1. Breaking the barriers: Changes in support for children and families in Iceland
Changing children’s services: challenges for education,
social work and health care professionals.
Getting it right for every child: Childhood, Citizenship and Children’s Services

2. Introducion Background. The Icelandic Society and
indicators on children’s well-being.
New laws and services.
My research: Parents perspectives
on support due to disability in the family.
Who is the good professional
Reflections and lessons learnt.

3. Questions for this paper:
What are the lessons learnt from my study on parents experiences
of formal and informal support provided because of disability
in their families that might speak to a broader international audience?
What kind of service system (s) appear most effective in the eyes
of parents and why?
What is a good professional from the parents perspective – and has
that changed over time?
Implications for changing children’s services?

4. Population 317. 376 people. Nordic type welfare state
Population people. Nordic type welfare state. High living standard.
Economic vulnerability.
Iceland is generally considered a relatively peaceful environment

5. A few facts about Icelandic children
(Ref. OECD –Innocenti Card 7)
Material well-being
Health and safety
Educational well-being
Family and peer relationships
Behaviour and risks
Subjective well being
On all these dimensions Iceland ranks similarly to other Nordic
nations. But we rank average or just below average in the PISA evaluation

6. Milestones: Law and services
UN convention on the rights of the Child from 1989 signed by Iceland 1990
This resulted in review of various laws and regulations, and institutions
related to the rights, protection and the well being of children.
Ombudsman of children established by law 1995
1992 Law on the division of tasks between the state
and municipal authorities experimental
municipalities.
1995 Government Agency for Child Protection
1998 The Children’s House
2000 Act on Paternity and Maternity Leave.
2002 A new Child protection Act
2003 Act in respect of Children
Post 2000 new acts on education from preschools
to universities.
2007 A statutory plan on the affairs of children and youth

7. My study: The study 2005/
The focus is on parents’ perspectives of informal and formal
support due to a child’s disability – over time.
Their children labelled with disabilities are born between
This is a time of great changes both in the
Icelandic society and in it’s welfare policy.

8. Theoretical frame and perspectives
The main theoretical frame is Social Constructionism
poststructuralism and social capital theories are also applied.
Concepts: Formal and informal support, social capital:
bonding, bridging and linking
Method:
The study is qualitative. The research focuses on parents of children labelled
significantly disabled.
Data:
Semi-structured interviews with one or both parents of 65 families with
disabled children and youth borne 1974 to 2007.
Total 96 interviews and interviews with 15 professionals (doctors and health workers,
social workers, teachers and bureaucrats), three focal group interviews with
bureaucrats and local administrators, and document analysis.

9. What is a family?
Family is a process of interactions and activities
between persons who consider themselves as
belonging to a family

10. Some findings:
Fathers have much less access to bonding capital than mothers,
but more access to bridging and linking capital.
How parents work through difficulties is related to:
If the child is expected to live or die
Access to social capital especially bonding capital
Whether or not they have previous knowledge of disability –
or access such knowledge from other families.
Parents education and personal resources
Flow of information and short waiting lists / time
Access to necessary, sufficient and flexible services as time goes
by and the child’s and the family’s needs change.
Support from a stable professional who has access to all relevant
service system, asks parents for their needs and offers support in equal
partnership.
Empowering engagement with social capitals, especially with
bonding capital reduces the parents periods of stress and sorrow.
Access to bridging and linking capitals opens and maintains
access to appropriate services.

11. Lessons
Professionals should help families repair, strengthen and build
social capitals.
Professionals should guide parents through the service
maize - but in a collaborative way (try and disrobe their
professional power).
Support should be aimed at the whole family rather just
individual children in need.
Support needs to be flexible.
The same support person with a human face, with
access to different systems.

12. What is a good professional from the parents perspective
– and has that changed over time?

13. Parents and professionals Unequal power relationships?
Parents: Professionals:
as clients as experts
as paraprofessionals as transplanters
as consumers as service providers
as disepowered as empowering
as negotiators as negotiators

14. Breaking barriers: Challenges and Empowerment
It is not just
individual challenge
a family challenge
a professional’s challenge

15. Working for Change individual and his or her families schools systems
communities
society