1. 1 Wellbeing for Children with a Disability in New Zealand: A conceptual framework By Maree Kirk BRCSS Award 2007 Department of Societies and Cultures University of Waikato New Zealand BRCSS/SPEaR Research Colloquium 14-15 April 2008 Old Government Buildings Victoria University of Wellington

2. 2 Objective: Purpose of study (Master of Philosophy): to explore neglected area of child welfare in New Zealand context: the meaning of wellbeing for children with a disability the factors influencing their wellbeing in the school environment

3. 3 Three Questions The 3 questions addressed were: What does wellbeing mean for children with a disability? What factors influence wellbeing for children with a disability at school? Are New Zealand’s current policy frameworks relevant to the wellbeing of children with a disability?

4. 4 Method and Materials Study design Grounded theory: exploratory, qualitative study Purposive sampling: snowballing technique 23 participants: 10 families, student with Down Syndrome and their parents Face-to-face interviews: meaning of wellbeing and factors influencing it Focus on school environment Tools Interview grids, show cards, photo record, interview support material Data Analysis Content analysis – conceptual framework (wellbeing - dimensions and factors) Note – not representative – only exploratory – further investigations required

5. 5 Research Background : Setting the scene: Definitions Theories: wellbeing: ecological – key settings: solidarity – social inclusion: human need Indicators of wellbeing Literature review Policy relevance: Existing frameworks in New Zealand: emphasise holistic approach Agenda for Children and Whole Child Approach WCA (ecological)

6. 6 Research challenges  Ethical considerations: children, disability,photo record  Access to student population  Researcher skill base  Agency gatekeeping  The impact of recording perspectives of service provision  Consideration of allocated times

7. 7 Results: Perceptions of wellbeing for children with a disability dimensions and factors influencing each dimension are identified interdependence of factors family function ecological model Key Settings approach adapted disability perspective for children requires adapted social model

8. 8 Results: perceptions of wellbeing (dimensions and factors) Dimensions Building Capability Identity Friendships Communication Participation Care and Support Environments Factors Meaningful work Skilled based activities Supported learning environment Goal of competency Safety Sense of belonging Ability to learn Age appropriate Disability All environments Facilitated Social communication Language skills All environments School culture Sense of belonging Planned Family/home Planned Role of support Family / home Sense of belonging Local Acceptance of diversity

9. 9 Results: Interdependence of factors Key findings: the degree to which the interdependence of factors is recognised and facilitated by service providers and policy makers will: promote or inhibit child‘s social experience have impact on participation and sense of happiness, identity, social inclusion ultimately inhibit / facilitate wellbeing Example: communication, language skill, service provision

10. 10 Results: Key findings: the degree to which families adapted to support wellbeing for the child with a disability is recognised and facilitated by service providers and policy makers will: have impact on workforce participation have impact on sense of happiness, social inclusion and the families’ social experience ultimately inhibit / facilitate wellbeing Example: adapted Key Settings Model, family and school relationships, service provision

11. 11 Returning to the questions Based on what the study has shown an interpretation of what wellbeing means: Wellbeing for children with a disability would be the identification of circumstantial life satisfaction factors relevant to the child’s sense of subjective wellbeing and happiness. Government policy would reflect the ability to support children with a disability by providing securities such as access to health resources, access to education, social support, personal safety and community participation to promote equal opportunity for wellbeing and happiness.

12. 12 Policy Implications Parents improving the links across key settings support family skill development Service provision address professional development school - wide inclusive philosophy  social skill development experienced service providers ongoing support and training Policy makers identify and address service provision gaps expand current criteria and eligibility of children Conceptual framework as a policy and service development tool

13. 13 Conclusions Further research required to support exploratory findings, but some indication that: aspects of New Zealand’s social contract for children may not be equally applied to children with a disability – still a group apart there is lack of recognition of building capability: academic expectation there is discrepancy between need and funding allocation there are identified service gaps which need to be addressed the WCA may not be consistent with service provision for children with a disability - 11% of New Zealand child population the WCA and KSM may not meet objectives of providing holistic or inclusive approach to wellbeing for children with disability

14. 14 BRCSS Financial cost of research (cameras, koha etc) Funds to access further information, agencies and purchase publications “opening doors” academic as advocate e.g. IHC, Families Commission and Government submissions: Review of long term disability services, Review of initial teacher training Credibility to area of research Access to research forum Funding for further study