The National Disability Insurance Scheme (NDIS) is a bureaucratic nightmare that many of the most disadvantaged members of the community are missing out on because it’s so difficult to navigate, a study has found.
Professor Gemma Carey from UNSW conducted a research review of 25 studies which is published in the Australian Journal of Public Administration.
Her study confirmed that Indigenous Australians and people from culturally and linguistically diverse (CALD) backgrounds are more likely to be excluded from the scheme altogether, or face barriers to gaining services and supports.
The paper concludes that five years after it began, the NDIS has become a “highly inequitable” scheme.
“What we’re seeing in the NDIS is that there are particular groups of people that do really well, and there are groups who do very poorly,” Professor Carey told Government News.
“Not always, but generally, that has a lot to do with whether you have the skills to navigate a really complex administrative system and argue your case for it.
“A white middle class group of people designed the system and guess what? It works really well for white middle class people but not really for anyone else.”
A white middle class group of people designed the system and guess what? It works really well for white middle class people but not realy for anyone else.
Professor Gemma Carey
According to government statistics, at June 2019 there were 24,023 CALD participants in the NDIS, representing just 8.4 per cent of those in the scheme.
There were 16,417 Aboriginal and Torres Strait Islander participants, making up 5.7 per cent of all participants, despite this group having higher rates of disability.
Public sector marketplace
Professor Carey says the NDIS is an example of a public sector marketplace, a model which has emerged over the last 30 years to give citizens more choice and control, but also to increase government efficiencies.
These schemes tend to be administratively complex, she says, with most of the burden falling on the individual.
In the NDIS, for example, participants have to complete access forms and provide the required documentation, argue their case at planning meetings and then go through the process of finding and engaging service providers.
“If you know how to work a bureaucracy, and argue your case and write letters to ministers, you’re more likely to get what you need,” Professor Carey says.
“But if you’re a new migrant and you have to fill out paperwork and collate six reports from specialists, and then you get on to the scheme and there’s disagreement about the sorts of services you need, you’re much less likely to find your way through.”
The research also finds a lack of information in different languages, lack of translators, lack of publicly funded advocates, and lack of cultural sensitivity, as well as a “punitive and exclusionary” approach to policing the sorts of supports people are eligible for.
Publicly funded advocates
Professor Carey says one way to improve the situation is provide publicly funded advocates for those identified as being in need at the point of entry.
“If you have someone skilled in navigating the NDIS sitting with you and arguing with you, you’ll do better from the scheme,” she says.
“We have a huge shortage of publicly funded advocates, so it’s likely to follow a socio-economic gradient where if you have money for a private advocate you’ll do better. “
She also says the government must think in terms of engagement with disadvantaged groups rather than just lip service in ongoing reform of the scheme.
“There’s a difference between consultation and saying ‘we hired people from these groups to sit with us’,” she says.
“The government is very good at consultation, they’ve consulted on many parts of the NDIS and even pushed a co-design, but consultation alone doesn’t go far enough.
“They systems we build should reflect the people were building them for.”
Professor Carey says if the issues identified in her study aren’t addressed Australia risks seeing inequality entrenched in one of its biggest social welfare policies.
“We’ll be potentially reproducing and making inequalities worse for particular groups in society who already are disadvantaged and can’t cannot access services, and we’ll widen that gap yet again,” she says.
Comment below to have your say on this story.
If you have a news story or tip-off, get in touch at editorial@governmentnews.com.au.
Sign up to the Government News newsletter
The NDIS is a noose around all our heads. From day one it was never really thought out and is the only insurance company which will never make a profit.
Interesting that all other insurers like WORKERS COMPENSATION or TAC make huge amounts of money through premiums and ripping off those on the scheme. Then the state government places them on a disability pension and hands it over to the Commonwealth.
Our health system is appalling and part of the issues with covid is that we were never ready for such an issue despite having had smaller ones like ebola, swine flu etc. The fact that in Victoria the premier had more people in his own office than the whole health department had in theirs, suggests health is not an issue.
But it is and part of the health system has to start right back at day one of life and ensuring health programs .
Disability must be at a priority but unfortunately we have governments now where life is not as important anymore. The states want abortion and euthanasia where most people prefer life.
An insurance scheme for people of all abilities at all times is a way to ensure (insure) better lives for all.
NDIS does not recognise my Cultural linguistic Identity.
Coda (Child ofDeaf adults)
Auslan is my first language.
Our Culture and language is an intrinsic part of our identity.
NDIS do not understand that I live in two worlds but don’t belong to either.
I’m not included in the statistics of CALD.
It is not only the complexity of the system but that that the NDIA are determined to fight participants to fund the minimal they can get away with. They don’t apply the legislation and it is an unfair fight that creates even more disadvantage. Even the mighty can fall – how much more the disadvantaged. So much harm.
As a seven year NDIS participant currently going through the AAT process (without an advocate, not middle class or educated in terms of HSC ) the NDIS has taught me more than I ever wanted to know about the Act, how bureaucracy works or doesn’t work, and how participants are actually regarded by those paid to care or paid to administer funding for our support needs.
I’m shocked at the “punitive” measures, the misinterpretation of Rules and invalidation of lived experience and my rights to choose and be safe which should be protected.
I love the NDIS but engaging with it is killing me.
It offers hope (and in my case funding), but I am limited in spending my funding due to the NDIAs version of “me”.
The reshaping of the Act has been terrifying to watch.
What the NDIA believes is reasonable and necessary for me bears no resemblance to what I need or want and what they would consider reasonable for themselves.
The NDIA staff “wants for me,” what I would never impose on them.
I am more than fodder for the abusive and neglectful disability service sector. It’s seemingly impossible for them to see me as the individual human I am.
Until there is actual accountability and serious consequences for those who deny our basic rights, we will continue to be marginalised and regarded as less than human.
Tony Abbot began the problem by imposing staff caps at 1/3 recommended by the Productivity Commission. Unable to cope expensive contractors were brought in. Local Area Coordinators (LACs) were intended to assist with supports and linking those unable to access NDIS with assistance outside NDIS – the abandoned Tier 2. Now LACs were outsourced as planners to build the plans. The plan build goes to the planner to check, and if they are a contractor it has to go to an APS employee ( delegate) to sign off. Enter the Sustainability Task Force and savage cuts to previous plans. The internal review system, meant to capture the odd poor decision is the norm. However we are seeing more and more no change from the internal review. The next step for the broken participant is the external appeal at the tribunal. Many advocates have closed their books. Legal aid is very difficult to impossible. Many many give up, often harmed.
NDIA staff and LACs know it is wrong and are leaving, creating a revolving door and staff that lack experience and training. Whistle blowers are increasing.
The only reform I see, is for this government to go. This is not just red tape but a determination to distrust and fight participants often with heavy legal ammunition.
There is neglect and real harm that will be seen at the Disability Royal Commission
NDIS has quickly developed into a mega department and acquired all the bad traits of big bureaucracy…duplication go processes, inconsistent application of the policy, plenty of spin that is not reflected in actual services. Long delays processing applications, not focussed on the needs of the participant but plenty of focus on process and filling out complex questionnaires that once submitted are not read, nor referenced. mark my observations, the NDIS is broken and unsustainable…the profiteering ring on with suppliers will soon be subject to inquiry and non doubt one day a royal commission of its own making.
NDIS bureaucracy amplifies vicarious trauma and disables applicants further.
NDIS and LAC staff request ‘reports’ that do not even exist, so applicants are sent searching for the requisite information, incurring further social and economic hardship.
Many children with ADHD and SLD are emotionally scarred by the education system. Parents/families/teachers are devastated by the plight of children unconsciously pathologized by inappropriate developmental expectations. Interventions are demanded at an alarming rate: speech, OT, psychological, etc
Then denied interventions by NDIS, and on the trauma goes.