Authors

Melanie Heyworth, Plumtree, Marrickville, NSW, Australia

Sylvana Mahmic, Plumtree, Marrickville, NSW, Australia

Annick Janson, Victoria University of Wellington, New Zealand

Corresponding Author

Correspondence concerning this article should be addressed to Annick Janson, Victoria University of Wellington, New Zealand

Email: annick.janson@egl.ac.nz

Abstract

This paper examines a unique, peer-led group program for Australian families of young children who have developmental delay or disabilities. The program, Now and Next, builds on best practice research into family-centeredness, and is the first totally “by families, for families” program to be offered in Australia and worldwide. Now and Next challenges the traditional “grief” mindset, and replaces it with understandings of overwhelm and growth. It supports families to engage in authentic and creative visioning for their disabled child and themselves, to set effective and achievable goals, and to plan for the transformation of goals into results. It moreover builds family capacity, facilitating genuinely family-centered and family-driven relationships with professionals, and disrupting the power imbalance between families and professionals by empowering families with agency. Alumni of the program continue to be part of this peer network after the formal conclusion of the program. By utilizing the diverse strengths of its Alumni members, the Now and Next program is emerging as a valuable leadership pipeline, acting as a mechanism to identify and train peer leaders to champion and sustain improvements to family participation in the disability sector, and to cultivate family leadership and peer networks, which have the potential to create the impetus for a social movement led by families.

Introduction

For many years, practitioners have been grappling with the challenge of how to build leadership in families with young children with disabilities and developmental delays. This article describes a potential solution to this problem by examining the evidence-informed group program called Now and Next, its role in developing a leadership pipeline, and the emergence of the first Australian peer network for families of young children who have developmental delay or disability.

Capacity Building and Family-Centered Practice

It is well accepted in the disability sector that families need to be engaged as active partners in their children’s early childhood intervention (ECI) as soon as possible. However, several factors limit families’ ability and willingness to build their own capacity and leadership in the early years post-diagnosis. Families, usually unaware of their own potentially significant impact, often become intensely focused on interventions and look to increase therapy services (Mahoney & Perales, 2011). Families also often have only limited meaningful input into their child’s interventions (Lee, 2015), and are beholden to “professionals” because professionals are considered the preeminent “experts”. Indeed, families are rarely offered the relevant services to support capacity building: the few capacity building initiatives that exist do not specifically target families of very young children (Escallon, 2016). Professionals also impact families’ drive to build their own capacity. Many professionals misinterpret families’ feelings of overwhelm as grieving or denial (Allread, 2015; Kearney & Griffin, 2001), and advice is usually given within a “deficiency approach”, with professionals emphasizing a child’s weaknesses and undermining families’ abilities to make the right decisions (Janson, 2015). A family-centered approach is central to best ECI practice (National Guidelines on Best Practice in ECI, 2016), and research consistently indicates the need for intentional capacity building for families (Dunst & Trivette, 2011). For such best practice to be achieved, however, professionals must embrace a family’s expertise and perspective, and they must forgo some of the power they have wielded until now (Allread, 2015). Families, too, though, must accept and build their own capacity and leadership, and it is this transformation on which Now and Next focuses. Authentic partnerships can only happen when both service providers break away from the tyranny of the grief models, and when families build agency: these conditions must be fulfilled simultaneously (Moore, 2012).

Now and Next: A Solution

The Now and Next program is an award-winning peer network and family leadership initiative for parents of young children with disabilities and developmental delays. It provides a transformative opportunity for families to inform, support and motivate each other to aim high and see new opportunities for their child now and into the future. Now and Next operates on 3 levels, as:

• A 9-week creative learning program by and for families with young children with disability and/or developmental delays. The program facilitates parents to support and motivate each other to explore opportunities for their children through a manualised and reproducible process. Using engaging resources to transform their vision into goals and actions, they share strategies and record outcomes via photos, video, audio and text through a bespoke multimedia app, to celebrate and reflect on successes and on next steps.
• A mechanism to identify and train emerging leaders. As the program unfolds, emerging leaders amongst participants are identified and offered training to deliver the program. They get paid during training and for subsequent facilitation work. Now and Next thus builds a team of peer facilitators who share their knowledge whilst growing positive leadership within their communities.
• A growing social movement. The long-term vision of participants is to inspire a new generation of parents of vulnerable children “to lead their family’s progress, drawing from sustainable and deeply embedded peer-networked foundations of knowledge, capacity and creativity”. As they graduate from Now and Next, families join the Alumni group and continue to inform, support and motivate each other.

Based on evidence collected over six years, the Now and Next program was developed to build family capacity and decision-making supports. Through our research, the authors, alongside families, co-developed the Now and Next mechanism to engage young families, based on the PERMA wellbeing and flourishing framework (Seligman, 2013).

The potential for positive psychology to influence ECI practice has been attested (Johnston, 2006). As an extension to positive psychology, the Post Traumatic Growth (PTG) concept (Roepke & Seligman, 2015) offers an appropriate and beneficial way to see beyond the “grief” model, whilst still acknowledging the challenges of families (Lopez & Kerr, 2006). PTG interventions target growth using strategies that gently elicit progress without dismissing suffering or attributing it to personal failure (Roepke, 2015), instilling hope as a mediator of change (Snyder, 2002). Now and Next extends this PTG concept to parenting young disabled children by showing families how they can actively benefit from adversity (Jarden, 2009). Now and Next, then, aims to replace the “grief” paradigm with theoretical constructs drawn from positive psychology (Damon, 2008; Seligman, 1990, 2011; Seligman & Csikszentmihalyi, 2000), which provide a robust foundation to understand the transformation from “grief” to “growth”. In Now and Next, families learn to develop an inspirational long-term vision for their child, and peers assist each other to build skills to achieve positive outcomes for their child and family. When developing Now and Next, we recognized that engaging in authentic partnerships requires a fundamental rethink of the initial planning sessions between families and professionals. But how could we ensure that families indeed take a lead role in the goal planning process? Our method involves creating a different space for families to go through a very creative visioning phase, to engage in dreaming for their disabled child. Families in Now and Next learn to communicate their goals clearly and to envisage the strategies that might be used to progress them. They plan how to rally natural and community supports to help them to fulfil their goals. Such “agency thinking” (Lopez & Kerr, 2006; Winter, 2013) equips families to exercise their natural authority (Kendrick, 1995). Thus, families report feeling empowered by the program and stimulated to start fresh conversations with professionals (Mahmic et al., 2015).

Given that there are few examples of professionals who have formed “authentic” partnerships with families (Gatmaitan & Brown 2015; Lee, 2015; Pang, 2011; Ridgley, Snyder & McWilliam, 2014), it is time for families to accept more responsibility. It is necessary for families to learn how to play their role (to “lean in”) in creating new paths for collaborations. Families emerge from Now and Next understanding the value of crafting more effective partnerships with professionals, and the significance of establishing new expectations to foster better outcomes for all stakeholders. Equipped with new knowledge, these families experience the self-confidence and impetus needed to form these partnerships and can further be enrolled to reach and teach other families in their communities (Janson & Davies, 2014).

Sustaining Impact: Alumni Activities and the Leadership Pipeline

Once families have completed the group program, they join the Now and Next Alumni (NANA) which provides an ongoing mechanism for peer support amongst families who share the common experience and understanding offered by the program. NANA’s collective agenda is to inspire a new generation of parents of young children with disabilities to lead their family’s progress, drawing from a sustainable peer-networked foundation of knowledge, capacity and creativity. This agenda stems from the fact that families are acutely aware that “professionals come and go – families are here to stay” (Antoinette).

NANA ensures that all participating families can periodically meet and continue growing their network face-to-face as well as online through social media. Alumni members have access to regular online and face-to-face opportunities to connect, which provides them with ongoing information, inspiration and support into the future. The NANA Network provides a sustainable peer-led vehicle to keep families connected to one another through intentional capacity-building opportunities. This Alumni engagement has already been evidenced with the Alumni organizing the first family conference of its kind in April 2017.

Another significant sustainability factor is the high father engagement rate in Now and Next. In contrast to evidence that fathers rarely participate actively and meaningfully in family capacity building (Dunst, Bruder & Espe-Sherwindt, 2014), our groups register from 23% to 50% participation from fathers, depending on activities. Participant fathers were acutely aware of the central role they play in their children’s education and the importance of preserving family units at risk in families raising children with disability:

It is important for me to stand up and be counted in my daughter’s life-- but I am aware that many dads find it hard to be involved… I want to play my part in bringing other dads along and supporting them.
Raymond

Importantly, when families share with each other, they build capacity as a group. Although families come to the program with varying initial degrees of agency, our research shows that there are many families that are ready to take the lead and bring their peers along with them. These families are akin to the “early adopters” reported in the innovation literature. It is imperative, then, to strengthen these natural leaders so that their impact is maximized: collective knowledge engenders strength in action and influence (Uditsky & Hughson, 2000).

We recognize that continuity is required to maintain the program’s momentum and to ensure sustainability of learning. To facilitate such sustainability, Now and Next identifies new family leaders and thus serves as a “leadership pipeline”. Participants who demonstrate leadership capacity and interest during the program are identified, recruited, trained and employed to fulfil a range of roles, including the delivery of the group program. Building family leadership allows leaders to take responsibility for their own actions, which in turn maximizes their impact on peer families, who they support to have increased agency and to avoid long-term over-reliance on the system.

Now and Next’s “leadership pipeline” represents the vehicle through which families rise as leaders and carry on their work together. Building this leadership pipeline is an important and demonstrated mechanism to recruit peer facilitators who will increase family presence and contribute to a stronger peer network for this age group. In turn, developing the leadership of families who have young children will create a significant impact on the long-term outcomes for children, families and communities (Moore & McDonald, 2013). Empowering families creates the environment where families act not only to advance the best interests of their child and family, but also to strengthen their capacity as a community. We must harness this collective energy to grow a network on which to build a social movement (Kendrick, 2010), and to create mechanisms to nourish and inspire families throughout the lifespan. Our work outlines the benefits of families coming together as early as possible in their journeys to take control of their future.

Conclusion

The learning described above is vital for change: as families internalize new possibilities, they commence the process of actively building the skills they need to participate more actively in the family-professional partnership. They then bring these skills to bear at each Individual Family Service Plan meeting, at each school Individual Education Plan session, at each engagement with allied health professionals, and in the many situations in which they will find themselves throughout their child's life in which they will have an active role in supporting the best outcomes for their child.

The result of this increased participation in family-professional partnerships, and of an attention to outcomes, leads families to drive change for their child. Such drive paves the way to a clearer focus on inclusion, curriculum and academic achievement, tertiary studies, employment opportunities, and ultimately to widespread attitude change when mainstream society witnesses children with disabilities achieving successes. Now and Next thus creates the very chain of events which creates good lives for children, and which will ultimately fulfil the vision that a significant proportion of adults with a disability will join the workforce. Further, Now and Next has developed a way to cultivate family leadership and peer networks, which have the potential to create the impetus for a social movement led by families (Kendrick, 2010).

Training to enrich professionals’ skills at building partnerships with families can only carry us half of the way. Families need to build the bridge from the other side and prepare themselves for this partnership, stepping into a new space and positioning themselves as active partners. This paper shows how families learning together can create new discussions with professionals to bring about new outcomes for their child and families.

References

Allread, K. (2015). Engaging parents of students with disabilities: Moving beyond the grief model. Improving Schools, 18(1), 46-55.

Damon, W. (2008). The path to purpose. New York, NY: Free Press.

Dunst, C. J., Bruder, M. B., & Espe-Sherwindt, M. (2014). Family capacity-building in early childhood intervention: Do context and setting matter? School Community Journal, 24(1), 37.

Dunst, C. J., & Trivette, C. M. (2011, May). Characteristics and consequences of family capacity-building practices. Paper presented at the Third Conference of the International Society on Early Intervention, New York, NY.

Escallon, E. I. (2016). Challenges facing the family movement today. Paper presented at Shaping the Future, Orlando, FL.

Gatmaitan, M., & Brown, T. (2015). Quality in individualized family service plans guidelines for practitioners, programs, and families. Young Exceptional Children, 19(2), 14-32.

Janson, A., & Davies, B. (2014, May). E-Peer support to build leadership in the disability sector. Paper presented at the Centre for Applied Disability Research (CADR) Inaugural Conference, Sydney, Australia.

Janson, A. (2015). Stories that build leadership in the disability sector. White paper. Retrieved from www.incharge.org.nz/?page_id=1377

Jarden, A. (2009). Post-traumatic growth: An introduction and review. New Zealand Clinical Psychologist, Autumn, 15-18.

Johnston, C. (2006, August). Robust hope: Finding a home for early childhood intervention in the new early years landscape. Keynote address presented at the Early Childhood Intervention Australia, Melbourne, Australia.

Kearney, P. M., & Griffin, T. (2001). Between joy and sorrow: Being a parent of a child with developmental disability. Journal of Advanced Nursing, 34(5), 582-592.

Kendrick, M. J. (1995). The natural authority of families. Crucial Times, Brisbane Australia.

Kendrick, M. J. (2010). Historical contributors towards increasing respect for the voices of people with disabilities in western societies. International Journal of Disability, Community and Rehabilitation, 9(1).

Lee, Y. H. (2015). The paradox of early intervention: families’ participation driven by professionals throughout service process. International Journal of Child Care and Education Policy, 9(1), 1.

Lopez, S. J., & Kerr, B. (2006). An open source approach to creating positive psychological practice: A comment on Wong’s strengths-centered therapy. Psychology: Theory, Research, Practice, Training, 45(2), 147-150.

Mahoney, G., & Perales, F. (2011). The role of parents of children with Down Syndrome and other disabilities in early intervention. In J. A. Rondal, J. Perera, & D. Spiker (Eds.), Neurocognitive rehabilitation of Down Syndrome. The early years (pp. 211-227). Cambridge Neurocognition Series. Cambridge, UK: Cambridge University Press.

Mahmic, S., Fahrar, I., Taylor, K. Adler, R., Leu, I., & Janson, A. (2015). Book Creator helps transform the therapy experience of families raising a child with disability. Retrieved from http://bookcreator.com/blog/2016/01/book-creator-helps-transform-experience-families-affected-disability

Moore, T. G. (2012, August). Rethinking early childhood intervention services: Implications for policy and practice. Pauline McGregor Memorial Address. Paper presented at the Tenth Biennial National Conference of Early Childhood Intervention Australia, and the 1st Asia-Pacific Early Childhood Intervention Conference, Perth, Western Australia.

Moore, T. G., & McDonald, M. (2013). Acting early, changing lives: How prevention and early action saves money and improves wellbeing. Prepared for The Benevolent Society. Parkville, Victoria: Centre for Community Child Health at The Murdoch Childrens Research Institute and The Royal Children’s Hospital.

Pang, Y. (2011). Barriers and solutions in involving culturally linguistically diverse families in the IFSP/IEP process. Making Connections: Interdisciplinary Approaches to Cultural Diversity, 12(2), 42-51.

Ridgley, R., Snyder, P., & McWilliam, R. A. (2014). Exploring type and amount of parent talk during individualized Family Service Plan meetings. Infants & Young Children, 27(4), 345-358.

Roepke, A. M. (2015). Psychosocial interventions and posttraumatic growth: A meta-analysis. Journal of Consulting and Clinical Psychology, 83(1), 129.

Roepke, A. M., & Seligman, M. E. P. (2015). Doors opening: A mechanism for growth after adversity. The Journal of Positive Psychology, 10(2), 107-115

Seligman, M. E. P. (1990). Learned optimism. New York, NY: Knopf.

Seligman, M. E. P., & Csikszentmihalyi, M. (2000). Positive psychology: An introduction. American Psychologist, 55, 5–14.

Seligman, M. E.P. (2013). Building the State of Wellbeing. A Strategy for SA. Adelaide Thinker in Residence 2012F13. Government of South Australia.

Seligman, M. E. P. (2011). Flourish. New York, NY: Free Press.

Snyder, C. R. (2002). Hope theory: Rainbows in the mind. Psychological Inquiry, 13, 249–275.

Uditsky, B., & Hughson, E. A. (2000). Family leadership development. Connections, 7, 2-3.

Winter, R. E. (2013). Empowering parents empowering communities. Report commissioned by the Murdoch Children’s Research Institute.

 

International Journal of Disability, Community & Rehabilitation
Volume 15, No. 1
www.ijdcr.ca
ISSN 1703-3381