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.

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. 

Targets and Outcomes

As many readers of this blog might know, Individualised Funding has been gaining momentum, among other places, in the United Kingdom.  having had the chance to see the methodology road-tested in a number of areas around the country, the UK Government made a strategic commitment to Personal Budgets and there is an expectation all local authorities in England transform their social services arrangements so people have the option of a Personal  Budget.

A target was set, that 30% of eligible adults be in receipt of a Personal Budget by the end of March this year.

An Association of Directors of Adult Social Services (ADASS) report published last month by UK-based Think Local Act Personal Partnership shows this target has been reached, with nearly 340,000 adults accessing a personalised budget.  This represents more than one third of all eligible adults, with the highest number of personalised budgets going to older people.

No doubt spurred on by this momentum (which included the figures doubling in the last 12 months), a new target has been set, where 100% of eligible adults have access to a personalised budgets by 2013.


Also at the end of last month, UK Charity In Control Partnerships and Lancaster University completed their report on the experiences of 2000 people using a Personalised Budget. The survey found that personal budgets had an overall positive effect on people's lives, notably in terms of being supported with dignity and respect, staying as independent as they want to be, being in control of their support, and getting that support when they need it.  Similarly, family members reported benefits in terms of more support, better life quality, and increased well-being.

What is also clear from the report is that people's experiences varied depending on the approaches that local government took in their area.  For example,the degree of positive impact was affected by the following:

• the extent that people knew exactly how much their personal budget was
• the extent that people knew how the personal budget was managed on their behalf
• the extent that people felt their personal views were reflected in their support plan
• the ease of access to information
• understanding the degree of flexibility possible
• the extent of government support to assist the person through the self-direction process

What we can take from this is that a personal budget can make a difference, but that this is not guaranteed.  Two issues come to mind.  The first issue is that local authorities vary in their approach, depending on whether they think their glass is half-full (as in, "look at the possibilities for assisting people to have really personalised supports") or half-empty (as in "how do we make sure the money doesn't get stuffed up").  from where I sit, it looks like you have a better chance of budget flexibility and greater informed choice, and therefore better outcomes, if your local government is really engaged by the possibilities of a personalisation methodology.

The second issue is one of scale. The earlier work in the UK on personal budgets was conducted on a relatively small scale, in terms of the number of people involved.  Now that national targets have been crafted, there is a sense of haste to get a large number of people onto personalised budgets; just in the last 12 months, 170,000 people were signed up to a personal budget. That's a stampede, and one that is set to continue for another two years.  Under such circumstances, the challenge is to maintain an authentic personalised approach, otherwise it just becomes a numbers game where people are rushed through a series of pseudo-choices so that a package can be signed off and a box ticked.  And that's how a really important idea can be stuffed up.

I again quote Wilagan's Fact:

"A good idea is at its most vulnerable during implementation".

So let's make sure the targets we set don't obscure our view of the true outcomes.  The target that everyone has access to a personal budget can be a potent building block for personalisation.  However it is not the outcome in and of itself.  The outcome is more likely to be that each person gets a fair go at an ordinary valued life. In the rush to hit target, we may miss the point of its existence.

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.

A hundred leaders

In Control International is an international community of interest on the topic of self-direction in disability support. I’ve just attended the latest meeting, an opportunity to share ideas and experiences that can assist the momentum for helpful change in people’s lives. The meeting covers ideas ranging from the personal to the national.

Participants in these conversations (not limited to these face-to-face meetings) include Australia, Scotland, Czech Republic, England, Japan, Wales, Finland, Ireland, and the US. Some connection has also been established with NZ where there is a very interesting momentum towards self-directed support.

A set of principles guide these connections, one of which is the notion of ‘open source’ sharing. This is a bit like Wikipedia, in that everyone is recognised as having something to contribute to a growing body of knowledge about what it takes to support vulnerable people into good lives. This is very exciting because it means that In Control Australia has access to a rich seam of useful resources from both within Australia and overseas.

It is clear to me that helpful change is often initiated by people sharing their stories and then taking action together. As part of Julia Farr Association’s support to In Control Australia we will shortly be re-developing the In Control Australia website to assist people to access useful information. Within the new website we would like to build a collection of people’s stories, of how individualised (self-directed) funding has helped the person to build the life they want, and also stories from people who don’t yet have a personalised budget but who can describe how they imagine their life would be different if they did.

So I would like to ask all Australian readers of this blog to think about who you know (if not yourself) who might like to tell their story. It’s as easy as talking into a voice recorder, or talking to a computer webcam, or writing the story in a Word document, or telling the story through something like PowerPoint. That recording/file can then be sent to us and we’ll take care of things from there. At all times we will have careful regard to honour the degree of privacy that people ask for.

Given the national enquiry that is taking place about disability insurance, and the various state/territory activities in relation to individualised (self-directed) funding, now is the time for people to tell their stories, so that the focus of a national disability insurance scheme, and the direction of local arrangements, is on how people can be supported into lives of choice and citizenhood.

Someone mentioned to me the other day that, "...I like hearing people's stories but enough already!  I get it, so now tell me how to make change happen".  I can understand that view, and at my agency we have plenty of information that we can connect people with on the 'how'.  I will say this though.  Story-telling remains important, for at least three reasons i can think of.  First, people's stories often contain great wisdom about the 'how', and we just need to tune into that wisdom and grab it.  Second, we need to keep being reminded about why all this is important, and people's stories provide the best kind of reminder.  Third, one of the most potent sources of influence on the design and shape of future disability support arrangements will be the stories that people tell about how their lives change for the better because of a highly personalised approach. 

Imagine having the stories of a hundred vulnerable Australians who have taken control and built a much richer life through personalised funding and assistance.  That would be a very powerful anthology of personal authority and citizenhood, one that could help achieve critical change in the way our governments, service agencies and communities think and feel about disability.

So let's get it done; let's get a hundred stories of a hundred people who have taken leadership in their own lives.  A hundred leaders. 

2010 Election Promises Part 3

On 29 July the Australian Labor Party announced $60m capital funding to create up to 150 additional accommodation or respite places for people living with disability, signalling this was a modest increase on current arrangements.  Click here for the announcement.

If the policy is implemented by the next government, community organisations can apply directly to the Commonwealth government for capital grant funding, so long as they can demonstrate they have attracted funding from elsewhere to meet the costs of the ongoing support needs of the people living in the housing.  The ALP’s emphasis is on “innovative, community-led projects”.

Given that there is nothing innovative about groups of people living with disability being coerced to live together in group homes, which tends to happen  because of general restrictions on the amount of funds available for personal support, and/or because of a lack of imagination, the optimist in me is hoping that the ALP has something different in mind when talking about ‘innovative’, and 'community-led'.

Meanwhile, the next day, 30 July, the Liberal Party finally broke its silence on disability issues (unless I’ve missed something in the media – do tell me)  and announced what it would do as government to assist students living with disability.  Click here for the announcement.

In pointing out that many students living with disability have limited choices about which school to attend, and that any funding support is directed at schools not the student, the Liberal Party’s proposals include an initiative called an Education Card, worth up to $20,000 and fully portable.  The Card would mean that the student and her/his family would presumably be able to exercise greater choice about which school to go to, because the family and student have genuine purchasing power by virtue of the value of the Education Card.   

I imagine this might make it more likely that the student could choose their local school, or the school that most of their local friends are attending, or the school that excels in a particular area of study/activity that the student is interested in. In other words, the student would get the same choices as her/his non-disabled peers.  In which case, it seems the Education Card, depending on how the scheme is designed and implemented, could carry some of the features of Individualised Funding (refer to previous postings on this blogsite).  If so, this would be a very encouraging development for people living with disability and their families interested in having more say about what they can access.  It is a further example of how the ideas within Individualised Funding can help create a climate where truly personalised solutions might emerge.

I remind myself that, as always, a good idea is at its most vulnerable when it’s being implemented, so we will have to wait and see if and how such an initiative is designed and implemented.  However, at first glance it offers promise for young people like the student I remember at a local primary school who enjoyed a typical primary school education experience in a welcoming school alongside other local kids.  But when it came to the move from primary to secondary education, he somehow got placed at a 'special' school just for students living with disability, two bus rides away. I doubt such an arrangement will be helpful to him in maintaining connection with his friends from primary school, or in developing new acquaintanceships in his local community.

I don’t doubt that he may enter valued friendships at the ‘special’ school.  But why should we assume that a person living with disability can only enjoy friendship and fellowship with other people living with disability.  My concern is that the shift to a special secondary school is making it more likely that this student is being set up for an adulthood of separateness, destined to learn, live and work alongside only other people living with disability.

With portable support funding in place, it’s just possible that this student could have chosen his local neighbourhood high school or another welcoming mainstream school.  In such circumstances he might perhaps have had a better chance of maintaining and further developing his fellowship with his local friends from primary school, make new acquaintanceships with students from a variety of backgrounds, and perhaps have had a better chance of emerging into a richer seam of opportunities as an adult, from a childhood characterised by inclusion, not by the badge of ‘special’.

2010 Election Promises Part 2

Early Intervention is an important principle, even though I’m not a big fan of the word ‘intervention’ and would prefer something like ‘Early Investment’.  If delivered well it in can assist children living with disability and their families to establish and build critical capacity, get on the ‘front foot’ in life, and move towards a hopeful future.  

To which, on 29 July the Australian Labor Party announced up to $12,000 of early intervention services would be available to each child aged 6 or under with certain types of disability.  The annoucement is here.  This is apparently in addition to new Medicare rebates that are also designed to assist with the costs of early intervention services, creating a total package of $122m over 4 years.

It strikes me that here is a fine opportunity to offer these funds as an Individualised budget, where each eligible family gets their indicative allocation of funds and can then shop around for the services and supports they feel will be most helpful to their circumstances.   Based on the current announcement, it’s not clear to me how the funding actually will be administered, though the ALP mentioned the establishment of a preferred provider panel.  Such panels can be something of a double-edged sword.  On the one hand, they provide a shortcut to service agencies that have been accredited in some way.  On the other hand they limit the horizon, because if a type of service that someone wants is not on the menu of the agencies on the provider panel, then it can’t be bought.  This means that for at least some families we are curtailing the possibility of crafting a truly personalised solution.

Interestingly, the Medicare rebates afford some choice and control to a family who presumably can shop around for the Medicare-registered provider agency that will work best for them.   I assume that there is an accreditation process involved in becoming a Medicare-approved agency and again this might exclude some agencies and the associated choices available to families.

Also on 29 July Labor announced $1 million for projects that support employers to hire and train people living with disability.  You can read the announcement here.  On the face if it this is a step in the right direction.  People living with disability are underrepresented in Australia’s workplaces, and I’m supportive of any initiative that assists more diversity in the workplace where people living with disability are viewed as valued colleagues alongside non-disabled peers.  But in an economy of around 14.5 million Australians of working age (my estimate based on 2007 figures from Australian Bureau of Statistics), we need to think about how far that $1m will actually go.  

Try this back-of-the-envelope analysis.  Let’s assume that 20% of adults of working age live with disability – around 2.9 million. But many of these people will have types of disability that don’t present major barriers to employment.  And some people living with disability are already in employment.  So let’s assume that the adults living with significant disability are those who have registered with their state/territory disability services.  In South Australia I’m guessing this is around 12,000 people.  But some of these people will be employed with mainstream employers.  So I’m going to assume that 2000 of these are outside mainstream employment – I’m not sure if I’m being wildly optimistic here but in any case it will make the back-of-the-envelope maths easier.  So I’m assuming 10,000 people in SA are living with significant disability and currently not in mainstream employment.  Let’s scale this up nationally (SA being around 7% of the national population), which gives us around 147,000 people.  So this is the ‘eligible’ population for assistance into mainstream employment.  And there is $1m available.  So that’s $6.80 each.  

The point here is not to diminish the intention behind the announcement, or to be ungrateful for the $1m, or to understate the potential for the announcement to make at least some mainstream employers think about workplace diversity.  My point is that more funding may be needed to truly make a dent in the issue, and such funding should be part of a broader push to ensure all Australian employers include (and celebrate) people living with disability in their workforce.   

By the way, prior to my moving to Australia I had encountered an organisation based in Chatswood NSW called Employers Making a Difference, who recently changed their name to Australian Network on Disability.  If you are interested in exploring how people living with disability can be supported into open employment opportunities through an "it's good for your business" mindset, they have useful information on their website here. 

Third installment of 2010 Election Promises will be early next week.

Shopping

Wigan, UK

It may not surprise you to learn that it has rained somewhat during the time I've been in the UK.  In fact, since I got here on the 18th november, not one day has passed when there hasn't been rain.  This is something of a novelty given that I live in South Australia, which is generally drier than a wafer.  However, the novelty soon wears off once you're driving in the stuff, upon British roads that are jammed with squabbling cars whose harrassed occupants are trying to get to some other place.  Often a shopping place.  I recall listening on the car radio one evening how someone had called in because they were caught on the freeway for the last hour in late night shopping traffic, and with no prospect of getting out of said traffic for another hour.  Their call was to request how best to deal with a full bladder, given there's no dunny in the car.  The response didn't provide relief.

There are shopping alternatives of course, such as online shopping, where you can browse a multitude of offerings, and have stuff delivered anywhere in the world, and all from the comfort of your own home (inclusive of dunny).  This online world has now extended to the purchases made by people living with disability who have Individualised Funding (aka Individualised Budget, Personal Budget, and Self-Directed Support).  Through a collaboration between In Control and a specialist online services company, people with a personal budget can do their shopping online, at Shop4Support (www.shop4support.com).

Though still in its early days, this engaging site carries merchant 'stores' covering a growing range of offerings, including planning support, personal support, overnight support, financial services, advocacy, legal services and plumbing supplies.  Just like Ebay or Amazon, shoppers can move through the site selecting items and then paying at the checkout.  But there is other stuff there too.  A person can upload their personal budget details to the website to help keep track of their spending, with the money moving directly from the public funder's account (the Local Authority, a bit like an australian state or territory) to the merchant's account.  This gives the person full control but without the hassle of managing the transaction.  For the local authority, this arrangement provides what appears to be a cost-effective approach to managing the transactions and accountabilities associated with Individualised Funding. 

The other thing I like is that people can upload their own stories about how things are going, what is working well and what could be different.  This creates the opportunity for an online community to share stories about how people are using Individualised Funding to move towards a good life.

The merchant stores carry have full price transparency, together with other information about the organisation's values and approach.  This gives the shopper a good opportunity to compare different support agency offerings.  I am also told that, just like some other online shopping sites, shoppers at Shop4Support can also apply a rating to different agencies.  This means that there is consumer-driven real-time evaluation of support agencies and other merchants.

Lest we forget that you don't get yourself a rich life simply by buying stuff (where people run the risk of living a lifestyle characterised by people who are paid to be there) the site is also developing community pages so that visitors can explore local community facilities and services, to find out how best to access opportunities that are available to all citizens locally.  I can also imagine the emergence of other offerings, such as Circles networks, Microboard support, and opportunities for people and families to link with other people in similar situations.

 

I haven't fully navigated the website because I don't have a personal budget and so can't access the full functionality.  And much of what I've described in this blog posting is based on what the people who run Shop4Support have told me.  So I can't vouch for the accuracy.  But the point here is that the site exists, and demonstrates that it is possible for there to be Individualised Funding arrangements where: 1) the person is in the driving seat without being swamped by complexity or bureacracy; 2) the person is in the valued role of cashed-up shopper in a marketplace where s/he can choose those agencies and services that have the best match with what s/he wants; and 3) the person can access a number of opportunities for genuine fellowship in the local community.

Naturally there will be significant costs associated with setting up something comparable in Australia.  I can't help but imagine that in the meantime there must be a lower-tech way of achieving this degree of connectivity.

Providers and Personalisation: the quick and the dead

Birmingham UK

As increasing numbers of people now understand, and regardless of the extent of availability of Individualised Funding, there is nothing stopping any service provider, better termed 'support agencies', from moving towards genuinely personalised services.  Nothing.

I've spent a fair bit of time in the UK talking with various support agencies who are currently working out how best to transition their services in line with a national government directive for disability support to be personalised, and with the target that 33% of the disability population have personalised support arrangements by 2011.

What is clear is that there are, of course, a number of practical considerations that a support agency must work through.  Once the agency has had its moment of clarity about doing the right thing, it is then prudent for that agency to undertake an audit of organisational capacity, especially in terms of strategic thinking, change management and, critically, organisational culture change.  Those UK support agencies who began such work early have been the ones who have enjoyed the smoothest transition so far.

These are important considerations. An agency needs to be able to think and act strategically if it is to move intentionally towards a vision that sees people living with disability receiving the support needed to live a good life.  Similarly, an agency needs to be able to not only technically manage a change process but to also have faith in it.  Such faith will come from the heartfelt belief that a person living with disability should have personal authority in his life, can participate as a citizen in the life of his community, and has potential to grow and learn.  These are true of all people living with disability.  If a support agency struggles with these ideas, it really needs to get out of the business.

And, an agency needs to understand what organisational culture is, how it comes about, what sustains it, and how it can be changed for the better.  The main way that support agencies assist people is through human power, so an agency's leadership has to be able to build the right culture among its people.

And then there is the relationship between the agency and each person it supports.  If the agency is to truly transform to personalised arrangements it has to reflect on its relationship with the people who use its services.  If you work with a support agency that hasn't begun to reflect on its relationship with its customers, then try these initial questions, asked from the perspective of the person living with disability: 

1. How are you getting to know me?
2. What do you know about what is important to me and what I want to achieve at this point in my life?
3. How are you tailoring your available resources so that I am supported with the above, rather than just served as part of a group?
4. How are you arranging safeguards (if we're all agreed that I need them) so that I can safely navigate the normal risks of life?
5. What steps are you taking to match my support needs with staff who share similar interests to me, and do I get a say in which staff support me?
6. What steps are you taking to assist me to build natural community connections and relationships, so that my daily life is not dominated by the presence of paid workers or other people living with disability?
7. How do you know that your support is truly assisting me to live the life i want?

So, seven questions that can help a support agency begin to think through its relationship with the people it seeks to assist.

If you are a person living with disability (or a family member or friend of someone less able to speak up), try putting these questions to your support agency.  I'd be very interested to hear what response you get.

And if you work with a support agency, then Julia Farr Association would be very happy to assist you work through this stuff.  Because support agencies that are committed to delivering highly personalised support, are themselves worth supporting.  

Keeping the flame burning

Anonymous local authority, UK

Oh how things can change.  Some folk may be aware that I was in the UK a little over a year ago, and was very enthusiastic about a certain local authority that was rolling out Individualised Funding, known in these here parts as 'Self-Directed Support' and 'Individual Budgets'.

What marked it out for me?  For starters I like the coherent, thoughtful approach to the methodology, where the local authority seemed to genuinely invest time in getting to know people and their situations.  I also liked the fact that they had people with a lived experience of disability on the implementation team.  Also, the implementation team leader was a passionate advocate for the methodology and who in turn was well-supported by a senior manager within the local authority.  It was all VERY encouraging.

Fourteen months on, I'm back in the UK and I got an update. And frankly a shock. Things have changed, and folk are no longer quite as enthusiastic about this local authority.  So what's changed exactly?

The senior manager moved on to a job with another local authority.  This in turn changed the balance of senior leadership, and meant that the Individual Budgets program lost its key 'sponsor' i.e. the person who is senior enough in the organisation to help fix issues and remove roadblocks.  Without a sponsor, the implementation team leader was now under-supported on critical issues, it was only a matter of time before that person departed, and they have.

This is a reminder to all of us about the need for leadership vigilance and renewal, so that there is always someone to carry the torch and light the way.   It is so important to support other people to grow into leadership roles so that people can survive the departure/loss of a leader.  This is as true for an informal circle of people in the life of a person living with disability as it is for a formal organisation trying to do good works.

But for this particular local authority there is an even bigger issue, which applies to ALL the local authorities in England.  People will know that I have previously asserted the following:

'a good idea is at its most vulnerable during implementation'

And this is most definitely the case with Individual Budgets in the UK, which has perhaps become the victim of its own success.  At this stage of its implementation, the national government has announced that all local authorities must offer it, and must achieve certain targets.  Let's think about what that means.  While it is a triumph for those local authorities who have enthusiastically responded to the call from the disability community that there must be a better way, there will be other local authorities who have been less enthusiastic, or who have otherwise been self-limited by the drama of their own bureaucracies.  And now they've been told to do it, and get the numbers up.

So what happens?  All of a sudden there is less attention to detail, to getting to know the person really well, to assisting the person to build an arrangement that is tailored for them.  Instead, its a numbers game, involving a quick look and a quick response.  Which means that there will be a bias towards working with people with less complicated situations, and a bias towards buying things that are already out there.  In this way, the model of Individual Budgets would lose all of its potency, making it highly likely that people would end up with pretty much the same services that they had before.

Add to that the high likelihood that there will be a cut in support funding across the land because of the effect of the global downturn on the British economy, and things can start looking grim.

The main thing that committed people can do right now in the UK is to stay true to the fundamental values of Self-Directed Support, and to continue to work with those local authorities who still carry the vital ingredients for success.  That's the best way to ride out this particular storm and maintain momentum.

As seafarers will know, it's never easy to keep a candle flame alight during a storm, but without such situations we wouldn't have had the invention of the hurricane lamp.  One of my favourite innovations, the hurricane lamp (in case you didn't know) is a specially designed glass lantern that protects the burning flame from the elements, so that even during a storm you can light your way.

I am hopeful that a hurricane lamp will merge to protect the momentum and potency of Self-Directed Support and Individual Budgets.  Its too important to be snuffed out.

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. 

Trial and Error? South Australia announces introduction of Individualised Funding

On 28 October the South Australia government announced its arrangements for a cautious introduction of Individualised Funding (also known as self-directed funding). Unfortunately, despite the wealth of experience and wisdom elsewhere, the SA trial is steeped in caution and constraint and is unlikely to make that much of a positive difference in the lives of the 50 people lucky enough to be chosen by a government selection panel. Indeed, it looks set to repeat some of the errors that other places have already learned from and moved on.

I really want Individualised Funding to be a success in South Australia, so it is painful to have to be critical of the SA initiative. But criticise I must, because the scheme contains more irony than a car wreckers yard. How so? Well, the whole idea about Individualised Funding is that it gives people genuine choice and control over their publicly funded support arrangements. But choice and control are missing at critical points throughout the SA initiative's arrangements. First, only 50 people get to be involved. What if you are person number 51? No choice, no control, because you're not in. If more than 50 people want to choose this, why limit it to 50? Sure the local arrangements needs to be road-tested, but you don't have to stop at 50 to achieve this, and you shouldn't have to wait a year or longer for your turn, because road-tests simply don't have to take that long.

Next, if you want help with planning, the scheme's paid facilitators have already been identified from within government services, so there's not much choice there. This isn't to say that the facilitators will not be helpful, just that they may not be the people that the participants would choose, if given the choice.

Next, you can't employ your own staff. So again, this sets limits on choice and control. While not everyone will want to run their own support crew, it's important to have that option there. We can reasonably assume that at least some people will want to do this, but they're not allowed. Bye bye again to choice and control.

Finally, there is the matter of what you can spend the funds on. In the better examples of Individualised Funding in practice, you have a very wide choice about how you can use the funds, as long as you don't spend the money on gambling or something illegal. Unfortunately, the SA initiative states that you can't spend the funds on anything that people would normally buy with their own money. This is a profoundly unhelpful limitation,and will hinder people trying to build creative and personalised arrangements in their lives.

So it seems that the SA Individualised Funding initiative is the choice and control you have when you don't have choice and control. Time to celebrate. Claytons, anyone?