Social policy and social capita Parents and Exceptionality

  • Slides: 18
Download presentation
Social policy and social capita: Parents and Exceptionality l. Experiences of having a disabled

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 [email protected] is http: //wp. khi. is/dora DSE conference Ghent 28 th-30 th May 1

Iceland: Small population 319. 000, large island, high standard of living, Nordic type welfare

Iceland: Small population 319. 000, large island, high standard of living, Nordic type welfare society, economic vulnerability, economic crash in 2008 DSE conference Ghent 28 th-30 th May 2

DSE conference Ghent 28 th-30 th May 3

DSE conference Ghent 28 th-30 th May 3

The study 2005/2006 -2008: The focus of the study is on parents’ perspectives of

The study 2005/2006 -2008: The focus of the study is on parents’ perspectives of informal and formal support due to a child’s 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 it’s welfare: social, educational, health and disability policies. – The crash - Now the welfare policy is ? DSE conference Ghent 28 th-30 th May 4

The goals of the study are: – Describe and explore the experience of parents

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. DSE conference Ghent 28 th-30 th May 5

Questions • How does Icelandic social disability policy impact the quality of life available

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 ? DSE conference Ghent 28 th-30 th May 6

Theoretical perspectives Social constructionism I am interested in the “meaning making” in the face

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 DSE conference Ghent 28 th-30 th May 7

Method: Qualitative Sample: Strategic sampling 75 families (75 mothers, 51 fathers/partners) Data sources: •

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. DSE conference Ghent 28 th-30 th May 8

Background: A few Milestones marking changes 1974 -2008 Ministry of Social Affairs M. Health

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

Parent in Context of Social Policy Group 1. Children born 1974 -1983 (15 families)

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) DSE conference Ghent 28 th-30 th May 10

The big story of change in the lives of the families • Significant improvement

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. DSE conference Ghent 28 th-30 th May 11

Smaller stories: themes across the parent narratives • Bonding social capital typically weakens at

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 28 th-30 th May 12

 • Working class mother of John born 1974: “There was nothing in our

• 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” DSE conference Ghent 28 th-30 th May 13

Working class mother of Þórunn born 1995: “This is all so very complicated. We

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…” DSE conference Ghent 28 th-30 th May 14

Ml. Class Mother of Guðrún born 2000 in an experimental municipality “It was so

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 didn’t …” “…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. . . ” DSE conference Ghent 28 th-30 th May 15

Life gets easier yet more complex over time • These findings coincide with changes

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 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 DSE conference Ghent 28 th-30 th May 16

At long last my book will appear ! Bjarnason, D. S. (expected in fall

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 28 th-30 th May 17

Conclusion DSE conference Ghent 28 th-30 th May 18

Conclusion DSE conference Ghent 28 th-30 th May 18