Family Leadership Pathway

Our Peer Workers and their Leadership Journey

Enhancing parent participation through family leadership

Our goal is to empower families to play a more active role in promoting positive outcomes for their children with developmental delays or disabilities. Our approach is based on the fields of positive psychology, family leadership, family-centred practice, and strengths-based approaches. We believe that leveraging parent-peer workers and peer networks can better support families and their children to flourish.  

Our personal and professional experiences indicate that incorporating peer perspectives, particularly those of parent-peer workers, has a significant impact on families. By leveraging their unique insights and experiences, we can transform the existing parent-professional partnership in disability care. This approach has already proven successful in the field of mental health, where the inclusion of peer workers is now considered a fundamental part of the employment landscape. 

Our Approach We believe that by involving parents as peer leaders, we can bring about three important changes. First, we help parents shift their focus from seeing their child's challenges to recognizing their strengths. Second, we empower parents to take action and make positive changes for their child and family. Finally, we aim to improve the confidence of parents when working with professionals. We want to change the traditional parent-professional relationship where professionals are seen as the main agents of change. 

Peer-Led Program We have co-designed the Now and Next suite of programs which are led by parents who have firsthand experience raising children with disabilities. These parent-peer leaders work with families to set goals and create a vision for their child's future using our bespoke vision and planning tool Pictability. The program consists of eight sessions where families learn important skills and receive support in a peer-led environment. The sessions cover topics such as setting goals, discovering strengths, focusing on what can be controlled, and improving partnerships with professionals.  

Parent-Peer Workforce We believe there is a valuable untapped resource in parents themselves and support a greater role for parent-peer workers through a family leadership approach is proposed to equalise the parent-professional partnership. By training and supporting parents to become peer workers, we can bridge the gap between families and professionals. We have established a pathway for parents to become trained facilitators, starting from their participation in the program. They receive training and guidance from experienced parent-peer workers. So far, we have trained a significant number of family leaders and program facilitators who have made a positive impact in their own families, communities, and advocacy roles.  

Professional Development for Change We believe that professional development plays a crucial role in bringing about positive change. To challenge existing barriers, we use an experiential approach that helps professionals see things from a different perspective. Our two-part training program involves professionals experiencing a novel planning tool personally and then receiving training to facilitate the planning process. They also gain theoretical knowledge about positive psychology principles. This training helps them reflect on the necessary paradigm shift to enable them to advance the implementation of their family-centred practices. 

Measuring Positive Psychology In our program, we measure the positive aspects of parents' experiences using established scales and tools recommended by experts. We assess participants' wellbeing before and after each session using the Session Ratings Scale (SRS), which measures wellbeing across four dimensions: individual (personal wellbeing), interpersonal (family, relationships), social (work, school, friendships), and overall (general sense of wellbeing). Higher scores indicate higher levels of wellbeing. 

We also gather comprehensive information about participants' wellbeing, hope, and sense of empowerment using surveys. These surveys include established measures like the PERMA profiler, which assesses positive emotions, engagement, relationships, meaning, accomplishment, as well as negative emotions, physical health, loneliness, and overall wellbeing. Participants rate items on a scale from 0 to 10. We also evaluate hope using the Adult Hope Scale (AHS), which measures pathways, agency, and overall hope. Additionally, we assess participants' perceptions of community support using questions derived from the Psychological Empowerment Scale (PES). 

Evidence of Positive Change External evaluation of our program involving 150 participants showed a high level of success in helping parents achieve their short-term goals. Over 90% of participants achieved all three of their set goals. The program effectively empowered parents and led to statistically significant increases in hope, empowerment, and overall wellbeing. These results are supported by our data collection of 899 parents using the same measures. 

Success and Expansion Our approach has been successful in Australia, where we have supported the establishment of two organisations—one focusing on the early years and the other led by individuals on the autism spectrum. These organisations provide peer support and promote family leadership. We believe that by expanding the role of parent-peer workers, we can challenge unhelpful paradigms and improve the overall disability care system. 

Conclusion Our mission is to empower families and change the way disability care is approached. By leveraging peer networks and involving parents as leaders, we can make a real difference in the lives of children with disabilities and their families. Our approach has already shown promising results and has the potential to transform the disability care landscape. Join us in this important journey to create positive change for families and professionals alike.

Why Family Leadership?

Some parents of children with a disability or developmental delay may stand back and let service providers do the work. That’s understandable because therapists and other professionals are important—but they are a part of a bigger picture.

When children are little, family leadership plays a big role in building a good life. Parents see themselves as experts, too, with many skills that help their child develop. They understand that service providers are one part, not the focus, of achieving positive outcomes. Parent peer workers are an emerging workforce with training and lived experience in disability who can help families nurture these leadership values.

Peer workers, other professionals and families of children with disability or developmental delay attended an IIDL workshop, hosted by Plumtree, to discuss how family leadership can be activated during the early childhood years. IIDL (International Initiative for Disability Leadership) is a global forum dedicated to building effective leaders among disability peer networks, service providers and policymakers, and sharing innovative practices and resources.

Activating family leadership involves a system-wide change. Messages of hope and possibility upon diagnosis instead of the deficits, and a connection to a peer worker or peer-led service can be life-changing for families.

Peer supports are valuable because all families can access them, regardless of NDIS funding. With lived experience in raising a child with disability, parent peer workers can establish an authentic connection, and help in areas such as emotional support and sharing practical information. Their work complements the services of therapists and other professionals.

When families take the lead, they can envision the best outcomes for their child and align school and other services to achieve them. Strong family leadership also nurtures leadership qualities in their children.

Directing a peer family organisation

Melanie Heyworth, trained as a Peer Worker after completing the Now and Next program. She pursued her leadership journey and founded Reframing Autism which she co-directs today. Mel is passionate about creating a better world for herself, her children, and the Autistic community. Mel wants to bring parents of Autistic children to a more accepting, optimistic and hopeful way of parenting. Listen to her Podcast conversation with Sylvana Mahmic co-founder of Plumtree Learning.