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.