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

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. BjarnasonUniversity of IcelandSchool of Education

Faculty of Education [email protected]

http://wp.khi.is/dora

mailto:[email protected]

http://wp.khi.is/dora

D.S. Bjarnason AERA, San Deiago, 2009

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Background:Iceland: small population, large island, high standard of living,Nordic type welfare society, economic vulnerability to economic crash in 2008


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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.

1979-2008 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 changes both in the Icelandic society and in it’s welfare: social, educational, health and disabilitypolicies.


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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 children’s 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.


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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 ?


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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 informalBonding -, bridging- , linking social capitalsCultural capitalsSocial welfare policy


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Method: QualitativeSample: 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.


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M. Health M. Educ. Disability

National Insurance

Background: A few Milestones marking changes 1974-2008Ministry 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

2008

1974 comp.school law

1977. Spec.Ed. regulation

1991 comp. school laws1995 law 1996 schoolsto 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

2007 moved partly under M of Health

1990 law on separation of state and municipalities

State Services

Amalga-mations,restruct-uring of helthServices and hospitals


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Parent Groups in Context of Social Policy

Group 1. Children borne 1974-1983 (15 families)





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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.


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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


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• 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 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 C borne 1992. 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.


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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…


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Ml. Class Mother of G borne 2000 in an experimental municipality It was so terrible, I was so freight, but things have turnedout for the best…The doctor, a young woman in jeans anda 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 mobileand can call her when we need to – She is fun and drops bylike a friend. She will come to our wedding,.


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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 capitaland 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


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Conclusions

Documents

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