RESEARCH UNDERWAY

Health and well-being indicators for children and youth with disabilities (2009-2010)

This project brought together national leaders from diverse fields to initiate a program to develop the robust set of indicators needed to develop and evaluate policy and to measure progress toward improving the well-being of young Australians with disabilities.

Project team

University of Sydney:
Prof Gwynnyth Llewellyn
Prof Eric Emerson
Prof Anita Bundy
Ros Madden
Dr Anne Honey
Gabrielle Hindmarsh

University of Western Australia
Prof Helen Leonard
Rebecca Glauert
Melissa O’Donnell
Amanda Langridge

External collaborators:
Prof Jan Mason (Social Justice Social Change Research Centre, University of Western Sydney)
Sushma Mathur (Australian Institute of Health and Welfare)
Marie Blackmore (The Centre for Cerebral Palsy)
Sean Loke (The Centre for Cerebral Palsy)
Debra Turner (Disability Services Commission)
Jacqueline Burns (WA Department of Education and Training)
Peter Rowe (State Child Development Centre)
Jane Woodruff (UnitingCare Burnside)
Sally Cowling (UnitingCare Burnside)
Kerry Stubbs (Northcott Disability Services)
Kevin Cocks (Queensland Advocacy Incorporated)
Leigha Dark (The Spastic Centre)
Liz Foy (The Spastic Centre)
Liz Hopkins (Northcott Disability Services)
Rosemary Kayess (Disability Studies and Research Centre, University of NSW)

Overview

The project drew together Australian researchers and stakeholders to begin developing indicators of health and well-being for children and youth with disabilities. The collaboration was seed-funded for 2009-2010 by the Australian Research Alliance for Children and Youth (ARACY).

Background and approach

We are using the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and the United Nations Convention on the Rights of the Child (CROC) as a framework for examining well-being for young people with disabilities. We are using the convention to define social conditions agreed as constituting a good life and a good society so that well-being is assessed in relation to a group’s capacity to realize their rights under the convention to the same degree as other citizens. Our approach is also informed by the International Classification of Functioning, Disability and Health (ICF) (WHO 2001). This current world standard approach to defining and classifying disability sees disability is a multi-dimensional concept and experience, arising from the interaction of health conditions and the environment.

This project represented the first stage in a long-term program of research, the goal of which is to improve outcomes for children and youth with disabilities by enabling valid and reliable measurement of appropriate indicators of well-being by:

  1. Developing a list of indicators of well-being that are specific and appropriate to children and youth with disabilities.
  2. Mapping indicators to ongoing existing data sources where possible.
  3. Developing specific strategies by which currently unavailable data can be collected and monitored.
  4. Developing an ongoing system for monitoring and evaluating progress toward equality along the relevant indicators.

Outcomes

  1. Developed a potential framework of indicators based on the UN Convention on the Rights of the Child and the UN Convention on the Rights of Persons with Disabilities of the health and well-being of children with disabilities at a population level. Conceptual work on this framework is ongoing with a view to submitting an ARC grant in 2011.
  2. Conducted six child and youth focus groups to obtain the perspectives of children and youth with disabilities about well-being. Analysis will refine our thinking about the framework of indicators.
  3. Produced report scoping the current state of research into the well-being of children and young people with disabilities (see report).
  4. Produced report identifying current national databases that can potentially be used to measure well-being for children and young people with disabilities (see report).

Dissemination

Fraser, V., Madden, R., Honey, A., Llewellyn, G., & Emerson, E. (2010). Indicators of Health and Well-being for Children and Young People with Disabilities: Mapping the Terrain and Proposing a Human Rights Approach.

Llewellyn, G., Emerson, E., & Honey, A. (2009). Well-being indicators for children and youth with disabilities. Panel discussion presented at the 2nd International Conference of the International Society for Child Indicators, 4-5 November, Parramatta

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