working class mother of X borne 1974: There was nothing in our part of the country. We had to put him into the institution. Ml. class mother of Z. borne 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 K. borne 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 C borne We use as little services as we can, except the schools – we are Private people and want to look after our own. When we need something we naturally consult colleges.

D.S. Bjarnason AERA, San Deiago, Working class mother of S borne 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…

D.S. Bjarnason AERA, San Deiago, Ml. Class Mother of G borne 2000 in an experimental municipality It was so terrible, I was so freight, 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,.

D.S. Bjarnason AERA, San Deiago, 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. 2005, Lundeby and Tössebro 2009 and others.) but in one complete and complex welfare society. 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

D.S. Bjarnason AERA, San Deiago,

D.S. Bjarnason AERA, San Deiago, Conclusions