An important day needs important commitments

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

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

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

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

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

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

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

for a copy of the plan, click here.

 

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

 

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

 

 

Will the earth move?

image by  'Leagun' www.sxc.hu

As the disability community watches and waits for the design and implementation of a National Disability Insurance Scheme, opposition leader Tony Abbott did no one any favours when he opined last month that the proposed scheme was an aspirational goal that should only be realised when the Australian economy was in strong surplus.

This brought an understandable reaction from many people within the disability community, and also more recently from members of the Liberal Party’s Parliamentary caucus.

Notwithstanding such pushback, there appears to be increased fretting in political circles about the estimated funding shortfall for the scheme, which rose from $6 billion to over $8 billion as a result of the recent Fair Work Australia ruling on pay equity for staff in the social and community services sector.  

This means the national disability debate could become framed by the timing of the Australian economy achieving surplus, and how aggressive each party’s first budget will be to deliver this surplus should they win government in 2013. 

It is wrong to place increased disability support funding in the context of a surplus economy. Increased funding is intended to advance people's reasonable expectations of ordinary valued life chances. In other words, it is about people getting a fair go, based on every person's inherent value and potential as a human being.

This includes the value of a person having authorship of their own life, accessing opportunities on the same basis as other people, being able to participate in community life, and having authentic active membership of the club called Australia. 

Upholding and advancing these values should not be conditional on an economy in surplus.  And if a National Disability Insurance Scheme is designed to uphold these values, its introduction should be based not on the arrival of surplus but on the principle of doing the right thing.

For contrast, let us look to our neighbours New Zealand.  Despite having a deficit economy that will be around for at least the next several years, the New Zealand government, with bipartisan support, has committed over 8 billion dollars to help rebuild people's lives following the earthquakes in Christchurch.

Some people might argue this is not a helpful comparison because a response to the consequences of an earthquake in New Zealand is different to a response to the consequences of living with disability in Australia.  I disagree, because there are clear similarities.

Both situations involve hundreds of thousands of citizens living with an issue that has had a dramatic impact on their prospects for housing, employment, daily living, health, and participation in community life.

Both situations will cost billions of dollars in remedies, to build or rebuild the capacity of people and communities.

Both siutations involve remedies that will lead to a positive stimulus for the economy.

Both situations are taking place in countries that currently have a deficit economy.

Both situations demand action now, because it would be wrong to leave people in such desperate circumstances.

New Zealand has taken action.  Australia has not.

Be it the large jolt of a high magnitude earthquake or the relentless multi-generational rumble of exclusion and discrimination, the urgency of the imperative is similar.  We cannot wait for a surplus economy before we do the right thing by the Australian disability community.  

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'.

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.

imagine getting real

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

2010 Election Promises Part 3

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

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

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

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

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

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

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

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

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

2010 Election Promises Part 2

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

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

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

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

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

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

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

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

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

Access and Inclusion

Weston-Super-Mare, UK

I've just spent the day with a community organisation that oversees a range of community and health services from a purpose-built centre in the heart of a high-deprivation housing estate.  I went there because I wanted to see what impact this sort of investment has in the lives of local people, including people living with disability.

The first thing I noticed was the building's general feeling of accessibility.  It felt good, with a wide entrance that led straight into a light-filled area that had a general reception, a GP surgery reception, a community library entrance, and a cafe.  I liked this space - it felt welcoming and inclusive.

I walked through the building and discovered a lot of good community resources - meeting rooms and so on - including one space that doubles as the local church on sundays.  And the building was REALLY well used.  There were people everywhere, including people living with disability, busy and involved.

In terms of physical access, there was good flat access and reasonable doorways. All that said, when you scratch beneath the surface, the accessibility isn't quite as good as one might hope, and this is instructive for anyone building such places.  The accessible toilet had a heavy door that opened outwards manually.  Indeed the only non-manual doors were the automatic double-doors at the entrance. Light switches and power outlets tended to be the regular size (small) rather than the larger buttons that work better for everyone. Fortunately, these issues are fixable, and will help improve and consolidate what is already a good building.

At JFA we've taken an interest in issues around accessing primary healthcare, so I had a quick look at this here.  From some rudimentary inquiries, I gained the impression that the GP practice has some of the same access challenges as primary healthcare in Australia, with question marks over the availability of height-adjustable examination tables, and also the knowledge carried by GPs and practice support staff about the particular healthcare considerations associated with certain types of disability.

Overall, I really liked the entire enterprise.  As I mentioned before, the centre serves a community that doesn't have much.  There is high unemployment, the housing is poor, education outcomes are modest, and there are family and neighbourhood issues that attract the ongoing attention of the authorities. So it's not an easy gig.  And yet, in its four and a half years of operation, the centre has yet to be graffitied or vandalised, and the same is true of the adjoining outside playground that the centre also installed.  This suggests there is a critical sense of ownership by the local community.

And people living with disability?  They're right there, part of the whole thing, local citizens using the space along with everyone else.  This suggests to me that when you invest in communities and are mindful of the needs of all local citizens, then this is the true foundation for natural inclusion, and can bring success even in the most challenging of circumstances.

This is important because, while disability support funding is a very important consideration in people's lives, it takes placed in the context of community.  If we don't develop structures and habits of inclusion in our wider communities, then no amount of disability support funding will get people all the way to a good life.

So while we must all continue to push for a fairer system of disability support funding, we also need to push for community investment that will help access and inclusion.