open letter about confidence in the ACT Disability and Education Minister

Dear Chief Minister

I see from the front page of the Canberra Times yesterday (see Farrer Primary School special needs student fencing under question) that some others share my view that there are multiple instances of ACT schools putting autistic students in enclosures/cages. Clearly, there is something of a culture of enclosing/restraining/caging autistic students in ACT schools. This is why we do not believe the Minister's claim that one such event can be described accurately as "an isolated incident".

Nor is the cage practice "unfathomable" as someone from the disability sector suggested in the article.

Parents of autistic children require that their children are safe, so if they believe a cage is the best option for their child then that's what they will choose. It's not hard to understand ... certainly not "unfathomable".

However, the current Senate Inquiry has heard numerous experts explain that there are options other than restraint/cages, such as using behavioural approaches for tackling behavioural issues with autistic students. Most experts suggest that behavioural methods should be tried first, before physical and chemical restraints.

The other option widely used by schools is exclusion. When an autistic child shows unwanted behaviour, some schools call the child parents to take them away. The child is denied education and too often an associated parent may be denied economic participation in the community. But if that is the most appropriate option for a family living with ASD, the so be it.

For my part, I understand that "no one approach suits all children with ASD" (a phrase that Ms Burch and her staff keep telling me as if they think I don't already understand). I think we (the ACT community) should ensure all approaches that might work are available as options so that autistic students/children are likely to be able to access appropriate methods for them as individuals.

I believe personally that scientific evidence is pretty clear that behavioural science (often called ABA) should be available as an option in such circumstances.

I object to Ms Burch and her staff saying "no one approach suits all children with ASD" hence "We do not actually use the ABA intervention method ..." (see http://www.hansard.act.gov.au/hansard/2009/comms/estimates21.pdf): their refusal to offer, even vigorously campaign against the use of, a method recognised has having strong (perhaps the strongest) scientific support does not make sense.

My personal position is not as Ms Burch suggests, "weathered to applied behaviour analysis"; it is that various evidence-based practices should be available for autistic children so families can choose what works. Families should be able to choose approaches and supports that they believe best suit their autistic child. Given the evidence base, behavioural science aught to be one of the available options. The ACT Government should not misinform people and deny them access to a particular scientific approach that has a strong (maybe the strongest) evidence base. Apparently, Ms Burch and her Directorate do not agree.

Ms Burch has always chosen to misunderstand or misrepresent my positions, both personal and the position due to my roles in autism advocacy, in these matters.

Recently, Ms Burch reportedly said of me in my advocacy role, "he does not speak on behalf or represent the entire autism community". I'm not sure what Ms Burch expects in terms of representation. I head grassroots organisations at both the Territory and the National level. Representing the complex views of a community associated with a wide spectrum (it's in the name) disorder challenging: there are varied views in the ASD community. Autism Aspergers Advocacy Australia's website attempts to explain the challenge:

A4 does not represent a particular view. It aims to represent the views of its members. Some members have contrary views about issues, in which case A4 makes it clear to Government that there are varied views.

SOfASD has the same approach.

Governments complain that autism advocates don't come to them with simple propositions. They seem to expect that I will drive the ASD community to consensus ... which I note is something that political parties rarely achieve. It takes considerable effort, resources, charisma (which I don't have) and time to do that. While Governments have this expectation, they do not contribute to the processes needed to achieve broad community consensus. I believe Government expectations are unreasonable.

It is certainly true that passing a vote of no confidence in a minister is not representative of many very scared and vulnerable members of the ASD community. However, those members did not cast a vote at all on this (or most other matters). We get their opinions on matters in other ways ... we take their views on services & support matters very seriously. These people are a challenge to represent: none the less, we try to ensure through our systemic advocacy that as many of the services and supports that they need reach them. Disability service and support systems for autistic people should not serve only those who insist loudly on getting services ... if that's how services work, then many of the most needy miss out.

In relation to ABA, there are members of the ASD community and of the organisations that I was elected to lead who oppose, even strongly oppose, the use of ABA. The organisations cannot take a position that says ABA should be both available and not available; it's a simple contradiction. The best we can do to represent the ASD community is to advocate that ABA be available as an option and ensure that people can make informed choice about whether it meets their needs. It is my understanding that the vast majority of the ASD community accept this compromise. It's about respecting each other's views. For some reason, Minister Burch refuses/fails to understand our position. I don't know how I/we can explain it better. 

I take my role in representing organisations and their memberships very seriously. If she really thinks I'm not representing my constituency properly, I would like to hear how I and these organisations are failing to do so, though I doubt the Minister will tell me.

I am concerned that Minister Burch is not communicating with the ASD community. If she is communicating with any section of the ASD community, then I see very little evidence of it. I am concerned that significant parts of the ASD community are not being heard by the ACT Government. 

Autism is a distinct disability type that has distinct needs, needs that traditionally have not been met. Please, understand that the number of people diagnosed with ASD has grown enormously. Autism is now the biggest primary disability type in the NDIS. Also, for a range of reasons autism is poorly understood by much of the general disability sector. It is essential that autism stakeholders are involved in policy making that affects people living with autism. 
 

Clinical practice in behavioural science involves powerful techniques and, as with any clinical practice, there are serious risks involved poor or bad practice. It is crucial that clinicians are properly trained, standards are maintained and a strong community of clinical practice oversees services. Unfortunately, this is not the case in Australia ... and it's well past time Governments in Australia did something about it.

It seems that the Education and Training Directorate recognises that some behaviour support might be appropriate. It created a position and is recruiting staff. I'd be interested to know what stakeholder engagement is regarded as appropriate in this. And whether this is appropriate while the Government's Expert Panel is still underway. 

It is extremely risky for the Education Directorate to recruit people for roles that should involve professional clinical practice without suitable professional support - see the recently advertised ETD role (see http://sofasd.org.au/d7/sites/default/files/SchoolLeaderC-02163.pdf and http://sofasd.org.au/d7/sites/default/files/ACTAdvert.tiff_.pdf). Note, the job description does not require formal knowledge or experience of behaviour science, or participation in a relevant community of clinical practice.

I've attached some material below that might help you understand recent autism-related events in the ACT.

I am not confident that the current Minister for Education and Disability will take appropriate steps to address the concerns we have raised, here and recently. I ask you to take steps to improve services and supports for autistic students in the ACT.

regards
Bob Buckley

2/10/2015

 

The story "The Different Children of Condact" was attached.


Dear Mr Buckley

Thank you for your email of 2 October 2015 which is currently receiving attention.

Regards

Cassia Payne
Office of the Chief Minister

2/10/2015