NDIS is a bureaucratic nightmare

By Leith van Onselen

The managers of Australia’s $22 billion National Disability Insurance Scheme (NDIS) have been slammed by the Administrative Appeals Tribunal (AAT) for being “slow”, lacking transparency and being “bloody-minded”. From The Australian:

In an extraordinary decision, Administrative Appeals Tribunal deputy president Gary Humphries has attacked the National Disability Insurance Agency for tearing through legal resources simply because it has such a “haphazard” approach to making decisions.

“It seems to the tribunal ­entirely inappropriate that a participant, working with finite ­resources and coping with the added burden of a disability, should need to be left in doubt as to the status of decisions made ­affecting his or her entitlement to the benefits conferred by the legislation,” the decision says.

“Yet this is precisely the situation many applicants to the tribunal have found themselves in recently.”

… The Australian can reveal the NDIA spent almost $6 million on internal and external legal teams last year…

It is losing more cases, however, with data from the March quarterly update showing the NDIA has lost 42 per cent of the 375 resolved cases taken to the AAT. To March, a total 757 matters had been referred to the tribunal.

I have a mid-level autistic son. He is 10 years old. He cannot have a conversation, cannot read, and goes to a special school. My wife spent countless hours doing NDIS paperwork, attending meetings, phone calls, medical appointments, etc, only to have my son’s access cut to services that we previously accessed without a hitch.

Our personal experience is that the NDIS is a disaster, whereby funding has flowed to bureaucrats and middle-men, rather than to those in need with disabilites.

The way I see it, there are several key issues with the NDIS.

First, its funding comes from Budget appropriations, rather than through legislation. This means that Parliament has to approve a fixed amount of funding each year that cannot be exceeded. By contrast, services like Medicare are enshrined in legislation, meaning there is no fixed amount of services that cannot be exceeded.

Second, and related to the above, the NDIS’ gradual roll-out meant that those placed at the beginning of the roll-out received significant funding, whereas those positioned later on, like my son, have been shafted, purely because the well of funding has run dry.

Moreover, the bureaucrats administering the scheme have had to spend more resources (e.g. on lawyers) fighting appeals against their funding cuts, which has burned more funding.

Third, the enormous pot of money on offer under the NDIS has spawned a whole range of middle-men and providers seeking to cash in, leading to significant waste. We’ve seen this before with the rorting of the private VET sector, rorting of childcare subsidies, and rorting of the Pink Batts Scheme.

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.

Access to services has been cut, whereas time wasted on bureaucratic processes has ballooned.

The NDIS is great for the middle-men, but not so great for those with disabilities.

[email protected]

Comments

  1. My partner has some interactions with NDIS and tells me that it is badly run and full of fraud.

    • deustchedropper1

      And yes our experience mirrors your own. Its an absolute sh!t show of arbitrary decisions by people not qualified to make such determinations. Those with disabilities will not have improved outcomes – the wallets of the middle men will though

      • You’re absolute right. I worked in workers’ compensation and life insurance over a number of years. You basically have assessors / case managers who have absolutely no expertise making life-changing decisions. NDIS operates the same kind of model where you have assessors and case managers approving plans.

      • My cousins child is significantly autistic. Despite every thing told to her she still blames her self and is refusing to have any more children. I wont pretend to know what its like for you. I hope things work out well for your kid.
        I only offer this as a suggestion just in case it is something you have not considered.
        https://www.smashwords.com/extreader/read/214625/2/autism-and-vitamin-d-emilys-story
        In her search for information about treating her children Emily came into contact with Dr. John Cannell, MD, Executive Director of the Vitamin D Council. After hearing and reading about the results that others had realized with vitamin D supplementation, she started her children on high doses in early September of 2010. After 3 weeks she noticed remarkable results in her son, Jimmy. The biggest changes in him were dramatically improved awareness, reduced hyperactivity, and a small increase in the quantity of his speech and correct use of language.

        also

        https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1651-2227.2010.01883.x
        I have suggested that the primary environmental trigger for
        autism is not vaccinations, toxins or infections, but
        gestational and early childhood vitamin D deficiency (1,2).
        Subsequently, the title of an article in
        Scientific American
        recently asked, ‘What if vitamin D deficiency is a cause of
        autism?’ (3) Since then, an article on vitamin D and autism
        in
        Acta Paediatrica
        (4) and the accompanying commentary
        (5) have added to the accelerating suspicion that vitamin D
        deficiency – either during pregnancy or early childhood –
        may be an environmental trigger for the genetic disease of
        autism.
        https://www.vitamindcouncil.org/newsletter-yet-another-autism-case-report/?highlight=autism

        I would only encourage to look into this Vit D thing. I know for myself for other conditions it has been very effective when combine with therapy including Magnesium, K2, B Complex and B12

      • JunkyardMEMBER

        Our experience mirror yours UE.
        Our autistic son is 10 and goes to a normal school, but he will never read or write. Communication very is challenging.

        We found NDIS utterly confusing and absolutely full of middlemen, pointless service providers, and fraudsters selling snake oil.

        We gaveup. It’s enough of an emotional rollercoaster as it is without having to deal with this government disaster.

        We pay for private tutoring and speech therapy out of our own pocket. It’s the 1 small blessing from not being mortgaged to the eyeballs that we can afford it on my single crappy income.
        However, the thing that makes me the most angry it that there is not even enough funding in schools these days to give my son a little extra support.
        We can fund some Chaplin’s, Indonesian class, but not a basic fkn special English class for struggling kids?

        Anyway what can you do….

      • Sounds too familiar Junkyard. We are just lucky that my son got into a special school. Others we know missed out (tested just above 70) and are stuck in mainstream schooling like a fish out of water. All the best with your situation. It sucks, but those are the cards we’re dealt.

      • Junkyard: what state are you in?

        My son has severe physical disabilities, goes to a mainstream school in NSW, and gets a full-time helper (“Special Learning Support Officer”, aka “SLSO”) – anything like that where you are based?

      • JunkyardMEMBER

        We are in Melbourne outer eastern burbs.
        We had FAHCSIA funding for OT when he was younger and it seemed like that early intervention made a difference. We are very grateful for that assistance but it ends around school age.

        We have jumped through all the hoops for getting some support for him in school but his IQ does not test low enough even though he has significant sensory and language processing impairments.

      • reynmonMEMBER

        I’ve got a new level of respect for you UE, wishing you and yours all the very best.

      • Two superstars in one family, then. And yet even you guys can’t navigate the train wreck that is NDIS. Says it all really.

        The stories in this thread of NDIS failure are just sad.

    • JunkyardMEMBER

      There is no “skyrocketing” autism. There is no autism “epidemic”.

      It’s an artifact of improved diagnosis and increased social awareness. Have you been reading antivax propaganda?

      • drsmithyMEMBER

        Judging by the “women in the workforce” thing I’d say it’s alt-right/NRx propaganda.

      • Junkyard, there is no official line on what causes autism – so people come up with their own theories. Stagmal said nothing about vaccines. Donald Trump’s son is autistic and the media says it is due to him fathering Barron Trump at the age of 59. That is a very late age to have a child.

        I watched a 4 Corners episode on autism and it said autism is probably caused by overusing antibiotics. The episode also showed an autistic child whose behaviour improved when he started eating heaps of yogurt – which contains probiotics. He was not cured but his behavior improved.

  2. Ronin8317MEMBER

    One of my niece is deaf since birth, so my sister have a lot of dealing with community organisations helping those with disability. Those community organisation exists because they care about those they’re helping. The idea that giving money to profit making businesses would result in a better outcome for those with disability is clearly insane, yet that is what NDIS envisions.

    The LNP have tried this with private health insurance, which is a rort. They have tried it with ‘Jobs Network’ for the unemployed, which is a rort. They have done it with VET for education, which is a rort. Why would NDIS be any different?

    • It’s QE for one small segment of the economy. Unremarkable residential support workers make $100k and get a five percent pay rise every year. House managers get $150k and car. I think it will bail out many of Martin North’s stressed households.

      • The people on the ground say 90% of the money put aside for Aboriginal Affairs never leaves the department. And while the government department now has some Koori employees, they are in the smallest of minorities there . Thirty years ago there were none.
        People l talk to for education and even health ( must exclude direct Medicare payments) say the same thing- and those beaurocracies pay well- high base pay,travel allowance,home internet and phone allowance. etc. a reasonably high /middle person we know has her generous base salary almost doubled with allowances( live obviously missed a few).
        NDIS seems to be following the model.
        And yes,people we know well who have a very handicapped child have had their service levels cut significantly since ndis arrived.

  3. I volunteer at a local community centre that has historically offered services for disabled people. The NDIS has made funding impossible to apply for, as the staff is not large enough to manage the paperwork, hence those services are being phased out, and the paid workers involved are out of a job,
    Anyway, not great for providers either, unless they are huge, so that bureuacracy cost is easily absorbed.

      • Yes – my understanding is you are in a different area of Melbourne, but if you were local, you would be one of the groups they would have previously assisted.

      • Can you self-manage?

        We have started doing this and it is giving us access to services that are not registered with the NDIS; should also speed-up acquisition of needed equipment, etc.

  4. This is such a great social tragedy. Our chance to put in a scheme that helps disabled and chronically disabled people and their families. It shouldn’t require a massive infrastructure because the needs should be obvious and the social goodwill and honesty should be there. What have we become.

  5. The Wealth Navigator

    Leith. I am sorry to hear of your situation. With a brother with an intellectual disability and a son with an extremely rare genetic disorder which took 15 years to diagnose properly I understand some of the issues you and your family face.

    But please don’t take it out on ALL of the middle men. I am unpaid volunteer chairman of a charity which build homes for disabled people. We have investors who are putting upwards of $3m into building each of these homes and they won’t get a real return for close on 20 years. In fact i have just come from a meeting with one such investor and a large disability service provider where we may be able to organise accommodation for 24 people with a disability for that service provider.

    These are great people and we don’t want to scare these out the market place to provide appropriate housing for many people who live in sub standard or inappropriate accommodation. So yes some are trying to make a “killing” out of the NDIS, but the reality in this space that these people will be weeded out when they realise how hard it is to operate within the rules and they won’t make the returns they think are there. Trust me we know the returns as within our charity, and our partners, we probably have the foremost knowledge on specialist disability accommodation (SDA) in the country at the moment with around $18m of projects underway

    At least in the disability accommodation space, with limited bank funding being available, we need all the middle men and women we can get to help fund more accommodation as no government wants to fund this.

    • Villages only?

      Or do you also do stand alone houses?

      My son is severely physically disabled, almost 10 years old, we currently rent, and really should be building a house to meet his needs quite soon – but won’t be able to afford to do so. I won’t be able to keep lifting him for too much longer 😛

      • The Wealth Navigator

        Hi the BurbWatcher
        It is very hard for it to be economical to build a single home for one participant and have the NDIS SDA payments cover the cost. We build in effect apartments or homes within home so that the capital cost is spread over as many as 10 occupants who generally have their own facilities. But we can not make the numbers work east of Parramatta in Sydney even on this model. So if you are after a dedicated stand alone home for your family, we are probably not going to be able to build this at this stage. If you are in NSW we do have 2 bedroom apartment type living in Western Sydney, Blue Mountains and Tamworth under construction. if this is you email me at [email protected] with some more info about where you are based and we can put you in contact with the disabilty service provider who does the service provision (we only provide the accommodation) for that location and see if we can help you All the best Wayne

  6. This is entirely predictable for a few reasons.

    1) Governments design in corner cases which makes the overall system and compliance more complex than it should be. Typically corner cases relate to being politically correct, either by avoiding the “poor me” stories or avoiding criticisms of “rorters stealing taxpayer dollars”. Examples: Child Care Subsidy, taxation system.

    2) Massive programs with massive $$$ attract the consultants and politically-connected opportunists. Non-value added activities become institutionalised where private companies can profit. Example: Theresa Rein and the worthless Centrelink training and job replacement services, etc.

    3) Bureaucrats benefit from complexity as it keeps them in a job. Well designed systems require less management and overheads.

    4) Those involved in designing such systems lack comprehensive understanding of Lean principles and customer centricity.

    5) Once complexity is designed in, it is doubly hard to design out.

    6) Lack of trust. Fundamentally whenever there is a lack of trust compliance is more than necessary. I think this is endemic of nanny state behaviour, both by the government and the people. You can see this in draconian attitudes to drug laws and other policy areas.

  7. My son is autistic – he would have been classed as having Aspergers under the previous DSM. I dread the roll out of NDIS to my area, as I’m well aware my son is likely to get reduced or no funding under NDIS. And yet we have seen huge improvements in him after speech therapy, OT and psychology. I have been unable to return to work since having him, so we basically could not afford** any of this therapy without government assistance (we have FAHCSIA funding that cuts out at age 7.)

    **This is also why I have never subscribed, despite appreciating the work you do. Money is just too tight ☹️.

  8. OT rates immediately jumped to the highest allowed by the NDIS. $180/hr, I think. I imagine it is similar whether the therapists is brand new or very experienced.

    I have seen some odd rorting, like therapists taking 10 hours of funding upfront then being hard to contact. It’s practically an honesty system when they can assign the money from the client’s funding to them-self. They only have to worry about being audited or the client pointing it out.

  9. We have the NDIS ahead of us, 4 year old grandson, non verbal, no crawl/walk, food aversion/Mic-Key fed.
    Cerebal Palsy, top little fellow even with all his problems.
    So we are go to try hard to get the best we can out of the NDIS when it comes.
    I think they should have increased Medicare as planned, to fully find the NDIS,
    The disabled are very vulnerable imho.

  10. Speaking from experience, the Commonwealth cannot control fraud in any program. Every agency providing money or a benefit is being rorted. The departmental investigators assigned to combat fraud are too few and held back by risk averse senior management and excessive bureaucratic bullshit.

  11. haroldusMEMBER

    These stories break my heart, and the predictable sneakiness and rorting that’s going on makes me sad for the country and what it could have been.

    Man.

  12. rj2k000MEMBER

    I am aspergers and took years to overcome the shyness to even voluntarily talk to anyone, let alone look in their direction.
    With the tunnel vision, persistance, imagination, and ability to concentrate on problems for long periods, i only got a bit more sociable in my 30s. ASD people can excel if given the right kind of work and understanding, which i have plenty of. There won’t be any sheltered factory/workshop set up by me with current property prices. I currently do all the high-level engineering work and low-level grunt work others could be doing. Everyone else is vegetating away on xboxes and facebook.

  13. BaldbadgerMEMBER

    One of the few posts i have read word for word.
    The frustration i have for this country that should prioritize its resources to those who by no fault of their own struggle on a day to day basis is palpable.
    I have a new found respect for many on this site. I wish you all the best as i sit here with my 6 week old son in my arms in the middle of the night.

  14. Our family volunteers a lot to help families with children with a disability. Let me tell you it’s a universal experience. It sucks watching a family that was already struggling, not just with the experience but financially as well, get shafted by a very poor implementation of a good idea. You don’t have to wonder for long where all the extra money is going.

    It’s Neil Perry Rockpool prices for a box of McDonalds chicken nuggets.

    I’ve thought a lot about autism over my life. I reckon we’re a multidimensional array of stimulus/response. I mean that in the mathematical sense, not the science fiction sense. We’ve got all these ways our mind can work to figure something out, each way is an object in an array, and there are parts from one object to another and eventually we get to the part where there’s a response. Consider individual senses in the context of synesthesia, some people clearly have more connected pathways, consider what effect that has on their response. Barriers to perception will result in the underdevelopment of our response forming.

    I’m really good at reading and writing. I can listen to one or two people talking but I’m not great at gatherings where there are lots of people talking. I can hear all of the conversations and I just can’t process what’s going on, I do my best to follow but unless the person is yelling I’ve usually got no idea. I’ve obviously got some auditory processing issue in the brain but it’s never been a problem for me. Everyone has a processing problem. Everyone. If you’ve got a barrier in those input pathways, man life can be hard.

    I find most people have their processing problems in the middle, you can explain something to them until they’re blue in the face and they just won’t accept reality because their greed pathway is way too strong and overrides their rational decision responses. I have one relative who could have cashed out at the top of Sydney but she’s determined to ride it into the ground. All the evidence I provided her as I tried to help was interpreted as my jealousy in the rise of the bubble and then it was regarded as a personal attack aimed at her mental health as the bubble started to collapse and she just started sending me hateful messages. I try to see the best in people, but looking back at all her interactions with people over the last twenty years had been about her getting other people’s money to leverage into property, and continually refinancing interest only loans on the increase in equity. Now she’s going to have to sell the capital gains tax obligation is probably going to wipe her out.

    Gee, this was a rambling post. All the best for you and your family, UE.

  15. I don’t have experience of the NDIS – but rather the aged care equivalent: the Commonwealth Home Care Packages Program. The underlying principle of “consumer directed care” is sound, and a huge improvement on the previous system where commercial service providers were given a pot of money with little or no transparency and accountability to clients. I believe that there was massive rorting under the old system. Providers had flexibility to move funds between clients, in theory, to provide for those with greatest needs – but in practice there was massive scope for diverting funds to bloated administration and lining providers’ pockets. Now providers are required to administer packages on an account based system with monthly statements so clients can see exactly where their funds are going. Most importantly, clients can opt to transfer between providers. The main problem is that not enough Aged Home Care Packages were funded. However, UE’s experience points to a broader failure in the delivery of public services. “Outsourcing” of public services became popular with senior bureaucrats who saw it as an opportunity to outsource accountability for effective and efficient administration.