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

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.

Questions for this paper:

What are the lessons learnt from my study on parents experiencesof 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?

Population 317.376 people. Nordic type welfare state. High living standard. Economic vulnerability.

Iceland is generally considered a relatively peaceful environment

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

Milestones: Law and services UN convention on the rights of the Child from 1989 signed by Iceland 1990This 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. 1997 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 preschoolsto universities.•2007 A statutory plan on the affairs of children and youth

My study: The study 2005/2006-2008 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 1974 -2007. This is a time of great changes both in the Icelandic society and in it’s welfare policy.

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.

What is a family?

Family is a process of interactions and activitiesbetween persons who consider themselves as belonging to a family

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 withbonding capital reduces the parents periods of stress and sorrow.Access to bridging and linking capitals opens and maintains access to appropriate services.

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.

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

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

Breaking barriers: Challenges and Empowerment

It is not just

individual challenge

a family challenge

a professional’s challenge

Working for Change

• individual and his or her families

•schools

•systems

•communities

•society