What happens after Early Intervention, when children transition to school?

We have been piloting a number of programs for parents of school age children and with youth:

The Child Voice Program that parents do together in preparation for their support role in their child's education journey. We trialed it in 2021 with our British Columbia partner, Kinsight.

The Student Voice Program, which parents do together with their child's educators. We trialed it in 2020 with funding from the NSW Innovation Funding. See description and results here.

Keys 2 Lead, Youth Leadership programs for youth from 11 to 29 years old.

A Child Voice model for children with disabilities to thrive in the future

A child’s voice is a phrase describing an authentic involvement of children in their life decisions to become independent young adults.

Teaching children to recognise and use this is one of the most important roles for parents. For example, we start with familiar ideas such as buying food or choosing clothes to wear and increase complexity as they get older.

However, research has found that it is hard for children with disabilities to have their opinions heard when it comes to planning services and support. It happens to many children in schools, too.

Parents’ opinions are usually included in developing learning plans with professionals, but without the child’s participation, they may inadvertently set goals that do not use the child’s strengths and interests for the best outcomes. It’s never too early to start giving children opportunities to make choices.

Developing a Child Voice model

In response to this gap between policy and practice, Plumtree CEO Sylvana Mahmic and Plumtree Learning Research Director Dr Annick Janson have developed an evidence-based Child Voice model. It draws from their lived experience as a parent raising a child with disability.

The model promotes coaching children in the art of making the right choices and including them in planning with professionals as soon as possible. As understanding grows over the years, they become more confident and capable of taking control of their life’s direction. The parent’s role gradually changes from coach to consultant.

Teaching our children how to recognise and use their own voice is our core business and ultimate goal as parents

At our 3rd alumni conference in October 2019, our Q&A Child's Voice Panel built on the statements collectively formulated during the last two years' panels.

Parents forging relationships or leaning into theirpartnerships with professionals, model the right partnerships (reliable alliances) for their children.

To help develop a coherent evidence-based model, we are conducting a literature search. We also asked our panel to contribute from their lived experience by answering the following question:

• Q1. What do we mean when we talk about “including the voice of children”?

• Q2. As parents, why should we bother? What is the point of including our children and listening to them, especially when they are young?

• Q3. What are some practical examples of the how, or the ways in which we could include our children’s voices in therapy, home, activities or community?

• Q4. We hope that our children can experience independence away from home and from us, their parents. But how can we ensure that our children’s voices are heard when we aren’t around?

• Q5. Some parents might be thinking, “My child is too young” or “my child doesn’t speak”. How do parents of young or non-traditionally communicating children “hear” and include their child’s voice?

• Q6. How do we ensure our children are genuinely integral members of their team? And how do we set them up for success to become the head (CEO) of that team in the future?

If we start with the end in mind and educate children to optimize their independence, then we must start as early as possible to coach them in the art of making (the right) choices and taking decisions.

When our children are very young, we start with ideas and situations that are familiar to them – from buying hot chips in the neighbourhood café and choosing the clothes they wear to gradually increasing complexity and alternatives.

To some this may sound obvious, however, the mere fact that we have to raise the question about a child’s voice stems from the recognition that our children’s voices are seldom included in planning processes that result in services, support or even therapy for them or ourselves.

Indeed, the world seems to just be waking up to the fact that they need to listen to we parents as the experts of our children. This is a recognized significant policy-practice gap: although including parents’ voices in processes such as Individual Education Plans is becoming regimented by law, and in many cases, it has turned into a paradoxical situation: Research shows that in some cases, to ensure that a parent’s voice is included, professionals may inadvertently put pressure on them to formulate goals in situations that are not conducive to authentic goal setting.

The idea of amplifying a very young child’s voice stems simply from the fact that we have not yet reached a situation where our children’s voices are listened to, heard or taken into consideration.

A Fellow of the Citizen Network, Wendy Perez said: Just listen – to their words, actions, body language, to the multiple ways they communicate all the time, what they want and what they don’t want. This way we can coach them into getting gradually better at communicating what is important to them and develop as self-advocates.

Are we yet at the point where the professionals we work with are in listening mode?

Some are… others need to be brought on board – that is why we need to ‘lean into’ partnerships with professionals, translate our child’s voice at the start of this process until they can take over as their understanding grows of how important it is to communicate their needs and wants, and that they take control of their life’s direction.

It is both our role and job description to make sure our children’s voices are heard, but also to coach them through the process. As they grow up, our roles will change, as they do for all parents and all children.

This model was sent for feedback to professionals and parents: One parent commented that for her the beginning stages of this journey include on the child part "I communicate what is important to me" and on the parent side: "I commence building my child's capability to self-advocate".

Following a System-Informed Positive Psychology (SIPP) framework (Kern et al., 2019) we hypothesize that working with parents will touch one of the leverage points of the disability system (Senge, 1990). Kern et al define SIPP as aiming:

"to cultivate the wellbeing of human social systems, enable system co-evolution, and create positive unimagined futures. As such, it is not value free, but rather is a normative endeavor, driven by collectively negotiated, agreed upon, and embodied values of a given system. SIPP aims to acknowledge and illuminate the complexities and inter-relatedness that exist in this world, in ways that empower individuals towards collective action, rather than helpless avoidance. And SIPP aims to foster a personalized, collective, strategic, and systemic approach to creating the conditions that allow human social systems to thrive, while simultaneously empowering individuals within the system".

Our ongoing activity can provide the dynamic link between theory, research and practice as advocated by Kern et al. because our Design-Thinking models continuously review and reconsider assumptions to interrogate our theory of change and the 3 parts of the system that it addresses: families, emerging leaders/peer workers and professionals. We act on these 3 levels and carry out research to identify new patterns when they emerge, for instance a change of mindset with:

• parents/families about growing their agency to make a difference in their child's life

• peer leaders who emerge from new learning and act to make a difference with other families

• professionals who recognise the changes in the above 2 parent groups and are prepared to learn from families who lean in to new partnerships with them.

We agree with Kern et al that:"Studies are needed that carefully test psychological processes under controlled laboratory conditions, which are then replicated across multiple settings, multiple populations, varying conditions, shifting time periods, and with varying levels of control, identifying boundaries and conditions of causal processes. Rigorous field experiments informed by specific theories of change are needed, complemented by qualitative and mixed method approaches and longitudinal designs that inform those theories. Priority should be given to multi-method, multi-modal, multi-site approaches" and are carrying out the types of multiple interventions that they refer to, in order to test our hypotheses.

October 2019

Support from professionals

The initiatives were acknowledged at a symposium that brought together Australian and international academics, researchers, parents of children with a disability, and professionals from early intervention and disability support services.

According to Associate Professor Peggy Kern of the University of Melbourne’s Centre for Positive Psychology, amplifying the voices of children combined with the Now & Next program’s notion of family empowerment could inform changes to the NDIS in the future.

“When you look at the [current] legislation, it is adult formulated,” she says. “We must widen opportunities for children to have a say at different ages and build it into NDIS planning and funding procedures. We need to describe what that looks like, what professionals and parents need to do at different points for the child to participate.”