EGL's mission is to bring accurate data and objective analysis from educational research to organizations.

We are a research institute dedicated to improving policy and decision making through research and analysis


Developing family leadership in the disability sector

Summary of our Consumer voice in the Disability sector project

The results of our Family Consumer Leadership Development work is available through the Te Whanau Kotahi website at: www.twk.org.nz/changestories See the Abstract describing the intervention below.

Dr. Annick Janson, Associate, Centre for Applied Cross-cultural Research, Victoria University of Wellington
Barry Davies, General Manager, Te Whanau Kotahi, Tauranga

The Consumer Storytelling project addressed knowledge gaps surrounding user experiences in the Disability sector: “What difference do services make to consumers?” and “How do consumers navigate services through milestone family events to achieve a ‘Good Life’? [as per the Enabling Good Life Ministry of Health/Office for Disability Issues initiative]
A Peer Knowledge-Sharing of Lived Experience model was developed as a proof of concept to: 
  • Enable a diverse group of consumers to recount their experiences by putting in place effective and targeted mechanisms to capture stories and
  • Test a participative story selection and evaluation methodology mechanism to represent and honour the diversity of consumer voices.
Te Whanau Kotahi Trust, which provides child development services in the Western Bay of Plenty under MOH contract commissioned the project. They were keen to understand family/whanau perspective of services offered and what advice could be widely shared from families personal experience.The consumer storytelling project was seen as closely aligned to the Te Whanau Kotahi vision: "Children and families/whanau are valued and included in the social and economic fabric of our communities".

Thirty telephone interviews, 3 workshops and 10 individual video recording sessions were carried out. The study outlined a continuum of leadership experiences working at four levels (self, family, peers and sector) that characterized their practice in advocating for their special needs children. In their leadership development path, it became clear to them that they need to take action to reach key decision makers, service planners and service providers in the sector – where parents’ voice needs to be heard.

Participants selected themes to be integrated into a combined Significant Story Trailer to represent their experience and planned a dissemination pathway, including the use and monitoring of Social Media channels. The trailer introduces the project (see: http://tinyurl.com/TWKinterviews) for their voice to be widely shared with the disability sector. Download the Parents' Guide here.

The findings contribute robust evidence for service delivery and policy development in the Health and Disability sector – where quantitative measures are traditionally preferred. 

This project followed the SPARK NZ ‘Knowledge Translation’ methodology and was supported by a Consumer Leadership Development Grant administered by Te Pou.