So the National Disability Insurance Scheme (NDIS) national roll-out has commenced and there has been a lot of noise around it, at least in the disability community. At the moment this noise is a rather cacophonous mix of the hallelujah chorus and a banshee dirge. There are repeated refrains like “person-centred care,” and lots of feel-good stories in the media, but an understandable fear and trepidation from service providers and users alike. The fear was not helped by a recent IT crash and claims of payments not coming through.
Such a confusing mix of complex messages probably deterred other concerned members of the community from considering the issues and perhaps explains why the attention paid to “the biggest reform since medicare” in this past election campaign was anything but proportional to its likely impact on our society. Although that could also be explained by the fact that its being rolled out quite slowly. There have been trial sites since 2012, and it still won’t be anywhere near me till at least 2017.
This post is designed to provide an explanation that might help bring the NDIS concept into focus for people who aren’t familiar with it, and touch upon a few points about it I think need exploring. I won’t explore them in this post, however. I am very conscious of my tendency to write posts that are too long!
Using the INSURANCE concept to explain the NDIS, its aims, its potential and its problems.
So what I haven’t often seen in explanations of the NDIS is a focus on the word INSURANCE, but I think it’s a helpful way to understand what is happening.
The Car Crash and the House Fire:
Let’s say I had really really good car insurance. Some insurance companies offer discounts for safer cars, and some even often free or discounted preventative driving courses. If my car was smashed up, they would pay for it to be fixed, and I would have a choice among dealers whom they approved. Then while it was off the street, they would provide me with a hire car.
Or lets say I had home insurance against fire, and a fire went through my kitchen. My insurance company wouldn’t send me out a pack of standardised new utensils and appliances they had manufactured at the lowest possible cost in their own Department of Kitchen Utensils. They would fund me to buy what I needed to get my kitchen fitted out the way I wanted it again (within reason). They would also probably insist I get my smoke alarms up to date.
But what if I’d been a bad girl and not paid my premiums?
Well I might be able to find a nice tradie to do my car and kitchen repairs cheap. I’d be stuck walking 20 minutes to a crowded train if I wanted to go places while they were working on my car, and perhaps indefinitely if I couldn’t afford to get it fixed. I might be able to get some family and friends to chip in with some of their old kitchen stuff and St Vincent De Paul or the Salvos would probably give me kitchen appliances from some stash they had. There is no way it would be about setting my kitchen up to be what I wanted. Nobody’s going to replace my bright pink hello kitty sandwich press, and I’d be considered ungrateful for asking for it. I’d get the bare basics that people could spare, or that are normally handed out to people like me by special departments set up for that purpose. If I wanted something more or different, I’d have to pay for it myself. I’d be sure to be substantially out of pocket, or to go without.
The Situation of People with Disabilities:
The situation for many people with disabilities wanting to achieve their goals in life now is very much like the situation of the person without insurance. Government and charities offer some standardised services and therapeutic treatments provided by specialised departments. Family, friends and generous professionals sometimes lend a helping hand to fill in the gaps. But the person with a disability has little control, and it is almost never tailored enough, or enough full stop, to enable the person with a disability to live the life they want. Just like if I wanted to avoid being stuck with public transport after a car accident, or get my kitchen back the way I wanted it after a fire, I’d have to cough up enormous amounts of money I didn’t have, or go without.
The 2011 Productivity Commission report which recommended the NDIS put it this way:
“The current disability support system is underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports.”
The difference is that having a hello kitty sandwich press or a hire car is a luxury I would lose through my own fault. Having the same ability to live one’s life and control it as a person without a disability is a human right people with disabilities are losing through the fault of society.
So what is the NDIS Supposed to do?
The National Disability Insurance Act and the National Disability Insurance Rules allow people with disabilities to submit their life goals, and the ways they want or need to participate in everyday life, the community and employment. This might be to move out of their parents home, or to play in their local community sports team. This is a bit like telling the insurance company what my damages were or what I want fixed and replaced. They can also discuss what they need to prevent them needing more support from the NDIS in the future, like early intervention for autism. This is a bit like a safer car or smoke alarms.
Then the person with a disability works with an NDIS “planner” to work out what things are “reasonable and necessary” to help the person with a disability achieve those goals. That is like getting an assessment or quote or valuation for your insurance company, or being given a hire car which is necessary for you to get around the way you want while your car is being fixed. Then the person with a disability can go out and pick how and who provides the supports from approved providers, just like I could go out and get my car fixed at an approved dealer.
Here is a simple example cited by former Disability Discrimination Commisioner, Graeme Innes, in this excellent and spirited positive piece on the NDIS’ aims and significance. (I strongly recommend a read of this as probably the best among the mainstream media articles.) A farmer had high support needs after an accident that left him living in an institution away from his wife and kids. The goals for him were pretty clear, but there was nothing available. Then with the NDIS “He re-graded his drive so his house became accessible for him in a wheelchair. He upgraded his generator to guarantee the 24-hour emergency power he needed. And he chose people from local farming families to assist him in and out of bed each day.”
Sounds great right???
So what’s the problem???
ell this is why I like the comparison to insurance. For the person without a disability, I think this should help them empathise and make the problems fairly easy to see. Know anyone who has ever had to get government funding for something or tried to operate on government funding? Know anyone who has ever had to have those unpleasant “negotiations” with their insurance company just so they could get their house live-able again or their car drive-able again? Does anyone doubt that there is a whole bunch of stress, red tape, confusion, inefficiency, and the struggle of the individual against the system? This whole thing has the potential to become Yes Minister and the Pink Batts scandal meets the Man Who Sued God.
The thing is that Yes Minister and the Pink Batts scandal both involved red tape and bureaucratic bungles in a system that had evolved over 500 years, dealing with issues where it has experience, and catering to persons, at least a significant proportion of whom, are not discriminated against minorities. Here we are trying to engineer a major social innovation. Just as with white governments trying to correct the second-class citizenship of indigenous people, we can expect mistakes, confusion, public backlash and controversy as ableist governments bring people with disabilities out of their long time in the shadows. I have to say as well, the vagueness of the law on this issue, and the discretion it gives will only make matters much worse. See the autism expense issue, and the sex worker suggestions for two examples of surprises and controversies (no opinion of mine implied).
Similarly, the Man who Sued God is about the little guy trying to get what he needs out of his insurance company when the little guy happens to be a highly articulate mature white man with legal training. Not so for many clients of the NDIS. If their disability has no effect on their capacity to advocate for themselves, understand complex concepts, conduct research, communicate, organise and plan, or handle stress, then their maturity, education or culture might. “Supported decision-making” not “substituted decisionmaking” was the catch-cry whilst the NDIS was being developed, but there isn’t a lot of support for decision-making at this stage, and many people are opting to having the National Disability Insurance Agency manage their plans for them. But do you really want an able-bodied bureaucrat or an insurance executive deciding what is “reasonable and necessary” for you to live your life? Arrrgh stressful!!!
Finally, as the Pink Batts Scandal and the Man who Sued God both showed that the answer to government bureaucracy is not to outsource the safety of the vulnerable to profit-driven big business. Yet a major part of the NDIS model is the increased role of the private sector. The NSW government, for example, is privatising its Department of Ageing, Disability and Homecare, much to the chagrin of many, as part of its agreement to the NDIS. Private business involvement supposedly reduces the degree of red tape, but also the degree of protection. There isn’t much red tape when a second hand dealer sells you a new car, but good luck if you think he’s not going to try to rip you off!
Well this blog post is long enough already so the various issues have to be explored another day. The NDIS has great potential for good and for evil, so perhaps the hallelujah and mourning are both warranted. I personally think that this social innovation needs certain broader social innovations if it is to work. In particular, better regulation of the private sector when it performs public role, and development of the concept of supported decision-making. But that is for another day.
In keeping with the information hub aims of this blog, I will put a few links for those interested further: I will add to the resources page in time as well.
www.advokit.org.au This website is very easy to navigate, . As a lawyer, I love it, and I wish that there were more websites like it for things like the Australian Consumer Law, or Discrimiantion Acts. However, it is not suitable for persons who might have difficulty with reading or abstract comprehension, .
https://theconversation.com/au/topics/understanding-the-ndis : This series is definitely weighted towards the negative, and a little academic in places, but all of the articles read together do provide a really interesting overview of and introduction to the laudable aims of and foreseeable problems with the NDIS.
http://www.mychoicematters.org.au/resources/ndis/national-disability-insurance-scheme. This is one of the sites set up to try and help fill the desperate need for support in learning to navigate the NDIS. What is particularly attractive, is that its resources take account of the great diversity among potential NDIS users, with resources in a range of languages, including Auslan, indigenous resources, and, particularly impressively, easy read versions of every fact sheet.