Wednesday, June 8, 2011

NDIS: Framing disability

Funding disability support services has an overriding purpose: social inclusion.It is what the Australian-signed UN Convention on Rights of People with Disability (CRPD) is about. So is the National Disability Strategy. These are underpinned by important disability principles and rights.

In the UNCRPD, the definition of disability is crucial to its entire rights framework. The idea that disability arises from the interactions of effects of impairment, social attitudes and values as well as from environmental barriers, shows these processes as responsible for a high level of vulnerability for people with disability. That understanding also informs us that it is at this level that remedies to the generally socially devalued position of people with disability must be found. In other words: to reduce their vulnerability and advance their wellbeing. Inclusionary disability principles and rights, enshrined in law and strategies, have been hard-won, and stand on the shoulders of decades of activists, practitioners and researchers. One would expect that any new approaches in funding services, such as those in the proposed national long-term care and support scheme (or NDIS), are coherent with these. Unfortunately the current NDIS proposal is not.

The Productivity Commission's draft report grounds its beliefs and assumptions in a market-based approach. The starting points are cost-effectiveness and efficiency with competition a driver towards their maximization. Not disability principles and rights towards being recognized and treated as inherently, equally worthy citizens who have their needs met in quality, integrative approaches. I do not remember any disability movement's call for 'revolutionising' disability services through efficiency, for example. Yet the draft report, and the public campaign that is so strongly entwined with it, despite the artifact of the Commission's 'Independent Panel', tells us that such an approach represents fundamental change. It apparently believes that efficiency is all we need. Not that it talks much about our needs, or their nature.

Re-defining disability

The Productivity Commission's report mentions the CRPD, but portrays it in a pale light, achieved through quotes from submissions which appear to suggest that the Convention is a light on a hill, but not something we have to hurry towards. It does not frankly endorse the Convention as a national commitment to a values change, one to be pursued now - not tomorrow. Perhaps then on the never-never?

The Draft report says there is no one definition of disability. This is true, but our most advanced understanding of disability, contained in an international legally-binding agreement, is that of the UNCRPD. Besides the UNCRPD and World Health Organisation (WHO) definitions, the report also takes those of the Australian Institute of Health and Welfare, and that used in the Australian Bureau of Statistics (ABS), which describe disability from a view of deficiency, focused on impairment. In its own synthesis of these definitions, the Productivity Commission's report then advances its interpretation of what should be, in its words, a different 'way of talking about disability.' By that it means reframing contemporary understanding of disability by re-asserting the importance of a medical understanding of it. As it puts it: "a more scientific approach to disability would see [disability] as both a social and medical phenomenon" (1.6, Vol 1). Back to the future: impairment once again equaling "medical."

The reasons for this reframing seem to arise from a need to cost the scheme's projected expenditure. It mainly does so by costing a set of 'core interventions' to people who have significant impairments. Core interventions are those services and therapies that are linked to medically labeled impairments and can be represented in impairment tables, used in eligibility assessments. The problem is, when primarily linked to assessments of cost-effectiveness of the interventions (why cannot we just say 'assistance?') such processes are more likely to lead to ticking boxes of cost-effective 'interventions' than towards realising an aim of social inclusion. In fact, the report's values-free approach also circumvents the CRPD's right to supported living in the community by opaquely suggesting that funding integrated or segregated disability service or support ultimately depends on their cost-effectiveness, not inclusionary principles. For example, it states:

...it may be difficult to fully meet all the community's objectives of a new scheme, reflecting the need for any scheme to be financially sustainable and practical. There may also be tradeoffs between some goals. For instance: effective integration of support services may be costly if there is a large amount of supporting infrastructure required to do this, or significant implementation costs in changing from one type of approach to another. (1.12)

In any case, it is otherwise ominously silent on the issue of segregated or integrated approaches to being of service.

Of course all expectations cannot be met, but we are entitled to demand an NDIS that would explicitly support the UNCRPD's objectives towards having real choices about living, working and recreating alongside everyone else: i.e.full inclusion.

Could it be that we have stopped hearing the earlier campaign talk about a quest for our 'good lives', and escape from 'apartheid' because these are a bad fit with this report's recommendations? Of course, financial costs matter. So does impairment, as one part of the disability definition. But in having these factors trumping disability principles and rights, the report reframes a prevailing understanding of disability as primarily socially-created, to one of an economic/medical issue. Now that creates a fundamental problem for disabled people because such a stance stands in the way of our social inclusion. The motivations and attitudes underlying the provision of a wheelchair or support service do matter. They determine how well these things are matched to our needs, to their quality, and whether they mean sitting in a cost-effective wheelchair in a day-care centre or, living and working alongside everyone else, to our level of capacity, fulfilling our human potential.

Still, we should not be surprised that this report takes a market-based, economic cost approach. It is our society's, and governments' religion. So too this is how this campaign was first conceived. It took a severe and profound category of people with disabilities to get its first, actuarial, bearings: Cost first. Not needs. Marketing next. IIl-serving our social inclusion.

Nevertheless the increased resources that the NDIS draft report offers, along with other proposals for individual funding, could represent improvements in the lives of people with disabilities. Including a flexible interphase between aged and disability 'systems', and its proposed attention to Aboriginal people with disabilities. However, the report's beliefs and assumptions about disability and its remedies negate their benefits. Most of the problems in this report arise from them. It raises many questions that require answers.

Fundamental reform?

The report, like the campaign, proposes fundamental reform. But its nature is structural, not fundamental, as it merely takes a prevailing marketisation trend in human services, and puts it on steroids in the disability area. In the spirit of the accountability and transparency that it says it prizes, clearly the onus is on it to provide evidence of the effectiveness of its market-based approach towards social inclusion. That it fails to do so, should set off alarm bells. There simply doesn't appear to be any! It does, of course, offer some of the literature showing benefits of person-centred individual funding. But this is no substitute for justifying its market-based approach, as person-centredness starts with an understanding of personal needs in dynamic relational settings, not with cost-effectiveness, assessment technologies and contracts. Under this NDIS, individual funding, subject to an impersonal, 'independent' assessment through a 'tool kit' will be driven by cost effectiveness.

Many of the problems associated with this report arise from its philosophical orientation which works more to the benefit of government Treasuries and financial sustainability of services than people with disabilities, the least powerful party. Vital conflicts of interest left unexplored. Yet the campaign is overwhelmingly delivered in our name. Curiously however, the brokenness of the disability services system that the inquiry takes as its rationale, and the campaign trumpets, is not examined in the report. But how many of the barriers that 56% of Shut Out respondents identified arise from disabling service values, meaning ill-targeted needs and unnecessary bureaucracy? Big savings might be made if it did, leading to immediate improvements, well before 2018. However, that would require engagement with principles, and with that same disability service industry. And engagement with substantial, complex issues has been absent from the entire NDIS marketing campaign. It mainly counts heads, not what's in them.

Participation

Consistent with early exclusionary processes in the pre-NDIS inquiry process, the report forgets to recommend our meaningful participation at every level of the NDIS bureaucracy and services it funds, excluding us from its governance on a proposed commercial board, with the scheme's effectiveness overseen by the obvious experts in disability - treasury. Of course, we hang off that structure in the obligatory appendage: an advisory group - together with the usual bevy of other interests, as per our ineffective National Disability Council. All under control - just not ours. We should question what sort of entitlement this is.

What does it come down to? Disabled Australians are in dire need of fundamental, and real change - a values change. There are serious present and near-future challenges to our safety and wellbeing that demand it. We see government and Opposition demonizing anyone who is not working, as an unproductive burden. They play a double game in apparently supporting improvements to our lives, while serving their economic agenda: slashing the numbers on a DSP; meeting industry demand for workers; saving money by privatising disability services. It's all about money - a singularly weak buttress to our wellbeing, as social inclusion cannot be bought and the economic future is wobbly. How can we believe otherwise, when the government has a dismal record in employing us in its revenue-funded public service, but wants to push us into the private - cost-saving - market - patronizingly, for our own good, without itself walking the talk?

Further, increasing 'natural' disasters associated with unfolding effects of climate change will also challenge Treasuries' capacity and willingness to support us unproductive unfortunates. A severe global energy shortage is as close as 2013, as the conservative International Energy Authority has been trying to warn governments for years. At the same time these developments will further increase the vulnerability of disabled people. The report's oblivion to the imminent impacts on us of these issues seems astounding, especially given the actuarial and economic credentials it rests on.

Conclusion

A disability movement that backs this market-based NDIS initiative is confusing our need for more individual choice, and independence, where admittedly we come from a very low base, with that of the self-interested kind of consumer choice and competition that is the market. We need real choices in living good, integrated lives where independence means being supported to reach our individual human potential. A disability movement betting on the market is actually undermining a social inclusion agenda, an agenda that should be ours.

The Draft report believes that "the key test of a new scheme will be the extent to which it can address existing deficiencies in an equitable, efficient, cost-effective and accountable way." Should that not be to what extent it can support people with disabilities in having our needs met, in ways that maximise our social inclusion - our Good Lives?

Social inclusion involves relational processes of engagement with difficult issues, respect, trust and openness. Not top-down marketing and appeals for 'unity' where substantial issues are never really explored. Perhaps we should not wait for the Promised Land of an NDIS - not this sort anyway. It seems high time for putting our limited energies into strategies, practices and coalitions that can do, and advance, social inclusion today. An NDIS with such an orientation, having some market notions as its servants, not its master, might work.

(This article also appeared on the ABC Ramp Up site here where you can continue to comment, as you can on this blog).

Tuesday, May 24, 2011

Submission to Productivity Commission NDIS Draft of Feb 2011

While the public submissions to the government's inquiry into a National Long-term Disability Care and Support Scheme are appearing on the Productivity Commission's website at a slow rate, I thought I'd publish mine now. It follows:


Submission to Productivity Commission inquiry into a National Long-term Disability Care and Support Scheme.
Dr Erik Leipoldt PhD
April 2011
Dear Commissioners,


Please accept these comments, suggestions and questions by way of my submission to the inquiry on a National Long-term Disability Care and Support Scheme, aka NDIS. I have personal experience of quadriplegia since 1978 and have experience in disability policy advice, advocacy and advocacy development, service provision and adult guardianship as a Tribunal member. My formal qualifications include a PhD (Philosophy); B Soc Sci (Hons); Assoc Dip (Human Service Administration).

The comprehensive Draft report offers a number of benefits, such as individual funding, flexibility in interface between disability and aged care systems, attention to Aboriginal people with disabilities, and greater stability of funding. These, unfortunately, appear to evaporate in the light of the report’s values-free market-based approach to disability service. Besides there are many other problems with this report.

People with disability in Australia do indeed need fundamental change in the nature and extent of their care and support towards their full social inclusion. The recommendations in this report however will not give them that change. Social inclusion in the straight jacket of the market is not social inclusion. In the interests of people with disabilities, and those supporting them, this report should be significantly amended on the basis of:

  • ·         the incompatibility of its market-based approach with meeting real needs of people with disabilities for social inclusion, as required in the UNCRPD (especially articles 5, 19) and envisaged in the National Disability Strategy;
  •  ·         not supporting its market-based approach as a viable route to social inclusion, with evidence of its effectiveness. As the proposer of change in the status quo the onus is on the Commission to do so;
  •  ·         not basing itself on principles and rights, including the interactive definition of disability as in the CRPD;
  •  ·         its inevitably inaccurate costing, in avoiding an examination of how resources are used to meet needs in the present ‘dysfunctional’ system;
  •  ·         its non-participatory approach at any meaningful level and functioning of an NDIS;
  •  ·         its non-consideration of imminent economic effects of climate change and an impending oil crisis in how disability support is funded;
  •  ·         its failure in making suggestions on how current, small-scale initiatives that meet needs well, but might fail an NDIS cost-effectiveness benchmarking, would be safeguarded against de-funding;
  •  ·         its inability to provide a secure funding mechanism that would provide a stable basis for the social inclusion of people with disabilities in Australia over the next 40-50 years.
Instead the report should be rewritten from a starting point of needs, based on established principles and rights. I restate my suggestion for a needs-based scheme which pays attention to needs, takes responsibility for meeting them, does so competently and in responsiveness to their outcomes, involving participative relationships (Tronto, 1994, 1995). My submissions #109 and #471 to this inquiry refer.

Further, implementation of a disability allowance which recognises the substantial extra costs associated with living with a disability should be considered.


My beliefs and assumptions

My beliefs and assumptions underlying the below questions include:

A market-based approach based on cost-effectiveness and efficiency is not coherent with processes and aims of social inclusion and cannot therefore achieve them. Social inclusion is not built on contractual arrangements, cost-effectiveness, efficiency and competition. It involves co-operative relationships, trust, generosity, creativity and long-term commitment. The market chicken is unable to produce a social inclusion egg as they are different species.

The draft report’s apparent weakening of the importance and relevance of the UNCRPD to disability support, including its reframing of disability as including a medical dimension, is taking the disability cause of social inclusion back to prior to 1981, the International Year of the Disabled. This is a highly undesirable development.

The quest for ‘participation’ appears as mainly one of increased economic participation, in the main interest of the government’s financial bottom line. A meaningful commitment to increased social participation is absent in the report. Meaningful participation by end-users in every level and functioning of an NDIS/NDIA is not seriously considered. The proposed advisory council to a commercial board running the NDIS is an ineffective participatory mechanism and suggests tokenism. It also emphasises the dominant role of the market over that of n end-user-identified needs basis. The point of insisting on real participation at every organisational level, including in the services NDIS funds, is to engender a closeness to the lived experience of disability, which could better connect an NDIS bureaucracy an ability for meeting real needs. Presently, its contractual, cost-effectiveness starting point and ‘independent’ assessors do the opposite.

In any case, it seems not possible for this proposal to be needs-based in absence of its articulation of what fundamental human needs are, nor discussion of appropriate processes of person-centred needs assessment. A comprehensive review of best practice in individual needs planning, on the basis of their findings concluded that an optimal person-centred needs-based process starts with the “Intention – reason for planning”, next “Effectively identifying needs”, and “Developing appropriate strategies to respond to needs and aspirations”, before “Implementing identified strategies and from reviewing outcomes (Parsons, Cocks & Williamson, 2009 ).” In this NDIS proposal interests of Treasury, disability services industry and persons with disabilities have largely been promoted in the name of the latter but in fact the first two most powerful parties’ interests are paramount. The main ‘intent’ of the scheme has unfortunately been clouded. The same could be said about a conflation of needs of people with disabilities and that of carers where some needs overlap and some provide a conflict of interest, noticeable in particular in the report’s disturbing vagueness on any commitment to ‘good’ community-integrated lives, as opposed to segregated/congregated options (apartheid). It seems to have resulted in recommendations that are stated as in our best interests but appear to mostly serve financial sustainability purposes of government and services. Of course many support initiatives need money and the two are interlinked. The $13B question is what drives the process: needs of vulnerable people or financial needs of others? Starting with the money, as this NDIS campaign has done, is unlikely to lead to meeting real needs well. It is a recipe for more of the same, on steroids. The 56% of Shut Out respondents who identified ‘barriers’ will likely find the same attitudinal barriers to the achievement of their ‘good lives;’ under this NDIS. 
This draft report steers a course towards a greater role for cost-effectiveness/efficiency/competition motives, where business partnerships are thought to deliver cost-savings to government and services, and likely, even profits. And cost-saving and profit taking are powerful motives in meeting those needs that are easier/cheaper to meet and make profits. Complex needs are less attractive to a market. Implementation of this NDIS proposal is in line with the National Compact, the Howard initiative of the Centre for Social Impacts agenda and its WA government-supported initiative, the Economic Audit approach to social services. These cause strong tensions between a market ideology and hard-fought inclusionary principles and disability rights. They involve service-as-business, large providers and token end-user participation under a rhetoric of increased choice, which is in fact constrained by criteria of cost-effectiveness and efficiency. Once these changes are implemented, service to people with disabilities will have undergone a fundamental structural change. It will however do little in shifting present disabling attitudes and practices that underlie a service system that does not meet needs well. In other words, not fundamental change at all.

The draft report’s starting claim that 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” is part true and in part constructed to give its own answer: the situation seems, in the eyes of the Commission, no more than a market failure (as in its Aged Care inquiry report), requiring market-based remedies. Had it considered the nature of vulnerability of people with disabilities it would have drawn different conclusions about underlying principles to an NDIS, and how it ought to be run, monitored, evaluated, and individual needs assessed.

In talking about this fragmented, crisis-driven service system, at no point does the government or service industry accept responsibility for it, almost as if it has fallen out of the sky. There are always great dangers associated with wholesale change which does not understand the relevant underlying history, disregards available practice and research in favour of a state (market) ideology, and which has little basis in fact in the realm in which it is applied, in this case the support of a highly vulnerable group of people. 

The absence of any mention of a need for strong, independent disability advocacy as a principal safeguard to vulnerable people with disabilities is noted. This would be of particular relevance to the large, central bureaucracy proposed in the draft report.  Ignoring a role for advocacy seems a further indication that the Commission is more a believer in the invisible hand of the market in correcting ‘market anomalies’ in disability support, than it does in the power of such safeguarding mechanisms as protecting and advancing their social position. Its recommendations for awareness campaigns for example seem not based on evidence of the ability of such campaigns to dislodge and transform deeply held prejudices and fears about (people with) disability. I am not aware for example, of such campaigns helping people who experience racial prejudice or by reason of gender or sexual orientation achieve valued citizenship. In disability the causes of vulnerability are deeper still. Real transformations towards acceptance of someone with disability as of inherent equal human worth only come about through knowing a person in day-to-day relationships. Such relationships require a commitment to integration of people with disabilities and rejection of their segregation/congregation. Commitments such as the report appears to defer to the power of cost-effectiveness assessments (p 1.12), not principles of what is good for people. I accept this Wolfensberger definition of integration: “adaptive participation by a socially devalued person in a culturally normative quantity of contacts, interactions and relationships, with ordinary citizens, in typical activities, and in socially valued physical and social settings.”

The two-prong proposal, ie two schemes based essentially on the physical cause  and circumstances in acquiring an impairment, is another example of a scheme that is not focused on the needs associated with disability. The introduction of ‘catastrophic injury’ is inappropriate within a context where the vulnerability of people with disabilities is heightened by tragedy language and imagery. It is also imprecise.

It difficult to understand why this report would put a $6.4B extra cost on the NDIS, to be achieved by 2018, where it might immediately improve effectiveness of existing services by transforming it to a genuine end-user needs focus. We know needs are often ill-targeted and not well-met, and unnecessary layers of bureaucracy soak up funding dollars that could be spent now on individual needs. Attention to needs and quality of service do not necessarily require dollars but require transformation of attitudes towards service users. Big social ‘dividends’ might be achievable in this cost-effective way.

It seems a significant credibility gap in costing a future scheme, while ignoring impending economic, social and environmental impacts of climate change and an imminent global oil crisis, as foreshadowed by the normally conservative International Energy Agency – at the latest by 2015. If just the most recent natural disasters in Queensland, suggested as climate change-related by some experts, incurred such a magnitude of cost that the entire federal budget is significantly affected by it, then where will the financial axe fall under future effects? Disability and social welfare expenditure will likely be condemned as a burden, as we hear presently in increasingly harsh tones, voiced by government and opposition. The Commission ought to consider what should be done to safeguard against the effects on people with disabilities of these inevitable developments.

While the report acknowledges some problems in releasing a large amount of funding that would enable people with disabilities to employ carers privately, experience suggests that there are many more problems that need to be thought through. From my own experience and that of friends, I know that is very difficult to find quality, committed, trustworthy carers, who are compatible with the cared-for person. It is not primarily a matter of money, nor even of training. Caring is more of a calling, a grossly devalued one in our society, much of it arising from the same beliefs and attitudes that underlie the market-economic ideology. Many carers, in my experience want more hours, don’t turn up for interviews, leave after a short time for ‘better’ jobs or just don’t have the wherewithal to be a good carer. A number have pre-existing injuries or disabilities themselves and are looking for a private carer job after having been rejected by the job market. A working party of people with end-user experience and care providers could work on strategies to address these fundamental problems.

A new national disability research institute based on the overriding principles of cost-effectiveness and efficiency is a recipe for a market-based reframing of a relational view of disability. It will not be in the primary interests of people with disabilities to do so, but, again more in the interests of Treasuries (Treasury will oversee the commercial board that runs NDIS). Instead, good, creative disability research, conducted in a variety of disability research centres should continue to provide research that advances the social position of people with disabilities.


Questions

Among questions arising from the report, are these:

The draft NDIS report prizes accountability and transparency. How is it in the best interests of people with disabilities for the report not to give any evidence of effectiveness of its market-based approach to disability support, within a broad aim of social inclusion, as per the National Disability Strategy?

How is it in the best interests of people with disabilities for the report not to draw on available practice and body of research on what works best, and what does not work well, in supporting good lives of social inclusion, based on real needs, in high quality approaches?

How is it in the best interests of people with disabilities for the report not to roundly endorse the UNCRPD as its guiding principles, including its definition of disability, with its implications for recognising a heightened vulnerability of people with disability based on dominant social values?

How is it in the best interests of people with disabilities that when we know that NDIS will drive the National Disability Strategy, which in turn has as its central goal social inclusion, it very much looks like we will inevitably experience a pale reflection of  real inclusion, shaped by the report's priorities of cost-effectiveness, efficiency and competition, which actually undermine the rich person/needs-based strategies known to support real inclusion?

How is it in the best interests of people with disabilities for the report to imply that whether segregated or integrated approaches to disability are preferred, ultimately depends on assessments of cost effectiveness?

How is it in the best interests of people with disabilities, or tax payers, for the report to recommend extra expenditure of $6.4Billion without providing its assessment of the real cost of disability support in the existing system, when it has not assessed what waste of resources occurs in the present system of which we're told it is 'dysfunctional?'

How is it in the best interests of people with disabilities for the report not to recommend an immediate reform process of the existing system, focused on real needs and quality, when doing so might free up resources from ill-targeted services, and unnecessary bureaucratic layers, able to show an effect well before the 2018 start-date for an NDIS?

How is it in the best interests of people with disabilities for the report not to recommend support for more, strong, effective, independent disability advocacy as a major safeguard to inevitable abuses and problems in this large bureaucracy and the services it funds? 

How is it in the best interests of people with disabilities for the report to recommend recording personal, invasive data of NDIS recipients without ethical considerations that appear to prohibit such enforced participation, especially when the recorded data is to include one's 'natural supports', and we also know that national databanks have been hacked and will likely be in the future?"

How can we believe the report that it is fair dinkum about social, not only economic, participation of people with disabilities when there are no recommended opportunities for their meaningful participation at every level of structure and functioning in an NDIS/NDIA, enabling the bureaucracy to stay close to the lived experience of disability?

How is it in the best interests of people with disabilities to introduce a new 'disability-as-tragedy' label in creating "catastrophic disability?

How is it in our best interests for a commercial board to run NDIS with the obligatory advisory council hanging off it when we already know how disempowered our watered-down national advisory council is and commercialisation of disability services undermines efforts towards social inclusion?

How is it in the interests of good service to people with disabilities to create a new research monopoly around a narrow market view, emphasising cost effectiveness, efficiency, competition, with all its regulatory trappings? A large research institute such as that will suck oxygen out of existing, diverse, comprehensive, life-enhancing disability research and further cements a disabling market-view in delivering services.

How is this NDIS proposal a transformational shift when it is obviously more-of-the-same, based on the same market-based principles that drive the current dysfunctional system? 

Why should we believe that an NDIS would be effective in aiding social participation of people with disabilities when its accompanying campaign and draft report show little sign of it? 

Why do we need a market-based NDIS at all if we could turn our attention to real needs of people with disabilities right now, making the necessary resources available and build on best practice of individual funding and social inclusion? 

What safeguards are there in the report against undermining and defunding the small, locally-based social inclusion programs that demonstrably work, but do not meet the NDIS cost-effectiveness benchmarks?

The NDIS draft report does not categorically support integration and social inclusion without exception. Instead it uses careful wording to say that it is cost-effectiveness that will determine whether service initiatives that promote community integration or segregation, will be funded. It does not subscribe to principles and rights such as in the CRPD that demand integration.
When we know that escalating effects of climate change will put government coffers under pressure (with disability support to cost $13B), and when we also know that an oil crisis is around the corner, with effects predicted by the IEA to hit, at the LATEST by 2015, why are these developments not factored into the draft report?


Conclusion

The draft report poses the wrong question in what is failing people with disabilities in disability service. It over-generalises, and risks throwing out good initiatives with the cost-effectiveness-scented bath water. It appears to have already thrown out the relevance of hard-fought disability principles and rights.

It does not acknowledge as primary attitudinal problems underlying the vulnerability of people with disability, both in wider society and in disability services. Its approach is to apply market responses to its perceived market failures of lack of services, choice, referral and information. This will not assist people with disabilities being socially included but may help the financial bottom lines of Treasury and services industry.

Given government instability, imminent global developments carrying significant economic, social and environmental risks, people with disabilities are in need of the strongest of buttresses to their good lives: social inclusion. The recommendations in the draft report however rely on a mainly economic buttress. Any kind of social valuation that rises and falls with economic fortunes is no social inclusion and represents no entitlement worth having. It mostly makes commodities and consumers out of people with disabilities in a new market.

Given the likely hard times ahead, we better get cracking on facilitating real social inclusion. This is not a role that should be left to government, although government can do much to assist it. It is a role for those who live with disability in their lives and their allies, wherever they are found, in their street, in government, or in services. Doing so also requires a disability movement to set its own social inclusion agenda.


References

Parsons, L.,Cocks, E., & Williamson,M.(2009). A review of best practice in individual needs planning. http://espace.library.curtin.edu.au/R/?func=dbin-jump-full&object_id=145309&local_base=GEN01-ERA02

Tronto, J. (1994). Moral boundaries. A political argument for an ethic of care. Routledge. New York.

Tronto,J. (1995). Care as a basis for radical political judgments. Hypatia, 10,2, p141(9)



Monday, April 11, 2011

On disability and hairy-nosed wombats

Contributed by...
Ernie Lightpole

I heard it. I saw it! Did you miss it?


In a rare joint press conference with Julia’s nemesis, Tony, called to correct misinterpretations raised by both Julia’s and Tony’s policies on getting people off government welfare, into work, all was revealed.

Image: deborahniland.blogspot.com

A transcript follows. It went reasonably well to start off with when Julia took the lead:

"Look", she said in reassuring tones, "We are committed to rebuilding Queensland and around the nation, costing tax payers $5.6Billion. All that while tax receipts are down, arising from recent natural disasters with the terrible situation in Japan also hurting our economy. I understand it’s tough for people with disabilities but it’s tough for the economic environment too! Some portray that as moving unproductive economic burdens – and let me remind you there are some two million of those - off our balance sheets to concentrate on the basics, like the economy.

But of course that’s not our message. We will put innovative policy in place to move those who can work, into work. Look, it’s all about opportunity and participation – and the economy."

Tony agreed, with one qualification: "I agree with Julia about one thing and that’s the economy. Of course we all love disabled people but when things get tough, as Julia described, it’s all about who is productive, economically. And who is not. The Liberal Party has always been about opportunity so we’re pleased to be at one with the ALP on this central plank."

"Where we don’t agree is that climate change necessarily has anything to do with it..."

Julia: "Tony, I did not mention climate change…"

Tony: "You said natural disasters. Same thing. As everyone knows I only believe in climate change on Monday, Wednesday and Sunday, alternating bi-weekly. Today is Wednesday. I know what ‘natural’ means."

Julia: "Oh, Tony..."

Tony: "No, seriously, what are we going to do on the other days when climate change effects really start knocking us around? Which Australians will be left to put their shoulder to the economic wheel, when the wheel also has to support a sizeable section of malingerers… Besides there will be only a very small wheel left, when, on those days, stronger cyclones, floods, droughts and what else cripples our agriculture, exports, and slows consumption right down to a trickle."

Julia:"Well, as you know I have always believed in climate change Tony - I believe it’s true eight days a week. Look, we are both evidence-based on this. Let me explain. You would have seen the recent research report on the near-extinct hairy-nosed wombat..."

Tony: "Of course, good report."

Julia: "Then let me draw this analogy, for the benefit of working families, and the other people... This research is about a highly vulnerable species – and yes biodiversity loss is one of the effects of climate change – not, I hasten to add, anything to do with mining. Now, this new economics tool simply spits out the data on which species are too expensive to save. In this case it looks like we’ll have to let it go. We could not find any way of bringing the hairy-nosed wombat into the market, say for its tourism value, or it’s glands. It has no tusks. They actual smell, but there is no aphrodisiac in it we can flog to the Chinese for example."

Tony: "Yeah, I get ya."

Julia: "Now with people with disabilities likewise..."

Tony: "Uhuh, they’re not bludgers if they can be included in the economy… As our Della said it all really : "[People with disabilities] represent a significant human resource whose potential can be harnessed. [They] can help address ... skills shortages for the good of our nation."

Julia: "Tony, at this point I must raise a serious point of principle and significant difference between us: It’s our Della, not yours! "

Tony: "Whatever..."

Julia: "But let me continue Tony... This is exactly why we have a social inclusion policy, where we reframed disability from a patronizing dependency to one of a view of insurance risk, opportunity and participation."

Tony: "Yes I know, we support it too: NDIS. Read the draft report. Efficiency, effectiveness and competition. Right with you there but let’s give credit where it's due: My political Dad John Howard started all that."

Julia: "Well, I don’t recall. Let’s not be historians here. It’s ALP policy now in any case. But as I said, unlike the hairy-nosed wombat, people with disabilities...

Tony: "Ah! Aphrodisiac? ??"

Julia: "...can be given value in a market. The disability industry is a great, hard-working sector. We’ll expand that. We’ll further stimulate the economy with individual funding. Carers will pop out of the ground like topsy. No more bickering over meanings of inclusion because our economics tool, like…"

Tony: "... gotcha, like that used for the hairy-nosed wombat."

Julia: "yep, sorts that right out. Is it cost-effective? Does it fit into the market? Then it must be – it is in fact - social inclusion. You now have value-added disabled people. No problem. No need for difficult-to-grasp principles or rights. And people with disabilities agree. They want to be valued and included. Everyone happy!."

Tony: "Mmmm, agree, and that idea for a national data base, which we as next government…"

Julia: "It’s still up for grabs Tony, and we’re still here!"

Tony: "... can use for easy fraud detection - on page 10.2 I think - , I really like that."

Julia: "So, it’s all about participation…"

Tony: "...in the market”"

Julia: "And opportunity"

Tony: "For us…, uhh, the economy… But what I still don’t see is what happens when the economy shrinks on those days that we experience escalating effects of climate change. Another $5.6 Billion and we're economically stuffed. We must still fund disability services and individual funding packages, including when they are marketised. How could we then still afford this inclusion that you talk about?"

Julia: "Tony, Tony, let me go over that hairy-nosed wombat example with you again, in private..."

After that clarification, we’ll now take you back to Julia’s public interview with Chris Uhlmann...

Tuesday, March 22, 2011

Whither NDIS Now?

Just heard NSW Premier-in-waiting Barry O'Farrell mention the standard incoming government technique of examining the books once elected in order to find the inevitable 'Black Hole' that the previous government left, reluctantly 'forcing' the new government to take some 'tough measures.'

I think the chances are high that after finding the Black Hole that O'Farrell will take a leaf out of the WA Liberal government's Economic Audit Report (its Black Hole-finding mission) and do something similar, recommending an overhaul of the State's community services, including disability, and finding in favour of making these services more of a cost-effective, for profit market than it already is.

It will favour the big organisations in giving them greater policy-making powers, upon their commitment to run 'along business lines.' It will at best ignore advocacy and smaller, economically unattractive efforts, but more likely weed them out over time.

It will support individual funding, but in such ways that they are fully state-controlled, assessed by 'independent' assessors, and checked for fraud, tapping into a substantial national database of individual service users (oh sorry: 'consumer') records, right down to knowing a person's 'natural supports.'

It will happen because this is entirely in line with the Productivity Commission's draft NDIS report. It is also in line with the influential Centre for Social Impact , a multi-university campus research project (run by Prof Shergold, former Howard advisor, project started in dying Howard days with a $25M fund), which was and is a driving force in the WA government's push. Julia Gillard gushes over Social Impact on its website. It also is in line with the National Compact project, launched by Kevin Rudd in his day as PM. The market-economic model in social services has bipartisan support.

In essence these initiatives all use rhetoric of needs while seeking to transform being of service, care and support into a cost-effective, efficient, competition-based commercial activity as part of the market. You can clearly see this in the NDIS report, which is proposed to be run by a 'commercial board' (ok, with the obligatory consumer advisory committee appended to it). Need for support, for either inclusion or segregation, is determined by economic effectiveness. It is not based on principles or rights of equality and opportunities to rise to one's individual potential. Effective services to serve the economy, not individual people. The failed Third Way UK policies recycled in Australia?

Rarely do we ask how much disability actually arises from the disabling market-economic policies that are part and parcel of all Australian governments and political parties. Indeed the NDIS draft report itself does not discuss the possibility of any, so does not offer any real safeguards against its proposed, huge NDIA bureaucracy.

Money will be only as good as the motivations and intentions behind it. Better sort that out before any money commitment is received, because people might have to sell their soul for a sense of 'entitlement' and some support.

Will the disability movement's analysis of this economic model, and alternatives to it, emerge? Or will it and its proxies remain content in supporting the NDIS Entitlement while apparently ignoring the underlying commercial values that can undo us? The politics of hope, I know, but surely we can do better than that?

Tuesday, March 1, 2011

Wolf Wolfensberger - 1934-2011 - Thank you


Sadly, Professor Emeritus Wolf Wolfensberger died on 27th February, 2011, following a long illness. His was a very productive life, well-spent.

Dr Wolfensberger had a strong commitment to people made vulnerable in a society where individualism, utilitarianism and hedonism reign. He made a huge contribution to people with disabilities. He was a visionary, a devastating analyst and honest critic.

He was also controversial and ignited many debates, involving strong differences of view. Such is a culture of engagement with complex questions. You never had to guess at the meaning of his words. He was strongly averse to political correctness, a characteristic which earned him some critics. He was courageous in advancing and, defending his meticulously researched theories and concepts.

In 1999, seven major developmental disability organizations in the US proclaimed Dr Wolfensberger one of the 35 parties that had been the most impactful on "mental retardation" worldwide in the 20th century. Dr Wolfensberger's work was also recognised by the US magazine 'Exceptional Parent' as one of the great 7 contributions to the lives of people with disabilities, along with Salk and the polio vaccine, braille, Americans with Disabilities Act and the wheelchair.

He was perhaps best known for developing social role valorization theory from his, and Nirje's, concepts of normalisation. Social role valorization has been taught to many using and running disability services, and applied to various degrees, in government policies and service practice.

Dr Wolfensberger also developed the concept of citizen advocacy, facilitating long-term relationships between a person with disability (or other vulnerable people)and a volunteer citizen. He wrote a monograph on advocacy. He developed PASSING, a detailed methodology for assessing disability services with regard to how well they rate on meeting the needs of the people they serve. He wrote a highly practical protection schema for disabled people who are hospitalised - increasingly relevant in our efficiency- and highly short-term curative-based hospital care. Much more... he authored over 40 books and monographs, over 250 chapters in books and many journal articles.

One of his latest articles that I am aware of: How to comport ourselves in an era of shrinking resources covers as pertinent an issue as the many that he raised over his career. Controversial as always, in that article he takes a social triage approach to what might need to be done under coming, very difficult, circumstances.

Many people who have disabilities have benefited from his work in a change in focus from disability as a medical issue, or captives of care to one where a good life means living with others and in settings that are normally valued in our society. His work was instrumental in the deinstitutionalisation of thousands of people with disabilities. It has informed disability advocacy. I am aware that in his own life he personally modeled compassionate service to 'needy people', a much used Wolfensberger phrase.

He had a keen eye for the human tendency to take a concept or word and turn it into 'fads', perversions and 'crrrazes' (Dr Wolfensberger never lost some of his German tinge). To some this might merely have been funny but he would show how such fads wasted resources, or worse, cause injury to the people they were ostensibly for.

His German background was obviously important in sensitizing him to systematic patterns of devaluation of certain stigmatised categories of people, leading to their abuse and even extermination. His work and warnings on modern forms of 'death making' of people with disabilities, in genocidal proportions sits awkwardly besides modern ideas of progress.

Having attended two of his backbreaking workshops in the nineties, I can still picture him behind the lectern, passionately going through overhead after overhead, filled with schema fitting within schema: from the big picture to meaning in individual lives. Simultaneously making various corrections to his material - his critiques extended to his own work.

Love him or not, Dr Wolfensberger's work is lasting and cannot be ignored. He inspired many people, practices and policies, whether some are aware of that influence today or not. I will remember him fondly and with great respect, as I believe many will. I have learned much from his work and I thank him for his many contributions.

By all accounts, his was a life well lived,in the service of others. At one of his workshops, I asked: "if there is such a thing as imprudent profligacy - a concept he raised - then what is prudent profligacy." In answer he pointed to storing one's riches in heaven, not here. I have no insider information but I suspect that he has now found much treasure there.


Some of Dr Wolfensberger's publications:

Wolfensberger, W. (2010).How to comport ourselves in an era of shrinking resources. Intellectual & developmental Disabilities,48,2)

Wolfensberger, W. (2005). The new genocide of handicapped & afflicted people (3rd (rev) ed.). Syracuse, NY: Syracuse University Training Institute for Human Service Planning, Leadership & Change Agentry.

Wolfensberger,W. (2003). The future of children with significant impairments: What parents fear and want, and what they, and others may be able to do about it. Syracuse NY. Training Institute for Service Planning, Leadership & Change Agentry. Syracuse University.

Wolfensberger,W. (1998).A brief introduction to social role valorization: A high-order concept for addressing the plight of societally devalued people, and for structuring human services. 3rd rev. edition Training Institute for Human Service Planning, Leadership and Change Agentry, Syracuse University (Syracuse, N.Y. 805 South Crouse Ave., Syracuse 13244-2280 USA)

Wolfensberger,W. (1992). A guideline on protecting the lives & health of patients in hospitals, esp0ecially if the patient is a member of a societally devalued class. Syracuse NY. Training Institute for Service Planning, Leadership & Change Agentry. Syracuse University.

Wolfensberger,W. (1977). PASSING. Program analysis of service systems implementation goals. National Institute on Mental retardation. Canada.

Wolfensberger,W. (1977). A Multi-component advocacy/protection schema. Law & mental retardation. A monograph series. Association resources Division. Canadian Association for the mentally retarded.

Wolfensberger,W. (1975).The Origin and Nature of Our Institutional Models. Human Policy.

Monday, March 29, 2010

NDIS And Individual Funding

NDIS (Long-term National Disability Care & Support Scheme) is renewing its emphasis on its abilities to deliver 'individual funding', somewhat of a Holy Grail for many people with disabilities and carer-families. And justifiably so. It promises control over resources to suit one's changing circumstances, rather than be beholden to a one-size-fits-all disability service.

Who would object to it? I would not - in principle. Just as I think NDIS is a great opportunity - if we get it right.

Of course there are various models of individual funding, involving various levels and types of control, through services or manage it completely yourself.

Individual and person-centred approaches are complex and I am not trying to fully explore them in a blog post. I just want to have a quick brush-look at how appropriate the present NDIS plan might be to individual funding approaches.

The questions I want to ask are:

1) Do we need an NDIS in order to obtain individual funding?

2) What sort of values are associated with individual funding?

Do we need an NDIS to have individual funding?

Western Australia has had forms of individual disability funding for some twenty years. So, the short answer must be “no!”

A commitment to go with individual funding, as a first step, takes just that: The commitment to do so. It is a decision that government departments and disability services can make - today. Perhaps facilitated through COAG, though WA did appear to need that mechanism. 

To suggest that only with more money can individual funding become a reality is to do what the NDIS campaign has reflected from the beginning: putting the money-cart before the horse. The mirage is that it's all about money, presumably value-free. 

No need to look at how approaches, that are meant to assist people with disabilities, conceptualise what disability is.

A medical model? Like focusing on people with “severe and profound” disabilities?

A market model? Like casting disability as an expensive burden, or an insurance risk?

Or a social or ecological model, where dominant social values and practices (like that of the medical and economic model) play major roles in manufacturing disability out of impairment?

No, the problem for the NDIS campaign is not enough money and that's all there is to it. It refuses even to include in its feasibility study any investigation of what problems there are in terms of quality service in the system that it trumpets as 'dysfunctional.'

Astoundingly, as a stated needs-based scheme, it also refuses to look at what needs are, and instead has already narrowed them down to the number of 'interventions' a person with a severe/profound disability requires. Why? Because an NDIS that would take into account real needs, informed not only by such criteria, but also by the heightened vulnerability of people with disabilities, might no longer see Treasury balance sheet Deliverance from the huge financial liability of a growing disability pension, services, and low employment scenario, in the way that is envisaged by government

I suggest that the spotlight on individual funding right now is to divert our gaze from where NDIS is flawed: in it's non-participative approach, in not including those issues that are vital to people with disabilities in the study, in its manipulation of the consultation process.

They want to make us think that only through an NDIS can we have individual funding and that, disregarding everything else, is a good enough a reason to support it. I disagree.

And I would certainly object to any medical/market-model/NDIS winding the clock back in WA on its journey in individual funding!

Why not use WA as a model instead, improve on it, and implement it?

Why wait for an NDIS? It's a "Long-term" scheme!

What sort of values are associated with individual funding?

NDIS is based on those sorts of values and practices that manufacture disability out of impairment. Individual funding, or person-centred funding demands very different values to those of the market or the medical establishment – NDIS values.

Individual, person-centred approaches require a high level of trust in and participation by the individual person with a disability and/or family to manage their personal budget in the best interests of the person in need. Financial accountability is also important, requiring trust and participation in this grassroots control.

It still holds true in any country in the world to say that you trust anyone, any government, any organisation, by their actions, not their words. How does NDIS stack up in this regard? No longer true in Australia?

Relevant questions are, how can this NDIS eventually develop such levels of trust at this grass roots level where it has demonstrated to have no trust whatsoever in grassroots participation in researching and formulating the parameters for a study into an NDIS? 

Did it reach out to the disability field in the early months after the idea of NDIS was born at the 2007 summit, and seek its full engagement and participation? Nope.

Is it mindful of the needs of highly vulnerable groups such as:
  • Aboriginal people with disability, 
  • intellectual disability,
  • people with Down Syndrome.
  • people with autism, 
  • people with disabilities from ethnic and non-English speaking backgrounds,
  • people with psychiatric disabilities, 
  • and so on? 
Not so far.

Many of them will not be eligible for NDIS benefits. And I have seen no explorations by the people who run the NDIS campaign as to how their needs would be met.

What trust in us is demonstrated by appointing the panel that is “leading” the study to be composed by experts, grounded in the medical and market views of disability, and without real participation from the disability field? And its subterranean level of 'allowing' our participation appears contrary to the UN Convention on Rights of People With Disabilities that the government signed up to.

Actions! Not words!

What the NDIS campaign really wants you to do is to believe that you can grow a mango out of a bush lemon pip. Well, miracles do happen but I don't think this is one of them.

With individual funding there also come risks to the person with a disability, as the 30% of respondents to be Shut Out report remind us when they identified “barriers” to their “participation” by their carers. Obviously, any NDIS would also need to fund, support and encourage development of strong safeguards in this area - as it would have to do for services too. But how can we trust it to deliver any of the sort when it refuses to include the funding and support of strong, independent disability advocacy and other safeguards in the study's terms of reference? Avoid quality, avoid needs? Avoid you!

"Ordinary lives" of people with disability, like most people's lives, are full of change, ups and downs, and what constitutes a "good life" is best found in the processes around any of us. The quality of their relationships, community interactions and so on. Little things often, not easily counted and measured. Trust is required in such processes.

But how can an NDIS that started off with an accountant's report on which medically-labeled category of people with disabilities cost the most, based on interventions, do this?

You tell me.

An NDIS that would deliver individual funding must be rooted in needs at that grassroots level and accept enabling processes that it cannot count.


Time and again we are prompted to ask whose interests are primarily served by this NDIS? So far it is not apparent that it is us - people who have disabilities. For an NDIS to deliver any sort of individual funding that will work to our benefit it would need to commit to a different concept of what disability is, of what real needs are, of what participation is, and what constitutes quality in being of service to people in need. Different values and attitudes to those it is displaying.

Even as we stand at the threshold of community consultations, as framed by a small elite group, representing interests that are not necessarily ours, we may still have the power to do something about this. To do that we must believe in the importance of changing the parameters of the inquiry that is about to happen and in our legitimate cause to do so.


So far, regrettably, there have been few public critical disability voices trying to engage with this huge opportunity that an NDIS represents. If these voices do not let themselves be heard now, where it counts, future generations will scratch their heads why they didn't, and why they have to live with more-of-the same.

More of those same disabling values and attitudes that once fueled the disability movement to raise its voice in the first place.

Sunday, March 21, 2010

Is the government no longer committed to NDIS?

Today, 21st March signifies just 10 days until the start of April. The consultations around NDIS (recently renamed Long-term National Disability Care and Support Scheme) are said to start then. In reality of course we have at least 11 days as surely these consultations would not be announced on the 1st of that month.

Is the government fully aware that we need a big disability voice to get through a scheme that will affect people with disabilities for 20-40 years in this country? If it is, then why is it undermining this unique opportunity for fundamental change for us by not responding to calls to making the inquiry a fully participative one, and include those issues that are vital to us?

Questions, vital to our interests, were asked of FAHCSIA, the Minister and her Parliamentary Secretary, Bill Shorten, but have gone unanswered so far. 

Hardly revolutionary stuff about the terms of reference under which we will be consulted, like:
  • Include examination of needs in an inquiry that says it's about a needs-based scheme;
  • Look at the reasons for the service system that the NDIS campaign admits as broken;
  • Look at building improved quality of service and what that quality is;
  • What is the disability model under which the inquiry will operate?;
  • Have meaningful representation of disability interests on the Panel, leading the inquiry;
  • and so on...

To date the government has excluded meaningful disability representation in those forums where the mould for the present inquiry into a national care and support scheme was cast. If no amendments  are made to the terms of reference for the Productivity Commission's inquiry by the time consultations start, we will be left responding to those questions that the government wants answered. Questions into which we had no real input.

The government has so far been unresponsive to requests it make its inquiry one that can really benefit people with disabilities. Does it only say it wants one but plays another game? Is it, in fact, in breach of parts of the UN Convention on Rights Of People With Disabilities it signed up to, at least in the way we have been excluded from meaningful representation?

Honouring disability contributions and trusting us

We need to know as we already have “writer's cramp” from contributing to frequent inquiries, for decades. Some of us must type them, one letter at a time, using hand splints, a headstick or through speech-recognition software. We drag ourselves off to consultation hearings at our considerable human and financial cost. Will the government honour our effort and trust in yet another consultation? 

Will it actually now trust the disability constituency and “allow” our genuine participation on the Panel that leads the inquiry? 

Include our vital issues in the inquiry? 

No more stage-managing of our voice?

No more negative imaging of people with disabilities in tugging at public heart strings?

Is the government no longer committed?

It would be easy for the government to support a successful strategy towards passage of a great national care and support scheme by changing the terms of reference, even now. The government's words would certainly support doing this. Such as:
"Practically what disables people is barriers which our society puts in the path of people with impairment to be able to enjoy full participation."(Bill Shorten, 2009)

Bringing us along in a fully participative way, involving those things that matter to us in this inquiry.

Precedents for doing exactly this, exist, in a very similar inquiry, at another time when people decided it was time for a really big change.

If it makes no effort to do so, in engaging with our vital concerns, then we must question its commitment to fully inform and involve all people with disabilities towards a successful outcome in a national care and support scheme that means positive and enduring change for us. Not just more money, from a different source.

Are NDIS campaign calls for a “united disability voice” just hollow?

We will know in coming days.

NDIS and the UN Convention on Rights of People With Disabilities

Check out the UN Convention here for yourself, in particular the Preamble, clauses "e", "f", "o" and "k." 

"... persons with disabilities should have the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them." (UN Convention on Rights of People With Disabilities, Preamble, "o")

Surely, those framing this Convention did not intend for "active participation" to mean: " people with disabilities being consulted about questions, that are vital to their wellbeing for the next 20 years, framed for them by others, the consultancy process overseen without their real participation, and analysed by accountancy firms..."