The chronology of the current National Disability Insurance Scheme (NDIS) begins in 2007 when the Senate Committee on Community Affairs sought to address the chronic funding shortfalls and ongoing service failures suffered by disabled Australians, their families and carers.
Australia signed the UN Convention on the Rights of Persons With a Disability that year and Labor committed to a National Disability Strategy during its 2007 campaign.
After decades of representations by advocates and the disability community, the futuristic Australia 2020 Summit Final Report recommended in 2008 that a national disability scheme be set up. It was to be based on insurance principles to ensure future funding of the “fully funded, needs based” scheme.
Everybody wanted it, especially the long-suffering disability community who had been ignored for so long, their neglect laid out in shocking detail at the Disability Royal Commission.
The Productivity Commission found the benefits of the NDIS would outweigh the costs of servicing the nearly half a million it was designed to help. However, it noted the structural needs of the NDIS itself would outweigh the available workforce, skills and market infrastructure for some time.
By the time the NDIS was introduced by the Julia Gillard Labor government in 2013 it had been through so many inquiries, commissions and committees and generated countless submissions, reports, agreements and funding models, it should at least have had a smooth implementation.
But, if the roll-out proved the one thing the disability community has been saying for decades, it is that, while the NDIS and its funding was welcome and desperately needed, managing disability in a profit-driven framework would take a whole lot more than money.
NDIS budget
The NDIS’ multi-billion dollar budget has been criticised as inadequate, both in terms of state and Commonwealth services and the funding allocated to individual participants.
The NDIS is currently the third largest program, as measured by total general government sector expenses, with an estimated expenditure of $41.9 billion in 2023–24.
Projections from the NDIS annual financial sustainability report 2021–22 suggest that the scheme could cost as much as $89.4 billion by 2031–32 (not including operating costs) — an estimated 2.55% of gross domestic product. States and territories contribute financially to the NDIS based on bilateral agreements with the Commonwealth.
So why then does it keep coming up short on delivery?
Underestimated need
Despite this, the level of need and the complexity of providing disability services was still significantly underestimated.
In addition, the inconsistencies in National Disability Insurance Agency (NDIA) assessments and the application of evidentiary requirements led to disabled people being rejected.
Had the NDIA board, management and employees been primarily disabled people (similar to ATSI-related jobs prioritising Indigenous applicants) this could have been avoided.
However, after a lifetime of hearing that disabled people “can do anything” and it’s “all about motivation”, they were suddenly under qualified for the high paid, perk-heavy NDIA jobs managing the NDIS’ pot of gold.
This has been partially addressed by Labor disability minister Bill Shorten appointing Kurt Fearnley to head the NDIA Board, but the structural damage is largely irreversible.
Like the previous Disability Support Pension, it too often came down to whether an able bodied, under qualified intake officer thought they were disabled enough to deserve it.
Need was particularly underestimated among young children, the diagnostic criteria and evidence required confusing to everyone, a situation the interim report suggests NDIA is still struggling to address.
Profit before functionality
NDIS has repeatedly failed on its mandate of “control and choice” service delivery, because it is based on combative market competition between providers.
This pushed out traditionally under-funded local community services, replaced by increasingly greedy corporatised providers.
Instead of “the market” providing better quality care, privatisation and the NDIS price structure virtually guaranteed the bulk of a participant’s funding would go to a corporatised provider, not towards the promised “peace of mind”, “choice and control” or even hours of direct care and support.
This remains particularly true for people who are unable to self-manage their NDIS packages. With even Public Trustees being found corrupt many have nowhere else to go.
Some high-need NDIS users found themselves at the Administrative Appeals Tribunal seeking more funding after inadequate NDIA allocations increasingly locked in a “race to the bottom” forever cheaper care hire.
Others had the opposite problem. One participant told Green Left they had sufficient funding but were unable to use most of it. “We’re in a regional area” she told us. “Many of the services and workers we are funded for simply don’t exist here,” stating “too many are only in it for the money”.
Inclusion?
A key element of the NDIS is to fund programs that support inclusion.
Despite one in five people living with a disability, governments remain adept at ignoring disabled people because there is no real consequences for doing so.
They have long ignored disabled public transport users and bashing Disability Support Pensioners remains a popular sport.
Selfish, able bodied people park in disabled spaces, use disabled toilets as store rooms and refuse Guide Dogs transportation and entry at venues.
Unfair rental practices and workplace exclusion remain rife with few prosecutions.
If access discrimination attracted a $22,000 fine and 2 year’s jail, like climate protesting does, the blatant access discrimination against disabled people might finally be addressed.
Full circle
By the time the then Coalition government had finished with it, the NDIS was on the brink, with Labor promising the current review during the last election campaign.
Minister for Disability and Government Services Bill Shorten, one of the NDIS’s original architects, released the NDIS Review interim report on June 30.
What We Have Heard identified the following five key issues that need to be addressed.
1. ‘Why is the NDIS an oasis in a desert?’
After underfunding community-based services and privatising disability care under a market driven model, the government is now asking disabled people to “give feedback” on why it’s still not working.
The report notes: “Community supports for all people with disability … have not been delivered … having significant impact on the cost of the scheme.”
2. ‘What does ‘reasonable and necessary’ mean?’
Staggeringly, there is still not an agreed NDIS-wide, definition of what constitutes “reasonable and necessary support”.
The report notes: “This unresolved issue is the cause of many of the scheme’s challenge” including poor planning, inequitable funding decisions and disputes with the NDIA.
3. ‘Why are there many more children in the NDIS than expected?’
The report notes this under estimation reflects overall “higher than previously identified rates of disability amongst young children” and identifies the “lack of supports outside the NDIS” and a “focus on diagnosis rather than support needs” is undermining sustainability.
4. ‘Why aren’t NDIS markets working?’
It says “not only do we not know whether participants are getting good outcomes such as employment and a good life; but we also don’t know the relative quality of the supports they receive”.
It concedes the market approach has not produced improved outcomes, particularly in remote areas.
5. ‘How do we ensure that the NDIS is sustainable?’
The final key issue listed begins with this: “The NDIS is an uncapped, needs-based scheme” immediately followed by, “However, the NDIS must also be sustainable and its costs predictable for governments and the public”. Then, finally, it must “provide certainty” for participants and their families, balancing benefits and costs, and balance the core ideals of choice and control against sustainability.
The interim report is calling for final submissions on its five identified key issues, as it tries to get the NDIS back on track.
It remains to be seen if the primary focus really will be the sustainability of disabled people’s everyday lives, or the sustainability of the government’s precious budget.
[Suzanne James has a background in writing policy, governance, risk management and regulatory compliance frameworks and in legislative compliance application.]