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NDIS – Break It and We’ll All Pay For It

29 May 2018 at 10:39 am
Vanessa Toy
Damning NDIS news stories are not just tomorrow’s chip paper – they are a plague of silverfish eating away at the very fabric of the scheme, writes Vanessa Toy, director with Disability Services Consulting.

Vanessa Toy | 29 May 2018 at 10:39 am


NDIS – Break It and We’ll All Pay For It
29 May 2018 at 10:39 am

Damning NDIS news stories are not just tomorrow’s chip paper – they are a plague of silverfish eating away at the very fabric of the scheme, writes Vanessa Toy, director with Disability Services Consulting.

I recently asked a friend, not in the sector, for her thoughts on the National Disability Insurance Scheme. “A well-intentioned folly,” she said. “Providers screwing the system, people with a disability screwed BY the system.”

I’d love to say I was shocked, but I wasn’t.

The NDIS – an embryonic drive for a better Australia – is in a cataclysmic spiral. Worse than that, it’s not even because it IS a “fatally flawed, blown-out, broken-down gravy-train”. It’s because an ill-informed, headline-seeking narrative has determined it so.

Human nature is such that we are wired to more readily receive negative news than to embrace the positives. We’re more upset by criticisms than we are flattered by compliments and we’re more shocked by failed planning meetings than we are pleased by successful ones. Research tells us the ratio is in fact one to five: that we require five times as many positive experiences to register the same impact as one negative one.

Unfortunately, damning NDIS news stories are not just tomorrow’s chip paper – they are a plague of silverfish eating away at the very fabric of this scheme. They erode the morale, the confidence and the hope of not only participants and their families, but the very people we expect to deliver change.

Right now, one of the most empowering things we, as a community, can do is to change the record. Let’s begin with the fact that the individual and societal potential of the NDIS is limitless and – while not yet a perfect beast – it IS delivering for many, many people across Australia.

To that end, I asked my team, many of whom have lived experience of the NDIS, to tell me “what’s right” with the scheme?

Driven by need, not presumption

For some participants with dual diagnoses, particularly with a mix of mental illness and disability, the individualised, rights-based funding approach of the NDIS is a revelation. No longer doing the shuffle between mental health and disability and having both systems refuse to provide services means that many people are now able to have their support needs adequately funded and can shop around for providers and workers who are skilled in working with the complexities of both diagnoses.

Providers and participants are slowly starting to make the most of the flexibility offered by the NDIS and engage in conversations about how to do things differently – finally developing services based upon what people say they need, not what providers think they need. This is especially true for participants who hadn’t seen an Allied Health professional in years upon years, who now have access to supports they needed but didn’t even know about.

The NDIS is an incredibly well-designed scheme and the early craftsmanship of the Productivity Commission is certainly bearing fruit. Conceptually, the NDIS moves us to a rights-based framework so that people get what they need as a right, rather than having to be grateful (and I shudder to use the word) for any scrap they are granted. Take continence as an example – having enough continence products so you can access the community, rather than being limited and often degraded by “managing” (or not) on a meagre handout from the federal government, is life changing.

All about accessibility

The sheer scale of the NDIS is bringing accessibility into the spotlight in other parts of the economy. We’re seeing companies like Apple, Microsoft and Bupa targeting their offerings to serve their customers with disability. And, in reality, accessibility isn’t just an issue for disability – it’s something that touches the vast majority of us over a lifetime which will likely include ill health and, ultimately, old age.

While the interface between NDIS and other mainstream service systems is the subject of a lot of political scrapping, this has highlighted the barriers to inclusion in these systems that long predates NDIS. The scheme’s insistence that it is not there to fill gaps in other systems will undoubtedly lead to improvement in the accessibility of mainstream services, which over time will hopefully lead to a decreased need for funded or segregated supports, bringing us one step closer to an “ordinary” life for Australians with disability.

Investing for the future

One in five jobs created in Australia over the next few years will be related to the NDIS. This workforce growth is often described as a problem, but it also represents a mammoth opportunity. It’s actually opening the door for many participants, parents and carers to use their immense skills and understanding to establish themselves as service providers in their own right. Not to mention, more broadly, decreasing unemployment.

What’s often missed in the conversation about NDIS cost blowouts is that there are tens of thousands (if not hundreds of thousands) of people who were not previously receiving any support at all. Many of these people are school-aged children, who are likely to have significantly changed life outcomes as a result of the NDIS’s investment in them and their families. If you do still want to talk dollars and cents though, that equates to a reduction in taxpayer costs over the longer term.

Be the change

As things stand, we are facing a sadly self-fulfilling prophecy: if we believe the NDIS is doomed to failure, we will watch it flounder or even contribute to its demise. Right now, with every headline, we are raising our hands in defeat or covering our eyes in horror, instead of making the effort to shape and influence the scheme to fulfil its potential.

The parable of the carpenter tells of a man who, wishing to retire, agrees to build one last house for his master. With his heart not in it, the work is not to his usual standards. When the house is finished, the master hands him the keys and gifts him the home as a thank you for all his years of dedication. Immediately, the carpenter regrets not doing his usual best on his final house – a regret he now has to live with.

The message? Don’t do the NDIS by half. There are so many Australians who have fought incredibly hard to give us this opportunity. We now have a chance to finally get it right.

The foundations are solid, it’s up to all the carpenters – the NDIA, providers and participants – to shape it in a way that will make us proud.

About the author: Vanessa Toy is a director at Disability Services Consulting. An associate of Melbourne Business School in executive education, Toy is a consultant, trainer and executive coach to commercial, government and community sector organisations in the areas of leadership, management and organisational development. Toy holds a masters in organisation dynamics and is one of only a few hundred people in the world qualified in process work, a cutting edge approach to working with complex systems and team dynamics. She coaches leaders from all sectors, and is accredited in The Leadership Circle methodology.

Vanessa Toy  |  @ProBonoNews

Vanessa Toy is a director at Disability Services Consulting.

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  • Colin Penter says:

    No one is questioning that the NDIS is benefiting large numbers of Australians. But to blithely dismiss the overwhelming evidence that there are major problems with the NDIS is naïve to the extreme. These are problems that are not just about implementation but which go to the market based model at the core of system. This article trivialises the serious concerns that have been raised over and over about the NDIS. And raising those concerns is not contradictory with the reality that many Australians are benefiting. What are we to make of today’s report that 4146 complaints were made in just 3 months? Is the author suggesting these are made up or are just “tomorrow’s chips paper”? Is the author aware of the multitude of reports about the failings of the system for many people with psychosocial disabilities? Are these to be dismissed as “silverfish eating away” at the scheme? And the volumes of reports and stories about people who are worse off? Are these to be dismissed and ignored? Acknowledging and discussing the failings of the NDIS issues issues openly and honestly is what is required, not dismissing those concerns because of some belief that ‘bad news stores’ undermine the scheme. And the people who raise those concerns deserve to be treated with respect, not categorised as people undermining the NDIS.

  • Nicole Hed says:

    The NDIA made a lot of promises and sounded good BUT it is cumbersome and doesn’t offer the choice and control it suggested. The $$$ is split into 16 boxes and you get what the planner thinks you should have NOT necessarily what you want or need. People are losing community services and support with NO replacement service. People are being denied help and told that they have a health condition despite being fully treated and there being no cures or treatments. Some people are being helped but the stress and unfairness of the process is inordinate and the knowledge that this is an annual event is daunting.

    • Mark Mills says:

      It is not about wants it is about what you need. this is the essence of the issues, NDIS funds what people need and what is reasonable and necessary. this is not about getting what we want. none of use get what we want. NDIS Guidelines and systems do not fund Education or Health issues, both of those issues are funding within QLD gov and the two relevant departments. NDIA is federal and funds disabilities, yes there is a grey area here as well and know how to correct present the information and issues. there has been a massive lack of community education in regards to this, LAC and supports coordinators included. It does not however change that NDIS is bound by a set of guidelines and rules around how the funding is applied fairly equitable and reasonably against people evidence based needs as oppose to claimed wants. The other aspect here are the NDIS staff and planners who are constant been verbally abused, by clients, advocates and people who do not understand the system, and jump up and down for their wants. The system works for most of the people most of the time, it is a work in progress. learn the system, stop constantly complaining and support the people by working with them. otherwise like the original article stated it will implode, and when it does it will take 20 years to recover, because all of the expertise and knowledge to really be able to help people will implode with it!

  • D King says:

    I feel for the people in the front line, but the frustration is often the result of exhaustion and desperation by people struggling to survive on a daily basis. In my experience, the LAC’s and frontline staff are often just as confused and ill informed about the NDIS as the people they are trying to serve. This responsibility lies with the senior levels – the politicians, senior bureaucrats and well paid upper echelons of NDIA, who seem to despise communication with the public and even with their own front line staff. As a result, front line staff resort to using the inadequate templates they are given to answer questions, even when it is nonsensical. An example is young NDIS clients in aged care, where the NDIA has expectations of aged care providers and nursing homes, but has not communicated these to the sector. No one knows what the policies are, it is total confusion, and the frontline staff at NDIS resort to using procedures which are generic and not appropriate for young NDIS clients in nursing homes. The process is shambolic and the people in charge should be held to account for the mess, stress and waste they have presided over.

  • Vern Hughes says:

    Disability consultants who campaigned for NDIS because they saw a bucket of money waiting for them are NOT the people we should listen to about fixing NDIS now that it has been revealed to be a flawed model. Nor are they the people that ProBono should be providing a platform for. Many people with disabilities and their families knew in their bones that NDIS was a flawed model that was going to result in a bureaucratic nightmare, but our voices in 2009, 2010 and 2011 were ignored by the disability industry. ProBono reported the views of the industry back then, and ignored the voices of users of services and families. It’s time to stop making the same mistake over and over. We need to restart NDIS as a system of personalised supports for living a good life, building on relational ties and natural supports, and removing the disability industry from our lives as much as possible. This is what real disability reform should have been about, but instead we got NDIS. ProBono has been colluding with the disability industry, instead of people with disabilities and their families, in pushing the wrong agenda. It’s time for ProBono to stop backing the failed industry and shift allegiance to people with disabilities and families.

  • D King says:

    As an NDIS participant, the description about “having a conversation” with the NDIS has not been my experience. Here are some of my “parallel universe” NDIS experiences:

    1. I am officially not allowed to speak to our NDIS planner or contact them to ask questions about our active NDIS plan, after our one brief meeting. I understand this is common practice.

    2. The local NDIS Coordinator knows less than myself about the NDIS. I have had to advise them, out of necessity, on the NDIS rules and processes. Thinking of sending them a “participant bill” for all my hard work enabling to do their job.

    3. NDIS contact staff have told me that I should not expect the NDIS Coordinators to know anything about the NDIS, as “they are only a third party!”

    4. The NDIA contacted me by phone to ask about my NDIS experience and to “help them improve” by answering some questions. I asked what the questions were about, and was told rather ominously “you will find out.” I declined to answer questions, not knowing what I was agreeing to. The person on the other end thanked me for my time, but sounded like they straining in extremis from a script to get the words out. This was not a conversation or participation in building something worthwhile for the nation – just big bureaucracy and contracted agencies getting mad when I don’t immediately comply with their KPI’s and performance targets.

    It is time to overhaul the NDIS because participants will never trust a big bureaucracy and big business that talks at them and about them, rather than to them. At the moment it is totally “without us.” We are being treated like the plankton at the bottom of the food chain. So, DSC and Pro Bono, please stop calling it my responsibility to make this scheme work: I have spent the last two years trying to make this scheme work better (without being paid huge sums for my time) and I am tired and fed up.

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