Monday, September 28, 2015

A Fair Trial for the NDIS

The recent opinion pieces published in the West Australian by David Gilchrist, Gordon Trewern and other stakeholders in the disability sector are of great concern to Western Australians and their families.

The views expressed are not the views of people with disability and their families themselves, who want a fair trial for the National Disability Insurance Scheme and the State based scheme, My Way.

The West Australian Government and disability service sector have been vocal in decrying the Federal scheme, stating that 'My Way is the best way.'

But who should get to decide what the 'best way' is? Those who will be directly affected by the scheme, or those 'stakeholders' who have vested interests?

In his latest opinion piece, Gilchrist not only fails to disclose his own vested interests, but tells West Australians that the scheme is destined for failure because the 'amounts being paid for services being paid for services by the NDIA will not sustain the disability services sector'. Ultimately, he says, the risk associated with this concern will be 'borne by people in our community living with disability'.

Gilchrist has strong links to government - as a former Assistant Auditor General and employee who relies on government funding - and is currently the chairman of Nulsen, one of WA's biggest service providers. He asserts that there has been 'no real research into the NDIS' - despite hundreds of thousands of dollars having been sunk into the national scheme's design, primarily on consultancy and actuarial work in assessing the scheme's costs - and says that the scheme is now 'bound by a funding envelope that is artificial.'

Self reinforcing rhetoric is not uncommon at present when it comes to Western Australian disability services. At a public hearing in April, the Disability Services Commission's Dr Ron Chalmers was asked to explain why funding packages in the My Way trial were routinely, on average, over $10,000 cheaper than the national average. He replied that people in the lower South West were encouraged to rely on 'friendship networks' and informal supports. When questioned about lack of access to therapy services, he told the Standing Committee that although people were not being supported to access therapy, it was a 'transition issue'. According to the DG, people with disability prefer to have less money for their funded supports, and would prefer to ask their friends for assistance.

Dr Chalmers : I draw again on 20 years worth of experience to say that, firstly, there are many people who would prefer that type of arrangement to be in place than having to rely on the fellow yesterday who did not have the support worker turn up on the second day in his plan. Those informal networks are very attractive to people and they would prefer to be supported it that way, a more natural way, than just saying, 'I am totally dependent on a funded service.'

A petition signed by hundreds people with disability and their families recently asked decision makers to give Western Australians with disability a fair trial under the NDIS, but their voices and public protests at the Canning election sites went all but unnoticed by mainstream media outlets.

It is a shame that allegedly bipartisan-supported reforms like the National Disability Insurance Scheme have been tainted by divisive politics which are informed by potentially the wrong stakeholders. Disability reform requires a nuanced and complex understanding of social policy, and this can only be directly informed by people with disability themselves.

There is one thing that is certain. Unless we are in possession of all of the facts - the facts about which scheme will work best for West Australians with disability themselves - we will be doing them a disservice by cutting the trial and evaluation short.

What do we need to happen in the NDIS/My Way trial?

- People with disability, their families and consumer representative groups in Western Australia must be directly involved in decision making around the future of the State scheme for people with disability and people with psychosocial disability. It is not acceptable for politicians, service providers and government departments to be making decisions which will directly affect our lives and futures.

- The NDIS/My Way trial must be allowed to run its full course, and people with disability must be directly involved in the design and implementation of the evaluation to ensure that it is fairly and equitably conducted.

- Key issues for different population groups, including the Aboriginal population in Western Australia, the CaLD community, the LGBTIQ communities, people with psychosocial disability, people with acquired injuries (including those who are compensable), regional and remote Western Australia and people who are exceptionally disadvantaged (including people who are living in institutionalised care and people with very high support needs) must be thoroughly examined to ensure the workability and appropriateness of any implemented scheme. There will also need to be close thought and examination of workforce and sector capacity issues and an understanding of how a state based scheme may interact with a national scheme (different residency requirements, portability of funding, safeguarding) and the NDIS legislation.

- A citizen’s jury should be considered as part of any evaluation to ensure that people with disability are independently and fairly judging the merits and pitfalls of each scheme. This jury should be funded by government (either State or Federal) and conducted by disabled person’s organisations.

- People with disability and their families should be given equal voice by media outlets, in political arenas, and in governance and decision making processes around the two schemes.

- There must be specific attention given to choice and control for people with disability, which under the State based scheme is allegedly more limited than the NDIS, to transport in regional and remote areas, to portability of funding and ownership of information. There must be robust analysis about the contention that My Way is able to be delivered for $10,000 cheaper than NDIS, despite higher costs for providers and regional locations, and the assumption that people will be forced to rely on 'friendship networks'. There should also be close examination about the apparent failure to fund therapy services because of 'transitional issues'.

- The bilateral agreement should be closely examined in relation to the impact upon choice and control for people with disability, as should the My Way emphasis on service provision.

- People with disability need to have roles as critical questioners in some of the key differences between the schemes. For example, it takes much longer from time of consent to time of plan approval in the My Way scheme. In the NDIS trial, more people are found ineligible. There is a vast and unexplained discrepancy in package sizes (ten thousand dollars more in NDIS) and My Way claims to have 34% self management, with no breakdown regarding shared management costs. Alarmingly, there is no available data from the My Way trials about complaints, internal reviews, AAT applications, safeguarding or satisfaction ratings.

- Modeling should be carried out about how a person will not be worse off if they move from Geelong to Perth, or vice versa. Portability was one of the key components of a national scheme, as was certainty - will certainty of funding be guaranteed under a state based scheme that sits separately from the NDIS?

- We need to ask and address key questions about certainty and change in the future. Will improvements/legislative amends are made in national scheme - will My Way just get left behind or will it seek to provide parallel level of benefits? How will they guarantee "not worse off" into the future?

Image description 1:

Three vests sit on stands. One is an Argyle sweater, the second is a standard vest and the third is a life jacket.

The Vested Interest Exhibition
The WA Government and Public Service has a vested interest in a successful My Way trial. They care about their jobs, power and control and will do anything to make sure they retain that, at any cost.

The big service providers have a vested interest in a successful My Way trial. They are in corporate survival mode, and will do anything to survive, no matter what the cost.

But what does a vested interest look like for people with disability and their families?
You think you're stakeholders, but this is about OUR LIVES. We want a FAIR TRIAL for the NDIS.

Image description 2:

A group of protesters holding signs speak to a politician about the NDIS My Way trial. One of the signs reads, 'A Fair Trial for the NDIS'.

Transcript of the Opinion Piece in today's West Australian.

The West Australian, Monday 28 September 2016
Summit throws down gauntlet on NDIS cost
By David Gilchrist

Last month’s National Reform Summit was one of he first realistic and open policy discussions we have seen in Australia for a long time. It included participants from industry, unions and non-profit and community groups and, essentially, laid down a challenge to politicians to implement real reform in a comprehensive rather than a piecemeal and politically-averse way.

One of the key areas of focus was the National Disability Insurance Scheme, and for the first time industry and government leaders are realising the challenges of implementing this critically important policy.

The summit identified that this important initiative was likely to be more expensive and more complex than seemed to be understood in policy circles and that the rollout of the scheme was at considerable risk if there was not a more realistic policy discussion – focused on demand and true cost.

This observation has not come too soon. The NDIS was established during the death throes of the Gillard/Rudd governments and was not well researched or planned prior to the commencement of the trials around the country, primarily because the political drive to be seen to get it started overshadowed the research and planning that should accompany any massive policy implementation process.

Because there was no real research undertaken, and because we still do not know what the levels of demand or what the true cost of service delivery are likely to be, the National Disability Insurance Agency, the government agency charged with implementing the NDIS, is now bound by a funding envelope that is artificial.

This policy corner into which the NDIA has been painted may lead to a significant disruption of critical services to some of Australia’s most vulnerable people if the true cost of service delivery and likely demand are not identified and service providers are unable to operate because of lack of funding.

Combined with higher than expected likely demand – estimates of which were originally based on service user and ABS data which did not match the eligibility criteria now applied by the NDIA – the current $22 billion funding envelope is being stretched by the NDIA as they attempt to fund service providers at unrealistically low levels.

There is growing and justified concern that the amounts being paid for services by the NDIA will not sustain the disability services sector. Ultimately, the risk associated with this concern is borne by those people in our community living with disability.

To be sure, $22 billion is no small amount and we expect any government agency to be frugal with taxpayers’ money. However, the issue is not that these things cost a lot of money or that we should simply throw more money at the problem. Rather, we need to understand the problem before we can identify an effective solution. Without a government appetite for finding out what true cost of service delivery and demand is likely to be, any attempts at identifying efficiencies will be ineffectual and the sector itself cannot focus on assisting government to find solutions.

Commonwealth government funding is critical for sustainability of the disability services sector. However, local decision-making and disability service sector involvement is also critical. The WA experience is a case in point. The Disability Services Commission “My Way” model is likely to help ensure local decision-making and control build on the use of national resources for a better and more efficient outcome for service recipients. Indeed, local decision-making strengthens integration of services – both NDIS funded and others which, in turn, helps engender efficiencies.

The popularity of the NDIS is a very important political asset. Such popularity can be used to allow the Federal Government the political latitude needed to identify the real demand and true cost of service associated with this scheme and to build a plan involving sector cooperation and thoughtful funding arrangements over a longer period. Indeed, the accession of Malcolm Turnbull as prime minister may also allow this to happen. Arguably, he has the political capital needed to reset this important initiative.

The summit’s call for realistic debate may be the circuit-breaker needed to jolt policymakers and commentators into thinking more comprehensively and with a long-term view.

Professor David Gilchrist is the director of Curtin Not-for-profit initiative and a Director of a major service provider in WA.

Sunday, September 13, 2015

The Specificity of Pain

‘White people weaponize both the concepts of individuality and equality in order to deny that they constantly perpetrate patterns of abuse by denying the specificity of marginalized experiences and pain (which, in itself is a form of abuse).’ – Cassandra L.

I sat in front of the man at the conciliation conference, and he looked at the file. For a long time, fixedly. Finally he spoke.

‘You said in your message that you were ‘slightly concerned about how this is going’. That really doesn’t reflect that you felt discriminated against, or that you were hurt in any way, does it? ‘Slightly’ concerned?’

I blinked. We were there to discuss a physical barrier that his organisation had installed to prevent cars from entering a site. That had also stopped me and other wheelchair users from entering the site, something they admitted that they hadn’t thought about.

I could feel my face reddening and my throat closing up. The last time I’d been in this room, I’d been at another conciliation meeting – a hearing where we’d talked about another discrimination matter, one which had cost me two years of my life and a fairly solid dose of PTSD. Sitting here, in front of another man in a suit, was actively causing me further pain. Pain, denied, unless I caused myself further pain by expressing it.

‘I wasn’t going to bleed all over my messaging to your employer,’ I finally told him. ‘I like her, and she’s being attacked from all angles about this issue. But yes, I was hurt. Yes, I was and am upset by the fact that I was physically prevented from going to work on this day. I don’t imagine you know what it’s like to be stopped from going to work in the morning…’

‘You don’t know anything about me!’ His face was red and his voice was a near shout. I didn’t know what trigger I’d hit – nor did I care. I collected every piece of my composure and injected it into my mother’s voice, channelled from the grave. Calm, British, reasonable.

‘I don’t know anything about you,’ I told him. ‘Nor do I want to. But I can look at you and see an able bodied man in a suit, who walked into this office. I am using that observation to make the assumption that you are not a wheelchair user, nor have you ever been prevented because of your physical disability from attending a place where you needed to go for work. Unless your colleagues bricked up your door in the office one day as a practical joke.’

To my alarm, I felt tears welling in my eyes – not only because I was wounded, but because this man was doing exactly what Cassandra L describes, denying the specificity of marginalised experiences and pain.

This was the same man who had told me, in a phone call, that ‘the collective good must outweigh the entitlement of the individual’.

It’s always hard to articulate the experience of discrimination and the impact that it has upon you. Nor do we always want to. There’s something peculiarly humiliating about admitting that you’re being marginalised, that you’re being abused, that you’re being discriminated against, that you’re being treated as a second or third class citizen. Our default response is to muster any semblance of dignity left to us and shield ourselves against the inevitable experience of 'pain denied' or an accusation of being angry, or bitter.

It’s the disability equivalent of wearing makeup to conceal the black eye he gave you in the kitchen for the third time this year – the grasping of any scrap of self esteem that might remain to you after all else has been torn away. Don the dark sunglasses, girls, because nobody needs to know that snot dripped from your nose as you sobbed, bleeding, in a corner. Nobody needs to know that in that one moment of furious injustice, your heart quickened and your mood grew bleak. Nobody needs to know that the thing that seemed reasonable to them at the time – because there’s always a reason, isn’t there? – has the cumulative impact of a thousand slaps, lightly delivered, more powerful for their subtlety. If you kick a dog every day, it will not take long before that dog flinches, expecting the inevitable.

Slightly concerned about how this is going. I wrote that, my dark glasses covering my eyes, my dignity wrapped around me like a bulwark against pity. Those thousand slaps, delivered daily. The psychologist who told me that that I was very lucky that the downstairs business had agreed to let them use their rooms, once a week, on a particular day. The businesses that I could not access, the workplace who refused to install an accessible toilet. The doctor who told me that in the absence of having an accessible toilet to address my menstrual needs, I could perhaps consider a hysterectomy. The man who described my human right to equitable access as ‘the entitlement of the individual’.

We fight this, daily – not just we people with disability, but every other marginalised group. Some barriers might be physical, but they are installed not just by workmen but by discriminatory attitudes. It’s all about power and control and the imbalance of power between those who are marginalised and those who hold the reins of power.

What choice do we have but to fight back? Like that dog, I do not want to be hurt again. But we only have two choices, to slink away as far as we are able, knowing that we will be kicked again tomorrow, or to bite. To fight back. And we are not dogs – there are others experiencing marginalisation and pain beside us. No choice, then, but to fight. Even when we understand that the fight is uneven.

We fight to live. And we fight together.