Sylvana Mahmic, CEO of Plumtree delivered this speech at the launch of Reframing Disability and Reframing Autism at NSW Parliament House November 28th 2019. Both organisations have been incubated and auspiced by Plumtree.
“Your child will never walk, never talk, attend their local school. I am sorry, your child has Downs Syndrome; Autism; a permanent disability. Here are the contacts for professionals and specialist organisations who can help.”
I regularly hear families describe these devastating conversations. In fact, I heard the same thing, 26 years ago. It’s time to change. We can do better because families expect more for their children.
We can give families positive, hopeful and informed messages that reflect contemporary approaches to disability. And we must do this right from the start.
We want insights from adults who have a disability; there’s a lot we can learn from them. We want to work in partnership with professionals to co-design better ways to empower families, who then empower their children.
Why is this important?
46% of NDIS participants are under 18 years old. Most of the decisions around their lives, including planning and spending their funding, rest with their family.
13% of NDIS participants are children birth to 6 years old.
These statistics matter for the future. We need to ensure scheme sustainability and most of all, the best life for these children and families. There are also many children who will not be eligible for the NDIS. They need the right start, too.
A family’s journey should begin with messages of hope and a positive future. These include concepts of citizenship, acceptance and purpose. It’s important to know the expectations of a good life for their child, such as friendships, belonging, independence and inclusion.
These messages must be delivered to families of young children consistently, by specialist services, the broader community, and importantly, by peer-led organisations.
Reframing Disability is a family-led organisation for families of young children with developmental delay or disability. It aims to transform their experience from the earliest possible point, so they can build the best life for their child. This is done by:
- shifting perceptions of disability
- recognising children’s strengths
- setting a vision of the future
- supporting belonging in the community, and
- empowering families through knowledge and connection.
Reframing Autism is an organisation run by and for autistic people, their families and allies. It is dedicated to creating a world where the autistic community is supported to achieve genuine acceptance, inclusion and active citizenship. It celebrates and nurtures neurodiversity, autistic identity, and autistic culture.
The path ahead
Together, these two new organisations will work with and learn from the existing rich group of disabled person and family-led organisations. Their aim is to highlight the unique perspectives of families who have young children with developmental delay or disabilities.
They will create practical opportunities to keep families heading in the right direction based on contemporary approaches to disability, neurodiversity and family leadership. They will also ensure that families continue to learn at their own pace, over time, starting during the early years and building throughout childhood.
Families make the difference, and they will be empowered through strengths and capacity-building. This is a long-term investment that benefits the child, family, community and government.
At Plumtree, we have long believed and invested in building the capabilities of families who have a child with disability or developmental delay. When families come to Plumtree, we aim to provide information, support and connect them with each other. Our measure of success is when families no longer need us.
We believe that these two new organisations will help families on their way, beyond Plumtree and other specialist services. They will continue to create a future of possibilities for their child and the whole family.
We are honoured to have been a part of incubating these two new organisations. We will continue to support them for the next 12 months, and they will be completely independent from Plumtree in mid-2020.
Empowering families to empower their children. I invite you to support these two new organisations to reframe the views of families and the community.
Other speeches from the launch at NSW Parliament House:
For more information about these two new organisations:
Reframing Disability: reframingdisability.com.au
Reframing Autism: reframingautism.com.au