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.

To Protect and Serve?

image by Sanja Gjenero, accessed via http://www.sxc.hu

Recent media coverage on issues of justice and mistreatment triggered the next two blog postings.  This first posting, below, was published earlier this week on The Punch and on the ABC's Ramp Up.  A second posting, looking at measures such as regulators and mandatory reporting, will be out soon.

The Adelaide Advertiser story (Monday 27 June 2011, ‘Justice Disabled’) highlighted the apparent difficulties in securing convictions where a person living with intellectual disability has been the victim of an alleged sexual assault.

Some alleged assaults take place where people are receiving care.  This warrants closer examination, given the reasonable expectation that human services are meant to reduce risk of harm, not add to it.  Also, the greater the degree of disability a person lives with, the more likely it is the person will be living in a formal service arrangement, sharing with other persons living with similar degrees of disability and served by staff.

These arrangements typically involve people served in group settings, away from the view of the wider community.  To the casual observer, such arrangements might appear competent at safeguarding people’s wellbeing, with features like individual private bedrooms, qualified staff , and supervision by registered professionals.  The arrangements might also include an activities program, active monitoring, and guidelines that permit liberty-reducing practices, such as restraint or seclusion, as a last resort only. 

However, such arrangements do not guarantee protection from neglect, abuse or assault.  In fact, they can achieve the opposite.  When people are required to live together for no other reason than their degree of disability (or other disadvantage), it creates a situation where people are living on top of each other with very little to do.  It is not unknown for this to sometimes result in assaults between residents, a tragic situation that brings its own complexity in justice and yet could be largely avoided if we stopped herding people like cattle into group services.

image by Konrado Fedorczyko, accessed via http://www.sxc.hu

Worse, these group arrangements render the person vulnerable to the attitudes and outlook of staff, who have the capacity to exercise great control over the lives of those they are meant to serve.  The extent to which this can go badly wrong was illustrated in a UK Panorama investigation 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 (to view, go to http://www.youtube.com/watch?v=8yuPvUHsx1Y&amp).

We cannot safely assume such practices are any less discoverable in Australia.  The less  we think about people living with disability as individual human beings, the less personalised will be the support arrangements, separating people physically and culturally from community life.  This can leave at least some people with no one in their lives other than paid staff and other people living with disability.   

That is wrong.

If we really want to tackle the problem of unprosecuted assaults on people living with disability, we must first discontinue the practice of grouping people living with disability on the basis of service convenience, be this a group home, a sheltered workshop or a special education class, and instead build personalised supports that bring people fully and visibly into community life. 

More than this, If we truly value diversity and shared wellbeing (which is the whole point of communities), we each need to take up our responsibility to welcome people living with disability fully into our neighbourhoods and our workplaces.  This is not an issue of rights but something more important - values.

Turning now to problems of justice, the main reason reported in the Advertiser is that the alleged victim, because of disability, might be an unreliable witness.  So what?  Witness testimony from anyone can be an unreliable source of evidence in criminal proceedings, and there are other sources of evidence that can assist prosecution.  There is no reason why an assault case involving a person living with severe disability, whose capacity to recall might be compromised, should be treated any differently from a case involving a frail older person, a child, or a victim who was incapacitated by alcohol or other substances at the time of the alleged offence.

Image by michaelaw, accessed via http://www.sxc.hu

A second issue is consent, whether the victim was a willing participant at the time of the alleged assault and changed their mind subsequently.  Many adults, from all walks of life, may have comparable stories of hindsight-driven regret, especially if the experience had turned out to be embarrassing, deeply disappointing, or even frightening.  Just like anyone else, a person living with disability is not immune to the possibility of such experience.  However, it would be a great mistake for us to assume that this is more likely to have happened simply because the person happened to live with disability. A far more important move, especially where the person is more vulnerable in their decision-making, would be to assure the availability to the person of good, accessible information and supports about consent and related matters.  

The bottom line?  Let‘s not further disable people by placing them in ‘support arrangements’ that do more harm than good.  Instead, let’s uphold the individual person’s right to an ordinary valued life, and assure the presence of safeguards so we do not fail people when the going gets tough.

Congregation & Community, Positions & Interests

In South Australia there has been media attention on the living conditions at the Strathmont Centre, one of the few remaining 'older-style' congregate support facilities in South Australia (as distinct from 'newer style' congregate support facilities such as community-based group homes).  Following this attention, the SA Government minister for disability, the Social Inclusion Commissioner, and others, visited the venue and confirmed that the venue is severely run-down and anything but homely.  Most recently, the SA government has released an evaluation report that examined the circumstances of the first thirty people to leave the Strathmont campus as part of a project initiated in 2005. Echoing a plethora of similar reports elsewhere over the years, this report identified a number of helpful benefits that emerge when people move away from large congregate care facilities.

When such material becomes public, it presents the opportunity for commentators to give their views, and often these views focus on the matter of 'institution versus community'.  Some commentaries also include assessment of those who hold different views.  For example, I have witnessed assertions on the one hand that the salaried professional advocates, experts and academics don't know what it's really like to be, or to support, someone living with severe disability, and on the other hand that people who believe in the merits of congregate settings are misguided and pushed to that rose-tinted view by an uncaring system that leaves them exhausted, frustrated and desperate.  Such views can often be taken personally and can drive some people to hold on to their particular position come what may.  This may not advance the life chances for people living with disability.

It may help to take a moment to focus on the two main differing points of view in this debate.  These are, (1) that congregate services (institutions big and small, including 'villages' and group homes) are places that will always struggle to offer truly personalised supports and that people should have a life in the community, and (2) the opposite view, that community is not working for many, who are unsupported, isolated and lonely, and that well-run congregate services can give those people belonging and fellowship.

Even with the advent of the United Nations Convention on the Rights of Persons with Disabilities, this division of view has remained.  Supporters of community emphasise the UN assertion of inclusion, on the basis that presence and participation within the wider community will bring people into richer lives.  Supporters of congregate services emphasise the UN assertion of choice, on the perception this includes the right to choose to live with others in a congregate setting.

The focus of the debate is about where people live and the support they receive there.  The aversion to congregate services comes from a concern that such places remove people from community and render them more vulnerable to reduced choice, making it harder to connect into ordinary relationships with other citizens in the community, and increasing the risk of neglect and abuse.  There have been many reports that have uncovered such problems, often through highly troubling accounts of people's experiences.

In contrast, the aversion to community services comes from a concern that 'idealists' want to place people into communities that don't want them or otherwise don't adequately support them, which leaves people in lonely, isolated and unsupported settings, making it harder to connect with other people living with disability, and leaving their families to pick up the pieces.  I am again aware of the stories about when community supports have not been thought through properly for a particular person.

For me, the bottom line is this: if we want to see people living with disability move into a rich, valued life, then we are failing many people regardless of their service setting because people are not getting properly designed, personalised, responsive services.  It may help, therefore, to avoid the tendency to argue a particular position about service setting, and instead look at the underlying interests, because therein lies the possibility of a meeting of minds and hearts. 

For example, I can easily imagine that wherever people place themselves in the debate, there will likely be agreement about what we don't want for people living with disability. May I suggest the following: we don't want people to be diminished, neglected, abused, lonely, or their life potential wasted.  Hopefully you agree.  If we can agree we don't want such things to happen, then we are likely to agree that this must be reflected in a person's support arrangements.

Following on from this, we might, as concerned fellow human beings, find agreement on what do want for any particular person living with disability. For example, some of the things we might find it easier to agree on are that the person is happy, is welcomed by our community, that the person has and makes genuine choices, that the person keeps learning and growing throughout their life, that the person is loved for who they are, that the person is inherently valued by their neighbourhood and community as a human being.  Hopefully you agree. 

For all of these, there will be people who say they can reliably be delivered in community settings, and there will be people who say they can reliably be delivered in congregate settings. So how might we assess this?

Well, let's look again to the United Nations.  The Convention on the Rights of Persons with Disabilities is an attempt to codify such interests, to formalise the expectation that every person living with disability gets a fair go at a decent life.  Naturally this includes choosing where to live, and who to live with, but it includes so much more, setting out clear expectations about people's active roles in community life, and of belonging in society. 

An additional problem with congregate services, however intense the efforts might be to genuinely personalise the supports therein, is that their nature creates stigma, where the wider community, the other folk in the neighbourhood, view the service as 'special', as something 'other' than an ordinary household, and conclude they themselves have no significant role to play as neighbours, acquaintances, friends, that their involvement is not needed because the occupants are being cared for.  Some local people might get involved but this is often in a more formal way, as a 'volunteer', with a role description and a reporting relationship.  This is not the same thing as being a welcoming neighbour and fellow citizen.

Perhaps the biggest issue that leads people to want congregate supports for their loved one might be their belief that the wider community is not interested in the lives of people living with severe disability, that it doesn't care, and that true inclusion is pie-in-the-sky. In which case, the congregate service is viewed as a safe harbour, a sanctuary from an uncaring world, a refuge from fighting a battle can never be won.

I understand how it is that some people can arrive at this view, but there is a deep irony here, because any lack of interest or welcome from the wider community has in no small part been created by the fact that many people living with significant disability have received services that have taken them away from ordinary community life.  And each time we set up a new 'village' or group home we are reinforcing this.

I refuse to believe this is how it has to be.  Communities are founded on, and sustained by, a sense of mutuality, of fellowship, of interdependence, of belonging. We all have inherent value as human beings, which means we all have a place in our community, by our presence and by our participation.  If we believe that people living with disability have inherent value as human beings (and to not believe this would be to see people living with disability as something less than human), then we need to find ways to make sure each and every person is welcomed and included in the life of our communities. 

There is therefore an urgent need for a stronger way of understanding and measuring the essence of choice and the essence of inclusion, so that people's support arrangements can be properly held accountable, and replaced if they are failing people.

However, achieving this means a level of activity that is far beyond the consideration of where someone lives.  This predominant consideration sells people short, either by separating them into congregate service settings that cocoon people in a dubious artificial world that is ultimately wasteful of that person's life and their inherent value, or by placing people into community accommodation and wrongly assuming that such a move by itself will take people into a richer life.

The answer lies in the proper attention to personalised supports, in the context of an ordinary valued life, and in creating the circumstances where the person has a growing personal network of people who give their time freely, not as 'volunteers' but as friends, acquaintances, associates, fellow citizens with an authentic regard for the person. This is not pie-in-the-sky, regardless of the degree of disability a person lives with.  I've seen it.

After 25 years of working in human services in a number of countries, and witnessing the experiences of people living with disability who are dear to me, I am absolutely convinced that good, authentic personalised supports are much more likely to take people into a rich, valued life than less-personalised congregate supports. 

If we want the best for people living with disability, then we must strive for authentic personalised supports, anchored on people's inherent value as human beings and a vision of an ordinary valued life.  We have to sharpen our imagination and redouble our efforts so that our communities uncover and uphold this inherent value.  Otherwise, it will remain the case that many families are left to cope without adequate supports, and that many people living with disability remain in a world of institutional thinking and at risk of being treated in ways that suggest anything but 'support' or 'service'.

imagine getting real

In a recent blog posting I talked about the problematic nature of congregate supports.  Among other comments, I received one from a parent, Ronni, who said this:

“Yes Robbi you are missing something. You have not asked those dedicated parents who provide the day to day care for the severely disabled. As much as we love our children we will wear out eventually and like you we deserve a holiday occasionally. Congregate living is an economic reality and does not have to be a bad thing per se ala http://www.camphill.ie/What-is-Camphill-p-6.html.
You harp on about what the rest of us would choose. Well my son is not like you or I. He is a very sociable being and will never be able to use technology to communicate - he needs 24/7 care and face to face interaction. I cannot provide this for the rest of his life and nor should I be expected to. Time to leave cloud cuckoo land. If you want a taste of reality you are welcome to come stay at my place for a month. You would learn the full meaning of compromise because your life would certainly change!”

I am very grateful to Ronni for taking the time to comment, and I’ve placed the comment into this new blog posting because I wanted to make sure people didn’t miss it - Ronni’s comment raises important points and made me stop and think.  In essence, Ronni’s challenge to me is to get real.

I am not a parent of a disabled child so I do not have the experience that Ronni and other parents have.  What I can understand is that many parents provide extensive and unremitting day-to-day support for their disabled son or daughter, and that over time this can lead to parents wanting to consider other ways that their family member can be supported.  

I talk a lot about personalised, individualised, socially inclusive options, and I much prefer these to congregate options.  This is because I have seen many services in many countries over the years, and the better services have typically involved people being supported in highly personalised ways within community (and not necessarily with a high price tag on the support). 

I realise that such options are not always available in every location.  Meanwhile, parents will want to choose the best option available for their son or daughter.  Ronni directs me to a website about the Camphill communities.  I have had past involvement with Camphill communities, and to a lesser extent L’Arche, and I recall an ambience characterised by a welcoming, family atmosphere and a culture of acceptance and contribution.  

Interestingly, the Camphill movement emerged at a time, in the late 1930s, when large scale congregate services were the main service option for vulnerable people who could not be supported at home.  By contrast, Camphill’s message was about the innate potential of people and how this might be nurtured.  The message is about the inherent worth of each person as a unique being.

What such endeavours appear to have in common is a deep respect for people living with disability, a commitment to live by family/community/spiritual values and a desire to support people to reach their potential.  I can see how such services will appear attractive and practical.  If I was a parent of a child living with disability and I needed another way for my son/daughter to be supported, I would want the best option available; if it were true there were no individualised options available or conceivable, then I can imagine I might seek more information about a setting like a Camphill community.

Unfortunately, because of the general history of service provision, augmented by the habits of government funding in many jurisdictions, most congregate services do not adequately reflect each person’s uniqueness, and instead people are installed into pre-ordained service programs and settings.  I have spent many years working with, or with the consequences of, congregate services.  From these experiences, I believe the best, most personalised, congregate services are still not as good as the best, most personalised, community-based services I’ve seen. 

I am also convinced, from my own experiences and from what has been reported, that vulnerable people (including people living with severe disability, people living with enduring mental illness, and frail older people) are at the greatest risk of neglect and abuse when they are placed in settings that render them separate from, and invisible to, the wider community.

Our work at JFA has been about trying to find, or imagine, better supports for people living with disability than those currently available.  As part of this work, I have been involved in, or otherwise seen, arrangements where a person living with severe disability is being well-supported without having to use congregated settings.  Such opportunities are not yet available in all locations but we can hope that one day soon they will be, so that there is authentic choice.   What is true is that there are plenty of examples available of how a person living with severe disability can be well-supported in highly individualised ways, so the only things that are stopping any jurisdiction, any community, from creating such choices is a lack of imagination and a lack of determination.

In the meantime, I can understand any parent being sceptical about the possibility of such arrangements, given the current reality of daily life.   Therefore, I think one of the issues for us as a community is that many people living with disability, and many parents, and many professionals, may not be aware of some of the promising and progressive advances that have been demonstrated in individualised supports.  Further, it seems to me vitally important that family members do have good information about such possibilities before making a decision about future support arrangements for a dependent loved-one.

At JFA we hope to illuminate more of these helpful advances.  Building on the well-received workshops we hosted in 2010, we are currently planning a number of events for 2011 that will provide greater visibility for some of these developments, and hopefully will provide useful material to people living with disability, the family members involved in their lives, and professionals.  

The reason we do this is because we want to help ensure that people and families are supported to get information about the progress here and elsewhere and how it shows what might be possible in people’s lives.  Otherwise, many people may find themselves making big decisions in the absence of such information.  It falls to all of us to do what we can to make sure that people living with disability, and the families involved in their lives, are assisted to assess, and access, the best possible options for support.

An increasing number of families are writing books about their discovery of such options and the resulting positive impact in the life of their family member.  For anyone interested, we have some titles available for loan from our office.  And if you have been inspired by someone’s book about what has been possible in their own life or that of a loved one, then let us know and if we don't have that title we’ll track down copies for people to loan.

In conclusion, I do not set out to dispute the role of families who are in the lives of dependent family members living with disability, or to criticise the decisions they might make about the support arrangements for their loved one, or indeed the choices that a person living with disaiblity might make for herself or himself.  Instead I hope that I can make my contribution to ensuring that people have better information about what might be possible, and where such options authentically safeguard that person's value as a human being, and uphold and advance the person's uniqueness and potential.

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.

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)