Thread by @PWDAustralia

Getting ready to live tweet the #DisabilityRC again this morning. Thanks to everyone following along this week. Some of the testimony is confronting to hear, and we appreciate everyone engaging with us this week.

As always, if you need support, you can reach Lifeline on 13 11 14.

You can also call the National Counselling and Referral Service, set up to support anyone impacted by anything related to the #DisabilityRC, on 1800 421 468.

@FrancesPWDA is live tweeting this morning's #DisabilityRC sessions. You can follow the thread here:

https://twitter.com/FrancesPWDA/status/1308911224978133003

Our friends @VMIAC are also providing #DisabilityRC commentary this morning:

https://twitter.com/VMIAC/status/1308912756213592065

El Gibbs @bluntshovels has joined us live tweeting this morning. You can follow her here:

https://twitter.com/bluntshovels/status/1308918982917918720

Tweeting from here from now until 1pm. The #DisabilityRC is now interviewing Prof. Leanne Dowse about the language around "behaviours of concern". Dowse is explaining why this is a problematic term when the "behaviour" is the focus rather than the context.

Commissioner Atkinson is talking about "behaviour" terminology as "respectful" euphemisms. We are not sure that euphemisms are respectful to the experiences of PWD. #DisabilityRC

Prof Dowse asking "Who has the power to do the naming?" Very good point! When we don't have the power to name our own experiences, we have a serious problem. #DisabilityRC

Prof Dowse is saying that changing language alone is not enough. PWD need to be more visible in the community and we must change the social systems that disempower and objectify PWD. #DisabilityRC

"Behaviours of concern", "Challenging behaviours". Who is being challenged? Who is concerned? This language does not centre PWD, and it reflects a system that does not centre PWD #DisabilityRC

Prof Dowse is now discussing the idea of "Positive behaviour support". She is asked "why is it important to start this at an early age?" Dowse says it's problematic to think of "behaviours of concern" as a static issue. #DisabilityRC

"Behaviours of concern" are usually a form of communication. It's important to look at *what* people are communicating as the communication is happening, rather than responding in a reactive way to people in crisis. #DisabilityRC

"Behaviours of concern are responses to environments of concern." Yes!! This!! #DisabilityRC

Dowse is being asked about the role of restrictive practices as part of positive behaviour support. #DisabilityRC Our position is that restrictive practices are an abuse of human rights. Dowse says the ideal situation is to eliminate these practices. #DisabilityRC

Dowse says the difference between regulating restrictive practice (i.e. implying it is okay in some situations), and eliminating restrictive practices is fraught. She does not suggest a solution. #DisabilityRC

Dowse suggests we do not have a system in place to support people while eliminating restrictive practices altogether. So let's make fixing the system the priority! That's why we have a #DisabilityRC

We are now talking about disentangling the regulations around what happens in group homes vs family homes. Dowse, says we have a system that is driven by the practitioner. Group home vs family home is not really relevant. #DisabilityRC

Prof Dowse is saying positive behaviour support plans are designed to be effective in all kinds of environments. Documentation should be kept regardless of living environment. #DisabilityRC

Eastman is asking about the deficit in skilled positive behaviour support practitioners. Dowse emphasises the difference between behaviour support specialists and support workers. #DisabilityRC

Dowse says behaviour support practitioners work *with* the people who on the "frontline": family, support workers, carers, etc. They don't implement the plan day to day. #DisabilityRC

Prof Dowse is saying our model of resources being assigned to the individual (NDIS funding) raises the issue of who provides funding/training for behaviour support practitioners and ensures a good pool of practitioners are available as needed. #DisabilityRC

We are in a state of transition with state services moving over to the NDIS. Regulation on restrictive practices is still with the states. Prof Dowse says the move to national regulation is going to be a lengthy and complex process. #DisabilityRC

We are now discussing problems with data collection. Dowse says we don't have any way of tracking or understanding the use of restrictive practices across hospitals, prisons, group homes, family homes, etc. We need a national approach informed by the CRPD #DisabilityRC

Dowse says we need, not just an individual approach to behaviour support, but to look at systems approaches. Looking at the systems in the group homes, the schools, etc. Individual plans might look at alternatives to living environments that are not working. #DisabilityRC

The Commissioners thank Professor Dowse for her evidence today. We now welcome Professor Keith McVilly from the University of Melbourne. #DisabilityRC

McVilly is both a researcher and clinical practitioner working with service providers and PWD. He is on the steering committee of the Melbourne Disability Institute.
findanexpert.unimelb.edu.au/profile/754213…
#DisabilityRC

McVilly has expressed concern over restrictive practices and overuse of psychotropic medications. He emphasises the difference between using psychotropics as treatment for a psychiatric condition, and psychotropics as a way to control "behaviours". #DisabilityRC

McVilly worries that use of psychotropics to control behaviour actually *prevents* the underlying causes/environmental issues from being addressed. #DisabilityRC

McVilly has been involved in a study investigating restrictive intervention and alternatives, using a the restrictive interventions data system. 96% (!!!) of people on the database were subject to *chemical* restraint. #Disability

Study shows that main reason for using chemical restraint was to "prevent harm". There was a high prevalence of both self-harm and harm to support staff. Medication is being used as a response to crisis. #DisabilityRC

A very concerning finding was that medication was being administered on an "as needed" basis by support staff with no medical training (!?!?!?!?). #DisabilityRC

McVilly is talking about a trial training program. Support workers and staff were familiarised w/human rights framework and trained in the use of a functional behaviour assessment, focussing on understanding what is being communicated, and changing the environment to meet needs.

Positive results from the training: reduction in both use of chemical restraint and "behaviours of concern". In the control group (where training was not implemented) there was actually trend of *increase* in use of chemical restraint. #DisabilityRC

Training is now being rolled out in Victoria. It's too soon to make any judgements on the effectiveness of the larger rollout. #DisabilityRC

The #DisabilityRC in now adjourned for lunch.

And we're back! Dr Jennifer Torr (Consultant Psychiatrist) now giving evidence. Dr Bennett is asking the questions. #DisabilityRC

Some background on Dr Torr: linkedin.com/in/jennifer-to… #DisabilityRC

Dr Torr discussing MHIDI, Mental Health in Intellectual Disability Initiative. A multi-disciplinary support service. Assessing and diagnosing, connection with supports. #DisabilityRC

ICD 11: international classification of disorders. DSM: Diagnostic and Statistical Manual.

Torr says both are problematic when diagnosing mental health conditions in people with intellectual disability. #DisabilityRC

There is bias toward people with "normal" verbal communication skills and capacity. There is also bias toward people whose freedoms are not restricted. Mental health conditions will present differently in someone with an intellectual disability. #DisabilityRC

Dr Torr's service does diagnosis (sometimes "undiagnosis") and medication reviews. #DisabilityRC

Dr Torr now talking about how the term "behaviour of concern" identifies a change in behaviour, but doesn't specify a particular behaviour or the wide range of potential causes. She seems a bit annoyed by the broadness of such terms.

#DisabilityRC

Dr Torr (paraphrasing) Psychotropics are sometime used to restrain, but generally not. They are usually used to treat.

This seems a very big statement given the evidence we have heard over the last three days!!

Dr Torr is now talking about the lack of time that medical professionals in the mainstream are given to properly assess patients' full circumstances and history. #DisabilityRC

Dr Torr is asked about making the distinction between therapeutic use of psychotropics or as a restrictive practice. She says she uses psychotropics to treat, and does not use psychotropics to restrict. But may use it to "constrain a situation". #DisabilityRC

She's getting into a bit of a language mess here. Seems to be justifying some forms of restraint by talking about "complexity" not a lot of specifics. #DisabilityRC

Dr Torr says her team does the best they can to investigate environments to identify causes of broader issues. A holistic approach. But she notes she has to be a doctor as well. (interesting distinction).

This concludes Dr Torr's evidence.

#DisabilityRC

Now speaking with Courtney Wolf, NDIS Appeals Advocate in Queensland. Ms Wolfs work focusses on community based and government systems, and upholding PWD rights.

#DisabilityRC

Ms Wolf has worked with the NDIS educating workers on disability as a part of everyday life. She also has two family members with disability. #DisabilityRC

Ms Wolf has formed her opinions based on her experiences as an advocate. She talks about chemical restraint being used when it should not be, and how "behaviours" are usually an expression of a need. She believes chemical restraint is being used as an easy solution. #DisabilityRC

People come to Ms Wolf when their NDIS plans are inadequate. Supports of therapies are not adequate. Positive behaviour support plans are not always being funded in cases where people are on a chemical restraint. #DisabilityRC

We're getting into the detail of how the NDIA appeals system works. The process to get an inadequate plan changed can take 12-18 months once it reaches the AAT. #DisabilityRC

It's a "monster" of a task navigating support services, behaviour support practitioners and the NDIA when funding in not in place. Availability of practitioners is still an issue even when funding is available. #DisabilityRC

Behaviour support practitioners can also pick and choose who they work with, and may choose not to work with people with complex needs, even when funding is available. #DisabilityRC

Situations can also arise where a practitioner gives recommendations that are not going to work (e.g. if a family have already tried the advice/advice doesn't work). A 2nd/3rd/4th practitioner may then needed, but the NDIA funding has already been used. #DisabilityRC

Implementation can also be an issue in remote areas, as practitioners may live very far away and face to face advice is not as accessible (this has also been an issue in Brisbane during COVID). #DisabilityRC

Attkinson asks if turnover of support staff is an issue with implementation of a positive behaviour support plan. Wolf says yes. Positive behaviour support practitioners are not necessarily available to do ongoing training with new support staff. #DisabilityRC

We're now talking about the disconnect between disability and health supports. Previously there have been collaborative supports. The NDIS has siloed services. There's a disconnect between information flowing back and forth. #DisabilityRC

It also means the buck is passed between health and disability services when it comes to providing supports with PWD stuck in the middle. #DisabilityRC

The Commissioners are thanking Ms Wolf for her evidence and the DisabilityRC is adjourning for a short break.

We are now hearing from Simon Wardale, from Multicap, High Needs Disability Support. #DisabilityRC

We're talking about developing positive behavioural support plans. Collaborative approach. One thing they do is look at data collection and report incidents to ensure people are receiving the right supports and are not being missed. #DisabilityRC

People usually contact Multicap after obtaining an NDIS plan, or funding from residual state funded programs for support. #DisabilityRC

Multicap are also a provider of group homes and short and long-term accomodation. They also have day programs and employment services. #DisabilityRC

Mr Wardale is reiterating what we have heard earlier this week, that being prescribed psychotropic medication can be a gateway to chemical restraint. Families turn to doctors as a first port of call, things escalate from there. #DisabilityRC

Support services can end up playing catch up by the time they become involved. #DisabilityRC

Wardale is talking about a lack of awareness from a lot of doctors of positive behavioural support options, and help people who come to them in the best way they know to do which is often medication. #DisabilityRC

Wardale would like information about alternatives to medication being made more available to doctors as an option they may recommend. #DisabilityRC

We're now talking about the need for more training for people doing positive behaviour support plans. We currently have no specific training as a requirement. Various allied health professionals are engaged to do the plans. #DisabilityRC

Multicap works with practitioners to develop skills with a 3 month induction, but this is not a standard course. #DisabilityRC

Wardale is talking about how, in the context of Multicap, frontline staff work in collaboration with planning practitioners. Collaboration may not be happening as effectively where support workers are not working so directly with planners. #DisabilityRC

We are now adjourned. We'll be live tweeting again from 9:30am tomorrow. Look after yourselves everyone. See you in the morning!