Disability champion reflects on road to once-in-a-generation NDIS reform and challenges ahead

The National Disability Insurance Scheme (NDIS) is a once-in-a-generation reform alongside Medicare and national superannuation, disability champion Dr Rhonda Galbally said in the Brotherhood of St Laurence’s 2016 Sambell Oration on 1 December.

However, well-resourced disability support organisations are needed to stimulate demand for new supports that generate independence and community inclusion, said Dr Galbally, who was a key leader in the campaign to establish the NDIS.

In the oration Dr Galbally recounted her own life journey after contracting polio as a toddler in 1949 – in a family that resisted all conventional advice to send her to an institution. In parallel to her personal account she outlined the changing attitudes and responses to disability since that time, from the medical model, institutionalisation and the rise of the segregated services sector to the disability rights movement, de-institutionalisation, the push for mainstream inclusion and the disability and carer alliance that fuelled the successful Every Australian Counts campaign for the National Disability Insurance Scheme (NDIS).

Dr Galbally said, however that the struggle to ensure people can fully participate in the community continues. “Choice and control is central to the NDIS – it means that, for the first time, people with disabilities can be in the driver’s seat of their own lives.

But in order for choice and control to become more than a mantra, people need a vision and aspiration for what is possible, and encouragement and support to realise those aspirations,” she said.

“Without genuine innovation of new models for living in the world, a massive expansion of specialist services could emerge that will be expensive and which, perversely, will work against people with disabilities participating socially and economically,” said Dr Galbally.

“But people who have had years of disenfranchisement and isolation have a learned helplessness. They need help to strengthen their competence and confidence to move from being dependent clients to becoming active citizens.”

Dr Galbally called for a strong network of peer support groups, whose members share information, strategies and ideas. She said these groups need to become well-resourced disability support organisations that create strong and sophisticated demand for new services which help people lead ordinary lives in their communities.

The groups would also address barriers, such as in building codes and transport, that still shut people out of society. “The NDIS captured the imagination of every stakeholder in the disability sector – families, people with disabilities and services. Everyone was united in campaigning for Every Australian Counts,” she said.

“Yet at the heart of the campaign there was always an unresolved issue. From the late 1940s when I became disabled to the present day, there has been a struggle over people with disabilities: do they belong in the world or not?“

The 1950s approach that is still alive today is one in which people with disabilities are out of sight and out of mind: away from the world, leading lives dominated by disability; living, but not living.

“The 1950s also saw the beginnings of the alternative that benefited me – the struggle to ensure that people with disabilities fully participate in their society,” she said.

“The outcome of this struggle must be that the NDIS supports people to live their lives as citizens, enabled to become playmates, schoolmates, work mates: out there everywhere with their mates, leading ordinary lives.”

Read Rhonda Galbally’s speech (PDF, 212 KB)

Media inquiries: Jeannie Zakharov on 0428 391 117 or (03) 9483 2487