There is nothing quite like the conversations I can have with another “mum” (definition of “mum”: the mum of a child with a disability). They are the perfect mix of irreverent humour, a load of product and service condemnations, some recommendations, the odd burst into tears and just the right amount of TMI (too much information.) To me, it is no wonder that the organisations that are getting the most positive attention and are thriving in the NDIS are those who I have come to refer to as “Insiders”. Insiders are organisations whose stories include a lived experience of disability. This seemingly unimportant detail translates into a different way of operating, communicating and participating that makes a relationship with them feel effortless.
These are what I see as the characteristics of an Insider:
Insiders are not afraid to be bold. These organisations don’t try to be everything to everyone. They’re authentic in their personality and their language reflects the way their target market thinks and feels.
Insiders talk to participants and their families like they’re people. They know from first-hand experience that there’s much more to a person than their disability. This allows them to connect with participants and families on the characteristics that make them who they are, such as their values, interests and goals. It is not all about functional impairment or diagnosis and support needs. They get us.
Insiders are not burdened by legacy systems, structures and culture. Their first port of accountability is to their customers, not a board of semi-interested stakeholders. Leaders in these organisation are not frightened of losing their jobs, they’re inspired to ride the wave of NDIS opportunity to change the lives of people with a disability. They live by the mantra “If at first you don’t succeed try, try again.”
Insiders have a vision for the world we are creating, together. They approach service design from a problem-solving perspective with the ultimate goal of supporting participants and their families to live good lives.
To give you an example- my friend, colleague and fellow “mum” Nicole Rogerson is CEO of Autism Awareness Australia. She built a very successful early intervention provider that she subsequently sold. Today, Autism Awareness Australia has a Facebook community of over 83,000 people. In addition to evidence-based outcomes, Nicole’s success is partly attributed to her commitment to providing a “soft place to land” for children and their families through peer support. Providing a soft landing for participants and families requires the authority to speak, act and support with honesty and fearlessness. It builds resilience and hope within people and their families, enabling them to get on with their life.
Other examples include peer groups that reach out to people with newly acquired spinal cord injuries in hospital. These peers can communicate to the newly injured that they are still the same person they were before and they can go on to live a good life. They are trusted because they speak from personal experience- they are Insiders.
The Insider effect occurs more organically in organisations founded on lived experience of disability, but it is not solely owned by them. Any provider can achieve this effect by embedding people with lived experience into the soul and structure of the organisation. The NDIS has created a competitive landscape, but Insiders will survive. They have mums on their side.
So, how will you become an insider?