Ho Ho Ho, or not?

It's that time of year again, where many of those who can afford it go out and buy a truckload of stuff that they or the recipients don't need, while those who can't afford it become more acutely aware of that fact.  Blessed by social networks, people come together to celebrate, though sometimes this is accompanied by intense planning because folk want things to be 'just right'.  This of course means that things are more likely go anything other than 'just right'.  This is called cosmic irony (where you achieve the opposite of what you intended) and is the essence of a modern Christmas for those who celebrate it.  Aah, Christmas. Aaaaaaaaarggghhhh, Christmas!

Spare a thought then, for the many people who don't have such social networks.  One of the most disabling conditions in our society is that of loneliness and isolation.  People living with disability are more likely to experience this than many, because of an often life-long experience of separation and marginalisation, within a society that over the past thousand years has forgotten that people living with disability have a natural and rightful place in community life as active citizens.

Feeling lonely really really sucks.  It is important for all of us to have options for company other than our own.  After all, having friendships is key to a truly rich life.

So, as I said, spare a thought.  In fact, don't just spare a thought, take an action.  Extend a welcome to someone in your neighbourhood who is alone (or in a congregated support service) and who may be lonely.  Do this not because its Christmas, but because it's what makes communities healthy and happy. We live for eachother.  This isn't about charity, or about befriending.  It's about genuine, freely given association.  You know, neighbourliness and friendship.

And to you who reads this blog and who feels lonely and isolated, I wish you strength and courage and hope, that you may discover actions in your own life that bring you in contact with new people who will discover the joy of knowing you.

Reform....again

The South Australia government announced today that there will be a whole-of-government reform of disability.  According to the official media release, the Premier and the Minister for Disability have "asked the Social Inclusion Board to develop a blueprint for long-term reform - to join up services between Health Education, and the Department for Families and Communities".

Sounds jolly exciting.

I confess that I have become at least partially immune to announcements of 'reform'.  My experience, especially here in South Australia back in 2006, has been that 'reform' has not necessarily delivered added value to the people who need it most, but instead has been shorthand for other matters, such as organisational restructuring, imagined resource efficiencies, and greater bureaucratic control.  So why should this announcement be any different?  After all, past performance is a good predictor for future performance. 

Well, whilst not completely abandoning my capacity for skepticism, there are several promising signals.

First, the reform has been placed in the hands of the Social Inclusion Board (SIB) who, one can reasonably assume, need no convincing about the importance of social inclusion in the lives of people living with disability, a perspective that seemed strangely absent from the previous reform in 2006.

Second, the SIB Chair, Social Inclusion Commissioner Monsignor David Cappo, has signaled that the SIB will be listening to people living with disability, their families and supporters, and others who can assist the realisation of an agenda of inclusion where people living with disability are participating as citizens in the life of our community.  'Listening' must surely mean that the SIB will have careful regard for people's situations,and what can most help people to live a full and rich life. 

Third, the SIB will be looking at the work of several government departments in relation to disability,including Health, Education, and Families & Communities. This is encouraging because people living with disability should have the genuine choice to use their local mainstream health services and, critically, their local neighbourhood school.  I simply don't think it right that some kids have to be dispatched to a special school.  There is no reason why any local school cannot be welcoming of all local kids, regardless of their particular circumstances.

Fourth, as part of this work the SIB will be looking at consumer-directed funding (ie Individualised Funding).  This is important for reasons that regular visitors to this blog will hopefully be familiar with.

Fifth, Lorna Hallahan has been appointed to the SIB.  Lorna has had a very long association with disability issues, is a very clear thinker and is highly respected.  

So that's the encouraging stuff.  What is on the downside?  A couple of BIG things spring to mind.

First, one can imagine that running a process of building a blueprint will take time.  But how long?  At a national level, the idea of a Disability Strategy is a fabulous idea but it's taking an epoch for the strategy to emerge.  We don't really want the same thing to happen here; local people living with disability have been waiting long enough, don't you think?  A comprehensive process of listening, reflecting and designing doesn't have to take an age.

Second, there is no guarantee that the South Australia government will implement the SIB's recommended blueprint,either in its entirety or in part.  However, it would be a particular kind of government that would turn down a well-thought-out blueprint, built on consultation with the disability community, and anchored in the UN Convention on the Rights of Persons with Disabilities.

So if you want to be heard on this, I suggest you make contact with the SIB to let them know you'd like to contribute your views.  And do your best (as I am doing) to fight any cynical thoughts that this government announcement has been timed to toss a fish to the disability community three months out from the state election.  Much of formal politics these days seems to be about getting in power and then staying in power, and it is getting harder to distinguish between the various mainstream perspectives.  Frankly, I'm less concerned about the extent of any government self-interest in this, so long as a decent blueprint is delivered and implemented.

You can find out more about the Social Inclusion Board by clicking here.
For more information about the UN Convention, click here. 

A Quick Thought On Slow Change

In Transit

Have been on the road the last few days with a dodgy laptop, so no blogging. I am still in transit but have some time at this airport to go blogabout - the free internet access terminal gives me 15 minutes only so I'd better get to it.

I finished out the UK trip with a couple of meetings, the first about the role of social workers/case workers in the world of personalised support, and the second with a support agency who have been focused on personalisation for years. I intend to blog separately on both points, so watch this space. Instead, for this brief, almost airborne blog posting, I thought I'd share a sleepless thought about change.


I have had the immensely good fortune in my life to have lived and worked in a number of different countries, and in roles characterised by the forces of, or the need for, change. In the same way, the topic of change has also been a recurring feature of this work trip, so its now on my mind.


At various points in our lives, we each get the need for, or otherwise are confronted with, the forces of change. Sometimes we want it, sometimes we don't, sometimes it feels like it's for the better, sometimes not. Whatever the reason for its presence, it's hard to ignore and harder to avoid.


In the world of citizenship and disability, one thing stands out in respect of change. Change can come from all sorts of places and for all sorts of reasons. However, it is my experience, such as it is, that the most helpful and sustainable change for people living with disability has been initiated by those same people. Change initiated by politicians or policy makers, by bureaucrats or businessfolk, is far less likely to be helpful and sustainable unless those initiators have in turn been influenced by...yes you guessed it...people living with disability and the families and friends of those who need more assistance to give voice.

If helpful sustainable change ultimately comes from such grassroots, then one's attention is inevitably drawn to what helps and hinders such voice.  As I discovered from the Loop conference called Why Is It So Hard To Speak Up And Be Heard, there are many reasons why people feel they cannot, or choose not to, give voice in pursuit of helpful change.  These are well-documented, and contact http://www.juliafarr.org.au/ if you want a copy of the Loop proceedings.  For the purpose of this blog posting, one particular reason comes to mind - "lack of a collective voice".  For me, this is less about formal advocacy and more about the power of numbers.  The more people who together passionately and actively give voice in pursuit of a common interest, the more likely it is that the interest will be fulfilled.  History has shown this again and again and again.

So for example, if you feel strongly that people living with disability should have genuine access to personalised support arrangements so that they can get on with a life of choice and citizenship, then connect with others who feel the same way and speak in concert. 

It seems the case that the voices within the disabilty community can often get preoccupied with the perceived differences between them.  At the very least this leads to a lost opportunity and, at worst, acrimony, bitterness and hurt, and with the common interest dismally unfulfilled.  Given the common barriers facing many people living with disability, and therefore a shared interest in helpful change, it seems a better idea for folk to focus on what they share in common rather than on what sets them apart.

Shopping

Wigan, UK

It may not surprise you to learn that it has rained somewhat during the time I've been in the UK.  In fact, since I got here on the 18th november, not one day has passed when there hasn't been rain.  This is something of a novelty given that I live in South Australia, which is generally drier than a wafer.  However, the novelty soon wears off once you're driving in the stuff, upon British roads that are jammed with squabbling cars whose harrassed occupants are trying to get to some other place.  Often a shopping place.  I recall listening on the car radio one evening how someone had called in because they were caught on the freeway for the last hour in late night shopping traffic, and with no prospect of getting out of said traffic for another hour.  Their call was to request how best to deal with a full bladder, given there's no dunny in the car.  The response didn't provide relief.

There are shopping alternatives of course, such as online shopping, where you can browse a multitude of offerings, and have stuff delivered anywhere in the world, and all from the comfort of your own home (inclusive of dunny).  This online world has now extended to the purchases made by people living with disability who have Individualised Funding (aka Individualised Budget, Personal Budget, and Self-Directed Support).  Through a collaboration between In Control and a specialist online services company, people with a personal budget can do their shopping online, at Shop4Support (www.shop4support.com).

Though still in its early days, this engaging site carries merchant 'stores' covering a growing range of offerings, including planning support, personal support, overnight support, financial services, advocacy, legal services and plumbing supplies.  Just like Ebay or Amazon, shoppers can move through the site selecting items and then paying at the checkout.  But there is other stuff there too.  A person can upload their personal budget details to the website to help keep track of their spending, with the money moving directly from the public funder's account (the Local Authority, a bit like an australian state or territory) to the merchant's account.  This gives the person full control but without the hassle of managing the transaction.  For the local authority, this arrangement provides what appears to be a cost-effective approach to managing the transactions and accountabilities associated with Individualised Funding. 

The other thing I like is that people can upload their own stories about how things are going, what is working well and what could be different.  This creates the opportunity for an online community to share stories about how people are using Individualised Funding to move towards a good life.

The merchant stores carry have full price transparency, together with other information about the organisation's values and approach.  This gives the shopper a good opportunity to compare different support agency offerings.  I am also told that, just like some other online shopping sites, shoppers at Shop4Support can also apply a rating to different agencies.  This means that there is consumer-driven real-time evaluation of support agencies and other merchants.

Lest we forget that you don't get yourself a rich life simply by buying stuff (where people run the risk of living a lifestyle characterised by people who are paid to be there) the site is also developing community pages so that visitors can explore local community facilities and services, to find out how best to access opportunities that are available to all citizens locally.  I can also imagine the emergence of other offerings, such as Circles networks, Microboard support, and opportunities for people and families to link with other people in similar situations.

 

I haven't fully navigated the website because I don't have a personal budget and so can't access the full functionality.  And much of what I've described in this blog posting is based on what the people who run Shop4Support have told me.  So I can't vouch for the accuracy.  But the point here is that the site exists, and demonstrates that it is possible for there to be Individualised Funding arrangements where: 1) the person is in the driving seat without being swamped by complexity or bureacracy; 2) the person is in the valued role of cashed-up shopper in a marketplace where s/he can choose those agencies and services that have the best match with what s/he wants; and 3) the person can access a number of opportunities for genuine fellowship in the local community.

Naturally there will be significant costs associated with setting up something comparable in Australia.  I can't help but imagine that in the meantime there must be a lower-tech way of achieving this degree of connectivity.

Providers and Personalisation: the quick and the dead

Birmingham UK

As increasing numbers of people now understand, and regardless of the extent of availability of Individualised Funding, there is nothing stopping any service provider, better termed 'support agencies', from moving towards genuinely personalised services.  Nothing.

I've spent a fair bit of time in the UK talking with various support agencies who are currently working out how best to transition their services in line with a national government directive for disability support to be personalised, and with the target that 33% of the disability population have personalised support arrangements by 2011.

What is clear is that there are, of course, a number of practical considerations that a support agency must work through.  Once the agency has had its moment of clarity about doing the right thing, it is then prudent for that agency to undertake an audit of organisational capacity, especially in terms of strategic thinking, change management and, critically, organisational culture change.  Those UK support agencies who began such work early have been the ones who have enjoyed the smoothest transition so far.

These are important considerations. An agency needs to be able to think and act strategically if it is to move intentionally towards a vision that sees people living with disability receiving the support needed to live a good life.  Similarly, an agency needs to be able to not only technically manage a change process but to also have faith in it.  Such faith will come from the heartfelt belief that a person living with disability should have personal authority in his life, can participate as a citizen in the life of his community, and has potential to grow and learn.  These are true of all people living with disability.  If a support agency struggles with these ideas, it really needs to get out of the business.

And, an agency needs to understand what organisational culture is, how it comes about, what sustains it, and how it can be changed for the better.  The main way that support agencies assist people is through human power, so an agency's leadership has to be able to build the right culture among its people.

And then there is the relationship between the agency and each person it supports.  If the agency is to truly transform to personalised arrangements it has to reflect on its relationship with the people who use its services.  If you work with a support agency that hasn't begun to reflect on its relationship with its customers, then try these initial questions, asked from the perspective of the person living with disability: 

1. How are you getting to know me?
2. What do you know about what is important to me and what I want to achieve at this point in my life?
3. How are you tailoring your available resources so that I am supported with the above, rather than just served as part of a group?
4. How are you arranging safeguards (if we're all agreed that I need them) so that I can safely navigate the normal risks of life?
5. What steps are you taking to match my support needs with staff who share similar interests to me, and do I get a say in which staff support me?
6. What steps are you taking to assist me to build natural community connections and relationships, so that my daily life is not dominated by the presence of paid workers or other people living with disability?
7. How do you know that your support is truly assisting me to live the life i want?

So, seven questions that can help a support agency begin to think through its relationship with the people it seeks to assist.

If you are a person living with disability (or a family member or friend of someone less able to speak up), try putting these questions to your support agency.  I'd be very interested to hear what response you get.

And if you work with a support agency, then Julia Farr Association would be very happy to assist you work through this stuff.  Because support agencies that are committed to delivering highly personalised support, are themselves worth supporting.  

Crime and Punishment

I was at a meeting recently that, among other things, explored the topic of 'disability hate crime'.  The presenter outlined a number of crimes over the past few years, sometimes involving fatalities.  The common strands were that the victim was often an adult man living with with intellectual disability, living relatively independently but vulnerable to being exploited.  It wasn't easy to listen to the stories.

It is my view that it is far too simple to refer to such incidents as disability hate crimes.  I cannot believe that there are significant numbers of people out there who feel hate towards people living with disability. Instead, I think the explanation is simpler.

First, lets have a quick exploration of this thing called 'hate'.  As humans there will be things in our lives that we have no experience of.  When we have no experience of something, we are naturally wary of it, and this uncertainty can bring feelings of nervousness, a feeling not so far removed from fear.  When things make us feel this way, we may go out of our way to avoid the thing, and we may even resent (hate) it for making us feel this way.  for example, I have met several people in the UK who say they could not live in Australia because they hate snakes.  This is based on absolute no experience of snakes, and instead is constructed on a misrepresentation of snakes as nasty.  The fact of the matter is that snakes aren't inherently nasty and don't go out of their way to torment people.  And it doesn't have to be snakes.  Public speaking, spicy food, air travel, meeting new people, any number of things inherently fine in themselves, have become the subject of wariness for some people. 

So I guess that for some people who have never known a person living with disability in their neighbourhood, maybe there is a wariness there, and a wariness that of course quickly passes when people finally have the good fortune to meet someone living with disability. But hate?  I'm not convinced.

Instead I think the explanation is more straightforward.  People living with disability have a greater vulnerability, and there are some people out there (hopefully few) who take advantage of such vulnerability.  It's arguably easier to steal a bag off someone in a wheelchair, who may be in less of a position to give chase.  I therefore think that people living with disability are more likely to become the victims of crime because they are vulnerable, not because they are hated.

Unfortunately, in our rush to protect people with such vulnerability, we have placed them in service arrangements where they are just as vulnerable to those people who have a propensity to take advantage of the situation.  Institutions, be they campus services or group homes, can render people invisible to the wider community, and therefore more vulnerable to exploitation and crime. Crime doesn't just happen in the community.  during my career I have encountered many stories of vulnerable people living in 'group' services who have been robbed, assaulted and raped.  For some this has been repeated for years. 'Safe' services aren't necessarily all that safe.

So really what we have here is a phenomenon called 'vulnerability crime', a better description of what is really going on.  Using the phrase 'disability hate crime' serves to misrepresent what community can offer citizens living with disability, and where in the name of 'safety' we in effect punish the person living with disability by placing her into group arrangements out of step with who she is and what she wants.  Fact of the matter is that if people living with disability have personalised community-based support arrangements with an emphasis on relationships and participation, they are much more insulated against abuse and crime than is otherwise the case.

partnership is postponed until further notice

Another anonymous local authority, UK

For the first time since my arrival in the UK, it wasn't raining, and the town I was in looked great.  I can't tell you where the place was because I was attending a confidential meeting and it seems I am sworn to secrecy.  Such intrigue!  To be fair, it was arranged this way because of the desire that those present would be honest with each other about stuff.

The meeting was to provide an opportunity for the leaders of children's services and adult services to to spend time together as a first step to creating 'seamless' services so that there is a genuine 'whole life' approach to assisting people living with disability.  Great idea.  All too often we hear stories where a person living with disability hits 18 years old, and then everything changes as that person moves to a very different pattern of support (and the same is sometimes true when a person hits 65 years old).

So, great idea, but a couple of days out from the meeting, the adult services folk withdrew.  I haven't been able to find out why, but I can't imagine any pressing issue that would remove all of the adult service leaders from the event.  It is therefore a shame that their resolve was so easily dissipated.  Any notion of partnership was duly postponed, and the children's services folk had to meet by themselves.

What is perhaps more disappointing is that the meeting was planned apparently without regard for the perspective of people living with disability, given they have the biggest stake in all this.  It seems counter-intuitive to plan for a whole-life approach to supporting people living with disability if you don't actually involve them in its design.

So that's our reminder in all this.  Any decent system design for people living with disability needs to involve those same people in its design.  This is called co-design, and was an absolutely critical element in the success of the mental health reforms I was involved with in Wellington NZ.  Co-design emphasises the expertise that people bring because of their lived experience, and helps ensure that the resulting service design feels relevant and tailored.  

Unfortunately, the folk at this meeting spent a substantial part of the morning naming the various roadblocks and concerns and safety issues that might get in the way of the journey towards personalised supports via individualised funding.  A very long list was generated, and there was a sense of heaviness.

It was only at the very end of this all-morning meeting that the meeting began to think beyond such issues towards the possibilities in people's lives. I say this not as a criticism of those present, because I am confident they genuinely want to support people to get a fair go at life, but more as an observation of how public services train their staff to think. 

And I can't help but wonder if the morning might have had better balance had there been people living with disability in the room.  The stories of lived experience should always pull rank over the imperatives of bureaucracy.

Protection or Safeguards

Nottingham, UK

Before I left Australia for this trip I was in Hobart for a meeting on safeguards and restrictive practice (which I subsequently blogged on this site).  While it was good to meet with folk with shared concerns about restrictive practices and their impact on vulnerable people, I was surprised and disappointed that there was not a greater contextual focus on getting a good life as active citizens.  After all, the more you're involved with things going on in your local community, then the more visible you will be, the more good people you will have in your life, and the less likely you will be to be exploited.

Well, I've just experienced a similar disappointment.  I've just participated in an all-day symposium (a jumped-up word for 'meeting') on Safeguarding.  It was held at the National College for School Leadership (http://www.nationalcollege.org.uk) and hosted by the Ann Craft Trust, a national organisation working to protect vulnerable children and adults from abuse (http://www.anncrafttrust.org).

The event explored recent UK initiatives designed to offer greater protection for vulnerable people.  Included there was a speaker from the Independent Safeguards Authority (http://www.isa-gov.org.uk).  I was particularly looking forward to hearing about how they were building better practice in disability support by steering support agencies away from restrictive practices and by upholding the importance of people living valued lives in local communities.  However, they don't do any of that (Robbi, please do your research of such things properly).  The ISA was instead set up to make sure that 'unsuitable' people don't get to work with vulnerable children or adults.  Basically, ICA is like a much much bigger version of police-checking.

That's all very well, and valuable, but as with the Hobart meeting, I felt this event lacked a focus on how best to support people to get a good life.  As with the rest of us, vulnerable people are most likely to be safeguarded if they are firmly embedded in the rich associational life of their local community.  In other words, if good people are in your life, they look out for you.

It is therefore ironic that that this does not tend to happen in the same way when vulnerable people are placed in traditional 'safe places' such as institutions and other group arrangements, when the only people in the vulnerable person's life are paid to be there and where such group arrangements create separateness from the wider community and the relationships therein.  Basically, a person is more at risk in such 'safe' places.

Nowhere in this symposium was the 'get a good life' issue really unpacked, and the issue of support agency restrictive practices was silent.

However, as a result of a spirited conversation right at the end of the day, the participants generated the following list of useful things that can help keep people safe AND get them a good life:

• intentional networking to bring good people into the life of a vulnerable person
• bringing positive role models into the life of the vulnerable person
• assisting people to grow skills that can help their decision-making so they stay safe
• a legislative and regulatory framework that stamps out neglect and abuse

 Add to this list is the need for an overall genuine thoughtfulness that comes from a deeply felt regard for the person's right, whatever the extent of their vulnerability, to live a rich life characterised by genuine choice and active citizenship.  In other words, being truly part of what's going on.

Along with others, Julia Farr Association is currently exploring the topic of Safeguards and Restrictive Practices.  If you'd like to be involved, get in touch.

Keeping the flame burning

Anonymous local authority, UK

Oh how things can change.  Some folk may be aware that I was in the UK a little over a year ago, and was very enthusiastic about a certain local authority that was rolling out Individualised Funding, known in these here parts as 'Self-Directed Support' and 'Individual Budgets'.

What marked it out for me?  For starters I like the coherent, thoughtful approach to the methodology, where the local authority seemed to genuinely invest time in getting to know people and their situations.  I also liked the fact that they had people with a lived experience of disability on the implementation team.  Also, the implementation team leader was a passionate advocate for the methodology and who in turn was well-supported by a senior manager within the local authority.  It was all VERY encouraging.

Fourteen months on, I'm back in the UK and I got an update. And frankly a shock. Things have changed, and folk are no longer quite as enthusiastic about this local authority.  So what's changed exactly?

The senior manager moved on to a job with another local authority.  This in turn changed the balance of senior leadership, and meant that the Individual Budgets program lost its key 'sponsor' i.e. the person who is senior enough in the organisation to help fix issues and remove roadblocks.  Without a sponsor, the implementation team leader was now under-supported on critical issues, it was only a matter of time before that person departed, and they have.

This is a reminder to all of us about the need for leadership vigilance and renewal, so that there is always someone to carry the torch and light the way.   It is so important to support other people to grow into leadership roles so that people can survive the departure/loss of a leader.  This is as true for an informal circle of people in the life of a person living with disability as it is for a formal organisation trying to do good works.

But for this particular local authority there is an even bigger issue, which applies to ALL the local authorities in England.  People will know that I have previously asserted the following:

'a good idea is at its most vulnerable during implementation'

And this is most definitely the case with Individual Budgets in the UK, which has perhaps become the victim of its own success.  At this stage of its implementation, the national government has announced that all local authorities must offer it, and must achieve certain targets.  Let's think about what that means.  While it is a triumph for those local authorities who have enthusiastically responded to the call from the disability community that there must be a better way, there will be other local authorities who have been less enthusiastic, or who have otherwise been self-limited by the drama of their own bureaucracies.  And now they've been told to do it, and get the numbers up.

So what happens?  All of a sudden there is less attention to detail, to getting to know the person really well, to assisting the person to build an arrangement that is tailored for them.  Instead, its a numbers game, involving a quick look and a quick response.  Which means that there will be a bias towards working with people with less complicated situations, and a bias towards buying things that are already out there.  In this way, the model of Individual Budgets would lose all of its potency, making it highly likely that people would end up with pretty much the same services that they had before.

Add to that the high likelihood that there will be a cut in support funding across the land because of the effect of the global downturn on the British economy, and things can start looking grim.

The main thing that committed people can do right now in the UK is to stay true to the fundamental values of Self-Directed Support, and to continue to work with those local authorities who still carry the vital ingredients for success.  That's the best way to ride out this particular storm and maintain momentum.

As seafarers will know, it's never easy to keep a candle flame alight during a storm, but without such situations we wouldn't have had the invention of the hurricane lamp.  One of my favourite innovations, the hurricane lamp (in case you didn't know) is a specially designed glass lantern that protects the burning flame from the elements, so that even during a storm you can light your way.

I am hopeful that a hurricane lamp will merge to protect the momentum and potency of Self-Directed Support and Individual Budgets.  Its too important to be snuffed out.

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. 

Tools In the Toolkit (and deciding to reach for one)

Rural Warwickshire, England

I've just come /away from an impressive capacity-building event for family members with an adult son or daughter living with disability and who want to plan for their son/daughter's future.

This two-day event (I attended most of the second day), run by Our Futures,  was aimed at families who are taking a leadership role in their local communities, connecting with other families to build networks of planning and support.  The goal of such effort?  For their relative to have a rich inclusive life characterised by the presence of other people who can look out for the person, help with decisions, and fight their corner.

The two-day event comprised a range of presentations and conversation on a variety of topics, including:

• making the decision for change 
• building natural networks, such as circles of support, in the life of the person living with disability
• housing options, including home ownership on a low income
• micro-enterprise as a way of building a valued employment role in the community for a person living with disability
• fundraising to help keep networks sustainable

The material was very practical and the family members I spoke with were very enthusiastic about how the material would help.

I also spoke with Ted Kuntz, a Vancouver-based Canadian who has written about his own experiences as a parent of someone living with disability, in his book, Peace Begins With Me.  One of his key messages, and one that he particularly explored at this event, was that if, as a person living with disability or as a relative, don't take action in pursuit of a good life for the person, then don't be surprised if no one else does, because who else will care as much as you.  This also echoes a key message that another Canadian, Michael Kendrick, shared with us at the 2008 Loop conference, which was that if you wait for someone else to rescue you then you will be waiting a long time.


In many respects this is a hard message, because certaintly I know from my many conversations with people, it can feel hard just getting through the day, without then summoning up the energy to push for change.

But push you must if you want to move towards the things you want in your life or that of the person you love.

As we said in the Loop proceedings from 2008 (copies available at JFA), the most important part of any plan is the decision to act.  Information and coalition can help with that, and i think that essentially this is what the Our Futures event is about.

By the way, I have acquired a couple of copies of Ted's book, and we will make these available on a loan basis to people once i get back.  So make a reservation now and get in early!

So what is personalisation? Try this for size.

I'm on the road now, and for the next couple of weeks, in the UK, to see what's going on for the disability community.  I'll try and post to this blog as much as possible, though of course this means you may be exposed to thoughts that haven't been fully thought through, if you know what I mean.  Indeed, my previous blog posting was done while I was sleepless in Singapore, waiting for my next flight.  I hope it was coherent.

My first meeting of the trip was with a group of mainly social work professionals at London's Tavistock Centre, the great bastion of "tell me how you're feeling".

The meeting was to discuss the nature of 'personalisation' as this is the Big Thing in the UK.  A social work academic journal is planning a special issue on the topic and this meeting was arranged to hear from some of the contributors as they prepare their draft papers.  I was an interloper really, because I had a separate meeting later in the day with Simon Duffy ( a leading thinker on the nature of welfare and citizenship) who very kindly had obtained an invitation for me to attend the Tavistock Centre seminar.  The organisers in turn very kindly invited me to contribute an article to the special issue.  

I arrived at the meeting bang on time and had with me my killer presentation giving an overview of the Julia Farr group, a description of the interesting things we do and what we've learnt, leading to a summary about a key challenge for the future of case worker practice.  And all in a neat 30 minute bundle.

So the meeting started 20 seconds after I arrived (I refer you to my afore-mentioned punctuality), and I read the agenda and discovered I had been scheduled 15 minutes only for my presentation.  And it also quickly transpired that the Tavistock person chairing the day was a stickler for time-keeping ("tell me how you're feeling, and make it snappy").

I sat through three thoughtful and well-orchestrated presentations, and then it was my turn.  Saddled with long-haul-flight-related fuzzy thinking, my only solution to the problem (15 minutes for a 30-minute presentation) was to speak twice as fast.  I also lost two minutes at the start because people needed an 'air break' (we were in quite possibly the stuffiest little room on the planet) and so that meant i actually had to speak a little more than twice as fast as normal.  Well, given that I always speak as fast as possible, speaking at twice that speed was never going to work.  And the time soon melted away.  So I had to start skipping slides.  Which of course was a bit like skipping chapters in a book - you'll quickly lose the thread and point of the narrative.  And then the speaking clock (a pox on his clocks) gave me 5-minute and 1-minute countdowns which increased the drama.  And then he shut me up.  Awful.

Result: a rambling, incoherent narrative which I imagine was about as instructive as someone trying to listen to three different conversations at once and wondering if there is any common link.

I spent the rest of the day reflecting on this catastrophe, which I presume, given the venue, was 'character-building'.

I did get a moment to reflect on things other than my own stage-death.  And in this initial reflection (I reserve the right to amend my views in the fullness of time and sleep), I noticed that the people in the room did not necessarily have a common understanding of what 'personalisation' actually is.  This is interesting given that the personalisation agenda seems like the main event in the UK at present, and presumably social workers will be fairly heavily involved with it, given their role working with vulnerable people.

And I'm not sure that there was any advancement towards this common understanding by the day's end, partly because the time constraints (it is potentially a MASSIVE topic, after all) and partly because a lot of the conversation was about the nature of social work, wherein lay some uncertainty also.

If indeed there is a lack of common understanding about what 'personalisation' actually is, and what technologies, habits and values comprise it, then it is highly likely that it will just become the latest skin for existing practice.  In which case, the last thing the disability community needs is to have to look at the fabled 'emperor's new clothes'.

So we have to be crystal clear about what we mean about personalisation.  That may involve a very long conversation, so here I'll just make a couple of comments.

First, it is a means to an end, not an end in itself.  People don't aspire to being 'personalised'; they aspire to having fulfilling lives characterised by things like relationships, love, contribution, growth and joy.  So,for people living with disability, 'personalisation' is where the support they access is highly personalised to their circumstances, struggles and aspirations, as they seek that fulfilling life.

Second, let's try an analogy.  A tailor-made suit is a good example of personalisation, where the customer's dimensions and preferences are fully charted prior to the suit being made. The alternative is a suit that you buy off-the-peg.  It's far less likely to be the perfect fit, or have all the features you might choose in a suit. In the world of disability support, the 'off-the-peg' suit may not even look like a suit, or at least not one that you would want to wear if you had the choice.

The outcome of a well-tailored suit is not the experience of the tailoring itself (although it may be indeed be enjoyable) but the fact that the resulting suit really works for you in terms of what you need, want and like. 

As it is with personal support.  So if you are offered 'personalisation' in disability support, then take a good look at the nature of the offer, and use the analogy of the suit.   Do you get to choose your tailor and to learn about their credentials (you're placing your trust in this person after all).  How do they take your measurements - is it thoughtful, considered, skilled?  Do you feel you're being listened to?  What range of options is the tailor putting before you - fabrics, colours, styles and so on, and can you build your own look entirely?  And when the suit is made, does it reflect all of the above?

If what you get back is isn't genuinely tailored to your preferences, then its just a stitch-up.

Sorry, but not to you guys

On 16 November Prime Minister Kevin Rudd issued an apology to the Forgotten Australians.  As reported on the ABC, his apology noted how there were Australians who had been housed in institutions, and how many of them were treated badly, carrying scars that will never heal.  There was reference to their lack of consent, and how their lives were changed irrevocably.

Minister Jenny Macklin said it was important to recognise the terrible wrongs of the past, and Leader of the Opposition Malcolm Turnbull said that the system had failed people across the generations.

Quite right too. And well overdue.  By crikey we're at a turning point in Australia. 

And then I realised that they weren't talking about people living with disability.

Not that it isn't important to acknowledge the often awful experiences endured by kids taken from their family homes and raised in institutions and foster homes often far far away, and driven by public policy lacking in thoughtfulness about children's rights and what children need. 

Of course that's important, and it's right to have named it for what it is.  It's just that there I've been trying to find where there has been a similar public apology to the disability community for the hundreds of years of discrimination, marginalisation, and exclusion, characterised for many by neglect and abuse.  But I can find no such apology.  Nothing.  Diddly squat.

Because of the lifelong additional vulnerability that comes with a disability, the institutional response has been particularly harmful to many people's life chances, because the nature of their disability can make it much harder to bounce back.  Take for example the experience of some people living with intellectual disability, who develop unusual and sometimes disagreeable habits in response to living in unwholesome settings (large and small institutions), and as a result they get labelled as 'challenging' by those in charge and get a double dose of more of the same.

In these and other ways we have been failing people living with disability for years, for generations. But there is no public apology.  And why should we be surprised, when institutions big and small are alive and well in Australia, and imposing highly damaging lifestyles upon people who simply don't deserve such ignoble treatment.

Why aren't more people outraged by this?  There are people living with disability whose rights, choices, citizenship and dignity are being compromised on a daily basis.  We cannot stay quiet about this, and nor should those who have the responsibility of running the country.

So, dear Prime Minister, and Premiers, and Chief Ministers, let's have the public apology, and make it a good one.  And back it up with strong human rights legislation that gives back to people living with disability their authority and their citizenship.  And when we finally get a national disability strategy, make sure it puts those values into practice.  Be accountable to your citizens living with disability.

And to you who has come to read this blog posting, forward it to your local MP, your Chief Minister, your Premier, your Prime Minister, and ask for the apology.  December 3 is International day for People with Disabilities - an apology would give that day some meaning.

There's not a moment to lose.

(with thanks to ally Ross Womersley for stimulating this reflection)

The Assurance of Support Funding

As many people will know, there is a growing conversation in Australia about a National Disability Insurance Scheme.  Basically, the idea is that the government collects money from citizens through a tax or levy, and this money is then used to pay for the support needed by people living with disability.

There are attractive benefits.  First, as with all good insurance schemes,  the arrangement should be based on a thorough understanding of the likely demand (in other words, the true support costs associated with disability).  This makes it more likely that the allocated funding has a good fit with people's support needs.

Second, people should be able to get certainty about the funding they will receive, and they can get this certainty early, and potentially without hassle, so they can plan for the future.  

Third, like other insurance, the money you get is portable because it is assigned to the person and not to a state, territory or particular service agency, and should therefore go with the person wherever they happen to be Australia (thus removing all the funding anxieties for people living with disability who move interstate).  

Fourth, because the funding arrangement is directly between the government and the person living with disability, the person has much more flexibility about what sort of support arrangements they would like to have in place.  In this way, a national disability insurance scheme is an expression of Individualised Funding.

I pause here to note that, as with all types of Individualised Funding, a national disability insurance scheme will not necessarily deliver to people the lifestyles they seek.  It is simply a means to an end.  So it is vital that people have informed choices so they have the best possible chance of building a supported lifestyle that is valued and part of the rich associational life of their local community. Importantly, this can help reduce any dependency on traditional,technocratic support agency arrangements that congregate people with other people living with disability, as 'passive recipients' excluded from participative citizenship.  

Similarly, it is important that governments and communities don't make the mistake that a national disability insurance scheme is all that is needed to 'fix' disability.  Governments and communities still have a duty to ensure that everything they do is accessible and inclusive, be it education, transportation, buildings, public spaces, employment and so on.

Otherwise there is a higher risk that even with the funding certainties that a national disability insurance scheme can bring, people will still find themselves in lifestyles that are characterised by exclusion rather than inclusion, and where most people around them are paid to be there.

So, mindful of these cautionary points, I welcome the potential of a national disability insurance scheme.  

However, as already evidenced by several recent conversations I have been in, the term 'insurance' can confuse many people.  This is because, for most of us, the term 'insurance' is understood to mean those situations where we pay a premium to cover the risk of something that could happen in the future, for example to our car, our house, or ourselves.  The key phrase here is 'something that could happen in the future'.  Insurers don't tend to give you an insurance policy for something that has already happened. 

So some then ask, 'how can people have disability insurance if they already have their disability?'   This is a fair point.  A comparable scheme in New Zealand does indeed exclude people who already have their disability.  The NZ scheme, called ACC, is a 'no-fault' compensation scheme that protects people against the consequential costs arising from accidents, including accidents that result in lifelong disability.  Through a levy arrangement that applies to all working New Zealanders, funds are collected to cover the costs of accidents, be it a rolled ankle playing netball or quadriplegia as a result of falling off a ladder.

For those New Zealanders acquiring their disability due to an accident, ACC is the main funding source for the cost of their lifelong support needs.  To access this funding support without having to pursue compensation  through the law courts is obviously a big help for people who have a dramatic change in their life as a result of an accident.  But note this funding supporting does not extend to New Zealanders who were born with a disability or who acquired  a disability through a diagnosis such as multiple sclerosis or through an event such as a stroke.

In effect, this creates two classes of New Zealander living with disability - those who got their disability through an accident and who thereby get  insurance-based funding in line with their support needs, and those who were born with a disability (or who acquired it in some way other than an accident)  and whose access to funding support will depend on how much the government chooses to spend on the disability community overall (as is currently the case in Australia).

So the New Zealand scheme is only a partial solution because it is, in essence, a typical insurance scheme that collects premiums to cover the personal impact of accidents yet to happen.

To introduce a similar scheme in Australia , while bringing obvious benefits to some, will create the same disparities and that's the last thing the disability community needs.

Therefore a national disability insurance scheme in Australia,if it is to be fair and effective, must be structured so that it provides funding support to all people living with disability.  It is still an insurance scheme in the sense that it is based on a thorough understanding of the risk and prevalence of disability in Australian society, plus a thorough understanding of the costs of adequate support so that people can get on with valued lives, and where premiums (collected via taxation or levy) are set accordingly.  However, such an arrangement differs from commercial insurance schemes because it brings the assurance of funding support to all Australians living with disability. 

As such, the scheme is perhaps better termed a National Disability Assurance Scheme.  After all, as the Oxford Dictionary defines it, assurance is "a statement or promise designed to give confidence". That sounds about right.  

I therefore encourage you to lend your support to this idea. For more information about the National Disability Insurance Scheme, click here.  And let's remember that such a scheme is not a cure-all.  We still need to push governments and communities to understand the value of diversity, and to recognise and respond to the rights of citizens living with disability. 

Restrictions on Life

I was in Hobart last week, including attending a meeting on 'restrictive practices'.  The meeting was part of the ASSID (Australian Society for the Study of Intellectual Disability) 2009 conference program .

The meeting was intended to be a small committee-style meeting but the room soon got overrun by the sheer numbers of people wanting to be involved in the discussion.  This is obviously a topic of concern for many.

Though a common definition seems illusive, 'restrictive practice' basically refers to situations where the paid support staff take measures to restrict someone who is exhibiting 'behaviour of concern', also known as 'challenging behaviour'.  Restrictive practices can include physical restraint, such as tying someone down, chemical restraint like medication, seclusion (locking someone up) and mechanical restraint such as applying arm splints or disconnecting the power supply to a person's motorised wheelchair so that the person is immobilised.

Though initiated in the name of safety, such interventions are no picnic for the person so restricted.  These practices are dehumanising and should not be part of the repertoire of human services.

At the Julia Farr Association we've begun our own exploration of this topic, and the Hobart meeting has confirmed what we've learned so far.  Namely, that these types of practice are used far too often in human services and not always as a last resort, and reflect the failure of human services to really understand the person behind the 'behaviour of concern'.  As I've mentioned elsewhere, all behaviour has a purpose and if we don't get to know a person sufficiently well to understand the reasons behind the chosen behaviour, then we are truly neglecting a duty of care - ironic given that 'duty of care' is usually the stated reason for using a restrictive practice.

'Behaviours of concern' can often emerge because of a person's experience of services.  And when you stop to think about it, this isn't a surprise.  Even though choice and control are important to all of us, we tend to set up service arrangements that specifically compromise these values.  We house people together not because of their choice but because they have similar 'issues' or because its convenient to the service provider or because it's apparently economic for the public funder (which it ultimately isn't).

These arrangements, which also separate people from ordinary valued opportunities in the wider community, would easily unsettle any of us.  Add to this mix the person's heightened sense of vulnerability because of their disability, which may include difficulties in making their views known, and we have a situation ripe for 'behaviours of concern' to emerge.  Frankly if I was placed in such arrangements I'd get pretty challenging too.

The simple fact is that if we put services in place that don't fit well with a person's preferences, than all we are really doing is containing people and keeping them diverted.  This is not a recipe for a rich life, and people so served make this known in whatever way they can.  And then they get labelled by the very same service system, which may then put in place restrictions that frankly make matters worse.

Three main things need to happen.  First, we need legislative and regulative arrangements across Australia (step forward government and get stuck in to this issue) strong enough to discourage and prevent service agencies from using such practices.

Second, disability support services need to be fundamentally redesigned in the context of personalisation, where we build supports around each person's circumstances, rather than 'fit' people in to pre-purchased block contract services that are so horribly depersonalising.  This isn't as expensive as it might sound.

Third, we need to build connections into local communities.  Until we intentionally build personal networks into the lives of our most vulnerable citizens, until this is a routine habit of all human services, then people living with disability will continue to experience exclusion.

In the meantime, if you see restrictive practice, name it and shame it, because there must be a better way.

Trial and Error? South Australia announces introduction of Individualised Funding

On 28 October the South Australia government announced its arrangements for a cautious introduction of Individualised Funding (also known as self-directed funding). Unfortunately, despite the wealth of experience and wisdom elsewhere, the SA trial is steeped in caution and constraint and is unlikely to make that much of a positive difference in the lives of the 50 people lucky enough to be chosen by a government selection panel. Indeed, it looks set to repeat some of the errors that other places have already learned from and moved on.

I really want Individualised Funding to be a success in South Australia, so it is painful to have to be critical of the SA initiative. But criticise I must, because the scheme contains more irony than a car wreckers yard. How so? Well, the whole idea about Individualised Funding is that it gives people genuine choice and control over their publicly funded support arrangements. But choice and control are missing at critical points throughout the SA initiative's arrangements. First, only 50 people get to be involved. What if you are person number 51? No choice, no control, because you're not in. If more than 50 people want to choose this, why limit it to 50? Sure the local arrangements needs to be road-tested, but you don't have to stop at 50 to achieve this, and you shouldn't have to wait a year or longer for your turn, because road-tests simply don't have to take that long.

Next, if you want help with planning, the scheme's paid facilitators have already been identified from within government services, so there's not much choice there. This isn't to say that the facilitators will not be helpful, just that they may not be the people that the participants would choose, if given the choice.

Next, you can't employ your own staff. So again, this sets limits on choice and control. While not everyone will want to run their own support crew, it's important to have that option there. We can reasonably assume that at least some people will want to do this, but they're not allowed. Bye bye again to choice and control.

Finally, there is the matter of what you can spend the funds on. In the better examples of Individualised Funding in practice, you have a very wide choice about how you can use the funds, as long as you don't spend the money on gambling or something illegal. Unfortunately, the SA initiative states that you can't spend the funds on anything that people would normally buy with their own money. This is a profoundly unhelpful limitation,and will hinder people trying to build creative and personalised arrangements in their lives.

So it seems that the SA Individualised Funding initiative is the choice and control you have when you don't have choice and control. Time to celebrate. Claytons, anyone?