We know best

Now is the time for us to be in charge, and for non-disabled people to get out of the way, write Christina Ryan and El Gibbs, as a non-disabled person takes up the CEO role at the NDIA. 

Finally, after more than a decade, the National Disability Insurance Agency has a disabled person as chair, with the appointment of Kurt Fearnley to the role. Graeme Innes and Maryanne Diamond also join the board, bringing the number of disabled people to five.

“Having people with disability in key positions on the board is essential if we are to live up to the principles of the scheme’s formation 10 years ago,” Fearnley said.

All bring enormous professional experience and their lived expertise as disabled people. This combination of skills will be needed as the NDIA faces rebuilding the broken trust with the disability community.

This shift, that recognises the urgent need to get more disability expertise on the board, is very welcome and very overdue. The last few years have seen the NDIS move a long way from what disabled people, our families and organisations fought for, and it has a long way to get back.

The failed independent assessments debacle, cuts to essential supports, the overloading of advocacy, the lack of independent information and the failure of services in rural and remote areas are only some of the issues with the NDIS over the last few years. There is a great deal of work to be done.

But alongside this welcome shift at the board level, a non-disabled CEO, Rebecca Falkingham, has been appointed, missing the chance to put a disabled person in this essential leadership role. 

While the board positions were filled directly by the minister without an external selection process, the CEO position was filled with a good old fashioned merit based selection process guaranteed to produce a non-disabled person.

As one disability leader described it, “if they don’t appoint a disabled person this time they are effectively telling us we will never be good enough”.

To get the real benefits of diversity, organisations need to employ meaningful numbers of  disabled people in their leadership teams, as well as on their board. This is the only way to achieve the necessary culture shift that is required to bring the NDIS back on track. Disability in meaningful numbers at the leadership level, means that the culture is shifted from within in a sustainable way. This culture shift does not rely on individual key people, rather it gets shifted by having a critical mass of disabled people inside the organisation where it counts.

It has long been established that having women in board rooms and executive offices is good for business, yet, curiously, there is not a similar understanding that the same strategies are required for other diversity groups like disabled people. There remains an assumption that disabled people can be spoken “for” and “to”. That having us inside isn’t necessary. This thinking was abandoned decades ago in relation to women yet persists in relation to disabled people.

It was the lack of disabled people on the inside that resulted in the first Australian government pandemic plan not mentioning disability once, despite disabled people being a key vulnerability group.

It was the lack of disabled people on the inside that led to curious ideas like independent assessments and algorithmic control of planning. 

It was the lack of disabled people in the NDIS that led to cuts in services and complex administration processes.

It was the lack of disabled people that led to record numbers of disabled people fighting high paid lawyers for vital services.

This culture, where disabled people are only the ‘participants’ and never those in charge, means that we are only seen as service users rather than those in control of those services.

The NDIS isn’t everything for disabled people, but it is the primary agency responsible for our support. It influences how disabled people are seen across governments, agencies and the community.

The Centre for Research about Disability and Health recently released a data snapshot about the lives of disabled people. They found that “despite good intentions, little or no progress had been made in reducing the levels of disadvantage faced by working age Australians with disability”. Little to no progress over the last two decades. 

They go on to say that “these findings paint a bleak picture of Australian society which, despite good intentions in legislation and policy, remains one in which life is yet to improve for working age Australians with disability”.

Disabled people have the answers and the expertise about how to end the exclusion so many of us experience. Disabled people fought for decades to be in charge of our lives, and to have a say about decisions about us. The saying ‘nothing about us, without us’ was born of deep frustration and anger at being shut out of society and an insistence that we know best.

Now is the time for us to be in charge, and for non-disabled people to get out of the way.