When the National Disability Insurance Scheme (NDIS) was established almost a decade ago, it was envisaged people with disability would be empowered consumers. It was hoped their customer insights would shape new services designed to meet their specific needs and preferences.
But today’s market-based reality is that the National Disability Insurance Agency and its support providers are mostly still in control. In the worst examples, this has been linked to devastating abuse and alleged neglect of participants by support workers. Providers frequently see NDIS participants as a business “commodity”.
The disability sector has not prioritised obtaining and using data about what NDIS participants need and want, though there are notable exceptions like the Housing Seeker snapshot.
For our research, we conducted in-depth interviews with 12 people with acquired neurological disability, such as traumatic brain injury, spinal cord injury, stroke, or multiple sclerosis. When they spoke about what makes a good support worker, it wasn’t necessarily formal qualifications they were interested in – but rather how they were treated as people.
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What is a disability support worker
More than half a million NDIS participants depend on reliable, quality support.
Disability support workers are the key frontline staff who assist people with daily living, employment, housing and community participation, and achieving their goals. Support work looks different depending on the complexity of the person’s needs, with some people requiring general daily supports but others needing high intensity supports.
Australia spends more than A$20 billion each year on disability support workers. The new Labor government has promised an NDIS reset to bring it closer to its original vision.
However, without an evidence-based approach, the government may be investing in poor quality services that do not meet the needs of participants. Investment in quality support will maximise independence and social and economic participation and reduce the long term liability of the scheme.
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‘A body in a bed’
Researchers from La Trobe University and the Summer Foundation asked NDIS participants what “good” disability support looks like to them.
They told us that, first and foremost people with disability want support workers to recognise them as an individual, treat them as a person, and see them as the expert in their own support needs and preferences.
Charlie*, spoke to us after moving from poor quality support to good support and said
They didn’t know your name, treat you like you’re just a body in a bed […] Here they treat you like a person, they ask you what you want.
Participants stressed they want to choose and direct their support workers. While participants want support workers to have basic competencies, most importantly they value support workers’ attitude and willingness to listen and learn. Alex* said
Even if the rules seem ridiculous and over-exacting, if I say something’s important, just trust me that it’s important. Respect my perspective.
Participants wanted support workers they were compatible with, as compatibility fosters comfortable and respectful working relationships. Some participants valued this connection above and beyond formal qualifications or experience. Sarah* said
Never once have I asked to see her resume or her qualifications. I really don’t care what she’s got, I care about how we gelled.
Managing disability support was a job in itself, said participants. But systemic issues might mean participants feel “stuck” with support workers they don’t want to work with. Alex* expressed the common fear of not being able to find a better match.
You never know what the quality of the next person is going to be […] the energy required to train up and get used to a new person, is quite high. So, it has to get quite bad before I fire someone.
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Being able to choose
Participants we spoke to said service providers sometimes limited their opportunities to choose their own support workers.
Having new options signifies growth in the disability sector, but we need to ensure there are sufficient options to reflect the diversity of people with disability, and ensure people are supported to make informed decisions within traditional services.
Having real choice over support arrangements and daily living is key to quality support.
But theoretical choice and control are useless if people are not supported and empowered. Solutions need to be led, co-designed and implemented by people with disability.
One recent example is Participant Led Videos. This initiative featured tools co-designed with NDIS participants to help them create personalised videos to direct their support. Further independent evaluation showed they were well-received and considered achievable by people with disabilities and support workers.
Every participant is different
Rather than a one-size-fits-all approach, our research identifies the need for support workers to get training specific to each person’s needs. Given the value of lived experience, it is imperative people with disability are part of the design and delivery of training for support workers.
With the new government, we have an exciting opportunity to put people with disability front and centre of the NDIS. In the words of Isabella*, people with disability should be
the one[s] calling all the shots. It’s my life – why the hell would anybody else call the shots.
*Names have been changed to protect participants’ identities.
Megan Topping's doctoral research is supported by a postgraduate award through the Summer Foundation, Melbourne, Australia.
The Participant Led Video research was funded by the Innovative Workforce Fund (National Disability Services – https://workforce.nds.org.au/)
Jacinta Douglas is affiliated with the Summer Foundation through her Professorial role within the La Trobe University, Living with Disability, Summer Foundation Research Partnership.