Does the NDIS have a heart problem?

In this issue of Unreceived Wisdom, reader Phil Hayes-Brown weighs in on the fraught question of which person with a disability belongs at the heart of Australia’s National Disability Insurance Scheme

Do you have something you want to write about? Send a message with your idea.

The phrase I hear most these days about the National Disability Insurance Scheme (NDIS) is that “it's time to put the person with disability back at the heart of the scheme”.

I hear it from every politician. I hear it from advocates claiming that this central promise of the NDIS has not been fulfilled and it’s time to fix it.

But like lots of things that are said too often, the phrase is losing its meaning. It reminds me of a senior bank executive who told me it was time to put the customer back at the heart of the organisation two years before the Banking Royal Commission revealed how far away the customer actually was from the heart of banking.

What does it mean to put the person with disability back at the heart of the scheme? Which person with disability? And what about other critical stakeholders?

The National Disability Insurance Scheme (NDIS) is Australia’s largest health reform since Medicare. Currently, it’s undergoing a major re-set after its first 10 years of life exposed some serious flaws, including cost blow-outs and fraud.

In response, disability advocates want People with Disability to assume key leadership roles at the NDIS so they can lead the reform effort.

But while I like this sentiment, I also have reservations.

The disabled are not a homogenous population. The most significant differences can be found between those with physical disabilities and those living with intellectual disability, like my daughter who is non-verbal and so - literally - has no voice in this conversation. Such differences can lead to often irreconcilable views amongst People with Disability about how to fix the NDIS.

Which Person with Disability belongs at the heart of the NDIS? Should it be those with physical impairments that are vocal, articulate and want the freedom to employ the supports they need to live their best life? Let’s call this Group A. Group A comprises a small percentage of the overall population of Australians the NDIS serves.

Or should people like my daughter be at the heart of the NDIS? My daughter is intellectually impaired and non verbal. At age 22, she still loves ‘My Little Pony’, is unable to cross the road by herself and has no capacity to understand or decide how best to spend the funds that are allocated to her by the Scheme. Let’s call this group B. Group B represents the majority of those served by the NDIS.

If group A are at the heart of the NDIS, including in key NDIS executive positions, they will likely follow through on their aim of closing Special Schools, ending group homes and shutting down Supported Employment programs like the one I run at Wallara. Whjy? Because Group A believes such supports drive segregation and worse life outcomes for People with Disability.

Their argument runs like this. When People with Disability are segregated from the rest of the population, history shows bad things like abuse and neglect happen. This makes the best way to reduce that risk is to eliminate segregated settings. Integrated settings are also the best way to raise awareness and understanding amongst those without disability about the lives of those living with one.

Behind this claim is an invocation of the United States supreme court ruling in regard to multi-racial education that separate education was not, and could not, be equal.

Group A’s inclusion push closely follows the civil rights fight for equality in the US. Terms and principles that reference the American battle to end the Jim Crow era of racial discrimination in the south, like “segregated” and “separate is not equal” are applied to question the moral validity and wisdom of disability-specific educational, residential and employment settings.

But while I understand and respect this perspective, my family is part of Group B. We love these specialized settings because they work for our daughter. For us, inclusion is a feeling, not a place, and these places provide true social inclusion for us, as well as great life outcomes for our daughter and thousands of people like her with intellectual disability. Little things like receiving birthday party invitations all through your life (not just in Primary School) and feeling you are with people like you are key to helping our daughter and our family, feel we belong.

I also prickle at the suggestion that my daughter needs to attend an integrated school to serve as a social education tool for others. If this is preferred or deemed beneficial by others, I support them pursuing it. But as a reason to end all specialised settings, it denies me and my family similar freedom to do what’s right for us.

Making the NDIS successful will require a huge effort from everyone and lots of compromise. If people with disability are at the heart of the scheme then I hope a financial expert is at the brain, a Quality & Safeguards expert is at the lungs and motivated and respected employees are pulsing through the blood because all of them will be vital for this Scheme to live its best life.