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.

Targets and Outcomes

As many readers of this blog might know, Individualised Funding has been gaining momentum, among other places, in the United Kingdom.  having had the chance to see the methodology road-tested in a number of areas around the country, the UK Government made a strategic commitment to Personal Budgets and there is an expectation all local authorities in England transform their social services arrangements so people have the option of a Personal  Budget.

A target was set, that 30% of eligible adults be in receipt of a Personal Budget by the end of March this year.

An Association of Directors of Adult Social Services (ADASS) report published last month by UK-based Think Local Act Personal Partnership shows this target has been reached, with nearly 340,000 adults accessing a personalised budget.  This represents more than one third of all eligible adults, with the highest number of personalised budgets going to older people.

No doubt spurred on by this momentum (which included the figures doubling in the last 12 months), a new target has been set, where 100% of eligible adults have access to a personalised budgets by 2013.


Also at the end of last month, UK Charity In Control Partnerships and Lancaster University completed their report on the experiences of 2000 people using a Personalised Budget. The survey found that personal budgets had an overall positive effect on people's lives, notably in terms of being supported with dignity and respect, staying as independent as they want to be, being in control of their support, and getting that support when they need it.  Similarly, family members reported benefits in terms of more support, better life quality, and increased well-being.

What is also clear from the report is that people's experiences varied depending on the approaches that local government took in their area.  For example,the degree of positive impact was affected by the following:

• the extent that people knew exactly how much their personal budget was
• the extent that people knew how the personal budget was managed on their behalf
• the extent that people felt their personal views were reflected in their support plan
• the ease of access to information
• understanding the degree of flexibility possible
• the extent of government support to assist the person through the self-direction process

What we can take from this is that a personal budget can make a difference, but that this is not guaranteed.  Two issues come to mind.  The first issue is that local authorities vary in their approach, depending on whether they think their glass is half-full (as in, "look at the possibilities for assisting people to have really personalised supports") or half-empty (as in "how do we make sure the money doesn't get stuffed up").  from where I sit, it looks like you have a better chance of budget flexibility and greater informed choice, and therefore better outcomes, if your local government is really engaged by the possibilities of a personalisation methodology.

The second issue is one of scale. The earlier work in the UK on personal budgets was conducted on a relatively small scale, in terms of the number of people involved.  Now that national targets have been crafted, there is a sense of haste to get a large number of people onto personalised budgets; just in the last 12 months, 170,000 people were signed up to a personal budget. That's a stampede, and one that is set to continue for another two years.  Under such circumstances, the challenge is to maintain an authentic personalised approach, otherwise it just becomes a numbers game where people are rushed through a series of pseudo-choices so that a package can be signed off and a box ticked.  And that's how a really important idea can be stuffed up.

I again quote Wilagan's Fact:

"A good idea is at its most vulnerable during implementation".

So let's make sure the targets we set don't obscure our view of the true outcomes.  The target that everyone has access to a personal budget can be a potent building block for personalisation.  However it is not the outcome in and of itself.  The outcome is more likely to be that each person gets a fair go at an ordinary valued life. In the rush to hit target, we may miss the point of its existence.