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.

An important day needs important commitments

It is December 3rd, again, which means it is International Day of People with Disability.  As I've mentioned in previous years, having just one day to think about disability seems odd, especially if the rest of the time the topic is then far from most people's attention.

But this year has been different in Australia, with disability making a regular appearance in the news because of the work developing a National Disability Insurance Scheme.

So this year's 'special' day is perhaps an opportunity to reflect on the importance of how ideas and values are translated into accountable actions.

This morning Purple Orange was at the Enfield community centre in Adelaide, where the local council, the city of Port Adelaide Enfield, launched its five year Disability Discrimination Action Plan.

It felt right the council chose this day, International Day of People with Disability, because their new action plan goes beyond considerations of access to establish a broader context of inclusion. The plan includes a range of important access considerations– such as ramps, walkways, building features and restrooms –but also goes further. It looks at the role of the disability community in council decisions that affect people living with disability. It looks at workforce issues, not just in terms of awareness-raising but also how best to maximise opportunities for people living with disability to join the council workforce. It looks at how the council can serve its citizens so everyone feels included in that community, as authentic members of the club called City of Port Adelaide Enfield.

Purple Orange had the privilege of working alongside Port Adelaide Enfield in developing this plan. We assisted their public consultation, and provided support to think through the key issues. The plan includes a range of practical initiatives to help the council advance the goal of an inclusive community.  There is good energy in the council to make things happen.

International Day of People with Disability represents an opportunity for people and communities to commit to accountable actions in support of people living with disability getting a fair go at what life has to offer. Port Adelaide Enfield's Disability Discrimination Action Plan sends an important positive signal for local people living with disability.

for a copy of the plan, click here.

 

Currently, Purple Orange is working with several councils on how their services might help advance the life chances for people living with disability.  In this work, it is clear to us that an important ingredient is the passion and commitment of key officers involved, and their inclination to take action in support of positive changes.

 

Such values-based personal leadership can help real momentum to build, and its great to see it in the work of local councils.

 

 

Everything you wanted to know about intimacy (well, maybe)

I am posting this to the blog in case some people missed this when it was released by our officde yesterday.  I welcome your comments.

This week there has been media coverage in South Australia and elsewhere relating to the possible decriminalisation of the sex industry in South Australia. This has included the assertion that decriminalisation will be particularly helpful to people living with disability because of the potential benefits of their using the sex industry.

The JFA Purple Orange responded to media enquiries but we don't think the resulting coverage adequately reflected our view, hence this posting that consders some of the issues when discussing disability nd the sex industry.

The Principle of a Fair Go

As our subscribers will know, we believe that people living with disability should be able to access the same life chances as other citizens. If the sex industry is decriminalised so that adult Australians can access it then this logically and properly includes adult Australians living with disability.

For some people living with disability wishing to exercise choice about relationships and intimacy, this can present several challenges.  For example a significant proportion of the disability community are people living with intellectual disability.  There is a question about who would give consent on matters relating to intimacy. On what basis would someone support a person with their decision-making about relationships and intimacy?

A second kind of challenge is where a person might need practical assistance to take action as a result of their choice. This means for example that a person living with physical disability might need assistance from his or her disability support agency to make a transaction and this might include a transaction in the sex industry. It is not clear, if the sex industry were decriminalised, whether all disability support agencies would routinely support such transactions.

The issue is not about whether a person living with disability is allowed to make choices about relationships and intimacy; it is about how that person is supported to make and enact those choices.

The Issue of Therapy

One argument that is put forward in support of people living with disability accessing the sex industry is that it has therapeutic value. The problem with this argument is that it maintains a medical model perspective on the lives of people living with disability. There are many things in our lives that are enjoyable and bring benefit, for example going to the beach, sharing a meal with friends, watching the sun come up, being congratulated for a job well done, falling in love, earning a living wage, attending a festival event, helping another person, spending time with family, watching our favourite sports team win, and shared intimacy. We may describe such experiences a number of ways; ‘fun’, ‘rewarding’, ‘beautiful’, ‘uplifting’, ‘awesome’ and so on. Typically we won't reach for the work ‘therapeutic’ as our first choice, as in “thank you for the barbeque, it was very therapeutic".

People don't medicalise their daily life experiences so it doesn't seem right that we should do so for people living with disability.

The Issue of Paid Sex

Across a range of jurisdictions there has been no shortage of material on the topic of disability and the sex industry. For example New Zealand MP Tim Barnett, in his 2007 paper on the consequences of the 2003 legislation that decriminalised the sex industry in New Zealand, noted that one of the customer demographics was people living with disability. If nothing else, such commentary helps confirm that people living with disability are actually having sex, which might come as a surprising but necessary revelation to those members of our community who have a problem with this.

The danger with the periodic focus on disability in the sex industry is it may create the impression the only way a person living with disability can have sex is if he or she pays for it.  Presumably this is because some people assume the person's disability renders that person unattractive to every potential partner out there in community life. This doesn't seem fair or true.

One possibility why some people living with disability pursue paid intimacy might be because there are barriers, often literally, to meeting people. For many people who have an intimate partner in their life, they may have met this person at work, at a club, while travelling or on holiday, at the beach, in the library, at the pub, during shared study, and so on.

The chances of meeting someone are significantly reduced if you can't access these opportunities, for example because the venue is inaccessible, or because you are unemployed, or because you don't have a living wage with which to make lifestyle choices, or because you don't have a place to call your own where, with privacy, you can welcome someone into your home and your life.

If we were to properly resolve such issues of access and fair go, we might find that the topic of disability and the sex industry becomes less sensational because people have access to a range of possibilities for discovering friendship and intimacy. Try this 2010 article in the Guardian for more on this.

The Darker Side

Decriminalised or not, the sex industry currently is not a strong socially valued part of our economy. Whether it is fair or not, Sex Worker is not a profession you are likely to see high up on the list of trusted professions, and people are unlikely to include in their résumé list of hobbies that they like to purchase sex.  Many people in our community appear to have a personal moral struggle with the idea of the sex industry, possibly seeing the industry as morally questionable and that, by association, the people involved in that industry are morally questionable, weak or even deviant.   In this way, by linking disability with the sex industry, people living with disability might be viewed as morally questionable or people living with disability might be viewed as morally questionable or deviant because they have been associated with an industry

This unfortunate and unreasonable habit of linking disability with deviance has been documented elsewhere, for example here, and it has been argued this has been at least a partial factor in the creation of institutional services.

While it is important to uphold the rights of people living with disability to access the same opportunities as other citizens, in this case access to the sex industry, there is a risk that this will reinforce the possible view held by some members of the community that people living with disability are morally questionable, and therefore of lower social value in our community, because they want to be involved in paid sex.

The Question of Who Pays

The subject of sex industry services has come up more than once when thinking about an Individualised (self-directed) Funding approach to disability support. In any Individualised Funding mechanism there are at least some rules about what people can and cannot spend their funds on.   It is not unusual for the people in charge of public funds to get very nervous at the idea that a person might use some of their disability support funding to purchase sex services.

Our view is that this relates to at least a couple of bigger issues.  First, most people of working age have access to at least some disposable income because they are in fair waged employment.   If this was the case for people living with disability, then the decision to purchase sex services would be a personal matter based on their personal income, and would not be relevant to any Individualised Funding.

Second, it is entirely possible that many people living with disability are using part of their disposable income to purchase items (such as incontinence support, mobility support etc) that arguably should be met through fairer levels of disability support funding.  If this were to happen, it would free up some of the person’s disposable income which then is available to support other choices.

Finally...

Sex is a topic that many people find dfficult to talk about.  But when we do talk about it, may we do so in ways that do not set people living with disaiblity apart from other citizens.  Sex can be about many things - desire, fun, expression of love, even business -  which makes it relevant to all human beings.

We welcome your feedback on this posting.

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.  

Relatively Speaking

Sons and Mothers is the latest offering from the No Strings Attached Theatre Company. Part of the 2012 Adelaide Fringe Festival, the show explores the relationship between mother and son, through the lens of seven men.

Devised and led by the creative Alirio Zavarce, the show opened its run on Saturday 25 February at Adelaide's Queens Theatre, a good location for this weighty, industrial scale topic. The weather had turned the venue into 'sauna theatre', and it would have been easy to be put off by the heat. However, like a Native American sweatlodge or a hot yoga class, the temperature added a dimension to the audience's relationship with the performance, a wrap of maternal closeness.

Six of the actors live with disability, and all bring a highly engaging presence to their performance, drawing on differing skills and perspective.  The effect is rich. There are moments of surprise - Ryan Rowland's heavy metal guitar riffs punctuating the story of his birth, and Damien Turbin's Olympian lap of honour in celebration of the son that he is; moments of edgy intensity, like Duncan Luke's instinctive self defence against taunts; moments of stillness, through Ben Wishart's quiet penmanship and Richard Sami's soft movements; and moments of poignancy like Kym Mackenzie’s experience of loss.

The live performance is spliced by large-scale video footage of actors’ mothers talking about their son.  This multimedia approach to the relationship is highly effective, with each actor appearing entirely unfazed by a 4 m high video image of his mother talking about his birth.

Each story in this performance has its own character, as unique as the relationship that every son has with his mother, and yet the stories work together to tell a collective tale, culminating in a final scene that tingles.

I felt grateful for the opportunity to experience these glimpses into the lives of these sons and their mothers.  It reminded me that a parent is often the fiercest campaigner for a person, there for the long haul, and whose commitment, whose stand, reflects the essence of parenthood. 

It also reminded me how boys grow into men, into a sense of their own identity.  In telling their stories, each paying homage to his mother, the actors also convey something strong about themselves and their voice in this world.
 

With performances through to 11 March 2012, you should go see this excellent production if you are a mother, or if you've ever had a mother.

WIN TICKETS

Purple Orange has three pairs of Sons and Mothers double passes* to give away. Email us at admin@juliafarr.org.au with your contact details.  Names go into a hat and we'll draw three winners at 4.30pm Friday 2 March (Adelaide time).  Read the conditions below.

*Prize is for the entrance fee only. for two persons.  Any other costs, including travel, are not part of the prize, and are therefore the prizewinners' responsibility.  By participating in this competition, you accept that JFA Purple Orange bears no liability for any other costs associated with use of the tickets, or for any costs associated with cancellation or postponement of performance, or for any other consequence arising from your use of the tickets.


Copyright Julia Farr Association Inc 2012; Adelaide, South Australia.

Santa, where's my ride?

Take part in our taxi survey - the link is at the end of this posting.

Folk tuning in to the South Australia media in the last few weeks will be aware of coverage on accessible taxis.  Once again stories emerged about people having to wait an age before their cab shows up, with Christmas again the number one hotspot where people have to join a waiting list to see if they can get to Christmas dinner with family and friends.

in response, South Australia Transport Services Minister Chloe Fox's office said there would be a few more accessible taxis available this Christmas compared to last, and that any one left on a waiting list will get their ride by ‘doubling up’, presumably with someone going roughly in the same direction.

This was followed up by an announcement that all available accessible taxis would be on duty on Christmas Day, together with accessible buses on all routes (though it wasn't clear from the announcement if this means every bus on every route will be accessible, or whether at least one bus on each route, at some point during the day, would be accessible), and four minibuses.

This is a helpful response to the concerns people have about Christmas Day this year, and I have little doubt that those in Government directly concerned with this issue will attempt, with every good intention, to reduce the risk of people having to miss out on Christmas festivities because there isn’t a spare access taxi.  However, these earnest efforts will not resolve matters properly, because the Christmas Day pressure is not the problem, merely the most extreme symptom of the problem.

The problem is straightforward - the taxi fleet in Adelaide is not accessible.  If it was, we wouldn’t have this issue on Christmas Day nor at other peak times (and there are peak times every business/school day).  There are over 1000 taxis licensed in the Adelaide metropolitan area.  Of these, 97 are licensed access taxis.  That’s less than 10%.  

The effect of this problem is simple.  Whereas a non-disabled passenger can use any one of the taxis in the fleet, including the access taxis, a person with mobility support needs cannot.  One can use 100%, the other can only use 10%.

If a flock of interstate visitors were stuck at Adelaide Airport all Christmas Day due to a lack of taxis there would be outrage at such slack treatment.  I imagine there would be a review, and measures taken.

Why should it be any different for people living with disability?

This unequal treatment of people is unacceptable.  Coincidentally I blogged on this a year ago (click here to read) and very little has changed.  The United Nations Convention on the Rights of Disabled Persons has Accessibility as one of its six core principles.  Accordingly, the Convention goes on to assert that parties (this includes Australia and by association its states and territories) undertake:

b) To take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities;

The current taxi arrangements in Adelaide (and, I assume, South Australia generally) are discriminatory.  Through ratifying the UN Convention our government has signed up to do something about it.  The periodic limited release of additional access taxi licenses will not resolve the underlying discrimination and therefore is not an adequate measure.  Nor is the suggestion that people ‘double-up’.  

If a city the size of London can achieve a fully accessible taxi fleet, then Adelaide, indeed any town or city in Australia, has absolutely no excuse.

Purple Orange has placed a survey online (you can click here to go to it) for people to give feedback on their experiences with taxis.  Please take the time to give us your feedback.  If the current system is fine and dandy, tell us that and we’ll pipe down.  But if it’s not, please share your story so that we can amplify the issues and seek a government commitment to a genuine solution.

Justice and Safeguards

This week has seen two stories emerge in the South Australia media relating to disability and justice.

One was about murder charges laid against a couple who are alleged to have intentionally neglected to death their adult daughter living with disability. The second story was about the dismissal of criminal charges against a bus driver accused of sexually assaulting two child passengers living with intellectual disability.

Both stories provoke concern about the safety of people living with disability, and invite the assertion 'something must be done', for example that the justice system be improved so that people living with disability get a fair go, or that police-checking be strengthened, or that mandatory reporting arrangements be introduced or improved, or that security cameras be introduced, or that there be stronger arrangements for professional intervention to reduce risk of 'within-family' assault or neglect.

While all such ideas are understandable, by themselves they will not have the critical impact that people might hope for. This is because we have to think beyond the strengthening of justice remedies, security arrangements and professional interventions.

We have to think about the underlying expectations that appear to drive how community sees its role in the lives of people living with disability. Who in this young woman's neighbourhood was asking about her wellbeing? This isn't a question merely about the availability and practice of professionals, or the involvement of official 'community visitors'. it is a question about a person's visibility in community life, and about neighbourly concern.

Our society has a longstanding history of providing disability support in a way that separates people from ordinary community life. In so doing, we inadvertently train the citizenry to believe that the welfare of people living with significant disability is someone else's concern, someone else's job. Yet we are all part of a species that has ancient traditions of hospitality and care, at least in part because of the interdependency we all experience; that's why we organise ourselves into communities in the first place.

And therein lies the irony. In the way we have organised formal responses to people's situations, we have diminished our instinctive capacity to be welcoming and hospitable.

We have to find ways to support our communities to reconnect with this instinctive capacity, otherwise these deeply troubling incidents will continue, regardless of the hoped-for attainment of well-tuned justice systems and professional nirvana.

One clear path we can take is to discontinue our unfortunate habit of spending public money on special, separate arrangements for people living with disability, be it a disability enterprise sheltered workshop, a special bus, a group home, or a special school.

In the context of our ancient traditions, these well-intentioned facilities seem to me artificial and, when you stop to think about it, odd.   And they do little to uphold and advance the inherent value of people living with disability as active, integrated members of community. They are ultimately counter-productive.

Rather, we need to orchestrate disability support in ways that connect people into community life, not separate them from it.  It may well be that for some people living with severe disability this will be a difficult endeavour, but it is an essential endeavour to achieve better natural safeguards in people's lives and to improve their life chances.

In addition, we need to hold properly accountable all the arenas of community life - schools, workplaces, public transportation, malls, and so on - for being authentically welcoming and engaging of all citizens.

It will take a concerted effort from all of us. We cannot solely rely on the introduction of the proposed National Disability Insurance Scheme, because by itself that scheme may not be successful in retraining community to exercise its ancient and instinctive capacity.  Also, the scheme may not successfully address a problem that many people living with disability and their families have, where as a result of their experiences of service recipiency, or service-waiting, they carry very low expectations of what may be possible in their lives.

Instead, it will be each of our personal and individual actions of welcome, assistance, solidarity and creativity - person by person, street by street, and neighbourhood by neighbourhood - that will deliver the true safeguards in people's lives.

Reality At Work

Add caption

Last week Purple Orange participated in an ABC television story about people living with disability moving into open employment (i.e. employment with mainstream employers). The story, which focused on some examples of success in mainstream work, was relatively brief, and our appearance more so. 

The ABC's interest in this topic prompted us to update our understanding of the world of employment. To place the ABC story into context, here is our story.

As highlighted in the recent Price Waterhouse Coopers (PwC) report Disability Expectations, people living with disability in Australia are 50% less likely than non-disabled people to find employment (with Australia ranked 21 of 27 OECD countries), and carry 2.7 times greater risk of poverty than non-disabled people (ranked last of 27 OECD countries).  45% of Australians living with disability are in poverty right now (double the OECD average).

These unsettling statistics suggest that there is much still to be done to support people living with disability to enter proper employment.  Many disability employment agencies around Australia are giving effort to get people into sustainable employment. This work is important because, just like other citizens, people living with disability have inherent value and potential, and therefore have a contribution to make to our economy; this can be made through ordinary workplaces for a fair wage.

While there are plenty of individual successes, the overall results are not encouraging. According to Australian government data to June this year, of the 145,867 people referred to Disability Employment Services only around 15% were making it into sustained employment (we understand this translates to holding on to a job for at least 26 weeks).  This means a massive 85% of people referred to these services (that's over 120,000 people) were not finding sustained employment.  

This must be so disappointing for the people concerned.  Also it must surely discourage employers who are involved. 

There are a number of possible explanations for the disappointing performance. It's not for me to speculate in this blog whether specific agencies are struggling in particular ways.  However, in general across disability support, we know there are a number of key areas where agencies can have issues. If we apply that to employment, these might include:

• Degree of insight to the person's character, strengths, capacity and aspirations;
• Degree of the agency's own imagination of what might be possible;
• Methods of searching for mainstream employment opportunities;
• The nature of the proposition marketed to potential employers;
• Whether the person arrives 'job-ready', or is trained on-the-job with the employer as collaborator;
• Quality of on-the-job capacity-building;
• Quality and extent of post-placement follow-up;
• Concerns about perceived impact on eligibility for disability related pensions.

It is really important that outcomes are improved.  Participation and opportunity are key expectations within the United Nations Convention on the Rights of Persons with Disabilities.  Good outcomes are a clear expectation within the National Disability Standards.  Also, when a person is in waged employment there are the obvious benefits for the person, in terms of having receiving a fair wage for meaningful, valued work.  importantly, there are also critical benefits for society, because the person is contributing to the Common Good, not just in terms of their work contribution, but also in terms of their financial contributions – the person is paying taxes, saving through superannuation, and paying GST when spending disposable income. This represents a genuine return on investment for society, and makes so much more sense than having people living with disability languishing in non-work day services or in nominal-pay sheltered employment mainly alongside other people living with disability.

If designed and implemented effectively, the National Disability Insurance Scheme and the reformed Disability Support Pension arrangements could really help.  The Productivity Commission estimates an extra 320,000 people living with disability could enter employment, and by 2050 produce an additional $31 billion to Australia's Gross Domestic Product (GDP).

Such predicted gains are impressive and inspiring.  However, their arrival cannot be assumed without a number of other challenges also being met. These include:

• how people living with disability are supported to imagine the possibility of an ordinary valued life, including fare paid work with a mainstream employer;
• how people are supported to access the right information to make an informed choice;
• how people are supported to access material resources that can increase the chances of sustained employment;
• how people are supported to build social capital in support of sustained employment;
• the nature of the relationship between disability employment services and the people they serve, so that the above elements are upheld and advance;
• how mainstream employers are supported to deepen their understanding of the potential of employees living with disability, as contributors to the employers social capital (through workforce diversity) and to the employers profitability (through productivity)
• how disability employment services develop their understanding of the relative costs and effectiveness of agency efforts so that they may evolve those practices that demonstrably help deliver sustained employment and discard those that don't (for example, we hear of an agency achieving a 75% success rate working with people living with significant disability, with job retention at 60% over five years.  If this is true, it is important to understand the practice underlying the success and to replicate it, so that a greater number of people living with disability may benefit).

For the sake of over 120,000 frustrated people, and counting, I hope the two lists of bullets in this blog posting provide a helpful framework for agencies and communities to reflect on current practice and future intent. 

 

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. 

Safeguards don't always

Photo by Sebastian Fissore http://www.sebafissore.com.ar/ accessed via http://www.sxc.hu/

This is the second of two posts on the topic of abuse and safeguards.

Safety and safeguards are rarely far from people's thoughts about supports for people who live with additional vulnerability.  Interest is heightened when dreadful things happen, be it at home, on the street, or in the arms of a service provider.  If the magnitude is sufficient, this can result in a jurisdiction putting formal arrangements in place to help protect people.

For example, as part of its Disability Act 2006 the Government of Victoria set up the Office of the Senior Practitioner to regulate the use of restrictive support practices so that people's rights are safeguarded. The Act also provided for a Community Visitors Program, where trained volunteers can inspect disability services without notice.

Also in 2006, the Government of Queensland established a Disability Services Act that included measures aimed at protecting people, including approval processes for service agencies and investigation arrangements.

In what was obviously a busy year for legislative action on safeguarding, 2006 saw the UK Government pass the Safeguarding Vulnerable Groups Act, as a response to something unspeakably evil, establishing the Independent Safeguarding Authority, whose role is to help ensure that unsuitable people are not unleashed on vulnerable people.   

In South Australia, there is currently a Bill before Parliament relating to Mandatory Reporting, designed to help ensure that anything approaching neglect, abuse or assault is quickly brought to the attention of the authorities who can then act to protect the person living with disability.

The above are several different examples of how jurisdictions can take formal steps to provide safeguards for people living with additional vulnerability.  Such measures are often taken as the king-hit (irony intended) response to people's concerns about vulnerability and safeguards, and are designed to give people confidence that matters are in hand.

Unfortunately, there are at least two problems with such approaches.  The first problem is that they are not necessarily successful at protecting people with the greatest vulnerability.  To illustrate this, I refer again to the UK, and the recent Panorama investigation (mentioned in the previous posting) that revealed abuse and assaults perpetrated by staff on residents living with disability, in a state-of-the-art, high-cost ‘specialist’ service supervised by registered professionals.  You can view the program in 4 parts here, but be warned that it includes scenes you may find deeply upsetting.

The investigation took place earlier this year. What is particularly depressing about the deplorable practice uncovered is that it took place despite the presence of the above-mentioned Independent Safeguarding Authority.  In short, the safeguarding authority didn't.

It gets worse. The UK also has the Care Quality Commission (CQC), whose role is to ensure that "people get better care".  This includes a a wide-ranging set of powers and duties, with the commitment that "if we think that people’s rights or safety are at risk, we will act quickly".  A senior staff member working at the service agency investigated by Panorama was so unsettled by the practices he saw that he contacted the CQC.  Unfortunately, the CQC failed its own commitment.  It did not act quickly, and in fact did not act at all, until Panorama shared their undercover research with several million people.

So what we have here is a situation where an approved service agency, working within a contemporary building and using professional staff, and designed to provide a specialist response to people with allegedly high needs, was responsible for a despicable catalogue of neglect, abuse and assault, and all this despite the presence of a range of formal legislative and regulatory safeguards.

The lesson from this is that formal safeguarding arrangements by themselves do not necessarily reduce the risk of vulnerable people being exploited.  

image by Banzai Creative

As a society it is of course important we continue exploring how we might best legislate and regulate to advance and uphold people's well being.  However, such measures are not a substitute for the work we all need to do to support people into ordinary valued lives.  This is because a good life is not achieved simply by reducing the chances of bad things happening.  If that is the main tactic, then that life will seem at best sterile and at worst empty.  Instead, the primary tactic must be how to increase the chances of good things happening in the person';s life, not just reducing the chances of bad things happening.

As mentioned in the previous posting, a starting point for this approach will be the deeply felt values about people living ordinary valued lives, and how this is then translated into expectations about how each citizen behaves, not just in terms of legislation, regulations, and specialist funding, but in terms of mainstream education, public transportation, buildings and spaces, ordinary employment, and neighbourhoods that are welcoming.

The better we support a person living with disability to take up their rightful place in the heart of our communities, the more likely it is that there will be natural safeguards present in that person's life - family, neighbours, acquaintances, friends, co-workers.  After all, these are sources of natural safeguards for any citizen, so why should it be any less so for a citizen living with disability.

To Protect and Serve?

image by Sanja Gjenero, accessed via http://www.sxc.hu

Recent media coverage on issues of justice and mistreatment triggered the next two blog postings.  This first posting, below, was published earlier this week on The Punch and on the ABC's Ramp Up.  A second posting, looking at measures such as regulators and mandatory reporting, will be out soon.

The Adelaide Advertiser story (Monday 27 June 2011, ‘Justice Disabled’) highlighted the apparent difficulties in securing convictions where a person living with intellectual disability has been the victim of an alleged sexual assault.

Some alleged assaults take place where people are receiving care.  This warrants closer examination, given the reasonable expectation that human services are meant to reduce risk of harm, not add to it.  Also, the greater the degree of disability a person lives with, the more likely it is the person will be living in a formal service arrangement, sharing with other persons living with similar degrees of disability and served by staff.

These arrangements typically involve people served in group settings, away from the view of the wider community.  To the casual observer, such arrangements might appear competent at safeguarding people’s wellbeing, with features like individual private bedrooms, qualified staff , and supervision by registered professionals.  The arrangements might also include an activities program, active monitoring, and guidelines that permit liberty-reducing practices, such as restraint or seclusion, as a last resort only. 

However, such arrangements do not guarantee protection from neglect, abuse or assault.  In fact, they can achieve the opposite.  When people are required to live together for no other reason than their degree of disability (or other disadvantage), it creates a situation where people are living on top of each other with very little to do.  It is not unknown for this to sometimes result in assaults between residents, a tragic situation that brings its own complexity in justice and yet could be largely avoided if we stopped herding people like cattle into group services.

image by Konrado Fedorczyko, accessed via http://www.sxc.hu

Worse, these group arrangements render the person vulnerable to the attitudes and outlook of staff, who have the capacity to exercise great control over the lives of those they are meant to serve.  The extent to which this can go badly wrong was illustrated in a UK Panorama investigation that revealed abuse and assaults perpetrated by staff on residents living with disability, in a state-of-the-art, high-cost ‘specialist’ service supervised by registered professionals (to view, go to http://www.youtube.com/watch?v=8yuPvUHsx1Y&amp).

We cannot safely assume such practices are any less discoverable in Australia.  The less  we think about people living with disability as individual human beings, the less personalised will be the support arrangements, separating people physically and culturally from community life.  This can leave at least some people with no one in their lives other than paid staff and other people living with disability.   

That is wrong.

If we really want to tackle the problem of unprosecuted assaults on people living with disability, we must first discontinue the practice of grouping people living with disability on the basis of service convenience, be this a group home, a sheltered workshop or a special education class, and instead build personalised supports that bring people fully and visibly into community life. 

More than this, If we truly value diversity and shared wellbeing (which is the whole point of communities), we each need to take up our responsibility to welcome people living with disability fully into our neighbourhoods and our workplaces.  This is not an issue of rights but something more important - values.

Turning now to problems of justice, the main reason reported in the Advertiser is that the alleged victim, because of disability, might be an unreliable witness.  So what?  Witness testimony from anyone can be an unreliable source of evidence in criminal proceedings, and there are other sources of evidence that can assist prosecution.  There is no reason why an assault case involving a person living with severe disability, whose capacity to recall might be compromised, should be treated any differently from a case involving a frail older person, a child, or a victim who was incapacitated by alcohol or other substances at the time of the alleged offence.

Image by michaelaw, accessed via http://www.sxc.hu

A second issue is consent, whether the victim was a willing participant at the time of the alleged assault and changed their mind subsequently.  Many adults, from all walks of life, may have comparable stories of hindsight-driven regret, especially if the experience had turned out to be embarrassing, deeply disappointing, or even frightening.  Just like anyone else, a person living with disability is not immune to the possibility of such experience.  However, it would be a great mistake for us to assume that this is more likely to have happened simply because the person happened to live with disability. A far more important move, especially where the person is more vulnerable in their decision-making, would be to assure the availability to the person of good, accessible information and supports about consent and related matters.  

The bottom line?  Let‘s not further disable people by placing them in ‘support arrangements’ that do more harm than good.  Instead, let’s uphold the individual person’s right to an ordinary valued life, and assure the presence of safeguards so we do not fail people when the going gets tough.

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.