A Matter of Trust

Media Release: 2 May, 2013

Is the DisabilityCare Australia Medicare levy announced today a real answer, or simply a means to offset the plunging bottom line of the Gillard government?

Carers Alliance secretary Mary Lou Carter points out the following:

“The trials of the NDIS will commence in a couple of months and will run for four years. They will take place in four  launch sites.”

“Those trials are already funded because last year the Gillard government allocated one billion dollars over four years for that specific purpose, with the partner states putting in the majority of the funding.”

“However, yesterday it was announced by the Prime Minister and the Treasurer  that on the 1st of July 2014 there will be an increase in the Medicare levy to fund an DisabilityCare Australia, which at this point in time is only a trial/launch and is already fully funded.”

Mary Lou Carter has some questions for the Prime Minister and the Treasurer: “What will happen to the $3.5 billion raised each year from 2014 to 2017 totaling $10.5 billion?”

“We want assurances that the levy will be quarantined and invested for the future use of DisabilityCare Australia, not to fill the yawning chasm of the budget deficit?”

“This is a matter of trust and the Prime Minister must finally be transparent in her actions and legislate the quarantining of these funds.”

“The government does not need Coalition support to get this bill through, any posturing on this issue is nothing more than using people with disabilities as political pawns.”

“This issue is a simple issue and it comes down to whether or not this government is worthy of our trust”.

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Carers Alliance NDIS submission to the Senate Committee

Carers Alliance made a submission to the Senate Inquiry into the National Disability Insurance Scheme legislation.  Our submission is found at this link.

The Senate Report was released Thursday 14 March, 2013 and can be found here.

The National Disability Insurance Scheme legislation establishing the launch of the National Disability Insurance Scheme was passed by the Parliament on 21 March, 2013 and the launch of the Scheme will commence on 1 July 2013.

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Who’s government listening to if it’s not people with disabilities and their families?

This article featuring Shairaz pretty much sums up what is happening when it comes to listening to children, young people and adults with disabilities, their families and supporters.

Speaking specifically about the NDIS input on eligibility was open for submissions for ONE MONTH ONLY, from 30 August, 2012 to 28th September, 2012. The biggest states of Victoria and New South Wales did not have even one information forum scheduled for that critical month. Who knew? other than those in the know?

Refer to the Analysis by Dr Simon Duffy in the post above.

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Analysis of Design gives rise to fears for NDIS – Dr Simon Duffy, Centre for Welfare Reform

We know the Federal government is rushing the design, rushing the legislation and rushing the trials. Why the rush is a good question given that the Productivity Commission said the trials should not start until 2014 to enable the government to provide for this complex national Scheme.  Dr Simon Duffy director of the Centre for Welfare Reform in the UK, has recently visited Australia at the invitation of the South Australian government to examine what is being done in preparation for an NDIS. What follow is Dr Simon Duffy’s initial critique:

The commitment by the Federal government of Australia to launch the NDIS (National Disability Insurance Scheme) has the potential to be one of the most exciting instruments for turning disability rights into real rights. However, much will depend on the details of how the NDIS is designed. Early indications give grave cause for concern.

Dr Duffy says:

The current design seems to have the following features:

  1. A Federally controlled bureaucracy will deliver a care management service
  2. There will be no overall budget for the bureaucracy to work within
  3. There will be no strategic role for States, except as service providers
  4. Budgets will be developed by paid Facilitators who will develop a Plan with the person
  5. Funds will be released in accordance with that Plan to citizens or services
  6. The Plan is the central control mechanism and people must work to their Plan and their success at achieving agreed Outcomes will be monitored
  7. All of this will be delivered through a computer system that still needs to be designed but, into which, everybody must be linked
  8. The details of this centralised system will be locked into detailed legislation

Versions of this kind of model have been tried in other countries before now – this kind of model leads quickly to cost inflation and then in turn to inappropriate rationing by bureaucratic control.

I have spent 22 years trying to design decent and affordable systems of individualised funding in the UK. I’ve been lucky enough to also explore other international models. The decision by Australia to develop NDIS was seen by many of us as one of the most exciting international development for people with disabilities – an insurance model that would deliver real entitlements and put people with disabilities in control of their own lives.

However, as it is currently imagined, I think that Australia is in danger of building the world’s worst system of individualised funding.

I do not make this judgement lightly, and it is certainly not what I hoped to find.

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Show us the Money, Bill

Show us the Money, Bill 6 November, 2012

Ms Macklin, Minister for Disability Reform addressed the National Press Club last week and told the assembled reporters:

“You can anticipate additional funding for the national disability insurance scheme in next year’s budget,”

I wonder if Bill Shorten, Minister for Finance can show us the Money Bill that will provide that additional funding. There appears to be a chasm between anticipation and delivery.” said Maree Buckwalter President of the Carers Alliance.

“It is downright cruel to mislead Australians with significant disabilities and their families with tricky language, they deserve better than that” said Mrs Buckwalter.

There was no such anticipation foretold during recent Senate Estimates hearings. There is no additional money in prospect.

“We’ve watched the Senate Estimates hearing very carefully. When asked about the certainty of funding for the NDIS the response was “we are in consultation with the States” which doesn’t answer the question and is shorthand for “we haven’t committed any money past the already underfunded trials”

The certainty people with disabilities have is that the States will put in $7 billion each, the uncertainty is that the Federal government has not committed one cent when looking into the future.

Australians believe a National Disability Insurance Scheme is long overdue. However Carers Alliance is concerned about the haste in bringing the Scheme in earlier than recommended without all the very important and necessary work being in done a measured and considered way. We are worried that the rush is for a political outcome not for the best outcome.

We want a National Disability Insurance Scheme not just an acronym.

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Abbott says: Budget uncertainty threatens NDIS

A National Disability Insurance Scheme is a social reform too important to be used in political brinkmanship and in a bidding war between jurisdictions as to who is the more compassionate.

We are very concerned that Budget Estimates did not confirm funding past the “trials” and this should be a matter for concern for all people with disabilities and carer-families and supporters.

OPPOSITION Leader Tony Abbott insists the government is “crab-walking away” from its promised budget surplus and has warned it could threaten future funding for a National Disability Insurance Scheme (NDIS).

Mr Abbott on Tuesday said the coalition “enthusiastically supports” current government commitments for the NDIS, such as trial sites.

But the scheme needed the funding certainty provided by getting the budget back to a strong surplus as soon as possible.

“I regret to say that this is highly unlikely, indeed becoming increasingly impossible, under the current government,” Mr Abbott told reporters in Canberra.

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Carers Alliance Media Release 22 August, 2012

Media Release                                                                                        22 August, 2012


SEAL THE DEAL ON A NATIONAL DISABILITY INSURANCE SCHEME

Carers Alliance calls on the Prime Minister and the Leader of the Opposition to end the uncertainty that persists on the delivery of a National Disability Insurance Scheme.

“Despite the impending trials there is no certainty that a National Disability Insurance Scheme as recommended by the Productivity Commission, will be implemented” said Maree Buckwalter, president of the Carers Alliance.

“Carers Alliance has today forwarded to the Prime Minister and the Leader of the Opposition a National Compact asking them to seal the deal on a National Disability Insurance Scheme (NDIS)”

“The full implementation of an NDIS by 2018-19 will span at least two terms of government. Which means that without a promise by both leaders the Scheme is subject to the uncertainty that arises when governments change.”

“People who care for and care about people with disabilities, and people with disabilities themselves, hope and trust that a National Disability Insurance Scheme will be implemented.”

“Statements and undertakings made and given by our national leaders over recent months show there is genuine, heartfelt and bi-partisan support for an NDIS which has given us every reason to hope and trust.”

The NDIS is a social good carrying much political capital. It is therefore not unreasonable to ask Ms Gillard and Mr Abbott to bind their worthy words in writing through a National Compact.  Will our hope and trust be vindicated?

Contact: Maree Buckwalter, President              Contact: Mary Lou Carter, Secretary
Carers Alliance                                                         Carers Alliance

Phone:  0425 280 376                                                Phone: 0425 363 421

The Carers Alliance was formed to promote the interests and full inclusion of people with disabilities and carer families

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Carers Alliance Media Release 27 July, 2012

Carers Alliance Media Release                                27 July, 2012

HOW TO MAKE A SOW’S EAR OUT OF A SILK PURSE

“This is what the Gillard government has done to the silk purse that was the much anticipated National Disability Insurance Scheme ”said Mary Lou Carter secretary of the Carers Alliance.

‘At the end of April Ms Gillard told thousands of people with disabilities, family carers and disability support workers rallying in Homebush “‘You’ve waited long enough:’ and led us to believe that the NDIS would become a reality a year earlier.”

‘Looks like we’ve ALL been seriously conned by a government playing wedge politics against cash-strapped States who don’t toe the party line. What is it about fooling some of the people some of the time? Well we’re not fooled.”

“The NDIS is a fair-go Scheme, it would benefit ALL Australians and put us in the vanguard of disability service provision. But it has now been twisted and pummeled into a political football.”

“It is simply unconscionable to play mean and tricky politics with the lives of hundreds of thousands of men, women and children who are severely disabled, and who depend on help and support each and every day.”

“The Gillard government made the promise to introduce the NDIS, then, without any collaboration or consultation, set about watering it down to be barely recognizable, then demands that the States pay for it and deliver it.

The perfect analogy of the Gillard government NDIS is this: In 2014 you could have had a top of the line Holden with all the bells and whistles, but because we’ve spent all the money you’ll have to make do with a bicycle.

Carers Alliance a political party formed to promote a better life for and advance the full inclusion of people with disabilities and their supportive families.

Contact: Marylou Carter, Secretary Ph: 0425 363 421

Contact: Maree Buckwalter, President Ph: 0425 280 376

FYI –

See Chapter 14 Pg 637 of the Productivity Commission Report specifically refers to the funding of the NDIS.

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Media Release 9 December, 2011

Carers Alliance Media Release, 9 December, 2011

Disability flavour of the month, but federal government makes a meal of it

The introduction and implementation of a National Disability Insurance Scheme will transform the way disability services are provided to Australians with significant disabilities. It is a serious business for which the state governments are already earnestly preparing.

Ultimately it will be the states that deliver an NDIS with accountability to the Australian taxpayer for how the money is spent, which is as it must be.” says Mary Lou Carter, secretary of the Carers Alliance

“Yet, so far the Federal government is basically saying to people with disabilities: ‘Look at what we are doing. We are doing anything that looks like we’re going to do something to prepare to seek to find a way to be moving forward while actually standing still.’ People with disabilities deserve better than that” said Carter

“While disability appears to be on everyone’s lips and flavour of the month, the Gillard government is making a meal of it through small-beer announcements that do not confirm the Scheme is good to go. “

“Playing ducks and drakes is unworthy of a government that’s fed the hopes and expectations of hundreds of thousands of people with disabilities, their families and supporters” said Carter.

“People know how the political process works. If it’s not in the budget forward estimates it doesn’t exist nor does it exist if there is no legislative timetable.”

Mr Swan’s mini-budget announced last week does not have an NDIS in the forward estimates and there is no announced legislative timetable. So announcements at National Conference remain as gestures without budgetary backup.

Unless of course an NDIS will be implemented off-budget like the NBN, now that would be historic.

Carers Alliance says to the Gillard government: We’ll believe it when you “show us the money” and the legislative timetable.”

Carers Alliance is a federal political party formed to promote a better life for and advance the full inclusion of people with disabilities and carer- families who support them

Media Contact: Mary Lou Carter, Secretary, Carers Alliance: 0425 363 421

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Fears for NDIS?

This is a press release from Disability Speaks which clearly articulates the fears that Carers Alliance also has in relation to the National Disability Insurance Scheme. It’s political.

Political bragging rights leads a mad rush to the world’s worst NDIS system??

MEDIA RELEASE: November 5th, 2012

It seems on almost a daily basis the press reports on NDIS are taking a turn for the negative

The story below from last week’s Australian newspaper makes for more alarm bells.

Julia Gillard’s history of handling the truth carelessly remains an elephant in the room when discussing NDIS.

Our Disability Speaks interpretation is that the Gillard Government is so desperate to get any NDIS “something”  happening before the next scheduled election that they are desperately rushing through parliament legislation that may not deliver the real outcomes needed. Having a hotch potch of “5 pilot sites”, disingenuously politically named “launch sites” will not mean we have a genuine long term NDIS system guaranteed (yes,there is a huge difference between a pilot program that may run for a short time and a full blown launch of a properly legislated, fully funded, strategically and operationally effective NDIS program.) When Gillard fronts the Australian public before the next election and claims bragging rights for delivering NDIS only the uneducated may believe her? Reports of possible future delays in last weeks press were extremely concerning?

http://www.theaustralian.com.au/national-affairs/state-politics/fears-of-delays-on-disability-insurance/story-e6frgczx-1226508717302

The mad rush to a NDIS is causing serious concern and leading International author on Individualised funding Simon Duffy has become a very vocal critic of what is happening in Australia labelling the current federal government plan potentially  “The world’s worst system of individualised funding??” (Author: Simon Duffy; “Taken from www.centreforwelfarereform.org, a free on-line resource from The Centre of Welfare Reform Limited ”)

Mr Duffy was recently in Adelaide speaking to key sector groups. As the Federal Government desperately rushes through Draft Legislation, due to be presented to Parliament in late November there will be serious concerns within the national disability community that such legislation is fundamentally flawed and should be delayed. Mr Duffy said

“The commitment by the Federal government of Australia to launch the NDIS (National Disability Insurance Scheme) has the potential to be one of the most exciting instruments for turning disability rights into real rights. However, much will depend on the details of how the NDIS is designed. Early indications give grave cause for concern.

I was recently invited by the South Australian government to visit and to explore what has been learned over the last 50 years in designing good systems of funding for people with disabilities. (I will use the term preferred by self-advocates in Australia). My visit happened to coincide with some of the first public descriptions of how the National Disability Insurance Scheme (NDIS) will be designed.

The current design seems to have the following features:

  1. A Federally controlled bureaucracy will deliver a care management service
  2. There will be no overall budget for the bureaucracy to work within
  3. There will be no strategic role for States, except as service providers
  4. Budgets will be developed by paid Facilitators who will develop a Plan with the person
  5. Funds will be released in accordance with that Plan to citizens or services
  6. The Plan is the central control mechanism and people must work to their Plan and their success at achieving agreed Outcomes will be monitored
  7. All of this will be delivered through a computer system that still needs to be designed but, into which, everybody must be linked
  8. The details of this centralised system will be locked into detailed legislation

Versions of this kind of model have been tried in other countries before now – this kind of model leads quickly to cost inflation and then in turn to inappropriate rationing by bureaucratic control.

I have spent 22 years trying to design decent and affordable systems of individualised funding in the UK. I’ve been lucky enough to also explore other international models. The decision by Australia to develop NDIS was seen by many of us as one of the most exciting international development for people with disabilities – an insurance model that would deliver real entitlements and put people with disabilities in control of their own lives.

However, as it is currently imagined, I think that Australia is in danger of building the world’s worst system of individualised funding.

I do not make this judgement lightly, and it is certainly not what I hoped to find.

I will be writing about some of the flaws in the current design at length in a more detailed paper, but I thought it would be useful to briefly set out my ten biggest concerns:

1. The design is financially unsustainable – there are multiple designs flaws at every point; these will then quickly drive up costs. The inflationary pressure that this will unleash will then lead to increasing levels of bureaucratic control: increasing eligibility thresholds, caps on spending, clawbacks and rationing by ‘appropriateness’. Generosity will quickly shift to mean-spirited rationing.

2. The design is fiscally irresponsible – the decision to strip fiscal responsibility away from everyone beneath the Federal government (States, communities, services, citizens and families) is extraordinary and guarantees cost pressures will be created by every person and every agency. No one has an incentive to work within budget and the Federal government will be left with only the worst kinds of controls when it is forced to respond.

3. The delivery system is inherently expensive – so many elements of the design seem extraordinarily wasteful in the short-run: new computer systems, new staff roles, major consultancy contracts. In the modern world I am astonished at this wasteful approach to spending money that should rightfully belong to Australians with disabilities. Instead of building on existing systems, cutting out waste and building on the extraordinary and positive capacities of Australians with disabilities and their families, Australia is in danger of wasting enormous amounts of money as the State’s infrastructure is demolished, only to be replaced with something that will end up (because of its poor design) even more expensive.

4. The design assumes Australians with disabilities are less competent than government at making decisions about their own lives – despite all international evidence to the contrary, including Australia’s own pilots, the model assumes incapacity and locks people into an infantile and degrading relationship with a powerful Federal facilitator. This then guarantees sub-standard outcomes, unhealthy relationships and crisis inducing behaviours.

5. The system will undermine the human rights of Australians with disabilities – although the system may begin by spending more money on meeting people’s basic ‘right to support’ in every other respect it will damage human rights, limit basic human freedoms, invade privacy and damage the perceived dignity of Australians with disabilities.

6. Social innovation has been designed out – the intention to lock the design of NDIS into legislation and to deliver its goals through one centralised system will kill social innovation at every level. The whole system will be slow to change, there will be no space for innovation at the State, community or citizen level. Existing social innovations (e.g. Western Australia’s internationally lauded Local Area Coordination scheme, any other innovative projects that the State has been supporting) will all come under threat and may well be stripped out of local communities.

7. Thinking about equity is confused – equity does not mean offering the same bureaucratic response to every community across Australia. It is not more equitable to give more money to people in communities that have failed to invest in social inclusion, accessible mainstream services, community connections and families. It is not more equitable to give more money to people from families that have disintegrated. This kind of approach to equity kills social innovation, rewards failure and drives down quality.

8. States will be drawn back in anyway – similar models internationally have always led to local government being bolted back into the system at a later point. More importantly, the nature of disability supports means that States will be driven to pick up the pieces very quickly: some people will be found not to meet the ever-tightening eligibility criteria, and so States will be forced to respond, particularly when institutional services breakdown at great cost and when people with lower level needs end up excluded from the system.

9. The thinking is old fashioned – the architecture of the design is archaic and bureaucratic. Australia is building the equivalent of a 1970s IBM super mainframe computer in an era of mobile devices and the Cloud. Modern systems push control and responsibility out towards citizens, allow for networking, assume capacity and enable open source innovation at every level.

10. The project will become politically unsustainable – the design is deeply patronising to people with disabilities and their families and will lead to deep disappointment as the design is revealed, implemented and as the financial problems it will then create, force further unattractive changes. It will strengthen the case of those who, mistakenly, do not want a decent national system. The only organisations that will celebrate NDIS will be management consultancies and the worst kind of service providers – who will see it as a guarantee of funding for their low quality supports.

I am sure that my remarks will seem extreme, but I am not exaggerating my concerns for NDIS. The overall vision for NDIS and the values it aims to support are still good and utterly achievable. But the design of NDIS needs to be radically revised – at every point. Minor tinkering and good intentions are not enough. The problems are deep in the DNA of the current design.

The key to a good system of individualised funding is that:

  1. It creates decent entitlements for people with disabilities – letting people get on and build good lives for themselves, and that
  2. It is affordable and sustainable in the long-run – ensuring that the system gets public backing and is not transformed into a damaging system of control

One possible explanation for why the design is so poor is that too many people are assuming that the primary problem is the under-funding of disability services. It may or may not be true that current funding levels are insufficient. [Although there are significant waiting lists in Australia the per capita cost of services is high.] However, the hope that money alone will solve old problems is leading to irresponsibility at every level.

Good designers focus on making better use of existing resources. Good social innovators focus on helping society make better use of all existing resources. This is not just about money. Social innovation requires a focus on people, institutions and the incentives and structures that influence human behaviour. It would be better to design a smarter and more efficient system, one that makes much better use of existing money and human capacities, from the start.

The other critical assumption that seems to be driving the design is – States cannot be trusted. This is a terrible design assumption and its impact is toxic. When the more powerful say they don’t trust the less powerful then I always think of something that my wife’s Greek Grandfather used to say, The fish rots from the head down.

There is no contradiction between having a National system and having States play an important role in it. National and centralised do not mean the same thing. Further, this toxic lack of trust seems to drip down from the States, to services, to families and to citizens. The approach appears to assume everyone, except the Federal government, is not trustworthy. Sadly the result of the design will be to prove the designers right, for this design will discourage responsible behaviour at every level.

I cannot believe that it is too late for Australia. I hope that States, better service providers, families and – most importantly of all – people with disabilities, get the chance to influence the design and ask for a radical rethink. Otherwise, I’m afraid that many people, not just in Australia – but in the international disability movement – will be deeply disappointed.”

If you are interested in the issues raised in this paper you might like to read the more detailed paper by Duffy and Williams – The Road to NDIS – which will be published shortly. A further report on social innovation and personalisation will be published in association with the South Australian government in the next few weeks.

Disability Speaks does not necessarily share all Mr Duffy’s concerns but is in general agreement with his commentary.

David Holst

Chair – Disability Speaks Steering Committee & Intellectual Disability Association of S.A (IDASA)

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