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.