We designed two professional development workshops that give early intervention staff firsthand experience of the family-centered processes and tools that we use to engage families in the Now & Next program.

Growing family commitment
What parents can teach service provider

A versatile visioning tool
Working with parents who have a learning disability and at school

A practical way to plan
Personal insights of a professional

Our international research program
Families use more empowerment language with professionals

New partnerships with families
Families apply their learning beyond the program sessions

The Now and Next experience is ‘sticky’Why this approach resonates with how organisations want to partner with families.

Now & Next is a by families for families program co-created by two mothers who have adult children with disability and co-designed with families. Facilitators of the program are trained in peer work in order to build a pipeline of family leaders who have the skills and confidence to support families through a wider range of peer work roles.

With a grant from the Innovative Workforce Fund in 2017, Plumtree undertook a project to research, document and develop resources to support the introduction of families as peer workers in early childhood intervention organisations. Research drew from the experience and evidence of peer workers in the mental health sector, and those working at Plumtree. The project promoted peer workers as a new, untapped workforce that should be used more in the disability sector.
The resources produced include:

• At a glance: Families as peer workers in Early Childhood Intervention
• Literature Review on peer work in mental health and ECI
• Guide and resource toolkit to support peer workforce integration in ECI organisations
• Report on peer worker use in ECI organisations by the Centre for Disability Studies, University of Sydney
• Knowledge Translation strategy and action plan to disseminate key project messages

‘A commitment to family-centred practice is the cornerstone of the National Guidelines Best Practice in Early Childhood Intervention (ECIA, 2016), which encode the principles that professionals use to guide and improve their family-centred practice. However, relying on the role of professionals to increase family-centredness without addressing the dynamic role that families can play in this practice under-utilises families’ potential to contribute actively to the parent-professional partnership. We need to identify and develop new ways to harness the involvement of families since, ultimately, it is they who will make the deepest impact on their child’s development throughout their child’s life. Peer work is one important way we can activate family engagement. When peer work is done well, it has the potential to create a mindset shift through the sharing of personal experiences and perspectives. The use of paid peer work in early childhood intervention (ECI) is not widely prevalent yet it is precisely at this time that families would benefit from systematic connection with knowledgeable peers.’

Sylvana Mahmic CEO Plumtree Forward, Guide and resource to support peer work in ECI organisations 2018.

Listen to a podcast about the project broadcast by Scotland’s Iriss FM by Dr Melanie Heyworth and Sylvana Mahmic from iriss.org, or click on the illustration below.

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, even though we know that starting this leadership journey early offers significant promise of fundamental and long-lasting change for families. In an attempt to address this we developed a program with a potential solution to this problem.

The Now and Next program has emerged in the context of the Australia-wide rollout of the National Disability Insurance Scheme (NDIS), a national health-care initiative, which promotes independent, outcomes-based management of funding plans for individuals with disabilities. There is a demonstrated need to place a greater focus on the role of families in participating as partners in early childhood intervention by engaging them as early as possible.

During the initial period after diagnosis, families often become intensely focused on gathering information, and finding and then engaging services, in an effort to maximise the benefit of early interventions for their child. Many families look to increase therapy services at this time, and fail to appreciate that the single most significant impact on the child, is the family (Mahoney, 2011). Years may pass before families recognise the importance of investing in their own capacity, and even then, learning how to do this is an ad hoc process with scarce resources to assist them. While some capacity building initiatives are provided by advocacy organisations, these do not specifically target families of very young children (Escalon, 2016). By integrating family capacity building activities within early childhood intervention services, targeted, intentional programs can reach and impact this population, as we will show. It is in the long-term interest of families that they have multiple opportunities for capacity building from the earliest possible point, which will lead to better outcomes for the child and family as a whole.

Some theorists have also outlined the potential for an unequal power differential between professionals and families raising disabled children, in which the former are held as the preeminent ‘experts’ who have all or most of the answers. For professionals to shift their power from expert to embrace a family’s expertise and perspective, they must adopt Dunst and Trivette’s theory (2009) that family capacity building can be undertaken through the Family Centered Approach. This radical change has not yet spread in the sector. The challenge is to make it happen now and to change the parent-professional power relationship, requiring professionals to forgo some of the power they have wielded until now (Allread, 2015). As partners families also have a responsibility to change the status-quo and create effective partnerships with their professionals.

Family-centred practice is central to the best practice approach in early childhood intervention (National Guidelines on Best Practice in Early Childhood Intervention, 2016). Research on family-centred practice has led to an update of the model to highlight the element of intentional capacity building as a mediator of the benefits for intervention with families (Dunst & Trivette, 2009). The capacity-building paradigm uses a strengths-based approach to focus on building the supports, resources, experiences and opportunities for parents, children and families. However, despite over 20 years of evidence reinforcing this approach, it is still common for families to experience traditional deficit-based models where professionals are situated as experts to the detriment of parental expertise.

Family-Centered Practice research has highlighted the element of intentional capacity building as a mediator of the benefits for early intervention with families (Dunst & Trivette, 2011). By integrating family capacity building activities during the early childhood intervention period, we have shown that targeted, intentional programs can reach and engage this population. It is in the long-term interest of families that they have multiple opportunities for capacity building from the earliest possible time as this will lead to better outcomes for the child and family as a whole. 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.

In our first year of operation we carried out a number of pilot programs to test family engagement. The 7 mins video clip below presents the feedback from parents who participated in these pilots:

We have professionals who have completed Pictability Facilitator training in Australia, New Zealand, Canada and Finland. Representatives of these countries engage with us at a strategic level. Our next step is to connect all the professionals as a communities of practice so that they can continue their discussions on building family capability through participation.

Our aim is that trained professionals communicate and collaborate. These practitioners will plan joint training and research activities. Some people are interested in publishing in peer-reviewed journals, others prefer to focus on setting up best practice in their respective organisations. We support both these directions and are planning to carry out some International Master Classes.

These collaborations have started informally through international research initiatives headed by Dr. Annick Janson, our Research Director. Please contact her on annick@egl.ac.nz for more information or to register interest.

Work on building this community of practice is in progress.

One goal of the Now and Next program is to identify potential peer leaders, and to recruit and train them into the Peer Facilitators team. This ‘leadership pipeline’ not only allows Now and Next to continue to be led by enthusiastic and impassioned parent peers, but also offers opportunities for parents to re-enter the workforce in ways that are flexible and are meaningful and relevant to their current life experience.

Our Peer Facilitators have naturally taken on leadership roles, both within the Now and Next program, and as an adjunct to it: for example, one peer facilitator has taken her interest in the NDIS to guide other parents with their pre-planning; another facilitates the Circle of Security Parenting program; another writes blogs, grant applications and a variety of other texts for and on Now and Next; another using her theatrical bent to film and edit vlogs of interest to the group; and yet other facilitators (who are fluent in languages other than English) run Vietnamese, Korean and Arabic Now and Next groups.

These Peer Facilitators have become the public face of Now and Next. Not only do they attend conferences of relevance to NANA, but they are also invited to present at conferences. For example, two facilitators talked about Now and Next at the 2017 ‘Belonging Matters’ Conference in Melbourne in 2018. Facilitators have joined their service provider’s management [plumtree.org.au] to accept awards for the Now and Next program (like when we won the ECIA NSW/ACT Excellence Award for Outstanding Family-Centered and Culturally Responsive Practice), and have represented our initiatives during meetings with local MPs.

Whilst its peer workforce was initially established in response to a need for peer facilitators for Now and Next, Plumtree has since recognised the broader potential of a peer workforce in the ECI sector, in which attracting and retaining allied health professionals and educators is increasingly challenging. With the NDIS rollout in Australia, the current traditional allied health workforce is unlikely to meet demand for allied health services. The peer workforce also offers a complementary and necessary link to the support families provide each other, especially in the early years. Since 2015, then, Plumtree has increasingly identified and maximised the many benefits that peer workers can offer to families and the allied health workforce. Thus, Plumtree’s peer workers now facilitate many new peer-led service delivery options to build family capacity and have also offered services in multiple languages to ensure culturally-sensitive service options are offered to culturally and linguistically diverse (CALD) families who might otherwise be excluded. It is in this context of an active peer workforce that Plumtree has undertaken this project.

When families share with each other, they build capacity as a group. New evidence informed processes can provide the basis for beginning to build family understanding. However, continuity is required to maintain the momentum and to ensure sustainability. Harnessing this collective energy is required 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 to continue to create a better future for their child and their family. Our work outlines the benefits of families coming together as early as possible in their journeys to take control of their future.

Once families have completed the group program, they join the Now and Next Alumni Network which provides an ongoing mechanism for peer support amongst families who share the common experience and understanding offered by the program. Plumtree is incubating this social movement to harness the collective capacity of families at the earliest possible point in the families’ experience. The network’s collective agenda and long-term vision is to build a social movement to inspire a new generation of parents of young children with disabilities to lead their family’s progress, drawing from a sustainable and deeply embedded peer-networked foundation of knowledge, capacity and creativity. The network’s first Family Conference took place in April 2017.

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). Our mechanism offers a structured approach to developing a leadership pipeline where families of young children are identified as potential peer leaders, then provided with training and support to become paid peer mentors to deliver a set curriculum. Moreover, graduates of the program become alumni members who have access to regular online and face-to-face opportunities to connect, which provides them with ongoing information, inspiration and support into the future. This alumni network provides a sustainable peer-led vehicle to keep families connected to one another through intentional capacity-building opportunities. 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.

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Family Conference

The Family Conference brings together, informs, and inspires families of children with disabilities and their allies on taking the lead and building a good life.

Created at Plumtree in 2017, the conference is planned and run by families, for families. Originally held at our centre for 50 parents, the event has since moved online with attendees from over Australia.

Conference guests include professionals, parent peer workers, as well as families, and young people with a disability.

Their uplifting presentations educate and empower attendees on topics from achieving great goals, getting the best from the NDIS and professional partnerships, building family agency, and more.

See the Family Conference resources here

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Collective benefit mindset

When individual wellbeing improves we are able to turn our attention to the wellbeing of the collective. This concept known as the Collective Benefit Mindset was developed by positive psychology and is based on Carol Dweck’s fixed/growth mindset approach.

We are building our publications on how a collective benefit mindset might emerge concurrently with the formation of our emerging alumni groups. These include the following papers and presentations:

• Janson, A., Mahmic, S., Benge, T. & Herbert, C. (2018) How a transformational Collective Benefit Mindset experience prompted parents raising children with disability to launch a peer network. [Submitted for peer review; pre-publication proof]
• Benge, T., Herbert, C. & Janson, A. (2019) Family-lead peer network formation: Translating knowledge across cultures. International Society on Early Intervention (ISEI), Sydney, Australia (June 25-28).
• Janson, A., Mahmic, S., Benge, T. and Herbert, C. (2018) Positive parent education for families raising children with disability: Supporting the emergence of a Collective Benefit Mindset. New Zealand Association of Positive Psychology 4th Biennal Conference in Positive Psychology, University of Waikato, Hamilton, New Zealand (24 Novembre).
• Barton, H and Benge, T. (2018) Now and Next: A novel partnership between families and professionals. NZDSN Wellington, New Zealand (April 11-12). Hori Barton is a father who completed his training as a Peer Facilitator and continued to facilitate his first Now and Next program shortly thereafter. Please click on the video below to see Hori’s presentation at 46’48.

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Evaluate

We have selected a suite of robust assessment tools to evaluate the impact of the Now and Next program on participants. We are also undertaking a range of qualitative and quantitative research projects that together will help us formulate our Theory of Change.
The Centre for Community Child Health (the Centre) at Murdoch Children’s Research Institute (MCRI) was commissioned by Plumtree to undertake a process and outcomes evaluation of the Now and Next program. The evaluation looked at data for the 15 Now and Next groups that were run between January 2017 to March 2018 and involved 154 families of young children birth to eight years old who have disabilities or a developmental delay.

The purpose of the evaluation was to examine the Now and Next program and identify participant outcomes to inform decision-making about the future strategic direction and implementation of the Now and Next program. The evaluation used a mix of qualitative and quantitative methods to undertake both a process and outcomes evaluation of the Now and Next program. The process evaluation looked at whether the Now and Next program had been delivered as intended, if it was reaching the target groups and how participants rated the program. The evaluation looked at participant outcomes, in particular, if participants had achieved their short-term goals, whether participants had become empowered and if participant wellbeing had grown. Data was collected by the program through online surveys at the beginning and end of the program and during the program by the peer facilitators of the Now and Next program using a participatory action research approach.
External evaluation reference: Moore, T., Fong, M., & Rushton, S. (2018). Evaluation: Now and Next program. Plumtree Children’s Services, Inc. & Murdoch Children’s Research Institute. Parkville, VIC: Centre for Community Child Health. Download this report here.

For a full list of our publications see here: https://tinyurl.com/NN-Theory-of-Change

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Demonstrate Outcomes

As our work progresses we report on outcomes. Three examples of building family capability through participation have emerged to date:

1. Families take the lead

As families build their leadership and also continue doing this together in multiple ways, they have found new approaches to express their leadership through collective capacity.

The two Now and Next alumni conferences were an opportunity for families to meet, discuss and formulate the imperative for them to take a lead in contributing to the parent professional relationship. Alumni member Dr. Melanie Heyworth recorded and developed these conversations which were endorsed by participants at the conferences.

• Read about the Parent-Professional Relationship Statement which was developed by families for families at the first Now and Next Alumni conference 2017.
• Read about the Families Leaning into Relationships with Professionals statement which was developed by families for families at the second Now and Next Alumni conference 2018.

2. Nurturing family leadership

In September 2018, Plumtree hosted a 2 day workshop facilitated by Dr Michael Kendrick where we discussed new ideas to build capacity of families who were navigating the Early Childhood Intervention stage. The workshop highlighted the strength in nurturing family leadership and also created a blueprint for change within the ECI sector to support families as their leadership goes from strength to strength.

Participants in the 2 day workshop:

• Discussed the role of families and service providers in nurturing family leadership.
• Identified the need to promote new approaches in ECI and to expand these innovations with integrity.
• Documented next steps to further new approaches state-wide, nationally, and internationally.

Plumtree places great importance in incubating such new approaches to support family and peer leadership in the community. We continue to invest in our peer team and programs as this movement gains momentum on a global stage. Dr Michael Kendrick is an internationally recognised educator, advocate, consultant and author.

3. Researching participatory pathways

What does it mean for families to lean in and take an active role in relationships with professionals? We are testing practical new ways for families to participate in this relationship and be supported by professionals who embrace this new level of involvement.

Pictability is a participatory tool that supports greater involvement. The role of early intervention professionals is then to guide families to write their vision statement and then coach them to present this to people in other environments, so that they build confidence to share their vision and establish this as a foundation for parent-professional collaboration to achieve their short and long term goals.

We call this novel partnership the Family Participatory Pathway. This approach is based on the work of Dunst and colleagues which recommends that ECI professionals extend beyond ‘relational’ skills to coaching families in ‘participatory’ family-centred practices. Participatory practices are defined as “behaviour that actively involves family members in (a) informed choice and decision making, and (b) using existing strengths and abilities as well as developing new capabilities needed to obtain family-identified resources, supports, and services”. Participatory practices also include “practitioner responsiveness to and flexibility in how help is provided to children and their families” (Dunst and Trivette. 2009).

Parents of young children undergo at least two main transition points: transition to early education settings and transition to school. Each transition offers the opportunity for parents to gain skills around formulating their vision and the type of support that best match their needs. These are opportunities for families to rehearse participatory skills in a safe and supportive environment. At each of these transition points, families will be guided to:

• Formulate their vision statement using elements of the Pictability and Goal to Action tools used during the Now and Next program
• Rehearse presentation of their vision to a practitioner in a supportive environment

This research project is being conducted in Canada with Kinsight and was presented at the Early Years Conference, Vancouver [Jan 30 – Feb 1 2020] by Williams, G. & Janson, A. . It is titled: Testing a novel parents’ participatory pathway.

4. Collective capacity

Promoting family leadership through new parent led organisations.

Currently, in Australia there is no parent led organisation that supports families of very young children, which is not disability-specific. Plumtree has received funding to auspice two new parent led organisations which will be fully independent once set up.