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.  

Why I won't be observing International Day of People with Disability

First, apologies for the long absence.  I've been away, and now I'm back.

image from website www.idpwd.com.au/

Tomorrow (3 December) is the annual International Day of People with Disability (IDPWD).   I won't be observing it.

IDPWD was established in 1992 by the United Nations General Assembly, at the conclusion of the United Nations’ Decade of Disabled Persons (1983-1992), to promote awareness of disability issues and the abilities of people with a disability.  In Australia its observance is coordinated by the Department of Families Housing Community Services and Indigenous Affairs (FaHCSIA). Their aim for the day is "promote an understanding of people with disability and encourage support for their dignity, rights and well-being. The day also seeks to increase awareness of the benefits of the integration of people with disability in every aspect of political, social, economic and cultural life".

So who should celebrate it?  People Living with Disability and the families in their lives?  Hardly.  There's not a lot to celebrate in Australia if you live with disability.    As reported most recently in PriceWaterhouseCooper's Disability Expectations; Investing In A Better Life, A Stronger Australia, people living with disability are half as likely as non-disabled people to be employed and we look particularly bad when compared to other OECD member countries (the OECD is the Organisation for Economic Co-operation and Development whose mission is "to promote policies that will improve the economic and social well-being of people around the world").  Poverty is a common experience for people living with disability. Across the OECD countries 22% of people living with disability are living in or near poverty.  In Australia it is double that.  In Australia the amount of money that is spent on long-term support for people under 65 is around half that spent in other countries like UK, Sweden and Denmark.  

Maybe service agencies?  I can imagine a lot of agencies will be hosting events, where they hope to raise awareness of disability.  I am sure there is plenty of good intention behind this, and the events will be appreciated by those involved.  However, because of the way most services are currently funded and arranged, chances are that individual people living with disability are not getting a full and fair opportunity to grow into a highly personalised  ordinary valued life.  Not enough to celebrate there.

How about the wider community?  I understand the sentiment of the day, which is to prick the conscience of the broader community, to raise awareness of people's circumstances.  The problem is when we do this on just one 'official' day we inadvertently train the community that they only have to think about disability once a year.  And maybe send a donation.

There is no point in having one day of the year where people make a fuss of your situation for it to then be placed in the unchanging shadows the rest of the time.  That is why I won't be observing it.

I was talking to an overseas colleague earlier this week, who sees Australia on the edge of a great opportunity, given the work of the Productivity Commission on a National Disability Insurance Scheme (NDIS).  If crafted and implemented well, an entitlement-based funding scheme could see Australia leap-frogging other nations in giving people living with disability authentic control of their lives, a fair go at funding support, and the chance to be part of community life as valued citizens.

It's all about If.  A small word with big consequences.  But if this happens, then Australia's observance of International Day of People With Disability would be a much more authentic celebration.




You can join the campaign for an entitlement-based funding scheme (NDIS) by clicking here. 

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.

Imagine if, Imagine how, Imagine when

Mindful that a number of the over 2,500 readers of this blog will have previously reflected on the issue of group living, I think it important to regularly reflect on its problematic nature. So stay with me on this, and do post your comments if I’m missing something here.

The problem with congregated support is that the very nature of it makes it much harder to achieve authentic choice for people, and much harder to engage in community life in natural ways. No matter how a support agency might try to dress it up as a service model steeped in choice and inclusion (and having run several support agencies in different countries where congregate support was a feature of at least some of our services, I have done my fair share of such self-deception) the fact is that when a bunch of people are required to live together there are inevitable compromises.  Sometimes in life, such compromise is freely entered into.  For example, many of us might have experienced shared living (and therefore a commitment to compromise) at various points in our lives, be it with family, with co-students, with flatmates, with partners.  However, we do not typically make longer term decisions to live with people we didn’t know previously or without a deeper mutual commitment to share our lives.  

If such imposed compromise of shared living weren’t enough, group homes have an extra constraint – the staffing arrangements.  Most of us don’t have a procession of people coming through our daily lives who are paid to be there, and for whom our homes represent their workplaces.  And most of us don’t have our daily choices shaped (and curtailed) by the relative availability of paid support staff, which is the inevitable consequence when there are less staff than people being supported.  The fact that the paid support staff have to share their efforts across a number of people means that some choices cannot be entertained because  a staff person cannot be in more than one place at a time.

Why on earth might we think that such arrangements are acceptable?  After all, for those of us who don’t live in such constricted arrangements, we are unlikely to nominate such arrangements as our first choice should our circumstances change.  Why do we persist in making congregate support the main way by which we support vulnerable people?   

One answer, the easiest answer to come up with, is money, or rather the lack of it.  Issues of recurrent funding for support is an oft-cited reason given by jurisdictions for placing vulnerable people in shared living arrangements, be it a group home, nursing home, or other ‘supported residential facility’.  In my 25 years working alongside vulnerable people, I can’t ever recall a meeting between government and support agencies where the issue of funding didn’t come up. When we focus primarily on the issue of funding, we are making a fundamental mistake.  Funding is not the main barrier lying between vulnerable people and a good life.  A much larger issue that is stopping us from assisting vulnerable people into lives of choice and citizenhood is a lack of imagination.  When presented with the challenge of supporting vulnerable people into rich lives, and with funding that seems modest, our typical solution is to group people together.  This is profoundly unimaginative, so much so that it works against the values of choice and inclusion that most support agencies are meant to be subscribing to, and which characterise the personal standards that most of us set in our own lives.  

If we authentically subscribe to the values of choice and inclusion, then funding levels need present no barrier.  I have recently visited with agencies, in both urban and rural areas, who are accomplishing highly effective individualised supports, without congregate living, and without congregate doing, and without rich seams of public funding.  

Among other things, what such agencies have in common is an unshakeable commitment to choice and inclusion, the capacity to imagine how this might be achieved despite the dramas of public funding, and the gumption to take action now. 

I believe that there are many support agencies who have a sincere desire to be helpful in the lives of vulnerable people, and will happily subscribe to the values of choice and inclusion.  Yet those same agencies often report they are constrained in their efforts by what the public funder is prepared to pay for. In which case, I strongly encourage those agencies to take a deeper look at the meaning of choice and inclusion, and how these can be achieved in ways that are uncomplicated by group responses.

I am very happy to talk more with any support agency interested in exploring now they might become more imaginative in supporting vulnerable people into rich lives of choice and citizenhood.