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.

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'.

Alliance and Momentum

The National Disability & Carers Alliance is currently holding its two-day conference in Melbourne. The Alliance, comprising service agency peak body National Disability Services, Carers Australia and the Australian Federation of Disability Organisations (AFDO), is running this event to further the conversation about the proposed National Disability Insurance Scheme.

With an attendance reported to be in excess of 1000, I had imagined this might have the look and feel of a rally, like an American political convention with people wearing colourful hats and waving flags. Indeed, all the speakers appeared to give enthusiastic support for the proposed national scheme, beginning with assistant Treasurer Bill Shorten and continuing with productivity commission Patricia Scott, Parliamentary Secretary Jan McLucas, opposition spokesperson Mitch Fifield, Greens senator elect Richard Di Natale, and other enthusiastic speakers, including impressive voices from the advocacy sector such as Rosemary Crossley, Sally Richards, Damian Griffis and Stella Young.

However, it wasn't a procession of uncomplicated enthusiasm; there were plenty of people at the conference bearing the battle scars of previous policy discussions that did not deliver true and helpful change. Such scepticism is important because, although the Productivity Commission’s draft report is very encouraging, it is only a report, and the fact of its existence does not give certainty that it will become reality. Many architects have poured their hearts and souls into designs for buildings that never got built.

What is important is the message from the Productivity Commission, through Patricia Scott, that disability support should be regarded as a core responsibility of Government. This is a huge point and goes to the heart of the issue; if we believe that people living with disability have inherent value as human beings, and therefore should have access to the same opportunities as fellow citizens, then it is the core business of the government to ensure this is advanced and upheld.

Similarly, Patricia Scott noted that in the Productivity Commission's proposed model the individual person living with disability is front and centre. This is also a huge point as it is the definitive first step in formally dismantling a system of human services that, despite good intentions, has systematically depersonalised and commodified the people who come to it for assistance.

While there will continue to be a diversity of views about aspects of the proposed scheme, the nature of choice, perspectives on market forces and a host of other elements that might attract passionate debate, here is an opportunity for people in the disability community to find their common voice, for in that common voice lies perhaps the greatest hope for helpful change.

This was highlighted by Bill Shorten who declared that since his move to the portfolio of Assistant Treasurer he has lost none of his passion and anger for the issues he learned about when he was Parliamentary Secretary for disability. I am aware that, along with 999 other delegates, I missed the opportunity to ask Mr Shorten what specifically he might do in his Treasury role to help the Productivity Commission's recommendations come to fruition. Just like Charlie in the chocolate factory, Bill in the Treasury could, should, help good things to emerge.

Perhaps in anticipation of such expectations, Bill Shorten put out a three-word challenge to the delegates; discipline, perseverance and unity. The Productivity Commission completes its work in July but this is no guarantee that its recommendations will be taken up. If I read Bill Shorten’s challenge correctly, people in the disability community need to focus on the common good will that we might all see in a National Disability Insurance Scheme. Like a successful alliance during times of struggle, the focus is on the shared bigger picture, a common goal.

In which case, the most important thing right now is to build momentum, to give the big picture - a national scheme of individual funding entitlement - a life beyond the Productivity Commission. To paraphrase the plea from co-convenor Bruce Bonyhady, tell your friends. And tell them to tell theirs.

Commissioning Productive Citizens: an imaginary conversation

First, apologies for the long lay-off from the blog, which was caused by a perfect storm of annual leave, crushing deadlines and miscellaneous turbulence.  Normal service has been resumed.

The Productivity Commission released its draft report here on the future of disability care and support. The full report is two volumes of around 800 pages and reading it is a formidable task. Even the short version has novella dimensions. However, we might be encouraged by such density if it suggests there has been much sincere thinking. After all, this is a once-in-a-generation opportunity to change the way that our society supports people living with disability.

Since its release at the end of February, the draft report has excited a number of conversations, and people have the opportunity to make formal written comments to the Productivity Commission here by 30 April 2011. In addition people can have their say at the series of public hearings that the productivity commission is undertaking in the main metropolitan areas. These are happening now - click here for details.

It can be hard to know where to start in trying to unpack such a large report. One helpful way is to attempt to describe the report in 15 seconds, as though being interviewed on the street by a reporter. In which case, I would use my 15 seconds to make two points: first, the draft report acknowledges that disability support funding in Australia is profoundly inadequate and doubling-up the funding by $6 billion is a good start; and second, the report proposes a national scheme of entitlement where eligible people living with disability get individualised funding in line with their support needs. This is a very good thing.

If the imaginary reporter found my response sufficiently engaging and awarded me a bonus 45 seconds to talk about some of the main features, I would say the draft report appears to assert the scheme would operate in the context of people living good lives, as valued members of the community and as active participants in the economy, with expectations that mainstream services such as education, health, and transport would be routinely, properly, inclusive.  I would enthuse that support funding would be assessed not just on each person’s present situation but also on the future, with a focus on the person’s strengths, capacity, and vision.

I would also note the draft report says eligible people could receive their support funding in one of three main ways: as a direct payment (“cashed out”), or via a third-party brokerage agency, or via a direct relationship with their nominated support agency. All three options are typical features within the methodologies of Individualised (self directed) Funding operating elsewhere.

So in just one minute, it is possible to identify the most thrilling elements of the draft report: entitlement-based funding, designed to assist people into ordinary valued lives, and personalised via Individualised (self-directed) Funding.

At this point, my imaginary reporter, on the hunt for a ripper sound bite, might ask me what is wrong with the draft report, and to take as much time as I want, because grumpy sound bites are particularly entertaining. I would kick off with the complicated issue of whether people should pay a contribution to their disability support. In the draft report people will not be required to make an ongoing contribution to their own disability support, at least not until they reach the age of 65. This is because people accessing aged care funding are typically over the age of 65, and they are assessed for co-contribution.

I'm not entirely convinced there need be a separate funding mechanism for older people because, if you stop to think about it, the support issues for older people and those for people living with disability are similar; for example, assistance with daily tasks, access to equipment and adaptations, community transport, support to remain connected in relationships,and support to maintain participation in (and contribution to) community life. I think it might be better to have a single funding support mechanism to assist people, regardless of the cause of their circumstances.

I would note to my imaginary reporter that the name National Disability Insurance Scheme (NDIS) is a problem.  The word insurance is not helpful , and I've said so before here. Most people's understanding of insurance is an arrangement where you pay a premium to cover the risk of something happening in the future, so that you receive assistance if it does. However the proposed NDIS will cater for people who already have their disability. Indeed, the people who will be excluded from the National disability Insurance Scheme will be those people whose disability has resulted from an insured event such as a road traffic accident, who instead will be directed to the proposed National Injury Insurance Scheme (NIIS). This parallel scheme is presumably deemed to be necessary because the states and territories have differing approaches for providing funding support for people injured in road traffic accidents etc. The Productivity Commission's draft report says that the states and territories would need to work together to link their various injury insurance arrangements into a national scheme. It will be interesting to see how that plays out in reality, and it will be particularly important that the NDIS and the NIIS have good interconnectivity so there is common best practice.  Otherwise we will create two classes of citizenhood within the disability community.

The draft report envisages the establishment of a new independent agency to run this the National Disability Insurance Scheme. I know there have been some concerns voiced about this and how it might be a vehicle for the perpetuation of unhelpful bureaucracy. However, to be fair to the Productivity Commission, I am not yet clear on what the better alternative might be.

Someone somewhere has to determine the mathematical model that underpins the generation and distribution of funds for the scheme. Someone somewhere has to determine the visionary and strategic parameters for the scheme.  Someone somewhere has to determine the operational policies and procedures that will help ensure that the scheme reflects best known practice in personalised funding and supports. Someone somewhere will need to determine and oversee how people apply for funding support. Someone somewhere will need to determine if the overall scheme is operating as it should be and the extent to which it is making a positive difference in people's lives. 

The alternative to a stand-alone new agency would be an existing federal government department, such as FaHCSIA, or federal government agency, such as Centrelink, or through a dispersed arrangement involving state and territory bodies. Each of these alternatives has its own problems. The advantage of a new stand-alone agency is that the agency can be calibrated, and the people within it recruited, to establish the culture best-suited to assisting people living with disability into ordinary valued lives.

In which case, the problem that I have is not with the idea of a new agency, but with its governance arrangements. The draft report envisages that the new agency will be governed by a board comprising people with expertise in insurance, finance, management etc. Unfortunately there is no mention of people having a lived experience of disability. While the draft report talks of a separate advisory panel where the perspectives of people living with disability, together with other stakeholders, can be channelled through to the board of the National disability Insurance Agency, this will not be good enough to ensure that the agency operates in a way that best delivers an authentic impact on people's lives. The board needs to include members who have a lived experience of disability.

If anything, the problem I have is with the proposed agency's governance arrangements. The draft report envisages the new agency be governed by a board comprising people with expertise in insurance, finance, management etc.  These are all sensible skill sets.  Unfortunately, it is an incomplete list because there is no mention of board member expertise in the lived experience of disability. While the draft report talks of a separate advisory council where the perspectives of people living with disability, together with other stakeholders, can be channelled through to the agency's board, this will not be good enough to ensure that the agency does the right thing by the disability community.  The board itself needs to include members who have a lived experience of disability.

At this point my imaginary reporter is probably interrupting me because I have not delivered the grumpy-and-entertaining sound bite, and is demanding that I sum up in less than 10 seconds the main problem with the draft report.

I would quote Wilagan's Fact, which states:

A good idea is at its most vulnerable during implementation.

In other words, the devil will be in the detail.  Have your say, leave nothing to chance.

Vale - Suzanne Carman

I've been away from work these past few weeks and will be away for a little longer so this blog has been quiet.  However I am moved to write something today to honour the memory of Suzanne Carman, who passed away on 30 December.

Coming away from Suzanne's funeral today, I suspect I was the person at the funeral service who knew Suzanne the least.  Our connections were limited to the several meetings we had together, with Suzanne in her role as Executive Director of the South Australian state government's Office of Disability and Client Services (ODACS).

As a result of these connections the Suzanne Carman that I knew was the public servant who was in charge of disability policy and procurement.  I assessed Suzanne's ODACS contributions through my own world view, without investing sufficiently to know more about Suzanne's history and motivations.

It is indeed a very dangerous thing to make assumptions about people based on limited information, for today I learned so much more about Suzanne's life.

For example, I didn't know Suzanne was from Cairns.  I didn't know that she had a fine musical ear and talent.  I didn't know about her faith.  I didn't know that as a young adult she had deferred her studies to give service to the community.  I didn't know about the remarkable range of public service roles she had undertaken in her career, clearly driven by the desire to make a contribution.  I didn't know she had become a grandmother.

I only wish I had discovered these things while Suzanne was alive.

From the celebrant's words at the service today, it is clear to me that Suzanne wanted to leave a message of love and acceptance.  For me, these values lie at the heart of social inclusion and in advocating for better lives for people with greater vulnerability.   

But what I also think I have learned, or re-learned, today is that the same values need to apply in all such dealings, with those whom we seek to influence and with those who have different histories and perspectives. 

Thank you, Suzanne, and I wish I had taken the time to get to know you better.

Rest well.