Naming values, and the values of names

Being immersed in two projects funded by the NDIS Practical Design Fund, it has been harder than usual to keep up with the rapidly developing NDIS scene. However, last week's government announcement that the NDIS will be known as Disability Care Australia warrants a response, however late.

The announcement seems to have come as a surprise to many, including us, though we have been told the disability sector peak bodies were briefed on the process and given the opportunity to comment.

It is no surprise that some people might see the upside of a word like ‘care’. At its broadest level it carries meaning about compassion, about connection, and who doesn’t want some of that in their lives. The British media yesterday reported the UK government’s response to a public enquiry about health, concluding that the National Health Service needs more compassionate care. I can entirely see how a comparable sentiment may have brought the word ‘care’ to the list of possible names for the National Disability Insurance Scheme.

But this is a word that has layers of meaning, making it a problematic choice for the scheme’s name. And I encourage people not to make the mistake of assuming that name selection is a minor issue, a sideshow that has little consequence given the other important considerations about the scheme’s design and implementation. The name is a brand, intended to convey the values of the scheme. As such it is the first and most telling signal of the scheme’s culture. More on this later.

The difficulty of using the word care is well summed up in the following excerpt from Craig Wallace’s opinion piece for the ABC's Ramp Up:

“Instead of choosing a name that speaks to a new world, of rights, choice, inclusion and control, with people at the centre, we have a moniker that puts people with disability to one side - as people to be cared for. It spells more of the same.”

Hitting a similar vein, the National Council on Intellectual Disability posed the question, “Where is the language of the UN Convention on the Rights of Persons with Disabilities?”

Further, one Facebook contributor to the debate suggested the only way the use of the word care could be less unacceptable would be if it were applied to every Commonwealth government department, for example the Department of Infrastructure and Transport Care, the Department of Prime Minister and Cabinet Care, the Department of Foreign Affairs and Trade Care etc.

In its defence, the Commonwealth government might argue the name Disability Care Australia was a good fit with existing public funding brands like Medicare. Understandable, then, that the government might wish to build a brand stable. However, there remains the question on whether it is the right name for its target beneficiaries – people within the disability community.

In this regard, and in addition to consulting with disability peak bodies, we understand the government commissioned a series of focus groups comprising people living with disability and their families from a range of communities around Australia, and that there was good support for the name Disability Care Australia.

If this was the clincher (and it would have to, because the ‘brand stable’ argument isn’t enough by itself to justify the adoption of this tricky word ‘care’), we might seek to deepen our understanding as to the nature of the focus group participants. One might reasonably assume the focus group membership was derived using sampling techniques typical of market research companies, so that the focus groups bring a range of perspectives typical of Australia's disability community.

If true, fair enough, but focus groups are typically small so there are limits on what a focus group can tell you about trends across a broader population, especially the complex, multi-layered population called the disability community. But let’s just stay a little longer with the focus group issue.

I don’t know the focus group research agency’s identity so I am drawn to this next question: what did that agency truly understand about disability community demographics. It may have known enough to look for focus group participants with, among other things, perspectives covering person and family, metropolitan, regional and rural Australia, and the differing causes or types of disability. But this isn’t enough. However small or large the consultation, a demographic we cannot afford to overlook is the range of experiences that different people have in accessing support. What I mean by this is there are people within the disability community who have had differing types of experience with the disability service system. This includes people who have been ‘done to’ by the system, rendered passive service recipients, neglected or worse, and where the notion of care has become synonymous with an absence of control and choice, of being mis-served by paid carers who don’t.

It is not unusual to find that this particular demographic of painful service experience comprises people with greater degrees of disability and vulnerability, with less voice heard. These are the people who arguably have the greatest moral stake in the new system, because they are often the most distant from good life chances. These are the people we might hope can make the greatest advances in their life chances as a result of the changes.

If this is true, and I believe it to be, then because of the damage done in its name to some of those with the greatest stake in the success of the new system, the word ‘care’ should not have made the long-list of naming options, let alone the focus group short-list, let along being anointed as the chosen one.

The NDIS reflects a set of values the government wishes to advance and uphold; values around control, choice, participation in community life and participation in the economy. For values to truly come alive in any field of human endeavour, every decision and every action needs to be coherent and consistent with those values. Otherwise, the values will die the death of a thousand cuts, where a sequence of misaligned decisions and actions, however well-intentioned, serve to wound the intended values-based culture.

Ultimately, the success of the NDIS hinges on its capacity to live out the stated values, to express a values-based culture that advances people’s chances of a good life. Every decision and action taken will either contribute to, or undermine, the emergence of that values-based culture. Choosing a new name for the scheme is one such decision. Because of the complex and diverse perceptions of the word ‘care’, including for some people a profound negative emotional weight, it doesn’t present itself as an obvious choice to encompass the scheme and its values, and I don’t think the prospects are good for its rehabilitation.

I remain hopeful that the government – indeed the various governments including bipartisan support – truly wish to see a paradigm shift in the way people living with disability are supported, in line with our nation’s commitment to the UN Convention and the values underpinning it. If so, choosing a name for the NDIS warrants further reflection, in the hope that a different name emerges that better captures the values we want the new system to live by.

Will the earth move?

image by  'Leagun' www.sxc.hu

As the disability community watches and waits for the design and implementation of a National Disability Insurance Scheme, opposition leader Tony Abbott did no one any favours when he opined last month that the proposed scheme was an aspirational goal that should only be realised when the Australian economy was in strong surplus.

This brought an understandable reaction from many people within the disability community, and also more recently from members of the Liberal Party’s Parliamentary caucus.

Notwithstanding such pushback, there appears to be increased fretting in political circles about the estimated funding shortfall for the scheme, which rose from $6 billion to over $8 billion as a result of the recent Fair Work Australia ruling on pay equity for staff in the social and community services sector.  

This means the national disability debate could become framed by the timing of the Australian economy achieving surplus, and how aggressive each party’s first budget will be to deliver this surplus should they win government in 2013. 

It is wrong to place increased disability support funding in the context of a surplus economy. Increased funding is intended to advance people's reasonable expectations of ordinary valued life chances. In other words, it is about people getting a fair go, based on every person's inherent value and potential as a human being.

This includes the value of a person having authorship of their own life, accessing opportunities on the same basis as other people, being able to participate in community life, and having authentic active membership of the club called Australia. 

Upholding and advancing these values should not be conditional on an economy in surplus.  And if a National Disability Insurance Scheme is designed to uphold these values, its introduction should be based not on the arrival of surplus but on the principle of doing the right thing.

For contrast, let us look to our neighbours New Zealand.  Despite having a deficit economy that will be around for at least the next several years, the New Zealand government, with bipartisan support, has committed over 8 billion dollars to help rebuild people's lives following the earthquakes in Christchurch.

Some people might argue this is not a helpful comparison because a response to the consequences of an earthquake in New Zealand is different to a response to the consequences of living with disability in Australia.  I disagree, because there are clear similarities.

Both situations involve hundreds of thousands of citizens living with an issue that has had a dramatic impact on their prospects for housing, employment, daily living, health, and participation in community life.

Both situations will cost billions of dollars in remedies, to build or rebuild the capacity of people and communities.

Both siutations involve remedies that will lead to a positive stimulus for the economy.

Both situations are taking place in countries that currently have a deficit economy.

Both situations demand action now, because it would be wrong to leave people in such desperate circumstances.

New Zealand has taken action.  Australia has not.

Be it the large jolt of a high magnitude earthquake or the relentless multi-generational rumble of exclusion and discrimination, the urgency of the imperative is similar.  We cannot wait for a surplus economy before we do the right thing by the Australian disability community.  

Alliance and Momentum

The National Disability & Carers Alliance is currently holding its two-day conference in Melbourne. The Alliance, comprising service agency peak body National Disability Services, Carers Australia and the Australian Federation of Disability Organisations (AFDO), is running this event to further the conversation about the proposed National Disability Insurance Scheme.

With an attendance reported to be in excess of 1000, I had imagined this might have the look and feel of a rally, like an American political convention with people wearing colourful hats and waving flags. Indeed, all the speakers appeared to give enthusiastic support for the proposed national scheme, beginning with assistant Treasurer Bill Shorten and continuing with productivity commission Patricia Scott, Parliamentary Secretary Jan McLucas, opposition spokesperson Mitch Fifield, Greens senator elect Richard Di Natale, and other enthusiastic speakers, including impressive voices from the advocacy sector such as Rosemary Crossley, Sally Richards, Damian Griffis and Stella Young.

However, it wasn't a procession of uncomplicated enthusiasm; there were plenty of people at the conference bearing the battle scars of previous policy discussions that did not deliver true and helpful change. Such scepticism is important because, although the Productivity Commission’s draft report is very encouraging, it is only a report, and the fact of its existence does not give certainty that it will become reality. Many architects have poured their hearts and souls into designs for buildings that never got built.

What is important is the message from the Productivity Commission, through Patricia Scott, that disability support should be regarded as a core responsibility of Government. This is a huge point and goes to the heart of the issue; if we believe that people living with disability have inherent value as human beings, and therefore should have access to the same opportunities as fellow citizens, then it is the core business of the government to ensure this is advanced and upheld.

Similarly, Patricia Scott noted that in the Productivity Commission's proposed model the individual person living with disability is front and centre. This is also a huge point as it is the definitive first step in formally dismantling a system of human services that, despite good intentions, has systematically depersonalised and commodified the people who come to it for assistance.

While there will continue to be a diversity of views about aspects of the proposed scheme, the nature of choice, perspectives on market forces and a host of other elements that might attract passionate debate, here is an opportunity for people in the disability community to find their common voice, for in that common voice lies perhaps the greatest hope for helpful change.

This was highlighted by Bill Shorten who declared that since his move to the portfolio of Assistant Treasurer he has lost none of his passion and anger for the issues he learned about when he was Parliamentary Secretary for disability. I am aware that, along with 999 other delegates, I missed the opportunity to ask Mr Shorten what specifically he might do in his Treasury role to help the Productivity Commission's recommendations come to fruition. Just like Charlie in the chocolate factory, Bill in the Treasury could, should, help good things to emerge.

Perhaps in anticipation of such expectations, Bill Shorten put out a three-word challenge to the delegates; discipline, perseverance and unity. The Productivity Commission completes its work in July but this is no guarantee that its recommendations will be taken up. If I read Bill Shorten’s challenge correctly, people in the disability community need to focus on the common good will that we might all see in a National Disability Insurance Scheme. Like a successful alliance during times of struggle, the focus is on the shared bigger picture, a common goal.

In which case, the most important thing right now is to build momentum, to give the big picture - a national scheme of individual funding entitlement - a life beyond the Productivity Commission. To paraphrase the plea from co-convenor Bruce Bonyhady, tell your friends. And tell them to tell theirs.

Commissioning Productive Citizens: an imaginary conversation

First, apologies for the long lay-off from the blog, which was caused by a perfect storm of annual leave, crushing deadlines and miscellaneous turbulence.  Normal service has been resumed.

The Productivity Commission released its draft report here on the future of disability care and support. The full report is two volumes of around 800 pages and reading it is a formidable task. Even the short version has novella dimensions. However, we might be encouraged by such density if it suggests there has been much sincere thinking. After all, this is a once-in-a-generation opportunity to change the way that our society supports people living with disability.

Since its release at the end of February, the draft report has excited a number of conversations, and people have the opportunity to make formal written comments to the Productivity Commission here by 30 April 2011. In addition people can have their say at the series of public hearings that the productivity commission is undertaking in the main metropolitan areas. These are happening now - click here for details.

It can be hard to know where to start in trying to unpack such a large report. One helpful way is to attempt to describe the report in 15 seconds, as though being interviewed on the street by a reporter. In which case, I would use my 15 seconds to make two points: first, the draft report acknowledges that disability support funding in Australia is profoundly inadequate and doubling-up the funding by $6 billion is a good start; and second, the report proposes a national scheme of entitlement where eligible people living with disability get individualised funding in line with their support needs. This is a very good thing.

If the imaginary reporter found my response sufficiently engaging and awarded me a bonus 45 seconds to talk about some of the main features, I would say the draft report appears to assert the scheme would operate in the context of people living good lives, as valued members of the community and as active participants in the economy, with expectations that mainstream services such as education, health, and transport would be routinely, properly, inclusive.  I would enthuse that support funding would be assessed not just on each person’s present situation but also on the future, with a focus on the person’s strengths, capacity, and vision.

I would also note the draft report says eligible people could receive their support funding in one of three main ways: as a direct payment (“cashed out”), or via a third-party brokerage agency, or via a direct relationship with their nominated support agency. All three options are typical features within the methodologies of Individualised (self directed) Funding operating elsewhere.

So in just one minute, it is possible to identify the most thrilling elements of the draft report: entitlement-based funding, designed to assist people into ordinary valued lives, and personalised via Individualised (self-directed) Funding.

At this point, my imaginary reporter, on the hunt for a ripper sound bite, might ask me what is wrong with the draft report, and to take as much time as I want, because grumpy sound bites are particularly entertaining. I would kick off with the complicated issue of whether people should pay a contribution to their disability support. In the draft report people will not be required to make an ongoing contribution to their own disability support, at least not until they reach the age of 65. This is because people accessing aged care funding are typically over the age of 65, and they are assessed for co-contribution.

I'm not entirely convinced there need be a separate funding mechanism for older people because, if you stop to think about it, the support issues for older people and those for people living with disability are similar; for example, assistance with daily tasks, access to equipment and adaptations, community transport, support to remain connected in relationships,and support to maintain participation in (and contribution to) community life. I think it might be better to have a single funding support mechanism to assist people, regardless of the cause of their circumstances.

I would note to my imaginary reporter that the name National Disability Insurance Scheme (NDIS) is a problem.  The word insurance is not helpful , and I've said so before here. Most people's understanding of insurance is an arrangement where you pay a premium to cover the risk of something happening in the future, so that you receive assistance if it does. However the proposed NDIS will cater for people who already have their disability. Indeed, the people who will be excluded from the National disability Insurance Scheme will be those people whose disability has resulted from an insured event such as a road traffic accident, who instead will be directed to the proposed National Injury Insurance Scheme (NIIS). This parallel scheme is presumably deemed to be necessary because the states and territories have differing approaches for providing funding support for people injured in road traffic accidents etc. The Productivity Commission's draft report says that the states and territories would need to work together to link their various injury insurance arrangements into a national scheme. It will be interesting to see how that plays out in reality, and it will be particularly important that the NDIS and the NIIS have good interconnectivity so there is common best practice.  Otherwise we will create two classes of citizenhood within the disability community.

The draft report envisages the establishment of a new independent agency to run this the National Disability Insurance Scheme. I know there have been some concerns voiced about this and how it might be a vehicle for the perpetuation of unhelpful bureaucracy. However, to be fair to the Productivity Commission, I am not yet clear on what the better alternative might be.

Someone somewhere has to determine the mathematical model that underpins the generation and distribution of funds for the scheme. Someone somewhere has to determine the visionary and strategic parameters for the scheme.  Someone somewhere has to determine the operational policies and procedures that will help ensure that the scheme reflects best known practice in personalised funding and supports. Someone somewhere will need to determine and oversee how people apply for funding support. Someone somewhere will need to determine if the overall scheme is operating as it should be and the extent to which it is making a positive difference in people's lives. 

The alternative to a stand-alone new agency would be an existing federal government department, such as FaHCSIA, or federal government agency, such as Centrelink, or through a dispersed arrangement involving state and territory bodies. Each of these alternatives has its own problems. The advantage of a new stand-alone agency is that the agency can be calibrated, and the people within it recruited, to establish the culture best-suited to assisting people living with disability into ordinary valued lives.

In which case, the problem that I have is not with the idea of a new agency, but with its governance arrangements. The draft report envisages that the new agency will be governed by a board comprising people with expertise in insurance, finance, management etc. Unfortunately there is no mention of people having a lived experience of disability. While the draft report talks of a separate advisory panel where the perspectives of people living with disability, together with other stakeholders, can be channelled through to the board of the National disability Insurance Agency, this will not be good enough to ensure that the agency operates in a way that best delivers an authentic impact on people's lives. The board needs to include members who have a lived experience of disability.

If anything, the problem I have is with the proposed agency's governance arrangements. The draft report envisages the new agency be governed by a board comprising people with expertise in insurance, finance, management etc.  These are all sensible skill sets.  Unfortunately, it is an incomplete list because there is no mention of board member expertise in the lived experience of disability. While the draft report talks of a separate advisory council where the perspectives of people living with disability, together with other stakeholders, can be channelled through to the agency's board, this will not be good enough to ensure that the agency does the right thing by the disability community.  The board itself needs to include members who have a lived experience of disability.

At this point my imaginary reporter is probably interrupting me because I have not delivered the grumpy-and-entertaining sound bite, and is demanding that I sum up in less than 10 seconds the main problem with the draft report.

I would quote Wilagan's Fact, which states:

A good idea is at its most vulnerable during implementation.

In other words, the devil will be in the detail.  Have your say, leave nothing to chance.

The Assurance of Support Funding

As many people will know, there is a growing conversation in Australia about a National Disability Insurance Scheme.  Basically, the idea is that the government collects money from citizens through a tax or levy, and this money is then used to pay for the support needed by people living with disability.

There are attractive benefits.  First, as with all good insurance schemes,  the arrangement should be based on a thorough understanding of the likely demand (in other words, the true support costs associated with disability).  This makes it more likely that the allocated funding has a good fit with people's support needs.

Second, people should be able to get certainty about the funding they will receive, and they can get this certainty early, and potentially without hassle, so they can plan for the future.  

Third, like other insurance, the money you get is portable because it is assigned to the person and not to a state, territory or particular service agency, and should therefore go with the person wherever they happen to be Australia (thus removing all the funding anxieties for people living with disability who move interstate).  

Fourth, because the funding arrangement is directly between the government and the person living with disability, the person has much more flexibility about what sort of support arrangements they would like to have in place.  In this way, a national disability insurance scheme is an expression of Individualised Funding.

I pause here to note that, as with all types of Individualised Funding, a national disability insurance scheme will not necessarily deliver to people the lifestyles they seek.  It is simply a means to an end.  So it is vital that people have informed choices so they have the best possible chance of building a supported lifestyle that is valued and part of the rich associational life of their local community. Importantly, this can help reduce any dependency on traditional,technocratic support agency arrangements that congregate people with other people living with disability, as 'passive recipients' excluded from participative citizenship.  

Similarly, it is important that governments and communities don't make the mistake that a national disability insurance scheme is all that is needed to 'fix' disability.  Governments and communities still have a duty to ensure that everything they do is accessible and inclusive, be it education, transportation, buildings, public spaces, employment and so on.

Otherwise there is a higher risk that even with the funding certainties that a national disability insurance scheme can bring, people will still find themselves in lifestyles that are characterised by exclusion rather than inclusion, and where most people around them are paid to be there.

So, mindful of these cautionary points, I welcome the potential of a national disability insurance scheme.  

However, as already evidenced by several recent conversations I have been in, the term 'insurance' can confuse many people.  This is because, for most of us, the term 'insurance' is understood to mean those situations where we pay a premium to cover the risk of something that could happen in the future, for example to our car, our house, or ourselves.  The key phrase here is 'something that could happen in the future'.  Insurers don't tend to give you an insurance policy for something that has already happened. 

So some then ask, 'how can people have disability insurance if they already have their disability?'   This is a fair point.  A comparable scheme in New Zealand does indeed exclude people who already have their disability.  The NZ scheme, called ACC, is a 'no-fault' compensation scheme that protects people against the consequential costs arising from accidents, including accidents that result in lifelong disability.  Through a levy arrangement that applies to all working New Zealanders, funds are collected to cover the costs of accidents, be it a rolled ankle playing netball or quadriplegia as a result of falling off a ladder.

For those New Zealanders acquiring their disability due to an accident, ACC is the main funding source for the cost of their lifelong support needs.  To access this funding support without having to pursue compensation  through the law courts is obviously a big help for people who have a dramatic change in their life as a result of an accident.  But note this funding supporting does not extend to New Zealanders who were born with a disability or who acquired  a disability through a diagnosis such as multiple sclerosis or through an event such as a stroke.

In effect, this creates two classes of New Zealander living with disability - those who got their disability through an accident and who thereby get  insurance-based funding in line with their support needs, and those who were born with a disability (or who acquired it in some way other than an accident)  and whose access to funding support will depend on how much the government chooses to spend on the disability community overall (as is currently the case in Australia).

So the New Zealand scheme is only a partial solution because it is, in essence, a typical insurance scheme that collects premiums to cover the personal impact of accidents yet to happen.

To introduce a similar scheme in Australia , while bringing obvious benefits to some, will create the same disparities and that's the last thing the disability community needs.

Therefore a national disability insurance scheme in Australia,if it is to be fair and effective, must be structured so that it provides funding support to all people living with disability.  It is still an insurance scheme in the sense that it is based on a thorough understanding of the risk and prevalence of disability in Australian society, plus a thorough understanding of the costs of adequate support so that people can get on with valued lives, and where premiums (collected via taxation or levy) are set accordingly.  However, such an arrangement differs from commercial insurance schemes because it brings the assurance of funding support to all Australians living with disability. 

As such, the scheme is perhaps better termed a National Disability Assurance Scheme.  After all, as the Oxford Dictionary defines it, assurance is "a statement or promise designed to give confidence". That sounds about right.  

I therefore encourage you to lend your support to this idea. For more information about the National Disability Insurance Scheme, click here.  And let's remember that such a scheme is not a cure-all.  We still need to push governments and communities to understand the value of diversity, and to recognise and respond to the rights of citizens living with disability.