2010 Election Promises Part 3

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

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

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

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

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

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

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

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

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

2010 Election Promises Part 2

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

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

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

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

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

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

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

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

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

2010 Election Promises Part 1

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

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

On 17 July Labor announced an initiative involving the major cinema chains delivering more accessible cinema experiences to people living with disability.  Click here for the announcement, which is at the FaHCSIA website so i guess it counts as “already going to happen” as opposed to “this is what we’ll do if we get in”. 

It includes up to $470,000 over four years to the four major cinema chains to build technical capacity,  fast tracking audio description and captioning, together with support for the Accessible Cinemas Advisory Group, which includes a number of disability voices.

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

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

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

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

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

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

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

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

Flying the Standard Part Three: restriction vs safeguarding

This blog posting is the third instalment relating to the current review in Australia of the National Standards for Disability Services.  This posting looks at a second big example of problematic language within the current Standards - the phrase ‘least restrictive way’. 

 

The Standards say that:

 

Each person with a disability receives a service which is designed to meet...his or her individual needs and personal goals.

How good does that sound?  Pretty good actually. The only problem is that I've taken a phrase out and replaced it with some dots.  Let's now put that phrase back in, and look at what the Standards actually say:

Each person with a disability receives a service which is designed to meet, in the least restrictive way, his or her individual needs and personal goals.

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

Ouch!

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

I can imagine some readers of this blog wishing to remind me that there are people living with disability who live in very dramatic circumstances where there is a greater risk of harm to themselves or others, and that the other people in that person's life, or service agencies, need to act decisively to manage the situation.  I understand that pressure.  But if our main response to such situations is to apply restriction to manage the problem, then we may indeed be reducing the immediate risk of self-harm, harm to others, material damage etc, but are we actually doing anything to support that person to move on from such distressing circumstances?  I have encountered and worked with people whose circumstances have resulted in their being restricted for years, without ever being given an authentic, sustained opportunity to move on.

In this regard, the current wording of the Standards has not helped, because the Standards have endorsed the possibility of restriction in the first place.

We have to move away from such language.  

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

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

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

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

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

Each person living with disability is supported, including the thoughtful use of safeguards where these are needed, to move towards a life of choice and citizenhood.

What do you think? Can you do better?  Post a comment with your own suggestions.  If you feel strongly about the importance of safeguarding rather than restriction, do make your views known because the Standards are being reviewed by government right now.  You have until 18 July, so click here to go to the government website.

Flying the Standard Part Two: being clear on the context

This is the second instalment looking at the review of the National Standards for Disability Services.  The first instalment asserted that the updated Standards (given that the current ones have failed) be anchored upon the goal of citizenhood.  This blog posting (the second of at least three instalments) looks at the language of the Standards. 

For as long as I can remember there has been a debate about the words that are used to describe issues relating to disability.  We have seen some helpful developments, such as a move away from stark terminology like ‘handicap’ and ‘retardation’.  Meanwhile, we still encounter the views of those who might argue that there is far too much political correctness (often shortened to ‘PC’) and that we should just call it like it is. 

However, it is through such accusations of being too ‘PC’ that people can trivialise what is in fact an issue fundamental to the way we support people who are particularly vulnerable.  This is because our language is the main way we transact our ideas about the world in which we live, it’s the main way we describe concepts.  If our choice of words is poor, then people’s understanding of, and response to, the concept will out of focus.

This is exactly what has happened in the language of the current National Standards for Disability Services.  The remainder of this blog posting looks at a big example of this, and the third instalment in this series on the Standards looks at another big example.

First, let’s look at this word service.  It’s right there in the title of the Standards, and its use provides the context for the Standards.  As the title suggests, the Standards relate to service.

I’m not a big fan of the use of the word service because it is an agency-centric word.  What I mean by this is that the word service focuses attention on the service agency because it is the agency that is delivering the service.  It conveys the impression that disability services are an end in themselves, and that the only important things in the life of a person living with disability are the formal services that the person receives.  If we persist in using the word ‘service’ in our national standards, this means we persist in seeing people living with disability as service recipients only, where the sum of their life is measured in terms of access to formal services.

By the way, I know that many people will be reading this and thinking, “hang on, service is important, it’s just that we‘re not getting enough (or any) service”.  I understand that view, and I’m not saying that getting a decent service isn’t important.  I’m saying that a person should be viewed in terms of the life they wish to lead, not by their dependency on formal services.  As such, the Standards should be setting the mark for how people are supported to move towards a life of choice and inclusion, not how agencies deliver formal services.

Unfortunately this is what the Standards create by using the word service, and this in turn is supplemented by the use of the word consumer throughout the Standards document, language that reinforces the idea that service, and its consumption, is the only important thing for a person living with disability.

As an alternative, I prefer the term support.  This is a much better word because it is person-centric.  What I mean by this is that when we support a person, it is with a view to that person moving towards something that is personally important.  And the only way we can properly support a person is by getting to know that person and what it is the person wishes to move towards in her/his life.  In this way, the person’s life and the person’s goals (instead of the work of the service agency) become the context for the support.

This distinction between service and support may seem to some people to be a minor distinction, but the words we choose can and do set the scene for an entire service system, so it’s important to get those words right.  If we only ever think about formal services in our language, then that becomes the context for the way we assist people, and this in turn sets the context for people’s lives.  Whereas if we talk about support, then that covers a range of ways that people might be assisted into a good life, including and beyond formal services.

So how about we change the name of the National Standards for Disability Services, to something like National Standards for Supporting People Living with Disability?  Such language would perhaps allow us to get a little closer to ensuring that service agencies are offering authentic support to move people towards a richer life.

Next instalment – the standards and restriction.

Flying the Standard Part One: being a citizen

As you may know, there is currently a review of the National Standards for Disability Services. The current Standards are: 1) service access, 2) individual needs, 3) decision making and choice, 4) privacy, dignity and confidentiality, 5) participation and integration, 6) valued status, 7) complaints and disputes, and 8) service management.

The Standards ( click here to read more about them) were implemented in 1993 with the goal of ensuring Commonwealth and State funded disability services have a positive impact in people’s lives. The Standards provide the framework for disability service provision expectations and apparently the Standards focus on ensuring services are addressing the principles and objectives of Commonwealth and State/Territory legislation, including assisting people to integrate into community, assisting people to achieve positive outcomes, such as Independence, and promoting in the community a positive image of people and enhancing their self-esteem (taken from the Commonwealth Disability Services Act 1986, which you can access by clicking here).

Well, if that’s true then the Standards have failed. Failed, failed, failed. Just reading the Shut Out report (click here to read it) is more than enough evidence of that. Seventeen years on from the introduction of the Standards, there are many, many Australians living with disability who have not been assisted to integrate into community, who have not been supported to achieve positive outcomes such as independence, and where there are not sufficient positive images within community of people living with disability as valued citizens.

If the whole point of the Standards is to shape disability support services, it begs the question why billions of dollars of public funds have continued to be handed out to service agencies if they are not meeting the standards. And if that remark invokes outrage among service providers who believe they are meeting the Standards, how come this wasn’t reflected in Shut Out, and how come there are still many thousands of Australians living with disability whose service arrangements mean they remain separated from community life, are not achieving ordinary life outcomes, and are still regularly encountering discrimination?

So it’s about time the Standards were reviewed.

Let’s start from the beginning. A standard is a basis for comparison, a reference point against which activities can be evaluated. It follows that a standard should somehow encapsulate the driving values of the enterprise. It is therefore important that disability service standards are based on a strong value base and associated vision.

The main reason why we set aside public funds for people living with disability (and people who are ageing, and people living with mental health issues, and people who are homeless, etc) is to provide a response to the increased vulnerability of their circumstances, so that they can get on with their lives on a similar basis to other people.

In its essence this is about being a citizen.

Therefore, the updated Standards must be based on the driving value that people living with disability are citizens first and foremost, and therefore belong at the core of our communities.  This means that the Standards must have proper regard for the rights of people living with disability to live active, inclusive lives in community, and to promote and uphold this 'citizenhood' in the design and commissioning of disability supports.

Further, this means that those disability support arrangements must ensure that people living with disability have genuine opportunity to access, and maintain, presence within a welcoming local community, and to enjoy active participation in mainstream community life alongside non-disabled people.

To provide for anything less would mean that our disability service settings are undermining the right of people living with disability to live a decent, valued life.

And if we wish to uphold the notion of people as citizens, then we need to be clear about what it means to be a citizen, and how we might support people to take up that role. Achieving this degree of clarity will make it easier to then set meaningful, compelling and accountable standards for the support that people seek.

In pursuit of such clarity, the Julia Farr Association (the organisation behind Purple Orange) recently published its Model of Citizenhood Support, which has five domains that we think are critical for people to move into citizenhood roles (if you’re interested in knowing more about our Model of Citizenhood Support, get in touch). 

We found our model useful when thinking about the current standards, because it helped us spot certain problems. For example, the current Standards are not explicit about fellowship and connection with other people (one of the domains in our Model of Citizenhood Support). Some might argue that the current disability service Standard 5 (participation and integration) delivers that, but I disagree. Undertaking an activity in the community does not automatically bring a person into rich association with other citizens. In fact, a lot of so-called community-based services actually result in people living with disability spending their time primarily alongside other people living with disability, and where the nature of their connection into community life is as though they are moving through community in a hermetically-sealed opaque bubble. Such opaque bubbles include disability-specific transport, sheltered workshops, group outings, unnecessary substitute decision-making and one-sided relationships with paid support workers, all of which serve to insulate the person from more natural, organic community connections.

If we are to replace such sham experiences with more authentic connections, this must be reflected in the Standards.  So let us hope that the review of the Standards brings forth a more compelling accountable framework for supporting people into ordinary valued lives.  Otherwise, as a society we are in danger of failing people living with disability well into the future.

The second installment on this topic looks at the language within the Standards, and how the words we choose can critically misshape entire service systems.


In the meantime, you have until Sunday 18 July 2010 to make a submission to the national consultation on the National Standards for Disability Services, so now is the time to give your views.  You can click here to find out how.

Active Support - what's in the box?

Active Support is a methodology for supporting people in their daily lives.  A number of Australian organisations are now using it, including in South Australia where it came to my attention.  Based on the delivery of a boxful of staff training and organisational supports, Active Support appears to have brought more direct personal support to people living with disability and correspondingly increased levels of engagement in their daily activities.  This has been particularly noticeable for people living in group home arrangements.

At risk of over-simplifying the approach, it seems to me that Active Support involves the careful orchestration of personal support to assist a person to engage in routine activities of daily life.  Intuitively, one might expect it to be based on a good understanding of the person, her/his current and potential capacities, and her/his preferences about the running of daily life.

When I first heard about Active Support, and how organisations were spending money to have it, my first reaction was to wonder why folk would pay for something that is so intuitive - isn’t this what any support agency is meant to be doing anyway?  Isn’t the whole point of disability funding to provide support to people, and if we assume that activities are involved then that support must be active, surely.  

So I thought there were three possible scenarios here.  The first is that I don’t know what I’m talking about and so should quieten down.  This is entirely possible but if I assume this scenario then this blog posting stops here and that would be irritating.  The second possible scenario is that agencies could or should be doing this stuff anyway, it is part of the fundamentals of providing support, and they’re paying for it because they’re gullible and they really believe that the emperor is looking mighty fine in his new clothes.  But I don’t care for that scenario because it is not safe to assume that support agencies are this reckless with their resources.  

The third scenario is that they are paying for the training because they have a concern that their current activities aren’t sufficiently supportive or active, and that they can do better.  So for the sake of discussion let’s go with that scenario.  In which case, I ask myself why public funds are being spent on those agencies if they’re not currently actively supporting people (refer to earlier comment about this being the point of disability funding surely).  But then I remind myself that at least some of the agencies rolling out Active Support are earnest in their endeavours and are seeking to do the right thing.  So I counsel myself that maybe this whole Active Support thing is way more complicated than I thought.  But then I chastise myself for such a thought.  There is nothing inherently complicated in the idea that a person living with disability seeking assistance to accomplish certain tasks, would expect the support agency (surely, logically, obviously, intuitively) to be focused on how best to assist the person with those tasks.   At this point I stopped having a conversation with myself (which was proving distracting for the people nearby) and I went and had a lie-down.  

The lie-down may have helped because I then had a thought about what the issue might be.  It comes down to context, which I will examine in three ways – service context, lifestyle context and organisational context.

The first one, a biggie, is service context. The Active Support methodology seems to have originally emerged in group homes, and it is the inescapable fact of group home living that sets the context for Active Support.  The inescapable fact is that a group home is a group home, where people are being served as a group.  As hopefully most of us now accept, any arrangement that serves a group of vulnerable people together is far more likely to struggle in providing individualised (also known as personalised)  support.  Staffing levels in such enterprises aren’t necessarily geared to deliver personalised supports because they are framed by the funding available.  Such funding in effect says that the funder is not prepared to pay for the full costs of someone being supported to live in their own place.  One can only assume therefore that funders think it reasonable to co-locate several people together in a house even if they have nothing in common other than their common experiences of vulnerability.

Being blighted by these circumstances, the practices in such settings have indeed been far from personalised, and have left the recipients with day-after-day of passive sameness.  And for some recipients this is likely to have contributed to the emergence of ‘behaviours of concern’ to express their discontent or to otherwise break the monotony.  These in turn have resulted in yet tighter arrangements still characterised by unrelenting sameness but with now with even greater restriction.  I don’t know about you, but I can imagine developing a rich repertoire of ‘behaviours of concern’ if my days were characterised by doing nothing in a house with people I didn’t choose to live with or be supported by.

And so emerged the methodology of Active Support, to somehow break the cycle of the passivity, the sameness, and the associated consequences.  Given it is a methodology that appears to have at its heart a focus on the person and her participation in daily life, It is perhaps of little surprise that Active Support has delivered positive results in the lives of some people living in group settings.

If so, it is encouraging that some support agencies are growing their capacity in this methodology.  But if the service context is shared living (such as group homes), then this fact must place constraints on the range of things that the person can be actively supported to do, because of the staff support model and because of the inescapable need for compromise that comes with sharing a house with people.  So just because we apply a methodology like Active Support and get positive results, it should not lessen the need for ongoing enquiry into how it is that a person living with disability should have to endure group home living.

Next, let us look at lifestyle context.   My hunch is that the Active Support methodology is most often applied to those tasks that are often summarised as ‘activities of daily living’.  This includes things like personal grooming/healthcare, laundry, food planning and preparation, housework etc.  These tasks are necessary for all of us, and without attending to them we make it harder for ourselves to accomplish other things we are interested in.  However they do not in themselves represent the pinnacles of our daily achievement.  While some of us may have a cleaning day each week, such work does not epitomise the meaning of our daily lives.  We do other stuff – like work, leisure, education, fellowship – and these activities, and the meaning we each attach to them, are much more likely to characterise our ongoing journey of personhood and citizenhood.  If the only activities attracting Active Support are those to do with household tasks, then we are creating a fiction that the lifestyles of people living with disability amount to personal and domestic tasks and not much else.  This faulty, centuries-old attitude already prevails in many parts of our community without support agencies then adding to the myth.

Therefore, while it is inherently sensible to assist a person to grow her capacity in personal and household tasks (an important rite of passage for anyone moving into adulthood, as any parent of teenagers will tell you), support agencies need to attend to those other activities in a person’s daily life that will visibly place her in roles that are valued by the wider community.

Finally we can think about the organisational context.  The implementation of Active Support is characterised by a training program on the skills and documentation involved, which are then introduced into the service settings.  However, if this is all that happens, then this approach will not necessarily change the nature of the relationship that the staff person has with the person being assisted, and the person may still be viewed as a recipient rather than a partner, which is the opposite of what the Active Support methodology seems to be about.  It may also be viewed as a burdensome bureaucracy by some staff.

To avoid this, the organisational context needs to include a heavy dose of values-driven leadership, where everyone in a leadership role believes in, and consistently upholds in their practice, a deeply-held value that the person living with a disability as an active partner in their own support and is the architect of their own lifestyle.

If an organisation feels, thinks and acts this way, then there is more likely to be authentic environment for personalised support.  If so, Active Support is just one in a range of person-centred methodologies that can be intentionally applied to assist the person to towards a good life, and always with a deep commitment to the person’s humanity and worth.