NDIS: a bureaucratic mess that “risks collapse”

By Leith van Onselen

Last year I labelled the $22 billion National Disability Insurance Scheme (NDIS) a “bureaucratic nightmare”, citing my family’s own personal experience with our 11-year old autistic son.

Despite being diagnosed in the “severe range” of autism spectrum disorder, unable to converse or read, and attending a special school, my son was initially denied funding for disability services that he previously accessed without a hitch.

After engaging an advocate and spending many hours going through the appeals process, my son has had some funding restored, but all in all the process was a nightmare.

My wife’s advocacy efforts were like having a part-time job, only unpaid and far more demoralising.

Our overall experience speaking to families with disabilities is that the decision making processes around NDIS funding is arbitrary and based on pot luck.

Several children we know have been rejected from the NDIS altogether, despite having severe disabilities. Whereas others with less severe disabilities than my son received literally tens-of-thousands of dollars of funding.

With this sordid background in mind, it’s interesting to read today that the NDIS “risks collapse” due to its absurd pricing model and mountain of red tape. From The Canberra Times:

The NDS is calling for a new independent pricing body by July 2019, less bureaucratic red tape, more flexibility, better planning, sector safeguard, a focus on employment, and a fit-for-purpose pricing model, especially for people with complex needs and in rural and remote areas…

More than half of Australian disability providers said they would have to reduce the quality of services under the current pricing model, an independent survey commissioned by NDS showed.

One in 10 disability service providers have discussed closing and 28 per cent recorded a loss of deficit, according to the survey.

“This is just tragic … the whole point of the scheme was to provide support to people with the greatest need,” Ms McKenna Kerr said.

“If we don’t have urgent attention on this we are going to find more and more providers are not going to be able to provide support.”

Meanwhile, The ABC reports that the NDIS denied a deaf man $10,000 for a hearing aid upgrade, while granting him $15,000 for social outings:

The National Disability Insurance Scheme (NDIS) is being criticised by participants after it refused to fund $10,000 for a hearing aid upgrade for a profoundly deaf man and instead gave him $15,000 for social outings.

In a letter to Lawrie Dobson, the NDIS said this funding was to be used for core supports to assist with daily living and participation, and the funds would be paid directly to the support provider.

Veronica Dobson, who advocates for her son Lawrie, has accused the NDIS of ignoring the advice of specialists, not listening and wasting money.

“The NDIS needs to look at the needs of the individual — that is what the money should be spent on — not what they think will be good,” Mrs Dobson said.
“We have not used a cent of that”…

Mr Dobson’s audiologist recommended the upgrade, and private health insurance upgraded one speech processor, but funding could not extend to upgrading the second processor…

Mrs Dobson appealed the decision, but it was rejected again. She was told that she could appeal it, but the process was too exhausting.

“It’s review after review,” Mrs Dobson said. “How far can we go? “We’re only parents who have been trying so hard for our children to get the right thing for them, but you come across this brick wall and it can be very, very difficult, particularly when you have a sensory neural deafness.”

When the NDIS was first announced, families of the disabled were given assurances they would be no worse-off. I can say from personal experience, and from talking extensively with others in the community, that this certainly has not been the case.

For many, access to services has been cut, whereas time wasted on bureaucratic processes has ballooned.

The NDIS has been great for middle-men with their fingers in the honeypot, but a disaster for many families of the disabled.

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Comments

  1. rob barrattMEMBER

    I believe I can state with some confidence that the NDIS will be the biggest bureaucratic cockup in Australia’s history. My partner is a psychologist working for Queensland Health. My partner witnessed a meeting between NDIS bureaucrats and mental (I will define that in this instance as people with cognitive defects) patients in a QLD health center. The meeting could only have been described as surrealistic.
    3 NDIS bureaucrats arrive.
    1 says nothing, she is merely there to take notes.
    The other 2 start questioning the patients (NOT the doctors or staff) about their medical needs.
    At any point that a medical professional makes an attempt to question them they are waved to silence.
    The medical staff are not asked for their input following the “meeting” with the patients.
    Now add the cost of the shonky service providers that will be used by these NDIS “representatives” (not medical people by the way) to provide the “treatment” that these patients require according to themselves and you have guaranteed a truly Kafkaesque outcome. Not wishing to denigrate the patients, it is still uncomfortably close to a case of the asylum being run by the inmates. Whereas it is totally acceptable to speak to physically disabled people in a consultative way, trying to do the same for mentally disabled people indicates a lead handed bureaucracy with no clue as to how to operate.

    • “the NDIS will be the biggest bureaucratic cockup in Australia’s history.”

      NBN?

      • rob barrattMEMBER

        A bit like comparing the Titanic with the Wilhelm Gustloff. Which one would you rather be locked below deck on?
        My personal experience with the NBN?
        I live in an inner Brisbane suburb. Local council contractor knocks down internet cable leading from roof of my house to Stobie pole opposite. Time to fix? About 20 minutes excluding callout travel. Eventually a letter from the Telecoms Ombudsman got them to fix it. After 6 weeks…..
        They re-position the cable 1 meter below minimum legal height above the road….

      • NBN betrays the future, the impression I get is that NDIS betrays the present.

        FTTN is mostly ok for a small window of time. Its massive failure will come when the inevitable need for data outstrips the copper’s ability to keep up. Wealthy profitable areas will be then easily targetted for upgrades while regional areas will get the bad end of the stick. TBH, given how many voters in those areas voted for the government screwing them I can’t feel too terribly about it.

    • the NDIS was written and designed to be administered under Departmental Governance with the agency itself falling under the previously rigorous Health portfolio of agencies governance arrangements. After Gillard, the Liberal National Coalition proceeded to bureaucratically sabotage the NDIS as they could not take away the funding enshrined in legislation. This resulted in outsourcing of every function of the NDIS, splintering of the Health portfolio agencies and ensuring that staffing the bureaucratic Government arm was problematic. This has led to the situation we find ourselves in today as a direct result of the LNP wishes. The LNP minister’s involved and crossbenchers should be brought to trial under the next Government and made to own the accountability for this tragedy that has effected a myriad of human lives and quality of life. Of course neo-liberalism only places a cost on a human life, not the human experience and suffering resulting from its heanous ideology.

      • PassingInterest

        Very true. The LNP Coalition 100% owns the NDIS disaster.

        Most of the agencies still offering services into the NDIS are losing millions. The Coalition either wants the scheme to fail, or for incumbent providers to fail to make way for new lower cost participants, in the process breaking entrenched enterprise agreements as required.

      • Ronin8317MEMBER

        Abbott should have just scraped it and retained the old funding model. It would be a better outcome compared to what we have time.

      • @Ronin8317 in fact the NDIS was a MASTERPIECE of legislation and as an instrument is one of the best pieces of public administration to have been framed in the last century. What should have been scraped is the Liberal National Coalition Government. Abbott could not scrap the NDIS as it was enshrined in legislation, so in fact the LNP have wasted millions of dollars of taxpayers money by sabotaging the NDIS masterpiece and granting untold millions of dollars to private service providers and ‘managers’, where in fact the NDIS was designed for the money to go to the disabled people who need it most using the effective and quality governance that was in place BEFORE the LNP government.

        The best thing that could happen to Australia is the acknowledgement of the irrelevance of neo-liberalism to our future. It is only the vested private interest groups clinging to the ideology of neo-liberalism and the money streams they have been suckling from it. The sooner the poisoned teat of taxpayers money is pincered the better. Let’s see all those private manager’s try and manage something real, not just a balance sheet……

      • “@Ronin8317 in fact the NDIS was a MASTERPIECE of legislation and as an instrument is one of the best pieces of public administration to have been framed in the last century.”

        If it was a masterpiece it should not have been possible to undermine it.

  2. A close family friend has experienced similar problems with NDIS itself and even more perplexing problems with private (for profit) NDIS service providers. From what I can gather the service providers are paid a certain amount depending on the assessed level of disability and therefore go about Cherry-Picking those that are assessed at higher disability levels but don’t really require that level of support. In the end the typical disabled individuals assessed NDIS budget is insufficient to receive even a fraction of the services that they received pre-NDIS….it’s a mess… with parents and doctors / social workers being pressured to up the assessed disability level, which has the side effect of completely removing services from the severely disabled, because there are now easier clients to grab with lesser disabilities that result in the same payment. Total Fubar!

  3. ErmingtonPlumbingMEMBER

    My step sister has quite advanced MS with a lot of time on her hands and likes being able to directly interview and Employ her assistance but acknowledges that for those without time or competence the system does not seem workable.

  4. My second-hand experience with it is similar to yours, UE.

    Issues that are, in my opinion trivial (like dietary issues diagnosed by naturopaths, with no definite medical diagnosis FFS!), getting nearly immediate support including in home consultations and behavioural psychology support to the school where the kids attend.

    Meanwhile another mate whose child has rheumatoid arthritis has been refused assistance despite the fact that it’s been a medically treated and well understood condition for years. Mobility issues with intermittent pain? Nah, no need for support there.

    Care seems to be randomly assigned based on who happens to be doing the initial assessment and those approving claims above them. Wouldn’t be surprised if there are all sorts of sub-contractors and remuneration schemes at work on a local scale as services are outsourced in order to meet apparent demand.

    I sure hope it isn’t just another government funded junket for people willing to rort the system.

  5. rob barrattMEMBER

    A more workable model?
    First define a set of services by negotiation with a representative body covering major health services. They will know the service model required better than any external bureaucrat. So, determine and agree the scope of WHAT is required.
    Then, allocate a proportion of the budget to each of those services after a best effort to calculate their proportion of requirements (area/population covered etc). Not of course easy and there should be a review process of the budget spread.
    The services themselves are then responsible for accounting for their expenditure under that budget. You need someone to audit their expenditure to ensure the budget is being spent. Of course there will always be difficult choices – cost of one person’s treatment rather than 2 others etc etc but are they not more likely to get it right than an external bureaucrat?
    You do not need an organization set up in parallel to the existing professional services.
    You do not need “providers” working for a parallel organization
    The key to the current failure is understanding that attempting to better them at their own game (imperfect though that may be) is always going to be a failure. You should be able to prod them but you will never be able to wave a magic wand and replace them. The administrative costs guarantee failure.

  6. It might be better to give the deaf a stipend and the deaf can use it to buy hearing aids from the market – not just the Aussie market but less corrupt markets such as NZ, Canada, Britain, Singapore.

    Online shopping of health items should be exempt from the corrupt new GST law.

    This also shows what a massive rort, should it be put in, a “job guarantee” will be.

    AUS federal government recently sold pool tables for a few thousand $. But the audit process, to make sure the tables were sold for a fair price, cost $100k!

    Qatar simply gives its citizens a house when they turn 18: https://youtu.be/rDfMSfBligc

    • proofreadersMEMBER

      NSW knocks down a repairable stadium, while there are apparently still homeless on the street and an affordable housing waiting list – at least, they moved the homeless on from outside the RBA so that there wasn’t that inconvenient truth outside an ivory tower? Go figure?

    • “… buy hearing aids from the market …” Bingo!

      The system is distorted / rorted in multiple ways and one of those is the ludicrous protections for providers of medicine and medical equipment — it ensures that the people who have to pay for it (individual or taxpayer) will get shafted. Big time. All under the guise of consumer protection, don’tcha know 😉

  7. This stuff really makes my blood boil.

    Screwing everyone on housing is atrocious, but I can laugh about that (and always do).

    Fvcking over sick kids (and adults) who are vulnerable and dependant on society’s support is bloody despicable and lower than shark sh!t.

    Doing it while paying tax refunds to negative graders just makes it worse.

  8. It is instructive to read through the discussion papers that circulated in the decade before the NDIS was adopted. The dominant discussion issue was the rights of people with disability to be treated equally with other members of society, principally expressed in terms of choice in who their service provider may be, where they may live etc. Rarely mentioned were practical issues such as quality of service, delivery mechanisms, availability of skilled and resourced NGOs, realistic budgets etc. In reality it was just a feel-good exercise for impractical SJWs. Pink batts on steroids.

  9. GunnamattaMEMBER

    The NDIS is a ‘bureaucratic’ mess by design. By Torynuff design….Those nutters wanted to screw it up from the moment they thought Gillard was going to give something to the unfortunate.

    It has been implemented by a conservative government which didn’t agree with its raison d’etre from the get go, was determined to have the private sector do as much of that as possible – and thenceforth has been used to funnel money through contracts for consultants and private assessors and a range of support services. The NDIS HQ is largely staffed by temporary staff, many of whom have gone there because (seeing as it is temporary) permanent public servants aren’t interested in going there, and it offers a chance to go a rung higher than elsewhere if they can take the risk they may lose the gig, or if they retain the right to go back to a position elsewhere if it all falls over.

    From there those with disabilities rank somewhere down the priority scale.

    It isn’t really bureaucracy at all. It is, like much of Australia’s bastardised public sector, a half private, half public mechanism for shunting funds to someone while the public actually needing the service it purports to provide is short changed from the get go.

    • Nope.

      This would’ve happened under the ALP as well. The Commonwealth PS doesn’t do service delivery very well. It is actually hard to run things from Canberra but they believe in it.

      I was involved in this space tangentially when back in State Govt. The thing is a lot of these services were originally provided by State Govts. But if the Feds are taking over the funding it makes no sense for the States to stay involved in the service provision (and cop any blame) when you no longer get to call the shots. [Ie, point finger at Canberra, we are no longer involved]

      The State would have happily sold their assets to the Feds, but the NDIS / Canberra wanted to be a coordinator not a provider. So NSW sold Home care service to the Australian Unity. No longer the State’s problem and Canberra deservedly copping the heat.

    • But the Bulk Billing GP clinics are private and so are the pharmacies.

      Dentists, physiotherapists, and dermatologists are probably private too.

      NBN took ages to connect new houses to the telephone network. 6 months? Telstra had been connecting new houses for decades and it was suddenly sidelined by Conroy in favour of a brand new government company that has no history of connecting people up!

      If the fake Greens decide to nationalise the electricity grid, maybe the same thing will happen with electricity. 6 months to connect new houses to the grid?

      Sudden changes are bad. Easy does it.

  10. No surprise.

    The Commonwealth is TERRIBLE at service delivery, but hey the NDIS is a federal agency and wants to take over the space. Each State Government said ‘come in spinner’. They are out of there and privatising their services to the non-government sector so they are no longer on the hook*.

    It was ALWAYS going to be a bureaucratic nightmare.

  11. Given most of the audiologists are getting a cut of the hearing aid sale price, hearing that an audiologist recommended an “upgrade” of a hearing aid is like hearing a real estate agent say now is a good time to buy a house.

    • proofreadersMEMBER

      Very punny – but the message is the same as hearing (no pun intended) Warren Buffett telling us not to ask a barber if we need a haircut.

  12. Before it even started I knew it was destined to fail. Pretty much like every other scheme where the public pays and the private sector provides. The providers will always slog the government way more than their services are worth.

    No doubt the NDIS is supposedly under funding services because they are being over-charged. The government either needs to be all in or all out of these schemes. Either they provide all the services themselves or they shouldn’t be involved at all.

  13. I’m not one of the Gillard haters who seems to go incandescent with rage at the woman. While she was a lousy campaigner, and has been given a free pass on social issues (like gay marriage) by the SJW crowd, she was all accounts an effective PM who did a good job at getting her policies implemented.

    Shame those policies were often such disasters. The NDIS s the classic bureaucratic suck hole where all the money goes to gatekeepers and shysters and none goes to the people who do anything useful. NAPLAN is a millstone around the neck of Australian education policy. (and I’m notionally in favour of objective testing methodologies)

    While I loathe the libs and am notionally left-leaning, I do worry that a future Labor government will lay on the trowel with this sort of stuff.

    I have family members who’ve had to work with the NDIS system and they would agree entirely with your experiences.

  14. Anyone know of source or advocacy site for advice or things to be aware of for our first plan ?
    Brisbane areas NDIS came in later half of 2018, the Moreton area is this year, we are waiting on our first appointment/interview.
    Would like to get it right the first time and have the right things in it.
    For a 5 year old.
    Non verbal, non mobile, Peg fed (nil by mouth), Cerebral Palsy, Epilepsy.
    Brisbane area preferred.
    Current advice so far
    O/T, Speechie, Physio, Dietician, Food school ( one session per fortnight/month), their travel time if visiting ?
    Respite care/relief, one day a week (checking if 8 hours or 24), Disability services recommendation.
    Equipment, eg orthotics, wheelchair (manual), special car seat, walking frame, shower/commode chair, purchase plus maintenance.
    Also quoting/trial/sizing/test run/training of/for all equipment
    Nutrition and feeding supplies example formula, giving sets, bottles, pump, maintenance, calibration and testing.
    Transport, fares, rental
    Vehicle modifications
    Home modifications, this one may be iffy as we are in a rental, now applying for social housing, something more “permanent” to enable larger more substantial permanent modifications.
    Very difficult if not impossible, finding all wheelchair access rental housing.
    NDIS funded SDA (Special Disability Accommodation) is not available to clients until 18 years old,
    https://www.disabilityhousing.com.au/listing/modern-sda-unit-with-assistive-technology-bundaberg-qld-shared-accommodation/
    After school care, P&C raised issue of some parents now been charged, since NDIS came in, and most parents/clients didn’t include in their plan.
    Thanks all for any help or advice.

    Side note, the ACCC should look at disability products pricing in Australia Vs the world especially USA, huge mark up, I think the word is gouging, and its our most vulnerable.

    • Hi Pa,

      make sure you add in toileting needs. NDIS will cover costs of nappies for children who unable to be toilet trained.

      Be careful with your pitch for respite. The NDIS will not cover respite for mental health, etc. for carers, which is absolutely ridiculous. It needs to be for the benefit of the person with a disability, not for carers. So you need to pitch it along the lines of socialisation for the child outside of the family environment.

      We have been under NDIS for 4 years now for our 2 children with non verbal autism, who are now 7 and 9.

      • Thank you Clair
        Didn’t know about the Nappies, wipes ?, will include on our list.
        The respite care was not something we really thought about, was suggested/advised by Disabilities Services last year for inclusion in our planning interview, thought was more for our benefit, wrong.
        Appears NDIS doesn’t really appreciate us usually family, type carers much at all, I think they should have been more inclusive up until a clients older, example young adult age.
        Starting Special School (Prep) this year, 5 days a week, has given us a very welcome break, about 6 hours a day, still on call/standby in case of feeding problems, throwing up, sickness etc, not complaining though.
        We have found it hard to get definitive information on what to apply for, everything is a bit hairy fairy, mother hood statements, write down what you do each day and, by the looks of it, hope the interview person/s know what you need.
        Not overly enthusiastic on that idea or process and can see why some people may have had problems.
        All ok I suppose, if you are dealing with experienced disability carers/professional interviewers, I doubt that though.
        To be fair there is probably not enough experienced Carers and Professional interviewers to go around anyway initially.
        We are feeling a lot more comfortable now though with what we have researched, listed, terminology etc before our planning interview.
        All the best for yourself and your family Clair
        Pa