Family leadership

Perma link: http://tinyurl.com/vulnerablefamilies



Vulnerability can happen in many different contexts - disability is one of them. Parents of disabled children face a series of challenges that compound. Families have told us that as a result of the confidentiality that binds professionals in the field, they are often unaware that many others are facing similar issues. This results in added stress and isolation.

In 2013 some of us ran a family leadership development programme to explore the ways in which family voices could be shared and heard.

The Abstract below was submitted towards the 2013 Human Rights Commission Diversity Research report to the United Nations scheduled for May 2014 publication on http://www.hrc.co.nz/race-relations/annual-review-of-race-relations

Consumer voice in the Disability sector
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:

(a) Enable a diverse group of consumers to recount their experiences by putting in place effective and targeted mechanisms to capture stories and
(b) Test a participative story selection and evaluation methodology mechanism to represent and honour the diversity of consumer voices.

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.

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.

More on our work with vulnerable families can be perused on www.egl.ac.nz
Contact us if you are interested in hearing more about our research!

'Circles of support' or 'intentional networks' are proven tools to help families achieve better results for their differently-able member. Bridget describes below her family's experience in helping her son strive for a good life:


A professional in the disability field and the mother of a young man whom she helped successfully plan and live the life he wants for himself, Bridget explains how the initial family vision was implemented via a circle of support first consisting of adults and support professionals. As her son grew up, however, the process was handed over to her son who now leads his own circle of support.

What was important to Alex was that his circle of support would be made up from his age group - and this indeed helps integrating him amongst his peers. The meaning of parenthood changes as our children mature of course, but Bridget emphasises that it is now that you need to ask yourself "Is life good enough for my son/daughter"? because as governments change policies and implementation of even the best ideas take time, there are a host of things that can be done without waiting to enhance our quality of life at all levels. She remarks "we must not feel hostages to government plans" - we can act right now!

See this clip on the website of Paradigm Initiative at: www.paradigminitiative.co.nz/stories-from-nz.