Stories that Build

Leadership in the Disability

Sector

Facilitating the Transition to

Individualised Funding

Annick Janson, Centre for Applied Cross-cultural Research,

Victoria University of Wellington

In collaboration with Michael Kendrick, Kendrick Consulting

International, MA, USA

Commissioned by

Manawanui InCharge

Stories that Build Leadership in the Disability Sector Facilitating the Transition to Individualised Funding

Annick Janson, Centre for Applied Cross-cultural Research, Victoria University of Wellington In

collaboration with Michael Kendrick, Kendrick Consulting International, MA, USA

Table of Contents

ABSTRACT 2

INTRODUCTION 2

A LEARNING TRANSITION 2

THE NEW EXPERTS 4

KNOWLEDGE TRANSLATION 5

METHODS 5

RESULTS 6

REPRESENTATION: ‘IN MY VOICE’ 6

OVERCOMING BARRIERS: THE BENEFITS OF INDIVIDUALISED FUNDING 7 CONSENT AS ENGAGEMENT 10 COLLABORATIVE BUILDING OF THE INTERACTIVE COACHING TOOL 10

DISCUSSION 12

OUTCOMES FOR THE DISABILITY SECTOR 13

SHARING STORIES IN THE COLLABORATIVE ECONOMY 13

REFERENCES 14

APPENDIX A: IN-DEPTH EXAMPLES 16

TAKING PERSONAL RESPONSIBILITY 16 ADDRESSING A SPECIFIC CONCERN 16

BECOMING A ROLE MODEL 17

TAKING CHARGE TO ADDRESS A GAP: CREATIVE RECRUITING 17

NEW MEDIA AND SOCIAL NETWORKING: BUILDING ENGAGEMENT 18

BUILDING ON THE ADVANTAGES OF NEW MEDIA TO APPEAL FOR RESOURCES 18

SENDING VIDEO MEDIA AND REACH A GLOBAL AUDIENCE: FROM KERIKERI TO GOOGLE 19

HYPER-COMMUNICATING TO INCREASE LOCAL SUPPORT: A NEW MIX OF LOCAL AND VIRTUAL 19

MENTORING DISABLED PEOPLE TO TAKE CONTROL: MICRO-BUSINESS CASE STUDIES 20

CO-CREATING AND PEER-REVIEWING A NOVEL COMMUNICATION MODEL 20

PERMISSION TO DREAM: INTRODUCING A NEW CONCEPT 20

SHARING MULTIPLE OPINIONS AND IDEAS IN CONTEXT: MINI-DOCO 21

OPENING A RANGE OF POSSIBILITIES 21

OFFERING MORE IN-DEPTH INFORMATION ABOUT AN IDENTIFIED THEME 22

DRILLING DEEPER AND TARGETING SPECIFIC INFORMATION 22

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ABSTRACT Transitioning to Individualised Funding in the disability sector holds the potential for significant changes. People’s first challenge however is to grasp the range of new options available to them. Storytelling addresses this because when people hear positive peer stories, they can be inspired into action. This project, commissioned by Manawanui InCharge, produced an interactive tool designed to facilitate this transition through the effective dissemination of peer knowledge.

Forty five participants in a Consumer Leadership Development programme described novel ideas explored whilst transitioning to IF. Thematic analysis of these stories revealed four main topics: Building natural supports/networks, Mobility and technology, Home of one's own and Productivity.

A large body of evidence is emerging, describing the social impact that this transition has created – through families reporting multiple ways of leading social change and making a difference in their communities, whilst living a meaningful life.

The novelty of this narrative tool is that the thematic analysis also provides a selection mechanism for gaining new knowledge. This flexible tool can be introduced in conversation and then emailed to people who wish to pursue learning via peer story-sharing. Inspired by Collaborative Consumption models, we describe how knowledge spreads as needed by families through networked and social media sharing, partly due to the ever-increasing adoption of mobile devices.

INTRODUCTION Transitioning to individualised support and lifestyle arrangements such as Individualised Funding (IF), has the potential for people to make significant changes in their lives, however this comes with some challenges of its own. Some people’s past experiences were about receiving services from service providers who spent their funding allocation on their behalf, with varying degrees o f consultation over how the money was spent. In these cases, self-support entails a novel self- determination situation through which people need to make decisions on how to spend the money to craft a good life for themselves.

A learning transition Research shows, however that one of the first significant challenges people face during this transition is to grasp the extent of the options open to them. At the core of personalisation is the person making decisions about what a good life is for them and about their goals (Janson in preparation). This idea seems disarmingly simple, but presents some challenges that need to be addressed. People living with disabilities may need coaching and encouragement to dream bigger. There are abundant examples of people who are coaxed into reducing their expectations because of disability; their

experiences having left lasting scars1. When it comes to articulating dreams, the essence of what we are aiming for may lie in the minutiae of personal interaction and ensuring we are aware of potential threats to the success of new approaches. We also need to make sure that people are not rushed towards simplistic goals and

1 A social worker tells of her experience talking to a middle-aged man who has high physical needs and significant

mobility challenges. He spoke of how difficult it has been for him to find people to assist him with either models of care. “I

do not dare dreaming about what is possible beyond my daily personal care.” He is still traumatized by past negative

experiences and took a long time to unravel secret dreams of pursuing studies in Education.

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to-face events and workshops, recording offers two invaluable advantages: firstly

of this kind were

solutions, that they have skilled coaches to guide them. Once started on this path and people have shaped some starting ideas, Individualised Funding models provide us with the means to implement these ideas creatively. Some tools such as PATH and MAPS(O’Brien, Pearpoint and Kahn, 2010) have been used to identify and elaborate disabled people’s goals, using strategies to bring novel approaches into the mix, from which decisions can be made. Nevertheless, these can only push the imagination of those that are part of the process or in the room when the discussion happens, because ultimately ‘one does not know what one does not know’.

Storytelling is a way to address these pitfalls, because a repository of stories contain working examples of approaches, perhaps never considered before, pushing time and geographical boundaries in ways that face-to-face situations cannot create. Telling stories is an effective method for sharing critical information (Abma, 2003; Kankainen et al, 2011). Storytelling has been used in the educational (Davidson 2004), health (Banks, 2011; Clark and Mishler, 1992; Greenhalgh, 2001) and more generally knowledge translation contexts (DeForge, 2011). In Haigh and Hardy’s view (2011) the importance of storytelling as the foundation of human experiences and its usefulness in health care delivery cannot be underestimated. The authors stated that there is a growing awareness that service users are a rich source of healthcare related stories that can affect, change and benefit clinical practice. Stamatakis et al. (2010) support this view, stressing the potential for stories to translate evidence of health benefits for policy makers. Goyal et al (2004) proposed to use narrative evidence-based medicine to implement the NIH translational research roadmap, beginning with practitioners who have chosen to adopt and recommend strategies and interventions based on high-level evidence and guidelines (Charon and Wyer, 2008). Goyal et al (2004) extrapolated from the bio psychosocial model, patient-centered care and shared decision making to develop a medical practice and theory that unites the local and specific concerns of narrative medicine with the generalizability and power of evidence-based medicine, significantly improving our understanding of service users’ experiences.

The programme is supported by a large body of research documenting the use of video to increase the learning outcomes of a target group. Recording increases communication capability because of the possibility of rerecording areas needing clarification, as well as editing narratives to outline certain main points. In addition, in the face of a trend of decreasing attendance at face-to face events and workshops, recording offers invaluable advantages: firstly, recording is

available for as long as needed following a traditional workshop – a welcome refresher to

those who attend a workshop, and secondly a recording can be distributed to those who could not afford the time to attend. Learning Outcomes when using video materials summarized by Ronald Berk from Hopkins University (2009). Berk listed 7 factors relating to the audience viewing the clips: Energize or relax viewers towards specific learning, draw on your audience’s imagination, improve attitudes toward content and learning, build a connection with other users in the audience, inspire and motivate and decrease anxiety and tension on scary topics. Moreover, there are 13 factors relating to the process of learning: Grab audience attention, focus viewer concentration, generate interest amongst users, create a sense of anticipation, increase memory of content, increase understanding, foster creativity, stimulate the flow of ideas, foster deeper learning, provide an opportunity for freedom of expression, serve as a vehicle for collaboration, make learning fun, set an appropriate mood or tone, and create memorable visuals.

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More than half of the participants elected to record their stories. We recorded multiple examples of the learning outcomes mentioned by Berk (2009) detailed in the body of this report.

The current research was carried out with the intent to facilitate a mind-shift during the transition to a self-supporting funding model, because when people hear positive peer stories, this can inspire them into action (Janson & Davies, 2013). Typically, the first conversation with a Coach generates a mix of emotions: excitement at being able to exercise self-determination and a degree of apprehension. The latter is caused by uncertainty regarding the flow of future actions and events as well as a lack of clarity about future aims and goals. Our solution is to disseminate stories of other families they can identify with, who have undertaken similar transitions. The new experts Face to face encounters between clients and professionals have traditionally been the primary method to transfer relevant information with professionals viewed as the prime experts. We have to let go of these past information transfer patterns, however, because our health systems face staff constriction rather than growth.

In the context of making decisions to orchestrate a good life for the disabled person (Murray, 2011), this balance of power is changing, with recognition that the person with the disability and their family/allies know what is best for them. If so, a peer disabled person or peer family member gains the status of a more appropriate expert than a professional. All parties involved should welcome such a shift – that will free up time and energy for professional staff to focus on other parts of the system where their input is crucial. As a bonus, an extended audience of professionals and policy makers accessing the stories will have direct access to the voices of the consumers of the sector.

Story-sharing is a complex issue because of the highly specific nature of the help that each person needs. We can tackle this challenge with two ideas: peers and technology. This involves orchestrating the meeting of people and knowledge via a multimedia peer-learning system accessible online and via mobile devices, thus distributing the right learning experience for the right audience, at the right time.

We harnessed an age-old idea and enrolled people with lived experience to help their peers deal with situations that they had already addressed. Engaging the help of early adopters as champions provides them with a great opportunity to contribute on two levels: micro and macro. Helping a peer achieve great outcomes is very satisfying and could really strengthen the mentor’s own decision-making ability. Additionally, and this is less frequently mentioned, those peer supporters who volunteer will benefit from contributing to the greater good, by giving back to the system that has helped them in the first place. For these reasons we think that a story sharing platform would qualify as an example of the current collaborative economy trend. In their 2010 work, What’s Mine is Yours, Rachel Botsman and Roo Rogers argue that we have entered an era of collaborative consumption, facilitated by social technologies that allow for organized sharing, bartering, trading, renting, swapping, and collectives. The current work proposed to add to Botsman and Rogers’ hypothesis that the social technologies that have m a d e car sharing and apartment swapping mainstream may facilitate new ways of knowing and being towards sharing skills and experience. Such a view of collaborative knowledge building proposes that people contribute knowledge to the collective memory repository using stories as currency and bringing storytelling to a whole new level of sharing via technology.

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Knowledge Translation Research repeatedly shows that clients of the disability sector need more information, but in fact there is an information glut. What families need is the opportunity to build tacit knowledge (targeted information with added value) about their options. Whilst governments hold the responsibility to provide basic information, the exchange of knowledge and experience via peers can be done through stories. Peer support stories carry much more than information, they carry a mix of information and relevant experience, which is also defined as tacit knowledge (Janson and McQueen, 2007). Targeted peer stories have the potential to accelerate the adoption of patterns and choices that will first benefit their mentees – and ultimately the system as a whole. Well-constructed and facilitated stories carry tacit knowledge, because their nucleus is a prime vehicle for a learning point. An obstacle that practitioners need to overcome when using storytelling methodologies to evaluate services with service users, is the lack of recognition from some policy makers and funders that stories, once collected, are indeed representative of consumer experience as a whole, not simply anecdotal evidence of a few. To address this, Wright et al (2007) built on participatory evaluation theory in their report of a case study of the implementation of a participatory evaluation approach using storytelling with service users of a health delivery organisation in Alberta, Canada. They reported that the participatory process resulted in significant capacity building, mutual learning, and relationship development, within the context of a comprehensive and user-friendly evaluation framework. Klein et al (2006) further stressed the robustness of storytelling as a research methodology. Specifically, Steiner (2005) proposed that stories are representative when they include one or more of five attributes. These attributes include theme frequency, location, verifiability, acceptance of uncertainty and compelling narrative. Steiner (2007) followed on with the description of an approach to identifying representative stories for use in disseminating research. This fits comfortably with ongoing dialogues about ethical issues being considered as a vehicle for quality improvement of health care practices. Abma et al (2009) brought forward the example of responsive evaluation, investigating the connections between moral deliberation and responsive evaluation and validated the relevance of storytelling for participatory evaluation in health delivery to improve the quality of health care.

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METHODS This project collated the narratives of people explaining how sets of goals building on a person’s gifts, talents, wishes or passion can now be pursued because the person now holds funding that they may invest directly into achieving these goals. All 45 participants in a Consumer Leadership Development programme described how they have used this transition as an opportunity to explore new options for themselves or family members.

The consent process was divided into two stages: firstly participants were asked to consent to the interview itself – the presence of a video camera can be intrusive or stressful and we wanted to make sure that participants were not put off by this. Once interviews were edited for consistency, they were uploaded on an unlisted link on the stories repository platform for participants to give consent for the second stage: releasing the interview publically.

Collected stories were analysed thematically, revealing four main themes: 1. Building natural supports and networks (including the 1.2 subsection “A voice for the unheard”); 2. Mobility and technology; 3. Home of one's own and 4. Productivity. Where people elected to tell their stories on video, their stories were included in playlists representing the above themes are displayed in the screenshot 1 below. Following the double consent process, participants’ video interviews were uploaded to a YouTube channel as a resource for the disability sector and integrated within stories collected using the same methodology in previous years. Screenshot 1 below shows the original interview list, combined with additional materials organised into learning themes.

Screenshot 1: 2015 CLD leadership story-sharing interviews

The resulting repository includes stories from this project and others from previous similar projects to bring the total to over 200 interviews of disabled people or families caring for disabled people. These participants contributed stories of how they have overcome obstacles to create a better life for themselves and their families. This repository is the largest collection of stories designed for peer-learning that we are aware of, in the New Zealand Disability sector.

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RESULTS

Representation: ‘In my voice’

We first addressed the challenge of representation. Reflecting on the shortcomings of traditional qualitative approaches whereby researchers summarise people’s stories in writing, we decided to disseminate people’s stories in their own voice to address this challenge. The flipside of this was the need to design a platform whose ‘information architecture’ would be broad enough to host all stories, yet flexible enough to enable new people to easily choose to view those that are most relevant to them.

Wheatley (2006) recalls the genuine levels of energy and passion that can be evoked when people are asked about the meaning of their activities. The important part is to phrase a simple yet strong initial question: ‘What was a time you overcame an obstacle to help your child / the person you are caring for that made a difference in your life?

Overcoming barriers – the benefits of Individualised Funding (IF)

The key outcomes of the research fall into two main categories:

1. The emergence of four themes which identify the barriers that people have overcome

through the use of IF and how attention to these areas assist people to transition. The

consequence of overcoming these barriers has had transformational effects on people’s

lives.

2. The power of story-telling and its utility and effectiveness in assisting people to transition

to IF, and its effectiveness in inspiring people to action.

The four main themes that emerged as a result of the analysis: building natural supports and networks, mobility and technology, home of one’s own, productivity, reinforce earlier findings explaining the interest taken in these stories.

The participants identified that through the use of IF, they had overcome barrier in relations to these issues which were preventing them from fulfilling their dreams and/or living a good life, as defined by them. Often participants described the transformational effects of overcoming these barriers on the quality of their lives. Of particular significance with these results is the ability participants describe to contribute to their communities, as opposed to just participate in them, and to participate in social change. The empowerment within this aspect was transformational in that some found the freedom to construct rewarding social networks, to live independently, to start a microenterprise or to obtain meaningful employment. To view some of the stories told by the participants, go to tinyurl.com/virtual-Peer-Support.

The second key outcome of the research is the power of the stories to inspire action and assist people to gain confidence or learn. Families talked about how they dealt with the emotions that arise in the transition between receiving traditional support services to making lifestyle choices and then purchasing the support needed to implement these.

Families also talked about the impact that sharing stories has had on them. On a personal level, watching peers stories helped fight isolation and build energy and strength, whilst providing actionable ideas on improving their lives or that of the person with a disability they are caring

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for. Their motivation for sharing their own story was to help others overcome a situation they had gained some proficiency in. The whole experience of giving and telling stories built self-confidence and reinforced the feeling of belonging to a community they were proud to be a part of. Sharing stories encouraged people to be creative when in the past they have been used to being the passive recipients of services. Such rousing stories may hold the power to transcend low expectations and focus on a new stimulating future.

Illustration 1: Sharing stories to learn [as displayed on the UNESCO Internet Global Archives]

Many families commented on the power that stories have to build energy, self-confidence and strength to face future options. According to Hammond (1998) “When you ask people appreciative questions, you touch something very important to them. They don’t give politically correct answers, they give heartfelt answers because we ask soulful questions.” (p. 48).

Participants reported that the interviews were an exchange and that they enjoyed recalling experiences from which new future possibilities can be extrapolated. Some noticed that even though they already knew the stories, the interview brought the learning elements to the fore, ready to be used and embedded into current challenges. This story features as a New Zealand community video for other families to learn from. Illustration 1 features on the UNESCO Internet Global Archive at https://archive.org/details/SharingStoriesToLearn.

Illustration 2 summarises, using infographics, the demographics and statistics of the audience viewing these clips. The viewership of the tinyurl.com/Virtual-Peer-Support Youtube channel grew to over 30,000 with no planned promotion only people spontaneously sharing URLs of stories via social media arguably the largest compendium of such stories for New Zealand told by people in their own voice. On average, the channel has been getting 1,237 views/30days, without any kind of publicity.

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Illustration 2: INFOGRAPHICS summarising vital statistics of the campaign

Learning modes – or the way people learn by accessing the material, are also worthy of notice:26% were sent the link by someone; 23% viewed from embedded players on sites they were visiting; 12% searched for such stories and 19% accessed the video via YouTube referral, after they finished watching something else. Indeed, because this channel has so many related topic clips, the referral screen from YouTube often features mostly – if not all as in illustration 3 below. Hence this remarkable fact: 31% of people accessing these clips are made up from people actively searching on YouTube or being referred to by YouTube – a third of our audience self-refers online.

Illustration 3: Example of a YouTube referral screen

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Consent as engagement To start explaining the rapid uptake rate of these stories, we interviewed our participants about their experience with the platform. The people we had interviewed recounted the effect that being interviewed and viewing their own video clip had on them. Participants reported two kinds of effects. One group started watching other stories after reviewing their own. Then finding stories that could help someone else in the family or another peer, they forwarded links to them. These actions are represented by the Google Analytics in Illustration 2; 26% were sent interview links by someone and another 23% viewed the interviews from a site other than YouTube as a starting point. A second group shared their own stories in social media sometimes generating a sizeable amount of interest – because the clips were reaching deep into their social networks – namely, to people that were already interested in their stories. But then, where we were able to follow the traces of these stories we witnessed an exponential rise in popularity of the clips. As an example Janson and Davies (2012) reported that one participant video clip posted in the morning on Facebook generated 11 views in an hour, 75 by the night and 2 weeks later, the reach had ballooned to 2578, as reported by the Facebook aggregated metrics.

To best use its responsive capability, the interactive coaching tool can be accessed via a computer, a tablet or where broadband may be an issue, stories can be accessed via mobile phone. Indeed, results are registering a growing group (26%) accessing them via mobile devices, representing an increase from the 15% who last year accessed these stories via mobile devices. The remaining 74% of people access these stories via computer. These examples mirror snowball effects that happened from the interviewing process itself – though this was not a planned outcome.

Collaborative building of the Interactive Coaching Tool The interactive coaching tool was designed to facilitate access to new knowledge – bearing in mind that relevance changes with time and new experiences. It can be accessed directly by end- users or facilitated via professionals.

We designed a visual display to integrate the themes brought about through data analysis and describe how although this transition is a process with different steps, they are but not necessarily taken in the same order by different people.

Janson et al. (2007) showed that people need to identify with the storytellers to engage with these stories for a call to action to be most powerful, and highlights that more empirical evidence of the identification process is needed. This is one reason why it is important to have a large number of stories on the platform – with diverse people and experiences.

What participants have told us, however, is that they connected well to the people in this project, mentioning that some videos on other websites sound staged, particularly when a narrator describes context or gives additional details to complement a disabled interviewee or family member.

“Some organisations show video clips on their websites that sound like advertising

clips – I don’t watch those – they were clearly scripted and carefully staged – I feel their learning material is washed out and weak. I like the interviews on your YouTube

channel – they feel authentic – it’s people like me who talk” (Andy)

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Authentic, un-staged stories combine to widen the families’ repertoire of choices about their future and inspire them into considering possibilities they may not have previously imagined. It can also transcend their prior expectations from the disabled person they care for. Research (Jameson, 2005) has shown how families may develop low expectations from what their disabled family member could accomplish, hence stories from people who have overcome these challenges represent unique learning materials.

This story selection mechanism was designed to facilitate access to specific issues. Hence, what is novel about the Interactive Coaching Tool is that the thematic analysis also provides the mechanism for story selection – for professionals to access during or after a conversation with a family – or which individuals can access directly. Illustration 4 shows the design of the Interactive Coaching Tool. This flexible and nimble tool can be emailed to participants who choose to learn this way. Upon opening the pdf file, participants can then click on hyperlinks that lead to the corresponding playlists.

In conversation with families, professionals, such as Coaches, identify what areas that are most relevant to families and can show people how to access this narrative. For example:

1. Where people have not yet had the opportunity or ‘head space’ to look at the possibilities open to them, a professional can present an introductory trailer clip by clicking under the thinking balloon/ black list of interviews. This gives an overall idea of the possibilities w i t h s e l f -s u p p o r t ( 11min). This clip was produced following our earlier research showing that people don't fully understand the concept of self determination until they have experienced it themselves.

2. People share with a Coach their concerns or ideas related to one of the four themes which is top of mind for them. Coaches then identify the relevant theme and click on the corresponding speech balloon.This leads to a YouTube playlist hosting all stories that have experiences related to this theme. If for example a person mentions that they would like to create a micro- business, a coach can point the person to the playlist describing this specific theme. The topic of Productivity introduced by Terry who is passionate about helping people launch their micro-business and has, as an outcome of this Consumer Leadership programme, embarked on co-designing a micro-business diploma for people with disabilities with a tertiary institution.

Illustration 4: Interactive Coaching Tool (ICT) visual allowing

topic selection

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3. People mention a specific example fitting with one interviewee experience. If for instance a person talks about feelings of isolation and caring for children with high and complex needs, then they can be pointed to projects that they could join. Of particular interest might be the leadership of parents of very high need children, who cannot speak or advocate for themselves. The work in progress playlist is bottom right (later to be included as a sub-theme in section 1. ( “Supporting Networks”) of the Coaching tool and its first initiative Creative Recruiting is introduced here.

This research touches on a large body of evidence describing the social impact of transitioning to self-direction. At the top left of the tool is the community contribution option, which pulls all the themes together. All the interviews are about ways that people have found to make a difference by living a meaningful life.

The peer review process itself became part of the Leadership Development process as reviewers took ownership for disseminating the tool in their circles. More than 80% of reviewers asked for permission to send this tool to their colleagues, organisation libraries or existing peer-support networks. For the purpose of our activity – disseminating family knowledge about creating a good life for disabled people, we view this enrolment as a sustainability feature creating momentum around our original effort and gaining in strength and stature through numbers. Bearing similarity with the self-perpetuating action of the YouTube mechanisms as highlighted earlier, the act of disseminating a nimble, linked pdf design can facilitate wider uptake allowing end users to easily access a rich body of stories about complex issues.

DISCUSSION When sharing stories about Individualised Funding, individualised supports and lifestyle arrangements, peer video stories can encapsulate the essence of learnt lessons about control, flexibility, choice and freedom of time. Filmed narratives that integrate multiple voices and perspectives can provide qualitative data on social impact. Peer video narratives can make significant contributions in two ways: inspiring people into acting to achieve better life outcomes and guide people to start on an action path. These stories can also provide the building blocks for sector leadership (development) who want to consciously grow self- determination and personal authority on both personal and professional levels. Technology can potentially enable this e-learning process by tackling the challenge of how to distribute those stories most beneficial for audiences with diverse needs at the time they need it most.

Our experience of transitioning from traditional service-based philosophies clarifies the fact that no single approach fits all needs. These transitions therefore are opening the potential for novel ideas to achieve better outcomes for the people we serve. In fact social innovation is not necessarily about devising groundbreaking ideas, rather more often about applying old ideas to new issues. Creativity however is useful in personalizing delivery and support models.

Recording people’s stories in their own voice and then disseminating them to others who want to learn from their experience is a novel way to approach the need for new knowledge in the disability sector. It builds on the natural fit of storytelling and the collaborative economy models, which use the internet as a means to reach and distribute further. This research procedure was tested by Janson and Davies (2013) to capture consumer voices for change and tested a methodology to capture video stories shared by parents of disabled children during a leadership development programme. The project tested a participative evaluation process to represent the diversity of consumer voices and share insights with families, consumers, planners and funders. The present project built on this

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and scaled it up. What we did not expect, however, was the pivotal engaging impact that the consent process would have. To our knowledge, this is the first time that such an effect is reported.

Outcomes for the disability sector Duffy and Fulton (2010) recommend that rich resources be hosted on the internet in places where people can easily find them in order to strengthen information networks and go as far as asking “are there any internet-based initiatives for sharing local experiences?”(2010b, p.16). Peer video stories encapsulate the essence of learnt lessons about control, flexibility, choice and freedom of time (Berk, 2009). Filmed narratives that integrate multiple voices and perspectives can provide qualitative data on social impact. Peer video narratives can make significant contributions in two ways: inspiring people into acting to achieve better life outcomes and guide the way forward to start on an action path. These stories can also provide the building blocks for sector leadership development with evidence of people having consciously grown self-determination and personal authority on both individual and professional levels. Technology can potentially enable this e-learning process by facilitating the distribution of those stories most beneficial for audiences with diverse needs at the time they need it most. One clear conclusion from this research is the need to provide a wide and diverse range of stories to facilitate viewers identifying with the storytellers. The latter are the positive role models that Murray (2011) alludes to as central to leadership building for families with disabled children. The factors that best support user identification with the material have not yet been fully researched to date, but we hope this project outlines the need for more research to document this process.

Sharing stories in the collaborative economy The P2P Foundation (2012) described different models of sharing. What it describes as “Sharing to the Second Degree” requires both cooperation and extensive planning. Compared to sharing at the first degree, these sharing models generally involve a larger number of people and/or sharing things with more value. They entail a higher degree of cooperation, more planning, a greater investment of time or money, a certain amount of administrative detail-work, and some level of agreement among sharers. Our model involves some modification to the theory and practice of collaborative economy as proposed by Botsman and Rogers (2010), in particular regarding their conceptualisation of reputation capital, rising in importance, much as credit rating has been. For people to trust a stranger with money or goods, we need to have some information that enables trust-building. In the case of storytelling, our ‘consumers’ invest not money but time to listen to the stories proposed – what would prompt them to invest their time to listen to particular stories? Potential for future research directions lie with the investigation of what would replace ‘reputation capital’ to build this trust.

Acknowledgements

The author would like to acknowledge the support from Manawanui InCharge for their thought

leadership and vision in assembling this programme, the Consumer Leadership Development

grant awarded by Te Pou funding to Manawanui in Charge for this project, and the SPARK-NZ

Knowledge Translation mentors for their input in designing part of the storytelling methodology

used. Finally the author wishes to deeply thank Michael Kendrick, Kendrick Consulting

International for his ongoing support within the project’s Advisory Group.

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Appendix A: In-depth examples

Additional materials are included in this Appendix to describe specifically how consumer leaders engaged with the programme. Additionally, this encapsulates significant the outcomes achieved which complement those described in the body of the paper.

Taking personal responsibility Addressing a specific concern Families with disabled children face many specific concerns. As an example the question of a person’s living situation is on every family’s mind: Where and in what conditions will my child live? Addressing these issues on video is helpful as per our audience’s feedback.

Case Study: The house purpose-built for Jack Joanne: Her family built a fit for purpose house for their young adult son to use for respite: he gets time away for himself in a place that is colourful, safe and attractive. The old cowshed was renovated for this purpose and Joanna acknowledges the help received from the community around, including the building permit authorities and trades people. But this goes further: The “house that was built for Jack” (Screenshot 2) is packed with embedded technology. For instance a big screen TV is Skype-enabled so the family can keep in touch and see Jack even when away and there is a multi-colour dynamic pad near the

toilet to encourage toilet training. Having used IF for seven years the family has had “time to dream” what is the best way to integrate Jack. Realising that it was not possible for Jack to be fully integrated in the community, the family decided to bring the community to Jack.

Neighbouring bands rehearse concerts on the lawn, a team of students are interns on the premises using the facility for training in their respective specialties, and support staff are encouraged to bring their families and children most times, so that Jack is constantly surrounded by people and activity. Finally, “Jack’s party pad” will be rented out – for instance to some service provider for extra respite space and this will not only contribute to the community but also help pay for these expenses! http://www.youtube.com/watch?v=wZcE64BxVjo

When people get more exposure as a result of addressing specific concerns, they can become a ‘go to person’ with whom others consult. Their profile often rises leading them into the next stage – that of becoming a role model.

Screenshot 2: An interview about a dream home -based respite facility

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Becoming a role model At what point does an anecdotal success occurrence become so widespread that we can talk about leadership development?

Case Study: Andrea and Tyler planning a transition from school

Since becoming an Enabling Good Lives client, Tyler's life (Screenshot 3) has changed dramatically and exciting possibilities are opening up to him. He is thinking about how to spread his wings. There are many options and choosing between them might be the biggest challenge! But this is preferable to not having enough options. http://www.youtube.com/watch?v=DAphEptN5rY

Parents build knowledge from sharing with other parents because they know better than anyone the part of the narrative that is important as either an actionable or an inspiring element. This is very different to getting information from service providers. Andrea wants to contribute to the disability sector by sharing the knowledge she has gained as well as keeping a watch on higher level activities, such as policy and networks. http://youtu.be/A12omkDzq5k

These mother-son stories were watched over 100 times soon after going online.

Screenshot 3: A specific interview viewed as part of a Playlist

Taking charge to address a gap: Creative recruiting Irene and Sue, two mothers of young adults with high and complex necessity identified a fundamental need to re-examine the process of recruiting and training great staff for people for high and complex needs and decided to raise visibility for this marginalized group and their families:

“I've listened to a UK presentation on Creative Recruiting a couple of times today since our great

session this morning. I'm feeling really inspired and can see the outcomes of this impacting positively on individuals, families, future PA's and the community as a whole.The outcomes are going to be such a win-win for everyone involved. There are many conversations to have in the next few weeks around planning and rolling it out in early 2015. Sue and I are getting together very soon and I'm sure we will

be coming back with many questions and ideas and decide to launch our initiative in 2015. Thank you for sharing this fantastic opportunity!”

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Following on from a group session organised in Christchurch with Gaye Leary from Manawanui, the mothers recorded their own interviews, committing onscreen to do something to fill this gap by starting the STARS Training [https://www.youtube.com/watch?v=hNIWetknLog]. This single video clip and its earlier draft were watched over 200 times at the time of this report, leading to a large number of discussion throughout the country. The initiative will be further documented throughout 2015, however for now it is important to note that it was publicized widely by its supporting organizations (Te Pou, Manawanui InCharge, EGL, Fast Track Inclusion Trust). Organisers have received multiple offers to help develop it with families via emails and social media-even before it is launched. The New Zealand Creative Recruiting is introduced at http://fasttrackinclusiontrust.blogspot.co.nz/2014/09/launching-creative-recruiting-idea.html

Case Study: Sue wants to be the voice for the unheard

Parents of children with high and complex needs face significantly different challenges than others in the disability sector. The financial implications of care 24/7 are astronomical. Even if they have joined the Enabling Good Lives demonstration, families need to make difficult choices as to where to spend their budgets. Sue did not find any suitable residential care for Jesse - in some of the facilities she visited, she found residents in their pajamas at 4:30pm. But other arrangements she was considering involved spending most of Jesse's budget on 'putting a roof over his head' leaving no provision for staff to support him during the daytime. In this journey there have been many low points for Sue, but in meeting with like-minded parents, she has recouped energy and motivation and been able to reconnect with her true passion- becoming a voice for those who cannot speak in their own voice. This interview was combined with other relevant ones into a playlist called: A Voice for the Unheard.

http://www.youtube.com/watch?v=XpSlfXMtofM&feature=youtu.be

New media and social networking: building engagement Novel phenomena are emerging where a new kind of engagement is secured by using a combination of new media disseminated via social networks. This data is detailed in the infographics shown earlier in this report (Illustration 2). The examples below document some of these stories:

Building on the advantages of new media to appeal for resources

Case Study: Kahu appended her interview clip to her application for a mobility grant Kahu is a natural community leader. Since she became disabled through an accident, she needs help to get a mobility van so she can carry on her community building work. Amongst other activities, she is adding to Maori sign language by designing new words based on Maori tikanga. Kahu describes how IF has given her the basic level of independence by choosing her own support worker she is no longer dependent on service providers' schedules, she has gained 'logistics' independence and she now seeks mobility independence. The video media allows her to present her case both verbally and in Maori sign language, including demonstrating new Maori signs that she helped develop [http://youtu.be/Rw4YmO 5U0Hs].

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Sending video media and reach a global audience: from Kerikeri to Google

Case Study: From the confinement of his room to a global team Oliver decided where to live and with whom to share his flat. This was made possible through Individualised Funding, which enabled Oliver to hire his own support and allocate his resources to create the lifestyle he wants. A talented musician, he has just published his first album. Oliver’s clip [https://www.youtube.com/watch?v=cBHhOeUkGoY] was shared globally from one inspired ‘geek’ to another, finally reaching all the way to the Google team – as a result Oliver was personally contacted by the Google Head of User Experience and invited onto the Trusted User Usability Testing group. Since then, back home, his music was chosen to be played during the Northland Innovation Awards ceremony.

Hyper-communicating to increase local support: A new mix of local and virtual New communication channels offer new speed and reach.

Case Study: Suzy leads a local group with hyper-communication to solve issues fast A short Facebook chat, originally planned between 3 people ended up as a 1 hr 30 event attended by 34 people. This is because all group members receive real time notifications from the group. Because all group members have equal chance to feel fully involved no matter when they join the chat – this can ‘draw people in’ if the topic is of interest to them:

"I haven’t enjoyed such a conversation in a long time – sitting in my PJs with bad hair… I learned more about IF and EIF than in all meetings I have attended up to now! I

went to walk the dog and forgot to take my mobile with me. I was so sorry to have missed the chat when I came back home! "

This chat window dialogue is now part of the group and anyone can go back to it for tips, addresses, ideas and URLs exchanged during the live event. This conversation has become part of the group's resource files.

In another instance, a mother posts a question on the Facebook group just before driving to the first meeting with her IF coach. Ten minutes later, as she parks her car close to the meeting place, she checks her phone to find 5 comments of peer parents who have listed suggestions and questions to clarify with the coach. The mother is thrilled and posts after the meeting that the advice she received proved invaluable.

In another case, two parents who had never met find during a chat that their children (a son and a daughter) would be compatible friends. Both 22 year-olds are passionate about cricket and plan to meet to attend a World Championship together.

Social Media therefore, offers a unique opportunity to reverse decreasing face-to-face workshop family attendance trends &complements other channels for disseminating information and forming relations. Because this Facebook group is closed, I have not posted screenshots for the above example.

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Mentoring disabled people to take control: Micro-business case studies Should disabled people wait for a job interview? The unemployment statistics amongst disabled people show that such a job interview may never materialise. Recent work trends show that disabled entrepreneurs lead the way, showing their peers that they can take an active part in their future, rather than waiting passively for employers to reach out to them. Case Study: Terry co-designs a new course curriculum with a Polytec Terry’s passion is to help disabled people create their own micro business. Terry is ready to empower people to build on their passion “let’s bring your talents to the fore,” he says. Terry can share his experience to help others overcome challenges to become self-employed with the support they need to help them succeed. “Do you need a challenge? I am here to help.” Says Terry. http://www.youtube.com/watch?v=Dgu_8bFkn2U&list=PLDD624B41AC3CC874

Following the recording of his video clip, Terry started collaborating with a polytech to shape a tertiary curriculum so that disabled people can learn about self-employment and get credit for it at the same time.

Co-creating and peer reviewing a novel communication model Consumer leaders were able to ‘test-use’ and peer review the story sharing dissemination model. In order to assist with this review process, the following resources were put together:

Permission to dream: Introducing a new concept Transition to Individualised Funding can create some confusion in people’s mind – because as a mother put it:

"Until then I was used to people always saying ‘no, no, no’ to me; so when we realized that we were in control, we were a little confused. At first, we did

not realize how life changing this was going to be."

Case Study: Introduction to IF A mini-documentary to introduce first time users to Individualised Funding was compiled (Screenshot 4 below) and is available at: http://youtu.be/e0VvrTeCJts

Screenshot 4: First Introduction tool

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Sharing multiple opinions and ideas in context: mini-doco Some info can be introduced via a documentary that summarises the various perspectives that different people may bring.

Case Study: Mini-doco mashup of personal and organizational stories Screenshot 5 below shows a ‘mashup’ (re-mix of interviews) about life transitions and overcoming fear to reap rewards on the other side: [https://www.youtube.com/watch?v=z98DScCoPjw]

Screenshot 5: Second Introduction tool

Opening a range of possibilities Case Study: INSPIRED: Anna discovers new possibilities for her children Meeting like-minded people helps build resilience for Years to come. As a mother of two autistic children, Anna’s mental resources were wearing thin. A series of meetings (Illustration 5) with a family who helped their autistic son reach global success helped Anna draw additional inner strength and faith in a bright future for her own emerging artists. These meetings resulted in Anna’s daughter’s art being exhibited at the Auckland Outsider Art Fair, Anna considering registering her daughter at a distance tertiary art course, and culminated in the two young artists and their families meeting again at the Attitude Awards. They celebrated with the other 600 guests, the talented disabled artists that trail blaze success pathways for others to follow suit.

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Case Study INSPIRING: Helen’s son lives a meaningful, rewarding life

Helen’s son has fully engaged in the community since leaving school. He holds both paying and volunteer positions. He also enjoys taking part in the youth activities organised by his church and has grown to know peers who are also members of these groups so well that he no longer needs a support worker for most of their activities. The family uses different funding pools to pay support staff and help him integrate. http://www.youtube.com/watch?v=r0DdKlsq52c

Offering more in-depth information about an identified theme Example: In conversation the Coach identifies what is the first issue that the family wants to deal with-is it the lack of support or is it in the home and living situation? Is it the work and productivity realm? They can then share a playlist organized around the themes identified in the visual. http://www.youtube.com/user/ecosynergygroup/playlists?shelf_id=11&view=50&sort=dd

Drilling deeper and targeting specific information Example: In conversation the client mentions that they would like to create a micro-business. Share a specific interview, for instance Sandra who explains the road travelled by her family to assist her high and complex needs set up her own microbusiness.

Case Study: Sandra is planning a micro-business to secure her daughter’s future Sandra is planning for her daughter’s future. Because Prue has little communication and needs support around the clock, her parents planned for a house that she can move into when she is ready. They are also building a micro-business around Prue’s interests and skills. Observing that Prue really liked the routine of washing, hanging and folding, Sandra is building a small operation for Prue to wash tea towels for a few businesses in her area. This is made possible with the help of support workers who can assist her. Sandra is also interested in the social aspect of this business. In the future Prue will interact more with customers and this will be a meaningful part of her life as well as a contribution she can make to her community. Sandra also reflects on the specific challenges of rural life for farming families. http://www.youtube.com/watch? v=GpvJu4ueMPY

Screenshot 6: A popular playlist [627 views to-date]

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The “productivity” playlist (Screenshot 6) is very popular amongst our audience and is a resource that a number of professionals are using to work with disabled people when developing their career plans.

Collaborative reviewing also significantly fostered community uptake. There are numerous examples of community members or organisations using our video materials to better support the disabled people they are working with. One Community Living Career Development Broker is using the productivity playlist she peer-reviewed. She wrote back to us:

"Just wanted to thank you for your presentation, which I attended with two of our clients. I found it very informative and I believe that working with people we support – there is a clear path for them trying to be entrepreneurs due to the many barriers facing them in a normal job market. I am with the Employment Options team and your feedback came

at just the right time… with the resources available to clients. "