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.

Imagine if, Imagine how, Imagine when

Mindful that a number of the over 2,500 readers of this blog will have previously reflected on the issue of group living, I think it important to regularly reflect on its problematic nature. So stay with me on this, and do post your comments if I’m missing something here.

The problem with congregated support is that the very nature of it makes it much harder to achieve authentic choice for people, and much harder to engage in community life in natural ways. No matter how a support agency might try to dress it up as a service model steeped in choice and inclusion (and having run several support agencies in different countries where congregate support was a feature of at least some of our services, I have done my fair share of such self-deception) the fact is that when a bunch of people are required to live together there are inevitable compromises.  Sometimes in life, such compromise is freely entered into.  For example, many of us might have experienced shared living (and therefore a commitment to compromise) at various points in our lives, be it with family, with co-students, with flatmates, with partners.  However, we do not typically make longer term decisions to live with people we didn’t know previously or without a deeper mutual commitment to share our lives.  

If such imposed compromise of shared living weren’t enough, group homes have an extra constraint – the staffing arrangements.  Most of us don’t have a procession of people coming through our daily lives who are paid to be there, and for whom our homes represent their workplaces.  And most of us don’t have our daily choices shaped (and curtailed) by the relative availability of paid support staff, which is the inevitable consequence when there are less staff than people being supported.  The fact that the paid support staff have to share their efforts across a number of people means that some choices cannot be entertained because  a staff person cannot be in more than one place at a time.

Why on earth might we think that such arrangements are acceptable?  After all, for those of us who don’t live in such constricted arrangements, we are unlikely to nominate such arrangements as our first choice should our circumstances change.  Why do we persist in making congregate support the main way by which we support vulnerable people?   

One answer, the easiest answer to come up with, is money, or rather the lack of it.  Issues of recurrent funding for support is an oft-cited reason given by jurisdictions for placing vulnerable people in shared living arrangements, be it a group home, nursing home, or other ‘supported residential facility’.  In my 25 years working alongside vulnerable people, I can’t ever recall a meeting between government and support agencies where the issue of funding didn’t come up. When we focus primarily on the issue of funding, we are making a fundamental mistake.  Funding is not the main barrier lying between vulnerable people and a good life.  A much larger issue that is stopping us from assisting vulnerable people into lives of choice and citizenhood is a lack of imagination.  When presented with the challenge of supporting vulnerable people into rich lives, and with funding that seems modest, our typical solution is to group people together.  This is profoundly unimaginative, so much so that it works against the values of choice and inclusion that most support agencies are meant to be subscribing to, and which characterise the personal standards that most of us set in our own lives.  

If we authentically subscribe to the values of choice and inclusion, then funding levels need present no barrier.  I have recently visited with agencies, in both urban and rural areas, who are accomplishing highly effective individualised supports, without congregate living, and without congregate doing, and without rich seams of public funding.  

Among other things, what such agencies have in common is an unshakeable commitment to choice and inclusion, the capacity to imagine how this might be achieved despite the dramas of public funding, and the gumption to take action now. 

I believe that there are many support agencies who have a sincere desire to be helpful in the lives of vulnerable people, and will happily subscribe to the values of choice and inclusion.  Yet those same agencies often report they are constrained in their efforts by what the public funder is prepared to pay for. In which case, I strongly encourage those agencies to take a deeper look at the meaning of choice and inclusion, and how these can be achieved in ways that are uncomplicated by group responses.

I am very happy to talk more with any support agency interested in exploring now they might become more imaginative in supporting vulnerable people into rich lives of choice and citizenhood.

Cultural exchange about cultural change

Continuing the In Control International theme of my previous posting, the two-day international meeting covered topics that are relevant across a range of cultures. Amongst other things, the meeting covered:

• cultural change (in terms of service planners, agency staff and the broader community)
• planning and renewal
• safeguards
• the connection between rights and responsibilities in people's lives
• the changing role of service agencies
• the challenges of collaboration.

I can easily imagine that these topics will be of intense interest to people living with disability, families, service agency staff, and government staff. If you would like more information, or want to hear more about any of these topics on this blog, then do get in touch, either via the comments section of this blog or via the email address on our website.


For this post I'm focusing on the first one - culture change. The word 'culture' is used in a number of ways. It can be something you grow in a petri dish especially if you haven't cleaned under the kitchen sink in a while. It can be used to describe ethnicity, for example when you visit a different country or community and encounter people who have a different shared experience to you. Or it can be used to describe the arts, where apparently you are getting culture when you watch ballet.


It can also be used to describe the main features of people's attitudes and behaviours in an organisation or system. This version of 'culture' covers the shared ideas about how work gets done It's about "the way we do things around here". From the international conversation it was clear to me that culture change is an important consideration for every country represented at the meeting, and why wouldn't it be?  People live in every country, and people are complicated, especially when they organise themselves into groups.  This is because rules and guidelines have to be figured out so that everyone knows what to do.  Usually those rules and guidelines are designed to reflect the values and attitudes and goals that brought about the group enterprise in the first place. 

Unfortunately, unless people are particularly vigilant, this connection between values, attitudes and goals and the associated rules and guidelines can, over time, become less clear.  People follow the rules and guidelines without checking back why they were installed in the first place, and changes happen to the rules and guidelines without checking back to see if such changes make sense in terms of the original goals and values.  this often happens with the best of intentions, for example when new opportunities come along.

Eventually, the prevailing rules and guidelines that are driving people's behaviour have very little connection with the original values, attitudes and goals, and become simply "the way we do things around here".  Just like the proverbial dog that gets wagged by its tail, the rules and guidelines install a new set of values, that people may not have chosen in the first place had they known it would come to this.

Across all kinds of human endeavour, many organisations and systems have this problem.  This includes organisations and systems that support vulnerable people.  For example, I have encountered a number of organisations that began from a value base of wanting to see vulnerable people have a fairer go at what life has to offer.  Move forward a number of years and we find those same organisations providing services that in fact have largely achieved the opposite, by separating people from the wider community, rendering them invisible and much more vulnerable to neglect and abuse.  This is happening today, as we speak, probably at an organisation near where you live.

Yet, despite the increasing signals that we are failing vulnerable people in our communities, we seem to struggle to achieve widespread positive change.  Why?  Culture.   Within our support systems for vulnerable people, the majority of behaviours uphold the status quo, such is the strength of 'the way we do things around here'.  

If we are to achieve genuine helpful changes in the lives of vulnerable people, then paradigms like Individualised funding, National Disability Insurance, Person-Centred Planning, Active Support, and a multitude of others, will not have the impact we might hope for, because by themselves they won't necessarily change culture. 

Culture is changed when enough people make it known that 'the way we do things around here' is not good enough.  Culture also changes when those people in positions of power, responsibility and leadership, have the courage to recognise that the systems they administer are failing people.

These people include the leaders within service agencies, and the leaders within governments, and the leaders within communities.  Such people can play a pivotal role in changing culture.

This is the essence of leadership.  If we are agreed that vulnerable people have the right to choice and control in their lives, to be active contributors to their communities, to grow into rich, valued lives, then every leader in every support system needs to guide their resources towards this, to 'change the way we do things around here'.  They need to do this today and tomorrow and the next day, and so on until it's done.

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.

Providers and Personalisation: the quick and the dead

Birmingham UK

As increasing numbers of people now understand, and regardless of the extent of availability of Individualised Funding, there is nothing stopping any service provider, better termed 'support agencies', from moving towards genuinely personalised services.  Nothing.

I've spent a fair bit of time in the UK talking with various support agencies who are currently working out how best to transition their services in line with a national government directive for disability support to be personalised, and with the target that 33% of the disability population have personalised support arrangements by 2011.

What is clear is that there are, of course, a number of practical considerations that a support agency must work through.  Once the agency has had its moment of clarity about doing the right thing, it is then prudent for that agency to undertake an audit of organisational capacity, especially in terms of strategic thinking, change management and, critically, organisational culture change.  Those UK support agencies who began such work early have been the ones who have enjoyed the smoothest transition so far.

These are important considerations. An agency needs to be able to think and act strategically if it is to move intentionally towards a vision that sees people living with disability receiving the support needed to live a good life.  Similarly, an agency needs to be able to not only technically manage a change process but to also have faith in it.  Such faith will come from the heartfelt belief that a person living with disability should have personal authority in his life, can participate as a citizen in the life of his community, and has potential to grow and learn.  These are true of all people living with disability.  If a support agency struggles with these ideas, it really needs to get out of the business.

And, an agency needs to understand what organisational culture is, how it comes about, what sustains it, and how it can be changed for the better.  The main way that support agencies assist people is through human power, so an agency's leadership has to be able to build the right culture among its people.

And then there is the relationship between the agency and each person it supports.  If the agency is to truly transform to personalised arrangements it has to reflect on its relationship with the people who use its services.  If you work with a support agency that hasn't begun to reflect on its relationship with its customers, then try these initial questions, asked from the perspective of the person living with disability: 

1. How are you getting to know me?
2. What do you know about what is important to me and what I want to achieve at this point in my life?
3. How are you tailoring your available resources so that I am supported with the above, rather than just served as part of a group?
4. How are you arranging safeguards (if we're all agreed that I need them) so that I can safely navigate the normal risks of life?
5. What steps are you taking to match my support needs with staff who share similar interests to me, and do I get a say in which staff support me?
6. What steps are you taking to assist me to build natural community connections and relationships, so that my daily life is not dominated by the presence of paid workers or other people living with disability?
7. How do you know that your support is truly assisting me to live the life i want?

So, seven questions that can help a support agency begin to think through its relationship with the people it seeks to assist.

If you are a person living with disability (or a family member or friend of someone less able to speak up), try putting these questions to your support agency.  I'd be very interested to hear what response you get.

And if you work with a support agency, then Julia Farr Association would be very happy to assist you work through this stuff.  Because support agencies that are committed to delivering highly personalised support, are themselves worth supporting.