Safeguards don't always

Photo by Sebastian Fissore http://www.sebafissore.com.ar/ accessed via http://www.sxc.hu/

This is the second of two posts on the topic of abuse and safeguards.

Safety and safeguards are rarely far from people's thoughts about supports for people who live with additional vulnerability.  Interest is heightened when dreadful things happen, be it at home, on the street, or in the arms of a service provider.  If the magnitude is sufficient, this can result in a jurisdiction putting formal arrangements in place to help protect people.

For example, as part of its Disability Act 2006 the Government of Victoria set up the Office of the Senior Practitioner to regulate the use of restrictive support practices so that people's rights are safeguarded. The Act also provided for a Community Visitors Program, where trained volunteers can inspect disability services without notice.

Also in 2006, the Government of Queensland established a Disability Services Act that included measures aimed at protecting people, including approval processes for service agencies and investigation arrangements.

In what was obviously a busy year for legislative action on safeguarding, 2006 saw the UK Government pass the Safeguarding Vulnerable Groups Act, as a response to something unspeakably evil, establishing the Independent Safeguarding Authority, whose role is to help ensure that unsuitable people are not unleashed on vulnerable people.   

In South Australia, there is currently a Bill before Parliament relating to Mandatory Reporting, designed to help ensure that anything approaching neglect, abuse or assault is quickly brought to the attention of the authorities who can then act to protect the person living with disability.

The above are several different examples of how jurisdictions can take formal steps to provide safeguards for people living with additional vulnerability.  Such measures are often taken as the king-hit (irony intended) response to people's concerns about vulnerability and safeguards, and are designed to give people confidence that matters are in hand.

Unfortunately, there are at least two problems with such approaches.  The first problem is that they are not necessarily successful at protecting people with the greatest vulnerability.  To illustrate this, I refer again to the UK, and the recent Panorama investigation (mentioned in the previous posting) that revealed abuse and assaults perpetrated by staff on residents living with disability, in a state-of-the-art, high-cost ‘specialist’ service supervised by registered professionals.  You can view the program in 4 parts here, but be warned that it includes scenes you may find deeply upsetting.

The investigation took place earlier this year. What is particularly depressing about the deplorable practice uncovered is that it took place despite the presence of the above-mentioned Independent Safeguarding Authority.  In short, the safeguarding authority didn't.

It gets worse. The UK also has the Care Quality Commission (CQC), whose role is to ensure that "people get better care".  This includes a a wide-ranging set of powers and duties, with the commitment that "if we think that people’s rights or safety are at risk, we will act quickly".  A senior staff member working at the service agency investigated by Panorama was so unsettled by the practices he saw that he contacted the CQC.  Unfortunately, the CQC failed its own commitment.  It did not act quickly, and in fact did not act at all, until Panorama shared their undercover research with several million people.

So what we have here is a situation where an approved service agency, working within a contemporary building and using professional staff, and designed to provide a specialist response to people with allegedly high needs, was responsible for a despicable catalogue of neglect, abuse and assault, and all this despite the presence of a range of formal legislative and regulatory safeguards.

The lesson from this is that formal safeguarding arrangements by themselves do not necessarily reduce the risk of vulnerable people being exploited.  

image by Banzai Creative

As a society it is of course important we continue exploring how we might best legislate and regulate to advance and uphold people's well being.  However, such measures are not a substitute for the work we all need to do to support people into ordinary valued lives.  This is because a good life is not achieved simply by reducing the chances of bad things happening.  If that is the main tactic, then that life will seem at best sterile and at worst empty.  Instead, the primary tactic must be how to increase the chances of good things happening in the person';s life, not just reducing the chances of bad things happening.

As mentioned in the previous posting, a starting point for this approach will be the deeply felt values about people living ordinary valued lives, and how this is then translated into expectations about how each citizen behaves, not just in terms of legislation, regulations, and specialist funding, but in terms of mainstream education, public transportation, buildings and spaces, ordinary employment, and neighbourhoods that are welcoming.

The better we support a person living with disability to take up their rightful place in the heart of our communities, the more likely it is that there will be natural safeguards present in that person's life - family, neighbours, acquaintances, friends, co-workers.  After all, these are sources of natural safeguards for any citizen, so why should it be any less so for a citizen living with disability.

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.

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.

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!