community commentary on The Box

The recent story about a "coffin-like box" constructed for an autistic student outraged much of the community. Media reports are available:

Following are some of the comments from the community ...


Autistic Advocates condemn seclusion in box by leading service provider

The Autistic Self Advocacy Network of Australia and New Zealand is saddened, shocked and dismayed at the news that ASPECT has used a locked box to restrain Autistic people. ASPECT claims to be Australia’s largest service provider for Autistic people. ASAN AUNZ Chair Katharine Annear says “this compounds our concern that these practices could be insidiously wide spread within its sites across several states.”

Evidence from enquiries into abuse across the nation demonstrate that abuse of Autistics in the form of restraint and seclusion is common place. Katharine Annear says “This is unacceptable and in response we can only call for criminal charges to be considered in each case as no other deterrent seems to be effective.”

We applaud the individual whistleblowers who act to expose this abuse. These people activate their own moral compass in the face of restrictive and punitive bureaucracy and the very real threat of losing their jobs.

The protection of Autistic people is everybody’s business and closed doors need to be flung open in the face of oppression.

The peak body for Autistic Self Advocacy, ASAN AUNZ is an Autistic led membership based organisation with members across Australia and New Zealand.

from http://linkis.com/www.asan-au.org/2015/zuVP7


Ban cruel treatment

Unfortunately we are  unsurprised by another story about the abuse of people with disabilities in expert "care" (The Age, 5/10). Is Aspect seriously expecting us to believe that the use of a "box" – built to "calm" students with autism and in a public area – was unknown to management?

Why wasn't more attention paid to the legal threats made by senior Aspect staff to the whistleblower, Karen Burgess? I hope we do not have a Yooralla-style cover-up with a sham investigation that might result in a rap on the knuckles and a promise to do better. It is an insult to people with disabilities and those who put their jobs on the line trying to protect them.

It is time the state government and the Education Minister made it clear that inhumane and degrading treatment of students with autism will not be tolerated and that they will "put people first" as they promised.

Peter Cross, United Voices of People with Disabilities, Nunawading

from http://www.theage.com.au/comment/the-age-letters/americans-living-in-fear-of-each-other-20151005-gk1bvs.html


Box to 'calm' students highlights urgent need to overhaul disability regime

It is difficult to imagine what was going through the minds of staff at a specialist centre for autistic people in Heatherton when last year they set about building a two-metre-high wooden box, fitted with a metal lock. It might have been intended as a calming zone for autistic clients, but it resembled a brutal coffin.

The box was dismantled in April, after the manager of the centre complained to regional managers and her concerns were finally conveyed to the head office of Autism Spectrum Australia (Aspect). Aspect had taken over the business at Heatherton a few months earlier. It could be said the operation of that centre was in transition. But while Aspect says the lock-up box was never used, the fact that anyone considered it to be an appropriate management tool is cause for serious concern about the broader industry's standards of care for people with disabilities.

Similar complaints about restraints being used on people with autism or other forms of disability have emerged this year, most notably in Canberra, where a school principal was sacked for approving a steel cage to hold an autistic student. That all sorts of forcible restraints are being used in disability institutions and, indeed, in the mainstream school system is deeply troubling.

Certainly some children and adults can present with extremely challenging and potentially dangerous behaviour, and ensuring their safety and that of others is essential. But are restraints the answer? In our view, forcible restraints and lock-ups do not meet best-practice ideals for managing people with difficult behaviour. They are demeaning, potentially terrifying and counter-productive, and represent a denial of human rights. We do understand there may be extreme situations that warrant unusual levels of intervention, but restraints must never become a normal response to managing challenging behaviour.

These matters represent only the tip of the iceberg when it comes to dealing with some of the most vulnerable in our community. Victoria's Ombudsman, Deborah Glass, is making a valiant effort to understand how abuse is reported in the state's multi-pronged disability sector and what is done. She issued a damning report in June (the first of a two-part analysis) highlighting serious deficiencies in almost all aspects of the existing system. Indeed, "system" is hardly an appropriate term.

Ms Glass found there was no single entity – not the Department of Health and Human Services, not the Disability Services Commissioner, nor any other office – that had specific responsibility for dealing with abuse complaints in the disability sector, for reviewing or investigating incidents, or promoting measures to prevent abuse.

While the DSC, Laurie Harkin, can conduct investigations, he considers his role is "educative" rather than policing. He has preferred to resolve disputes amicably. Indeed, Mr Harkin had not initiated a single investigation into any complaints or incident reports received by his office from 2010 until this year. Ms Glass said while Mr Harkin had powers to investigate, he was "loath" to do so. And the relatively few reviews of incidents or complaints received by either the DSC or the Office of the Public Advocate implied "the vast majority of allegations of abuse receive no independent oversight".

That is a damning assessment of the system. Yet Ms Glass's report pointed to much worse. Her intention was to determine the gravity of abuse; its occurrence and severity. She found there was no single source of data, no centralised or even consistent manner of reporting incidents or handling complaints, and the manner of dealing with abuse allegations varied from agency to agency, service provider to service provider.

This represents a pathetic abrogation of our collective duty. We urge the Premier to initiate a thorough review, and overhaul, of this non-system. Ms Glass's two reports will be an excellent place to start.

from http://www.theage.com.au/comment/the-age-editorial/box-to-calm-students-highlights-urgent-need-to-overhaul-disability-regime-20151005-gk1pn3.html

 


How and why did the 'box' incident occur?Illustration: Michael Leunig

Illustration: Michael Leunig Illustration: Michael Leunig

DISABILITY SERVICES

How and why did the 'box' incident occur?

Another example of abhorrent "service delivery" to people with disability (The Age, 5/10). This time a coffin-shaped box constructed for the restraint and seclusion of people who attended a day program run by Aspect. What is also repetitive is the organisation's response. The two employees identified as being responsible were stood down. However, organisations cannot distance themselves from responsibility. They must critically examine why and how a serious incident like this occurred. They must also ensure they have a workplace culture which values and respects people with disability. The coffin-like box was in existence for at least four months. Why did it take so long for someone to say this is not OK? If we want to stop institutional violence towards people with disability, it is imperative we address workplace culture.

Stephanie Gotlib, Collingwood

Try walking a mile in the heroic carers' shoes

There has been much ado about restraint "cages" and cries for retribution against those who approved them. Noble sentiments abound in respect of human rights, best practice and unnecessary force, but not a word on alternative solutions. No advice on what to do with an out-of-control individual whose irrational state is putting his/her safety at risk, as well as that of the carer and other group members. No advice on the wellbeing of this group and potentially other groups as carers rush off to deal with the crisis, with no quantifiable time frame identified for them to perform a very difficult task – with no physical intervention, of course. (Have you ever tried reasoning with a toddler in a tantrum?)Try walking a mile in the heroic carers' shoes

No consideration is given to how this affects the motivation and mental health of carers who are trying heroically, while everybody else is busy removing the few levers they might have, to get the situation under control. Sure, it is not the client's "fault" for having a bad episode, but that does not help the person who has to deal with it.

Ill health and severe disability are unlucky outcomes in the lottery of life. Those heroes who take on the challenge of helping such persons, providing respite for the sanity of their equally unlucky families, should be supported. Given that we will never fund 24/7, one-on-one care, a realistic and pragmatic approach needs to be formulated, enforced and supported. But if you have not tried doing the frontline yourself, perhaps a stint in the carers' shoes may stiffen your resolve to support those who do. Less waffle, more funding, more realism. Please.

John Patrick, Wangaratta

Curbing the contagious effect of stress

By addressing the stress experienced by disability workers, a positive psychological change takes place in group homes where residents exhibit "behaviours of concern" (violent and aggressive behaviour). Mindfulness stress reduction has been successfully trialled by the Department of Health and Human Services, Yooralla and Monash University. The program's success was published in two international psychology magazines.

The results and the improvements for the residents occurred by lowering the stress levels of disability workers who understood, for the first time, that many residents were simply reacting to their stress. Stress reduction courses are well developed, cost effective and readily available. Monash University and the University of Melbourne are world leaders in this field. Mindfulness stress reduction has also been embraced by multinational companies, such as Google, Microsoft and Apple, as well as the Australian Institute of Sport, AFL clubs and leading schools. Why is it denied to disability workers?

Rob Walter, Horsham

What do autists think?

It is gratifying to see outrage on behalf of autistic people, but maybe stop to consider the situation from our point of view. The "time out" cage in Canberra (The Age, 3/4/15), with bars and a lock in a brightly lit room was abusive. That was locking up a child to avoid dealing with the symptoms instead of the problem.

This seclusion box at Aspect appears to have been the polar opposite. Was it isolated from other students? Not that I could see. Was there a lock on it? Not that I could see. And it sounded like the sensory needs of autists were at the centre of its design.

The sound proofing and lightproofing made it dark and quiet ... to keep the pain of light, movement, chaos and noise out, and give a child who is undergoing sensory distress a chance to breathe and calm down. I could see autists lining up to get a chance to use this space.

I, as an adult autist, have a need to be alone in the dark and quiet at times, and so do these children. This outrage, while well-intended, seems to be reflexive, and I wonder if anyone has actually stopped to ask an autist what we think.

David Staples, Elsternwick

from http://www.theage.com.au/comment/the-age-letters/how-and-why-did-the-box-incident-occur-20151006-gk281e.html