Now & Next: Capacity building through family leadership, peer work and education

Sylvana Mahmic, CEO, Plumtree Children’s Services, was invited to speak as a Keynote at the New Zealand Disability Support Network 2018 Annual Conference. You can read the full speech here.

Tena koutou, tena koutou, tena koutou katoa. I would like to acknowledge people with disabilities, families, their communities and the professionals here today. To my parents: thank you for your support and guidance. NZDSN, I appreciate your generous invitation to address this national conference and to be part of your journey to the summit.

Congratulations on a wonderful two days. I have enjoyed meeting many of you and learning more about your approach to supporting people with disabilities and their families here in New Zealand. I’d like to share a story today of how our organisation reimagined the very first experiences of families. It was achieved through a family-leadership approach based on positive psychology, peer networks and strengths-based practices.

Our story is about making change real—the theme of your conference—and I share it with you in the hope that we can make it happen for everyone. We share a common aim as families and professionals: to improve the lives of children with disabilities so that they grow up to reach their potential.

Our countries stand at an important crossroad. There is an opportunity to reimagine and create a better future. In Australia under the National Disability Insurance Scheme, and here in New Zealand through your system transformation.

As a mother of a young man with a disability, I imagine a future where families start their very first experience from a position of hope, potential and expectations for a full life. A future where they are encouraged to expect opportunity for their sons and daughters. Where children are supported to have friendships, a sense of belonging and purpose. A future where governments, services providers, professionals and communities support families to aspire for the very best, and actively assist them on how to make it a reality.

Why does this vision matter?

We are planting the seeds in early childhood. With the right information and support, we will set families on an upward path. Their expectations, nourished by practical and planned opportunities, will keep heading in the right direction.

This is our responsibility because they are the future.

Families are ready to learn about building capacity. They can do it at their own pace, over time, with planned and sustained information and support during early childhood and school age years. This approach, with proper funding, empowers families with the necessary expertise to raise their children in light of contemporary approaches to disability. It focuses on inclusion, independence and self-management. This is a long-term investment that benefits the child, family, community and government.

Parents want the best for their child. But right now, let’s honestly ask ourselves: do early experiences nurture, encourage, and intentionally guide them to build this future? Or are they left to find their own way, learning through the school of hard knocks, with each family ‘reinventing the wheel’ by learning on their own?

Where are we now?

When families with very young children are diagnosed with a delay or disability, they are usually referred to specialist services. As a parent and CEO of an early intervention organisation, I know there are excellent professionals who can provide support.

However, professionals can only do so much. Don’t forget: families have accumulated a different-yet important set of skills through personal experience. Professionals come and go, but the family is there for the long term.

We believe that the skills provided by peer workers complement those of professionals. Families learn through experience and time, and this knowledge is important to other families. Trusted, knowledgeable peers can help others consider disability in a contemporary light through a focus on inclusion, independence, education, and, importantly, wellbeing.

Starting from a positive and hopeful perspective can change the way families see disability, and their child’s future in the community. Yet in Australia, this important first step is not addressed in a satisfactory way. Families are left floundering to learn these lessons by themselves. It can take many years.

My son Karim is 27 years old, and we have been helping him self-manage his individual funding since 2009. What I learnt during these years was that self-managing individual funding was fairly straightforward. The challenging part? Our family needed a methodical way to learn how to help him have a good life—but it didn’t exist back then.

It would have been helpful to be guided and inspired by the experiences of other families and people with disabilities. To hear positive stories about possibilities for the future. Sure, we heard the occasional good story or attended a wonderful one-off event. It was ad hoc instead of planned, structured and layered over the years. We needed more of what’s happening now.

Families need a methodical approach to build their capacity right from the start, so they have the potential to embark on a new, positive path. A peer network is an important way to share this wealth of accumulated knowledge and experience. It is knowledge that is deeply trusted.

In this environment, they have the safety and support to transform their own understanding and expectations. They are given time to adjust their way of thinking. Doing this with knowledgeable peers is critical. It ensures that families have the right mind-set to support their children to grow into adolescence and into confident, independent adults.

Providing this very early on for children and their families is an investment in the future.

From vision to reality

Families are powerful, yet they are an untapped resource. We decided to change that at our organisation. Using our expertise in early childhood and family-centred practice, along with co-design principles, we developed Now & Next, an award-winning eight-week program. It aims to help families thrive through teaching them how to create a vision, set goals and make them happen through a family leadership and a peer-led approach. The program is delivered by passionate peer workers, who have received training and leadership development skills to support other families.

This is the first program for parents of children with disability, to our knowledge, which uses positive psychology to help them think, learn, act and achieve positive outcomes.

Participants learn to take their goals to action using tools we have developed specifically for families with young children. They include a mindfulness colouring-in book and a specially developed eBook, in which progress is recorded. We create an environment for families to share, discuss and learn from each other. Everyone has an opportunity to give to others.

We provide the space and time for celebration with each short-term goal achieved. Everyone learns to identify their character strengths and how to use them for positive outcomes. Through realising the power of their own agency, they learn to improve the quality of partnerships with professionals. Finally, we focus on wellbeing through the five PERMA elements of Positive emotion, Engagement, Relationships, Meaning and Achievement that increase family wellbeing.

A fun start

We created Pictability, a new way for families to create a vision for their child, family and self. In contrast to traditional approaches to planning, it is done completely by the family—it’s their process.

They are in the driver’s seat, they know how to drive, and now they know where they are going.

We know that families with young children tend to dedicate all their time and resources to help their child. Pictability helps them to see that the whole family is important. Feedback has been positive: it is a fun, engaging experience. It generated goals that parents hadn’t thought about before, gave them an opportunity to voice very long term goals and have them acknowledged. The vision setting experience prompted families to be adventurous in planning and more ambitious in the expectations they set for their child. Pictability gave them a rare opportunity to stop and think.

We are researching the program to better understand its impact on families; early results are positive and promising.

What do families think about Now & Next? 

Families tell us that it gives them hope, direction and practical skills to transform their family and child.

As one mother says: “Now and Next allowed us to find that team again. For the first time in ages, we began to dream together again. We weren’t in a mode of catastrophe and panic, which had dominated most of our discussions post-diagnosis. We were able to sit down together and talk about what we wanted for ourselves, our child and us as a family. Working with the same objectives in mind gave us synergy. We had decided on these goals together, so we were both equally invested in making them happen. Our child’s progress is not just reliant on mum or therapy. It’s about making the whole family dynamic work.”

A father says: “Every family should do the Now and Next program as early as possible. It’s life-changing.”

What do our staff think?

Staff members who embrace family-centred practice know that it is the family who make real change. Let’s hear what one speech pathologist says

Occupational therapist and educator Valda was delighted to see how Pictability invited families to relax in the planning process. “I have found the Individual Family Service Plan process often uncomfortable, as families can be unsure of where to start. Pictability enables people to explore before deciding, and explore beyond their child.”

For speech pathologist Maggie, “learning to use Pictability has given me a tool and structure to facilitate a process that enables families to develop and reflect on aspirations for their child and their family. It helps me better understand families’ priorities and resources as a professional. Their participation in the process equips many families with the impetus and direction to take the next steps.”

Nevertheless, we are realistic: one program and one vision-setting experience is not enough to provide every family with the skills and knowledge needed throughout their child’s life. But having a good start does wonder. It must be followed up with more opportunities to continue learning. Importantly, it is the families themselves, who must take action to keep on developing their skills.

This is why we created an alumni network, so families can support, encourage and inspire one another. Once families complete Now and Next, they become alumni. It provides a framework for them to continue developing skills as their priorities move from early childhood to primary school and adolescence. The alumni’s 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.” This is about creating a new community of empowered, knowledgeable families.

We often hear that Now and Next shifts their mindset. Newly empowered, they start fresh conversations with professionals.

An example of this is the Parent-Professionals Relationship statement. It was collectively developed by Now and Next alumni at their first by families, for families conference, and recently launched internationally through the Citizen Network. Alumni outlined elements they believed were important in good partnerships between professionals and families. Critically, they recognized the need for families to step up in the partnership, lean in and do more to best guide and utilise professional support, so that everyone works towards the same outcome.

Let’s listen to what the families say

Now and Next is also a leadership pipeline. Potential leaders are identified, recruited, trained and employed to fulfil a range of paid roles, including the delivery of the Now and Next program. We are intentionally growing the number of trained families and investing in their leadership. Families need other families. Together they are a powerful, knowledgeable, collective community.

As of March 2018, over 300 family members have taken part in the Now & Next program. This represents over 5,000 hours of capacity building. We have trained 14 peer facilitators who speak six languages, and this number is growing. Participants include a high rate of culturally-diverse families and fathers, whose participation exceeds 30%. This is remarkable, given that research shows fathers’ participation in early childhood intervention at under 5%.

I want to acknowledge my New Zealand colleague, Dr Annick Janson, who has worked with us to co-create the program. She has brought her considerable expertise in corporate leadership and applied it to developing family leadership. I would also to thank CCS Disability Action, who founded the first New Zealand Now and Next program, and the Mackenzie Centre, which hosted it. The program is also going to Finland in May.

To the future

These are just some examples of how we have challenged our work to focus on investing in families and their children. We need more new, innovative approaches that transform the lives of people with disabilities and their families, and policies to make them happen. We also need communities to play their part in welcoming people with disabilities and see the value they bring to society.

My vision is for a time when referring families to peer networks will be seen as equally important as referring them to professionals.

Realising this needs consistent, sustainable planning and delivery in a variety of ways. Activating family leadership is not the responsibility of one organisation or one program. This vision requires a plan, commitment and funding so that everyone is engaged and aligned with this goal.

We have the potential to build this with the NDIS in Australia and here in New Zealand with your system transformation. I encourage each of you to think how you might take part.

To close, I would like to leave you with a story from a parent, because these are the people we all care about. This mother says:

“I felt very isolated and depressed last year. Even though my husband was supportive, he was always busy—full-time uni during the week, working two casual jobs in the evening and the weekend to keep us going financially. He was never home, and I was alone most of the time with the two boys 24/7. Days felt very long; I was barely keeping things together.”

“At the end of last year, I was feeling so down that he told me he thinks we should go back home to our country. He was scared that he was losing me. He said even though there will be no formal support and no school for our son, at least we can be together as a family. I felt like a failure.”

“Then everything changed because I joined Now and Next. My whole mindset changed. I realised I did not fail my family; we had achieved quite a lot in a year. We just never got to talk about or acknowledge our progress, so I felt very unmotivated to keep going. I realised I am still a strong and intelligent woman who used to never give up. Why am I giving up now, after going through so much and already had come so far? Since Now and Next, our life has changed far better, not because my kids stopped being demanding or autism got easy, but because I started seeing things from a different angle. Without this experience, we would not be where we are now.”

Similar families are coming to your organisation. Are you ready? Let’s make this change real together.

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