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. 

Congregation & Community, Positions & Interests

In South Australia there has been media attention on the living conditions at the Strathmont Centre, one of the few remaining 'older-style' congregate support facilities in South Australia (as distinct from 'newer style' congregate support facilities such as community-based group homes).  Following this attention, the SA Government minister for disability, the Social Inclusion Commissioner, and others, visited the venue and confirmed that the venue is severely run-down and anything but homely.  Most recently, the SA government has released an evaluation report that examined the circumstances of the first thirty people to leave the Strathmont campus as part of a project initiated in 2005. Echoing a plethora of similar reports elsewhere over the years, this report identified a number of helpful benefits that emerge when people move away from large congregate care facilities.

When such material becomes public, it presents the opportunity for commentators to give their views, and often these views focus on the matter of 'institution versus community'.  Some commentaries also include assessment of those who hold different views.  For example, I have witnessed assertions on the one hand that the salaried professional advocates, experts and academics don't know what it's really like to be, or to support, someone living with severe disability, and on the other hand that people who believe in the merits of congregate settings are misguided and pushed to that rose-tinted view by an uncaring system that leaves them exhausted, frustrated and desperate.  Such views can often be taken personally and can drive some people to hold on to their particular position come what may.  This may not advance the life chances for people living with disability.

It may help to take a moment to focus on the two main differing points of view in this debate.  These are, (1) that congregate services (institutions big and small, including 'villages' and group homes) are places that will always struggle to offer truly personalised supports and that people should have a life in the community, and (2) the opposite view, that community is not working for many, who are unsupported, isolated and lonely, and that well-run congregate services can give those people belonging and fellowship.

Even with the advent of the United Nations Convention on the Rights of Persons with Disabilities, this division of view has remained.  Supporters of community emphasise the UN assertion of inclusion, on the basis that presence and participation within the wider community will bring people into richer lives.  Supporters of congregate services emphasise the UN assertion of choice, on the perception this includes the right to choose to live with others in a congregate setting.

The focus of the debate is about where people live and the support they receive there.  The aversion to congregate services comes from a concern that such places remove people from community and render them more vulnerable to reduced choice, making it harder to connect into ordinary relationships with other citizens in the community, and increasing the risk of neglect and abuse.  There have been many reports that have uncovered such problems, often through highly troubling accounts of people's experiences.

In contrast, the aversion to community services comes from a concern that 'idealists' want to place people into communities that don't want them or otherwise don't adequately support them, which leaves people in lonely, isolated and unsupported settings, making it harder to connect with other people living with disability, and leaving their families to pick up the pieces.  I am again aware of the stories about when community supports have not been thought through properly for a particular person.

For me, the bottom line is this: if we want to see people living with disability move into a rich, valued life, then we are failing many people regardless of their service setting because people are not getting properly designed, personalised, responsive services.  It may help, therefore, to avoid the tendency to argue a particular position about service setting, and instead look at the underlying interests, because therein lies the possibility of a meeting of minds and hearts. 

For example, I can easily imagine that wherever people place themselves in the debate, there will likely be agreement about what we don't want for people living with disability. May I suggest the following: we don't want people to be diminished, neglected, abused, lonely, or their life potential wasted.  Hopefully you agree.  If we can agree we don't want such things to happen, then we are likely to agree that this must be reflected in a person's support arrangements.

Following on from this, we might, as concerned fellow human beings, find agreement on what do want for any particular person living with disability. For example, some of the things we might find it easier to agree on are that the person is happy, is welcomed by our community, that the person has and makes genuine choices, that the person keeps learning and growing throughout their life, that the person is loved for who they are, that the person is inherently valued by their neighbourhood and community as a human being.  Hopefully you agree. 

For all of these, there will be people who say they can reliably be delivered in community settings, and there will be people who say they can reliably be delivered in congregate settings. So how might we assess this?

Well, let's look again to the United Nations.  The Convention on the Rights of Persons with Disabilities is an attempt to codify such interests, to formalise the expectation that every person living with disability gets a fair go at a decent life.  Naturally this includes choosing where to live, and who to live with, but it includes so much more, setting out clear expectations about people's active roles in community life, and of belonging in society. 

An additional problem with congregate services, however intense the efforts might be to genuinely personalise the supports therein, is that their nature creates stigma, where the wider community, the other folk in the neighbourhood, view the service as 'special', as something 'other' than an ordinary household, and conclude they themselves have no significant role to play as neighbours, acquaintances, friends, that their involvement is not needed because the occupants are being cared for.  Some local people might get involved but this is often in a more formal way, as a 'volunteer', with a role description and a reporting relationship.  This is not the same thing as being a welcoming neighbour and fellow citizen.

Perhaps the biggest issue that leads people to want congregate supports for their loved one might be their belief that the wider community is not interested in the lives of people living with severe disability, that it doesn't care, and that true inclusion is pie-in-the-sky. In which case, the congregate service is viewed as a safe harbour, a sanctuary from an uncaring world, a refuge from fighting a battle can never be won.

I understand how it is that some people can arrive at this view, but there is a deep irony here, because any lack of interest or welcome from the wider community has in no small part been created by the fact that many people living with significant disability have received services that have taken them away from ordinary community life.  And each time we set up a new 'village' or group home we are reinforcing this.

I refuse to believe this is how it has to be.  Communities are founded on, and sustained by, a sense of mutuality, of fellowship, of interdependence, of belonging. We all have inherent value as human beings, which means we all have a place in our community, by our presence and by our participation.  If we believe that people living with disability have inherent value as human beings (and to not believe this would be to see people living with disability as something less than human), then we need to find ways to make sure each and every person is welcomed and included in the life of our communities. 

There is therefore an urgent need for a stronger way of understanding and measuring the essence of choice and the essence of inclusion, so that people's support arrangements can be properly held accountable, and replaced if they are failing people.

However, achieving this means a level of activity that is far beyond the consideration of where someone lives.  This predominant consideration sells people short, either by separating them into congregate service settings that cocoon people in a dubious artificial world that is ultimately wasteful of that person's life and their inherent value, or by placing people into community accommodation and wrongly assuming that such a move by itself will take people into a richer life.

The answer lies in the proper attention to personalised supports, in the context of an ordinary valued life, and in creating the circumstances where the person has a growing personal network of people who give their time freely, not as 'volunteers' but as friends, acquaintances, associates, fellow citizens with an authentic regard for the person. This is not pie-in-the-sky, regardless of the degree of disability a person lives with.  I've seen it.

After 25 years of working in human services in a number of countries, and witnessing the experiences of people living with disability who are dear to me, I am absolutely convinced that good, authentic personalised supports are much more likely to take people into a rich, valued life than less-personalised congregate supports. 

If we want the best for people living with disability, then we must strive for authentic personalised supports, anchored on people's inherent value as human beings and a vision of an ordinary valued life.  We have to sharpen our imagination and redouble our efforts so that our communities uncover and uphold this inherent value.  Otherwise, it will remain the case that many families are left to cope without adequate supports, and that many people living with disability remain in a world of institutional thinking and at risk of being treated in ways that suggest anything but 'support' or 'service'.

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 getting real

In a recent blog posting I talked about the problematic nature of congregate supports.  Among other comments, I received one from a parent, Ronni, who said this:

“Yes Robbi you are missing something. You have not asked those dedicated parents who provide the day to day care for the severely disabled. As much as we love our children we will wear out eventually and like you we deserve a holiday occasionally. Congregate living is an economic reality and does not have to be a bad thing per se ala http://www.camphill.ie/What-is-Camphill-p-6.html.
You harp on about what the rest of us would choose. Well my son is not like you or I. He is a very sociable being and will never be able to use technology to communicate - he needs 24/7 care and face to face interaction. I cannot provide this for the rest of his life and nor should I be expected to. Time to leave cloud cuckoo land. If you want a taste of reality you are welcome to come stay at my place for a month. You would learn the full meaning of compromise because your life would certainly change!”

I am very grateful to Ronni for taking the time to comment, and I’ve placed the comment into this new blog posting because I wanted to make sure people didn’t miss it - Ronni’s comment raises important points and made me stop and think.  In essence, Ronni’s challenge to me is to get real.

I am not a parent of a disabled child so I do not have the experience that Ronni and other parents have.  What I can understand is that many parents provide extensive and unremitting day-to-day support for their disabled son or daughter, and that over time this can lead to parents wanting to consider other ways that their family member can be supported.  

I talk a lot about personalised, individualised, socially inclusive options, and I much prefer these to congregate options.  This is because I have seen many services in many countries over the years, and the better services have typically involved people being supported in highly personalised ways within community (and not necessarily with a high price tag on the support). 

I realise that such options are not always available in every location.  Meanwhile, parents will want to choose the best option available for their son or daughter.  Ronni directs me to a website about the Camphill communities.  I have had past involvement with Camphill communities, and to a lesser extent L’Arche, and I recall an ambience characterised by a welcoming, family atmosphere and a culture of acceptance and contribution.  

Interestingly, the Camphill movement emerged at a time, in the late 1930s, when large scale congregate services were the main service option for vulnerable people who could not be supported at home.  By contrast, Camphill’s message was about the innate potential of people and how this might be nurtured.  The message is about the inherent worth of each person as a unique being.

What such endeavours appear to have in common is a deep respect for people living with disability, a commitment to live by family/community/spiritual values and a desire to support people to reach their potential.  I can see how such services will appear attractive and practical.  If I was a parent of a child living with disability and I needed another way for my son/daughter to be supported, I would want the best option available; if it were true there were no individualised options available or conceivable, then I can imagine I might seek more information about a setting like a Camphill community.

Unfortunately, because of the general history of service provision, augmented by the habits of government funding in many jurisdictions, most congregate services do not adequately reflect each person’s uniqueness, and instead people are installed into pre-ordained service programs and settings.  I have spent many years working with, or with the consequences of, congregate services.  From these experiences, I believe the best, most personalised, congregate services are still not as good as the best, most personalised, community-based services I’ve seen. 

I am also convinced, from my own experiences and from what has been reported, that vulnerable people (including people living with severe disability, people living with enduring mental illness, and frail older people) are at the greatest risk of neglect and abuse when they are placed in settings that render them separate from, and invisible to, the wider community.

Our work at JFA has been about trying to find, or imagine, better supports for people living with disability than those currently available.  As part of this work, I have been involved in, or otherwise seen, arrangements where a person living with severe disability is being well-supported without having to use congregated settings.  Such opportunities are not yet available in all locations but we can hope that one day soon they will be, so that there is authentic choice.   What is true is that there are plenty of examples available of how a person living with severe disability can be well-supported in highly individualised ways, so the only things that are stopping any jurisdiction, any community, from creating such choices is a lack of imagination and a lack of determination.

In the meantime, I can understand any parent being sceptical about the possibility of such arrangements, given the current reality of daily life.   Therefore, I think one of the issues for us as a community is that many people living with disability, and many parents, and many professionals, may not be aware of some of the promising and progressive advances that have been demonstrated in individualised supports.  Further, it seems to me vitally important that family members do have good information about such possibilities before making a decision about future support arrangements for a dependent loved-one.

At JFA we hope to illuminate more of these helpful advances.  Building on the well-received workshops we hosted in 2010, we are currently planning a number of events for 2011 that will provide greater visibility for some of these developments, and hopefully will provide useful material to people living with disability, the family members involved in their lives, and professionals.  

The reason we do this is because we want to help ensure that people and families are supported to get information about the progress here and elsewhere and how it shows what might be possible in people’s lives.  Otherwise, many people may find themselves making big decisions in the absence of such information.  It falls to all of us to do what we can to make sure that people living with disability, and the families involved in their lives, are assisted to assess, and access, the best possible options for support.

An increasing number of families are writing books about their discovery of such options and the resulting positive impact in the life of their family member.  For anyone interested, we have some titles available for loan from our office.  And if you have been inspired by someone’s book about what has been possible in their own life or that of a loved one, then let us know and if we don't have that title we’ll track down copies for people to loan.

In conclusion, I do not set out to dispute the role of families who are in the lives of dependent family members living with disability, or to criticise the decisions they might make about the support arrangements for their loved one, or indeed the choices that a person living with disaiblity might make for herself or himself.  Instead I hope that I can make my contribution to ensuring that people have better information about what might be possible, and where such options authentically safeguard that person's value as a human being, and uphold and advance the person's uniqueness and potential.

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 Carnival

Now that the identity of the new Australian government has finally been resolved, I'm sorely tempted to break into a rendition of The Seekers' hit, 'The Carnival Is Over'.  It's been page-turning stuff, and we have been regularly reminded that the election has come down to handfuls of votes.  This has included some comments about the number of 'informal votes' that were cast, where some people showed up to vote but for whatever reason filled out their ballot paper in such a way that it could not be counted as a vote for any particular candidate. 

But if the general election did indeed come down to mere handfuls of votes, has there been any focus on the 'lost' votes of people living with disability?  After all, there are a range of ways that a person might be thwarted in casting their vote.

Casting your vote is the moment when you make your view known.  It is when you have your say.  Unfortunately, it is not so easy to cast your vote if the polling booth is physically inaccessible.  Also, it is not easy to cast your vote if the moment of voting, when you put your mark against a candidate's name, is reliant on you being able to see the ballot sheet, read the words, and direct the pencil towards the box you wish to mark.  If you need any assistance with these, then there goes your privacy, which is not a good look given that this is meant to be a secret ballot.

Of course, people can use a postal vote process so that they don't have to show up to their local polling booth, and that's a useful option, but it should not be the only option.  Every polling booth needs to be genuinely accessible.  It would not seem right if a person has to use a postal vote arrangement (or go somewhere else to cast a vote using special technology) merely because their local polling booth is inaccessible.  

Accessing the local polling booth is important, and not just because of this principle of accessibility.  It is important because voting is one of the most valued, most fought for, and most defended, roles in society.  If we assign high value to the act of voting, then we assign high value to the person doing the voting.  Given that many people living with disability currently don't get a fair go in undertaking valued roles, it is critically important that a person has the option to attend their local polling station and cast their vote, and be seen to do so.  For this to be possible, all polling booths need to be accessible, both in terms of getting in the building and privately casting the vote.

And then there is the matter of enrolment.  I wonder how many adult Australians living with disability are not enrolled to vote because someone else has formed the view that there's no point because the person does not have the capacity to choose.  That's a big decision for someone to take and should not be taken lightly, because who knows for sure the degree of a person's capacity?  In the legislation, reference is made to people being "of unsound mind", but what exactly is an unsound mind and who gets to decide?  IQ scores have often been used as a guide to someone's intellectual capacity, and may even be a consideration to determine an 'unsound mind', but I don't see why a low IQ score should mean you don't get to vote.  Since when did you have to be smart to vote?

One way through this is to ensure that every young Australian, including young Australians living with disability, are automatically enrolled to vote once they reach the age of 18 years.  After all, voting is mandatory and an automatic enrolment will reduce the big rush from first-time voters to register once the Prime Minister has announced an election, many of whom miss out because there is hardly any time to enrol once the announcement is made.

Were Australia to introduce automatic enrolment, this would ensure that all young Australians living with disability are assigned the valued role of Voter, and it just might shift the focus towards how a person might best be supported to make their voting decision.  This might well take more effort than just deciding that the person doesn't have the capacity, but for our society's sake it is worth it.   In this way, we assume the capacity of everyone to cast their vote, which means we assume the capacity of everyone to make a contribution to their community, to belong. In our lives, there are many ways we might move towards a sense of our own contribution, our own value to our communities, our sense of belonging, but for every adult Australian the very first role assigned on reaching adulthood is the right to vote.  May we never understate the importance of this for Australians living with disability, regardless of what we imagine might be the extent of a person's capacity. 

So, as is currently happening in South Australia, I hope that the Australian Electoral Commission reviews the process of the recent national elections, and examines how best to facilitate every Australian's right to vote.  Also, it would be very helpful, indeed vital, if there was a panel of Australians living with disability to advise the Commission on such matters.  Ditto each state and territory.

I can imagine there will be many people out there who might think there are bigger issues to deal with than this.  Why bang on about voting when some people can't even get reliable assistance to get out of bed in the morning?  This is an understandable view, but bear in mind the intensity of the post-election negotiations we have all just witnessed, where several 'independents' were able to advance a number of causes favourable to their local constituencies.  If we had a comprehensive set of arrangements in place that uphold the right of Australians living with disability to vote, then the next time there is a hung Parliament, it may just be that the focus of the negotiations includes the interests of voters living with disability.

Flying the Standard Part Three: restriction vs safeguarding

This blog posting is the third instalment relating to the current review in Australia of the National Standards for Disability Services.  This posting looks at a second big example of problematic language within the current Standards - the phrase ‘least restrictive way’. 

 

The Standards say that:

 

Each person with a disability receives a service which is designed to meet...his or her individual needs and personal goals.

How good does that sound?  Pretty good actually. The only problem is that I've taken a phrase out and replaced it with some dots.  Let's now put that phrase back in, and look at what the Standards actually say:

Each person with a disability receives a service which is designed to meet, in the least restrictive way, his or her individual needs and personal goals.

What a shame.  Without the bit in red, this would be an unequivocal, potent and affirming statement, but for the fact that it’s been blighted in the middle by five words – “in the least restrictive way”.  The problem with this wording is that it puts the possibility of restrictive practice on the table.  It suggests that a person’s freedom might indeed need to be restricted.  Put more simply, the use of this wording gives service agencies the permission (regardless of whether they choose to act on it) to think about and apply restrictive practice.

Ouch!

In this way, the Standards, however unintentionally, reduce the horizon of what is possible in people’s lives, because every Australian living with disability who comes into contact with formal services is entering a system that is entertaining the possibility that the person’s freedom might have to be restricted. Double Ouch!

I can imagine some readers of this blog wishing to remind me that there are people living with disability who live in very dramatic circumstances where there is a greater risk of harm to themselves or others, and that the other people in that person's life, or service agencies, need to act decisively to manage the situation.  I understand that pressure.  But if our main response to such situations is to apply restriction to manage the problem, then we may indeed be reducing the immediate risk of self-harm, harm to others, material damage etc, but are we actually doing anything to support that person to move on from such distressing circumstances?  I have encountered and worked with people whose circumstances have resulted in their being restricted for years, without ever being given an authentic, sustained opportunity to move on.

In this regard, the current wording of the Standards has not helped, because the Standards have endorsed the possibility of restriction in the first place.

We have to move away from such language.  

Therefore, instead of focusing on the idea of restriction the Standards could be reframed to focus on the idea of safeguarding.  Where restrictive practice is service-focused, with an emphasis on managing a ‘problem’, safeguarding is person-focused and demands careful attention to rights-based lifestyle goals such as choice and citizenhood and the associated support that someone with heightened vulnerability might need to succeed.

If you think about it, this isn’t a particularly radical idea.  For all of us, we live our lives where we encounter risk, and our habit is to respond with safeguards, so that we can get on with life.   

A mundane example is crossing the road, which brings with it a number of risk considerations, given that roads are used by fast-moving heavy pieces of metal.  If we wanted to stay absolutely safe, we might choose simply to not cross the road. However, making this decision might close us off to the opportunities that lie on the other side.  Instead, we consider how we might cross the road in the safest possible way - finding a place to cross where we can see the flow traffic, then waiting for a gap in the traffic, then crossing quickly.  We might also use a place where crossing is facilitated.  Such practices are examples of safeguarding.  As we grow into our lives we learn a range of techniques for crossing the road as safely as possible.  By applying these techniques we safely manage the risk of crossing the road and get on with our lives.

The point here is that if we think about safeguards rather than restrictions it may make it more likely that the support a person receives takes her/him towards a more ordinary valued life rather than a life characterised by containment and diversion.

In which case, I’d be keen to see the phrase restrictive practice removed from the Standards, and replaced by something more affirming, such as the following:

Each person living with disability is supported, including the thoughtful use of safeguards where these are needed, to move towards a life of choice and citizenhood.

What do you think? Can you do better?  Post a comment with your own suggestions.  If you feel strongly about the importance of safeguarding rather than restriction, do make your views known because the Standards are being reviewed by government right now.  You have until 18 July, so click here to go to the government website.

Flying the Standard Part One: being a citizen

As you may know, there is currently a review of the National Standards for Disability Services. The current Standards are: 1) service access, 2) individual needs, 3) decision making and choice, 4) privacy, dignity and confidentiality, 5) participation and integration, 6) valued status, 7) complaints and disputes, and 8) service management.

The Standards ( click here to read more about them) were implemented in 1993 with the goal of ensuring Commonwealth and State funded disability services have a positive impact in people’s lives. The Standards provide the framework for disability service provision expectations and apparently the Standards focus on ensuring services are addressing the principles and objectives of Commonwealth and State/Territory legislation, including assisting people to integrate into community, assisting people to achieve positive outcomes, such as Independence, and promoting in the community a positive image of people and enhancing their self-esteem (taken from the Commonwealth Disability Services Act 1986, which you can access by clicking here).

Well, if that’s true then the Standards have failed. Failed, failed, failed. Just reading the Shut Out report (click here to read it) is more than enough evidence of that. Seventeen years on from the introduction of the Standards, there are many, many Australians living with disability who have not been assisted to integrate into community, who have not been supported to achieve positive outcomes such as independence, and where there are not sufficient positive images within community of people living with disability as valued citizens.

If the whole point of the Standards is to shape disability support services, it begs the question why billions of dollars of public funds have continued to be handed out to service agencies if they are not meeting the standards. And if that remark invokes outrage among service providers who believe they are meeting the Standards, how come this wasn’t reflected in Shut Out, and how come there are still many thousands of Australians living with disability whose service arrangements mean they remain separated from community life, are not achieving ordinary life outcomes, and are still regularly encountering discrimination?

So it’s about time the Standards were reviewed.

Let’s start from the beginning. A standard is a basis for comparison, a reference point against which activities can be evaluated. It follows that a standard should somehow encapsulate the driving values of the enterprise. It is therefore important that disability service standards are based on a strong value base and associated vision.

The main reason why we set aside public funds for people living with disability (and people who are ageing, and people living with mental health issues, and people who are homeless, etc) is to provide a response to the increased vulnerability of their circumstances, so that they can get on with their lives on a similar basis to other people.

In its essence this is about being a citizen.

Therefore, the updated Standards must be based on the driving value that people living with disability are citizens first and foremost, and therefore belong at the core of our communities.  This means that the Standards must have proper regard for the rights of people living with disability to live active, inclusive lives in community, and to promote and uphold this 'citizenhood' in the design and commissioning of disability supports.

Further, this means that those disability support arrangements must ensure that people living with disability have genuine opportunity to access, and maintain, presence within a welcoming local community, and to enjoy active participation in mainstream community life alongside non-disabled people.

To provide for anything less would mean that our disability service settings are undermining the right of people living with disability to live a decent, valued life.

And if we wish to uphold the notion of people as citizens, then we need to be clear about what it means to be a citizen, and how we might support people to take up that role. Achieving this degree of clarity will make it easier to then set meaningful, compelling and accountable standards for the support that people seek.

In pursuit of such clarity, the Julia Farr Association (the organisation behind Purple Orange) recently published its Model of Citizenhood Support, which has five domains that we think are critical for people to move into citizenhood roles (if you’re interested in knowing more about our Model of Citizenhood Support, get in touch). 

We found our model useful when thinking about the current standards, because it helped us spot certain problems. For example, the current Standards are not explicit about fellowship and connection with other people (one of the domains in our Model of Citizenhood Support). Some might argue that the current disability service Standard 5 (participation and integration) delivers that, but I disagree. Undertaking an activity in the community does not automatically bring a person into rich association with other citizens. In fact, a lot of so-called community-based services actually result in people living with disability spending their time primarily alongside other people living with disability, and where the nature of their connection into community life is as though they are moving through community in a hermetically-sealed opaque bubble. Such opaque bubbles include disability-specific transport, sheltered workshops, group outings, unnecessary substitute decision-making and one-sided relationships with paid support workers, all of which serve to insulate the person from more natural, organic community connections.

If we are to replace such sham experiences with more authentic connections, this must be reflected in the Standards.  So let us hope that the review of the Standards brings forth a more compelling accountable framework for supporting people into ordinary valued lives.  Otherwise, as a society we are in danger of failing people living with disability well into the future.

The second installment on this topic looks at the language within the Standards, and how the words we choose can critically misshape entire service systems.


In the meantime, you have until Sunday 18 July 2010 to make a submission to the national consultation on the National Standards for Disability Services, so now is the time to give your views.  You can click here to find out how.