NDIS must promote full participation, disability champion says

NDIS one of the biggest social policy reforms Australia has undertaken, says Dr Rhonda Galbally

Dr Rhonda Galbally and BSL Executive Director Mr Tony Nicholson.

By Mark Brolly

December 5 2016The National Disability Insurance Scheme (NDIS) must help people with disabilities live as full citizens alongside other Australians, a driving force behind the NDIS said in the Brotherhood of St Laurence’s annual Sambell Oration on 1 December.

Dr Rhonda Galbally, who led the campaign to establish the NDIS and now is a director and Principal Member (Chair) of the NDIS Independent Advisory Council, said the NDIS was undoubtedly one of the biggest social policy reforms Australia had undertaken, “a once-in-a-generation reform alongside Medicare and national superannuation”.

For 30 years, Dr Galbally has promoted the full participation of people with a disability in business, the public sector and philanthropy, including the Victorian Health Promotion Foundation and the social enterprise Our Community. In 2012, she was awarded the Prime Minister’s Outstanding Achievement Award in the National Disability Awards.

She recounted her life, including contracting polio aged 13 months and, at three, “being released from a series of acute and rehab hospitals into the arms of my grieving family”.

“After my return home, mum bravely fought very hard to keep me there, even though it was strongly recommended to her that I move from hospital straight to an institution so that my disability could be ‘worked’ on. Mum adamantly refused. My mother was a teacher: she knew the liberating value of education and, while she wouldn’t have articulated it as clearly, she understood that education to the maximum would be a powerful tool in cutting through the shackles of my disability… I did not see myself as disabled at all and my highest aspiration was to be part of the neighbourhood rabble.”

Dr Galbally said the polio epidemic was a shock to Australia that emerged in a policy vacuum.

“Up until this time, people with disabilities were dealt with privately – often shamefully hidden away as embarrassing secrets,” she said.

“While mental institutions had existed since the late 19th century, the response to the polio epidemic heralded the emergence of places similar to asylums that would contain people with disabilities for their entire lives – away from shame and fear and from the dangers of the outside world.

“Not only did institutions provide a solution about what to do with the sudden flood of cripples, they were places where having a disability was the absolute focus. In institutions, disability was all encompassing – the definition of identity. This is instead of being a person, where having a disability is just another characteristic like brown eyes. Because disability dominated in institutions, aspirations were minimal in relation to critical areas for living, such as education to the maximum with employment as the aim. And because institutions looked after the disabled away from the world, the world remained seriously and actively handicapping, with inaccessible and unwelcoming built environments and attitudes – including in schools, communities and workplaces.

Dr Galbally said the idea for national disability insurance scheme had been around since 1975, when the Woodhouse report recommended a no-fault disability insurance scheme for all disabilities. But it was 2008, in response to carer pressure for something to be provided for their loved ones, that the impetus for the NDIS emerged. Despite the different ambitions for the NDIS from carers, service providers and people with disabilities, an alliance was formed to push for its creation.

She said choice and control were central to the NDIS, meaning that, for the first time, people with disabilities could be in the driver’s seat of their own lives. But people needed a vision for what was possible, and encouragement and support to realise those aspirations.

“… 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. It is therefore vital for the NDIS to have strong and sophisticated demand for new types of supply; for services that help people lead ordinary lives in their communities.”

Dr Galbally suggested that the Brotherhood might play a very important role in strengthening the peer support groups for disabled people in their financial, governance, organisational and policy functions, as in its proud history in supporting and incubating consumer-based organisations.

“The NDIS captured the imagination of every stakeholder in the disability sector – families, people with disabilities and services… Yet at the heart of the campaign there was always an unresolved issue. From the late ‘40s 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. This approach has now become predominant in most developed countries and is also reflected in the United Nations Convention on the Rights of People with Disabilities.

“The alternative – treating people with disabilities as best kept with their own kind, away from the world – also allows those in the wider society to not face their own frailties, including the inevitability of disability and death.

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

“This must become what it is to be disabled in Australia in the 21st century.”

The Brotherhood’s Executive Director, Mr Tony Nicholson, said in his vote of thanks that Dr Galbally’s speech continued a theme of the previous three Sambell Orations with its focus on participation.

“In sharing her life story with us, Rhonda has vividly illustrated how critical participation in the mainstream is to people with a disability,” Mr Nicholson said.

He said the very sustainability of the NDIS depended upon mainstream participation.

Mr Nicholson said Dr Galbally has gently offered a challenge to the Brotherhood to consider the role it might play in strengthening peer support groups for disabled people and that challenge would not be ignored.

“… In deep social reforms like the NDIS, teething problems will occur and they will be rectified and adjustments will need to be made along the way. But in the great sweep of history, they will be forgotten if the principles underpinning the scheme are adhered to and not compromised, either in the rush to get the scheme in place or in the face of those who doubt the common good but who, for now, lurk in the shadows.”

The Chief Executive of ANZ Bank, Mr Shayne Elliott, said the success of the NDIS was important in its own right and for Australia’s future.

“… If the NDIS and its quite radical approach fails, then we beat ourselves down and it will not augur well for other policy reform challenges that don’t attract the extensive political and community support enjoyed by the NDIS,” he said.

The Sambell Oration is named after former Brotherhood Executive Director Bishop Geoffrey Sambell, who later served as Archbishop of Perth from 1969 until his death in 1980, and is a forum for ideas that advance a fairer Australia. The Brotherhood’s corporate partner, the ANZ Bank, which cooperates with the Brotherhood on financial inclusion programs and supporting employment pathways, sponsored the Oration and dinner at the Sofitel Melbourne on Collins hotel.