Tuesday, November 30, 2010

Australia's Apart-hood

This week in South Australia the media has reported the difficulties that many South Australians living with disability encounter when trying to book an accessible taxi, especially at peak times such as Christmas.  The debate has now extended to include problems of finding enough accessible car parking.

At JFA we support the concerns that have been raised in the media by people living with disability, whose experience has all the hallmarks of apartheid, however unintended.  When apartheid was in place in South Africa, many people and governments around the world condemned it and contributed to the forces for change. This was because specific members of the community – black people - were not being given the same opportunities as other citizens. Why should we not react the same way to the current experiences of Australians living with disability?

Our view is that there should be a determined, systematic effort to ensure that all taxis are accessible, because everyone benefits from universal access.    Of course,this goes way beyond taxis and other public transport like buses.  It applies to every community building and open space that is there for the public.  It is not as hard as people might think to make our communities accessible  It starts with each of us being determined to see it happen.

For your interest, here follows an updated version of the article I wrote in the April 2009 edition of national disability magazine Link.

Australia's Aparthood (revisited)

I have cherished the ideal of a democratic and free society in which all persons live together in harmony and with equal opportunities. It is an ideal which I hope to live for and to achieve.
Hard to dispute, these words were spoken 48 years ago by Nelson Mandela responding to charges of treason and sabotage on the first day of his trial in South Africa.  Mandela was clear that he would not tolerate white domination, any more than he would tolerate black domination.  In pursuit of his ideal, Nelson Mandela spent the next 27 years in prison - truly an exercise in patience and determination.  

In the four years after his release in 1990, apartheid was dismantled.  These historic moments heralded the end of the blatant discrimination led by the South African government against black people.  The world breathed a sigh of relief as apartheid was finally vanquished.
As it is commonly understood, apartheid was a system of racial segregation that was enforced by the South African government shortly after the end of the second world war until the mid-1990s.  It is no accident that the word apartheid contains the word ‘apart’.  It is a Dutch/Afrikaans word meaning separation.  Translated literally into English, it means ‘apart-hood’.   

Much of the world outside South Africa recognised this for what it was: outrageous, unjustified discrimination and separation of people based on a particular characteristic (their skin colour). Its long overdue demise was universally celebrated. But is apartheid – aparthood –actually consigned to history?  

Consider the experience of people living with disability in Australia. Depending on the degree of a person’s support needs, he or she might have little choice other than to live in certain places, such as group homes with other people also living with disability.  Many children and young people living with disability may be directed towards a different, separate education, rather than having the genuine option of attending their local neighbourhood school.  People living with disability are under-represented in the Australian workplace, and many work in separate, ‘sheltered’ workplaces where the majority of their workmates are also people living with disability.  

In Australia, it is harder for people with disability to use public transport.  For example, in South Australia, there are well over a thousand taxis but less than 100 of these are accessible to people using wheelchairs. I can imagine the uproar if South Australia set aside a small number of ‘special’ taxis for women, or for black people, and they weren’t able to access the others.
Often people using wheelchairs are treated differently, and often shabbily, when they want to travel on buses, trains and planes. Many community venues are inaccessible to people living with disability, which denies them the chance to participate in recreation, education and other opportunities.  People living with disability have to use separate restrooms – if they’re lucky enough to find one that is actually accessible. 

We need to recognise that these arrangements have a lot in common with the practice of apartheid in South Africa.  Here in Australia, there is a group of people who, because of a particular characteristic (disability), are directed to special arrangements that tend to separate them from the rest of society, in housing, education, work, transport; and recreation. . As a matter of course, however well-intentioned, people living with disability have been set apart from the rest of the community. Aparthood is apartheid.

For many people living with disability, this enforced separateness is a prison where the bars are created by the negative attitudes of others and by inaccessible communities, and where each day's activities are about as meaningful as a prisoner breaking rocks. 
Aparthood was unacceptable, abominable and inhuman in South Africa. Why should it be regarded any less so here?  

At the moment, the Australian Government is putting the finishing touches to a national disability strategy, and its Productivity Commission is considering the future of disability support arrangements, as is the South Australia Social Inclusion Board.  . It is up to all of us to do what we can to ensure that the completed strategies genuinely address the underlying wrongness of our current disability support arrangements, rather than trying to patch-fix the existing system.

Key to this is the insistence that people living with disability enjoy equal access of opportunity, free from discrimination. It is the right thing to do. As a community we need to take action collectively.  Otherwise, like Nelson Mandela after his conviction in 1964, the Australian disability community will be breaking rocks in prison for a very long time.

Tuesday, November 23, 2010

imagine getting real

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thursday, October 7, 2010

Entertainment Value

While overseas recently I got the chance to watch a couple of bands at a gig in Glasgow.  First up were TheSuperheroes, whose members include both disabled and non-disabled people.  All band members played instruments, and these guys rocked.  They are still building their songlist, so their set was frustratingly brief but very impressive.

They were followed by Mixit, an ensemble of singers who bill themselves as the world’s first inclusive pop group.  Mixit has developed a more extensive set of songs, backed up by some well-choreographed dance moves.

Both acts were highly entertaining, and reflected a good measure of accomplishment for all involved.

The troubling part for me was that this gig was played to an audience largely comprising people living with disability and their supporters.   

As such, it felt like another exercise in separateness and invisibility.  That said, all I had was a single glimpse into the lives of these two acts - one gig in one venue.  

So, mindful that I haven’t seen their performances elsewhere, here’s how I hope things are.  I hope that Mixit and TheSuperheroes each have a band manager who is seeking out gigs for them at mainstream venues, in front of mainstream audiences, supporting (or being supported by) mainstream acts.   
I hope that both acts build a loyal mainstream following as a result of their musicianship rather than out of any sense of charity.  I hope that each band member has an authentic valued role to play in the band’s overall performance, so that each person’s participation does not come across as tokenistic or ‘pretend’. 

Mixit have cut a DVD, I watched it for the first time today, and I really enjoyed it, for a number of reasons.  First, the production values are good.  By this I mean that the DVD looks and feels very professional, providing a documentary-style insight into the lives and songs of authentic performers.  Second, the personality of the band members really comes across in the DVD, and the way the DVD has been editied accentuates the valued role of each band member.  Third, there has been thoughtful attention to the band’s overall look (check out their stage gear) and to the choreography.  Fourth, these guys have certainly got out and about, because part of their material was shot in France. Finally, I enjoyed the DVD becuase it is highly entertaining, which after all is the point of DVDs.

I should mention as an aside here that in the DVD, one of the band members notes how he has been able to use some of his Individualised Funding to provide him with personal support while he is on tour.  How cool that is.

I encourage you to go visit Mixit’s website at and you can hear TheSuperheroes perform the really quite impressive track Milky Way at

Wednesday, October 6, 2010

Imagine if, Imagine how, Imagine when

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

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

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

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

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

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

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

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

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

Monday, September 27, 2010

Cultural exchange about cultural change

Continuing the In Control International theme of my previous posting, the two-day international meeting covered topics that are relevant across a range of cultures. Amongst other things, the meeting covered:

  • cultural change (in terms of service planners, agency staff and the broader community)
  • planning and renewal
  • safeguards
  • the connection between rights and responsibilities in people's lives
  • the changing role of service agencies
  • the challenges of collaboration.
I can easily imagine that these topics will be of intense interest to people living with disability, families, service agency staff, and government staff. If you would like more information, or want to hear more about any of these topics on this blog, then do get in touch, either via the comments section of this blog or via the email address on our website.

For this post I'm focusing on the first one - culture change. The word 'culture' is used in a number of ways. It can be something you grow in a petri dish especially if you haven't cleaned under the kitchen sink in a while. It can be used to describe ethnicity, for example when you visit a different country or community and encounter people who have a different shared experience to you. Or it can be used to describe the arts, where apparently you are getting culture when you watch ballet.

It can also be used to describe the main features of people's attitudes and behaviours in an organisation or system. This version of 'culture' covers the shared ideas about how work gets done It's about "the way we do things around here". From the international conversation it was clear to me that culture change is an important consideration for every country represented at the meeting, and why wouldn't it be?  People live in every country, and people are complicated, especially when they organise themselves into groups.  This is because rules and guidelines have to be figured out so that everyone knows what to do.  Usually those rules and guidelines are designed to reflect the values and attitudes and goals that brought about the group enterprise in the first place. 

Unfortunately, unless people are particularly vigilant, this connection between values, attitudes and goals and the associated rules and guidelines can, over time, become less clear.  People follow the rules and guidelines without checking back why they were installed in the first place, and changes happen to the rules and guidelines without checking back to see if such changes make sense in terms of the original goals and values.  this often happens with the best of intentions, for example when new opportunities come along.

Eventually, the prevailing rules and guidelines that are driving people's behaviour have very little connection with the original values, attitudes and goals, and become simply "the way we do things around here".  Just like the proverbial dog that gets wagged by its tail, the rules and guidelines install a new set of values, that people may not have chosen in the first place had they known it would come to this.

Across all kinds of human endeavour, many organisations and systems have this problem.  This includes organisations and systems that support vulnerable people.  For example, I have encountered a number of organisations that began from a value base of wanting to see vulnerable people have a fairer go at what life has to offer.  Move forward a number of years and we find those same organisations providing services that in fact have largely achieved the opposite, by separating people from the wider community, rendering them invisible and much more vulnerable to neglect and abuse.  This is happening today, as we speak, probably at an organisation near where you live.

Yet, despite the increasing signals that we are failing vulnerable people in our communities, we seem to struggle to achieve widespread positive change.  Why?  Culture.   Within our support systems for vulnerable people, the majority of behaviours uphold the status quo, such is the strength of 'the way we do things around here'.  

If we are to achieve genuine helpful changes in the lives of vulnerable people, then paradigms like Individualised funding, National Disability Insurance, Person-Centred Planning, Active Support, and a multitude of others, will not have the impact we might hope for, because by themselves they won't necessarily change culture. 

Culture is changed when enough people make it known that 'the way we do things around here' is not good enough.  Culture also changes when those people in positions of power, responsibility and leadership, have the courage to recognise that the systems they administer are failing people.

These people include the leaders within service agencies, and the leaders within governments, and the leaders within communities.  Such people can play a pivotal role in changing culture.

This is the essence of leadership.  If we are agreed that vulnerable people have the right to choice and control in their lives, to be active contributors to their communities, to grow into rich, valued lives, then every leader in every support system needs to guide their resources towards this, to 'change the way we do things around here'.  They need to do this today and tomorrow and the next day, and so on until it's done.

Thursday, September 23, 2010

A hundred leaders

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

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

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

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

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

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

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

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

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

Thursday, September 9, 2010

2010 Election Carnival

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

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

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

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

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

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

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

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

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

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

Monday, August 9, 2010

2010 Election Promises Part 3

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

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

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

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

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

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

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

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

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

Friday, August 6, 2010

2010 Election Promises Part 2

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

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

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

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

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

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

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

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

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

Tuesday, August 3, 2010

2010 Election Promises Part 1

Public policy conversations about disability are many and varied at the moment, and perhaps like me, you are finding it a challenge to keep up.  The Productivity Commission is continuing its work regarding the future arrangements for disability support, and hopefully you have had a chance to make your views known.  Meanwhile the Labor government recently released its draft National Disability Strategy so there is a fair bit to digest there.  The government is working on its draft report to the United Nations regarding Australia’s progress against the Convention on the Rights of Disabled Persons (another opportunity to make your views known), and in South Australia the Social Inclusion Board has released a discussion paper regarding the future of local disability support (and another opportunity to make your views known).

I will blog some thoughts on the above as soon as I can, but right now, in case you haven’t noticed, the country is in election mode, so I want to explore some of the announcements by the major parties, because at least some of them were easy to miss in the media.  I found a bunch for the Australian Labor Party but so far only 1 from the Liberal Party of Australia.  Let me know if you know of any others that I don't cover in this and the next blog.

On 17 July Labor announced an initiative involving the major cinema chains delivering more accessible cinema experiences to people living with disability.  Click here for the announcement, which is at the FaHCSIA website so i guess it counts as “already going to happen” as opposed to “this is what we’ll do if we get in”. 
It includes up to $470,000 over four years to the four major cinema chains to build technical capacity,  fast tracking audio description and captioning, together with support for the Accessible Cinemas Advisory Group, which includes a number of disability voices.

This initiative is good news, especially for people like my Mum who is blind, and for whom the prospect of an audio description services that mean she can go out to the movies with the rest of us.

On the 24 July, Labor announced some measures to support people living with disability into community life.  Click here for the announcement.  These measures included: a $5m pool to match local money (up to $100,000 per grant) so that local councils can improve public amenities such as restrooms, town halls etc, and $1m for improving access to public library materials by people with particular types of disability.   

These seem useful and sensible in terms of building accessibility of our communities.  The question of course is whether the funding is enough.  I like the expectation that local councils need to match the funding as this helps lock in local commitment.  I hope that the grant information going to local councils also includes clear signals of local councils’ obligations under the UN Convention, among other things.  Otherwise, the need to find local matched funds might put some local councils off if they are not sufficiently aware of the imperative for good access.

Now might be a good time to write to your local council to nominate the access improvement you would most like to see in your local community.

In the same breath, Labor announced a $3m leadership program for people living with disability, including access to mentors.  Again, on the face of it I like this idea.  The main considerations for me are (a) whether this program will genuinely deliver increased leadership capacity because that’s why the participants are there, and (b) whether it will be matched by government effort  to ensure it is playing its part in creating formal leadership opportunities for people. There are plenty of opportunities coming up within government.  Two obvious examples are the overseeing of the National Disability Strategy implementation, and the governing of any National Disability Insurance Scheme.  Both of these absolutely positively definitely must have people living with disability in leadership roles.

Labor also announced $500k for an 'attitudes' disability website.  In principle I like this because information is important.  In terms of the cost, I would be very interested to learn more about how they see the $500,000 being spent, so that it has the best chance of getting the attention of its target audience.  Essentially, this initiative is about raising the capacity of our communities to be welcoming and inclusive of people living with disability.  A well-orchestrated public awareness website can make a contribution to this, but is unlikely by itself to result in a critical mass of change. It needs to happen alongside other elements that help grow community capacity.  Much of this happens 'one person at a time' because if we are all committed to the notion of personalised supports then that also implies a highly personalised journey into community life. In which case, I hope that the incoming government, with whatever political persuasion they claim, make good investment into personalised supports including connecting into community life.

By the way, on 28 July, while opening a new accommodation service in Canberra for young people living with disability, Parliamentary Secretary Bill Shorten said “the benefits of age-appropriate and community-based accommodation and support are beyond question”.  I'm pleased to hear that, because for people to get a life in community they need to be living in it.  Bill Shorten’s comments offer a modicum of reassurance to those of us who are concerned about what happens to people living in institutional accommodation services.  Click here for the announcement.

Next instalment of this blog topic 2010 Election Promises will arrive shortly.

Thursday, July 15, 2010

Flying the Standard Part Three: restriction vs safeguarding

This blog posting is the third instalment relating to the current review in Australia of the National Standards for Disability Services.  This posting looks at a second big example of problematic language within the current Standards - the phrase ‘least restrictive way’. 
The Standards say that:
Each person with a disability receives a service which is designed to meet...his or her individual needs and personal goals.
How good does that sound?  Pretty good actually. The only problem is that I've taken a phrase out and replaced it with some dots.  Let's now put that phrase back in, and look at what the Standards actually say:

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

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

I can imagine some readers of this blog wishing to remind me that there are people living with disability who live in very dramatic circumstances where there is a greater risk of harm to themselves or others, and that the other people in that person's life, or service agencies, need to act decisively to manage the situation.  I understand that pressure.  But if our main response to such situations is to apply restriction to manage the problem, then we may indeed be reducing the immediate risk of self-harm, harm to others, material damage etc, but are we actually doing anything to support that person to move on from such distressing circumstances?  I have encountered and worked with people whose circumstances have resulted in their being restricted for years, without ever being given an authentic, sustained opportunity to move on.
In this regard, the current wording of the Standards has not helped, because the Standards have endorsed the possibility of restriction in the first place.

We have to move away from such language.  

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

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

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

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

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

Each person living with disability is supported, including the thoughtful use of safeguards where these are needed, to move towards a life of choice and citizenhood.
What do you think? Can you do better?  Post a comment with your own suggestions.  If you feel strongly about the importance of safeguarding rather than restriction, do make your views known because the Standards are being reviewed by government right now.  You have until 18 July, so click here to go to the government website.

Tuesday, July 6, 2010

Flying the Standard Part Two: being clear on the context

This is the second instalment looking at the review of the National Standards for Disability Services.  The first instalment asserted that the updated Standards (given that the current ones have failed) be anchored upon the goal of citizenhood.  This blog posting (the second of at least three instalments) looks at the language of the Standards. 
For as long as I can remember there has been a debate about the words that are used to describe issues relating to disability.  We have seen some helpful developments, such as a move away from stark terminology like ‘handicap’ and ‘retardation’.  Meanwhile, we still encounter the views of those who might argue that there is far too much political correctness (often shortened to ‘PC’) and that we should just call it like it is. 
However, it is through such accusations of being too ‘PC’ that people can trivialise what is in fact an issue fundamental to the way we support people who are particularly vulnerable.  This is because our language is the main way we transact our ideas about the world in which we live, it’s the main way we describe concepts.  If our choice of words is poor, then people’s understanding of, and response to, the concept will out of focus.
This is exactly what has happened in the language of the current National Standards for Disability Services.  The remainder of this blog posting looks at a big example of this, and the third instalment in this series on the Standards looks at another big example.
First, let’s look at this word service.  It’s right there in the title of the Standards, and its use provides the context for the Standards.  As the title suggests, the Standards relate to service.
I’m not a big fan of the use of the word service because it is an agency-centric word.  What I mean by this is that the word service focuses attention on the service agency because it is the agency that is delivering the service.  It conveys the impression that disability services are an end in themselves, and that the only important things in the life of a person living with disability are the formal services that the person receives.  If we persist in using the word ‘service’ in our national standards, this means we persist in seeing people living with disability as service recipients only, where the sum of their life is measured in terms of access to formal services.
By the way, I know that many people will be reading this and thinking, “hang on, service is important, it’s just that we‘re not getting enough (or any) service”.  I understand that view, and I’m not saying that getting a decent service isn’t important.  I’m saying that a person should be viewed in terms of the life they wish to lead, not by their dependency on formal services.  As such, the Standards should be setting the mark for how people are supported to move towards a life of choice and inclusion, not how agencies deliver formal services.
Unfortunately this is what the Standards create by using the word service, and this in turn is supplemented by the use of the word consumer throughout the Standards document, language that reinforces the idea that service, and its consumption, is the only important thing for a person living with disability.
As an alternative, I prefer the term support.  This is a much better word because it is person-centric.  What I mean by this is that when we support a person, it is with a view to that person moving towards something that is personally important.  And the only way we can properly support a person is by getting to know that person and what it is the person wishes to move towards in her/his life.  In this way, the person’s life and the person’s goals (instead of the work of the service agency) become the context for the support.
This distinction between service and support may seem to some people to be a minor distinction, but the words we choose can and do set the scene for an entire service system, so it’s important to get those words right.  If we only ever think about formal services in our language, then that becomes the context for the way we assist people, and this in turn sets the context for people’s lives.  Whereas if we talk about support, then that covers a range of ways that people might be assisted into a good life, including and beyond formal services.
So how about we change the name of the National Standards for Disability Services, to something like National Standards for Supporting People Living with Disability?  Such language would perhaps allow us to get a little closer to ensuring that service agencies are offering authentic support to move people towards a richer life.
Next instalment – the standards and restriction.