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.

Flying the Standard Part Three: restriction vs safeguarding

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

 

The Standards say that:

 

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

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

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

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

Ouch!

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

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

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

We have to move away from such language.  

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

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

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

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

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

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

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

Flying the Standard Part Two: being clear on the context

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

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

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

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

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

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

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

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

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

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

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

Next instalment – the standards and restriction.

Flying the Standard Part One: being a citizen

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

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

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

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

So it’s about time the Standards were reviewed.

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

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

In its essence this is about being a citizen.

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

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

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

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

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

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

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

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


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