DISABILITY ROYAL COMMISSION PUBLIC HEARING #6: THE USE OF PSYCHOTROPIC MEDICATION, BEHAVIOUR SUPPORT AND BEHAVIOURS OF CONCERN | DAY 3 SUMMARY

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VMIAC Publications

For more information on our position on Seclusion and Restraint, download our Seclusion Report #2 and our Seclusion and Restraint Position Statement here.

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VMIAC’s Day 3 Summary of Public Hearing 6

This is our summary of day 3 of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability’s Public Hearing #6: Psychotropic medication, behaviour support and behaviours of concern.

Yesterday was the third day of the Royal Commission’s 4-day public hearing into the impact of psychotropic medication, behaviour support and behaviours of concerns for people living with a psychosocial disability. We were live tweeting throughout the event in collaboration with People With Disabilities Australia. Click on the image below to read the full thread.

Overall Summary

The statements in day 3 were discussing more varied topics such as mental illness developed through trauma for those with intellectual disabilities, dual disability, containment and human rights.

Similar to the last two days, there were no witnesses with lived experience of any psychosocial disability, including intellectual disabilities, with witnesses coming from carer, academic and medical backgrounds. Nonetheless, many issues were raised that are important for all people living with psychosocial disabilities and mental or emotional distress.

We also heard some extremely positive things during the hearing, including the following quotes:

  • Choice in our lives involves risk.” Dariane McLean, when discussing how medical professionals justify containment practices.
  • This is about changing the hands of power.” Honourable Roslyn Atkinson AO, when referring to the language used in relation to people with psychosocial disabilities and mental and emotional distress.
  • It’s the substance of the matter that counts. Choosing a different label isn’t solving much.” Hon. Sackville when discussing people with psychosocial disability.
  • ‘a backpack label that people can carry with them for their entire lives’ Professor Leanne Dowse when discusses people with intellectual disability, however This is an accurate metaphor for mental illness diagnoses.

Other themes highlighted during the third day of the hearing that are relevant for all people living with psychosocial disabilities and mental or emotional distress include:

Symbiotic relationship between intellectual disability and mental or emotional distress.

We heard about the symbiotic relationship between intellectual and physical disability, and mental or emotional distress. Quite often, traumatic experiences relating to treatment within the system for people with intellectual disabilities results in them experiencing mental or emotional distress, such as PTSD, anxiety, depression and suicidal ideation.

It is also true that people with intellectual disability are more likely to have a mental health issue. This led to discussions around people living with dual disabilities. Witnesses discussed the stigma around psychosocial disabilities and the lack of research funding to support people living with them. It appears that dual disabilities are at the bottom of the hierarchy of importance.

Lastly, due to legislation and regulation changes, people with dual disability are falling between the gaps as both the mental health and disability governmental department are denying accountability. As one witness stated, ‘it’s a game of ping pong’.

Human rights of restrictive practices

It was positive to hear the use of restrictive practices described as ‘restricting people’s liberty’. Within a human rights context, restrictive practices do deprive people of liberty, especially considering these people are already vulnerable, under-supported, and most likely coerced. But these practices still go ahead as some professionals believe there is still a need for it. Unfortunately, if there is still a need, even in a small capacity, the practices will still continue to be overused and abused.

Person-centered, lived experience, multidisciplinary support

We heard about the benefits of person-centered alternative therapies, led by people with lived experience, as well as multidisciplinary teams focusing on recovery and support. This was supported by both a carer and an academic.

Containment

We heard statements from witnesses that have insight into the traumatic and damaging effects of containment restrictive practices, similar to the effects we have heard at VMIAC of seclusion practices on mental health acute wards. Read our paper on Seclusion and Restraint here, as well as a video describing one consumer’s seclusion experience here. The trauma experiences shared by some witnesses caused mental and emotional distress in the person living with intellectual disability, including PTSD, anxiety and suicidal ideation.

Restrictive practices, including containment and seclusion, are mostly traumatic and harmful long-term for the person living with a psychosocial disability. As well as this, it also removes any autonomy or choice from that person. One witness stated, ‘choice in our lives involves risk,’ so ‘risk’ should not be used as a justification for containment or seclusion.

Prescription providers

We heard, yet again, that GPs often diagnose dubious mental ‘illnesses’ to prescribe behaviour controlling psychotropics medications so that it isn’t considered ‘chemical restraint’ – statements we have heard everyday of this hearing so far.

Some stated this was because GPs are frustrated by the legislative framework around chemical restraints, and that they are unhappy with the ‘bureaucratic regime’ (as one witness was quoted) associated with chemical restraint. GPs found it easier to ‘circumvent’ to diagnose mental illness where it didn’t exist, for example schizophrenia and antipsychotics.

We also heard that medications are often prescribed out of convenience and protection of the carers, rather than focusing on managing the mental or emotional distress. This was supported by statement that quite often, people living with mental or emotional distress are ‘out of sight’. Some witnesses stated that it is common for the mis-prescription of psychotropic medication starts when the families of people living with mental or emotional distress or intellectual disability reach out to medical professionals for assistance and it escalates from here. We even heard that medication was being administered on an ‘as needed’ basis by untrained support staff.

Results from one witness’ study found 96% of people on their database were subject to chemical restraint. This number is staggering, however, if the statements about prescription behaviour is correct, this is unsurprising.

We heard from one witness who is a practicing Doctor that her team does the best they can to investigate environments to identify causes of broader issues – a more holistic approach – however, she noted she has to be a doctor as well. This distinction implied that Doctor’s do not conduct this investigation in to causes of behaviour, supporting the evidence we have been hearing about the reliance on psychotropic medication.

Language

It was also positive to hear the use of language being discussed. We too often hear language used that blames the person living with mental or emotional challenges or psychosocial disability, in a stigmatising and derogatory way. One witness even stated that language used during the hearing had been unhelpful and implicative of blaming the person with disability; supported by the Commission who noted that a lot of language used is euphemistic and generalises things that have occurred generationally, from childhood trauma or due to social or environmental factors.

There were discussions around who holds the power of the language used, including questions around who should. It is clear to us that people with lived experience of mental or emotional distress, or those living with psychosocial disability should obviously have the power over the language used.

The Honourable Roslyn Atkinson AO stated, quite accurately that, “this is about changing the hands of power!”

Witnesses

Witness 13: Dariane McLean

Ms. McLean has been an Advocate at VALID for 14 years and is also a Counsellor. She was exposed to restrictions for people who live in group homes, which led her to understand the nature of restrictive practices to describe what happened to her son.

Her evidence focuses on both carer burnout, specifically within the family, as well as her son’s traumatic experiences within the system that led him to develop mental and emotional distress.

Even though her statement is from a carer perspective about a son living with intellectual disability, it also highlights the symbiotic relationship between intellectual disability and mental or emotional distress, as well as the trauma experienced through a poor unsupportive system for an already vulnerable person. She emphasises the benefits of person-centered alternative therapies, led by people with lived experience, as well as multidisciplinary teams focusing on recovery and support.

Her statement also gives insight into the traumatic and damaging effects of containment restrictive practices, similar to the effects we have heard at VMIAC of seclusion practices on mental health acute wards. Read our paper on Seclusion and Restraint here, as well as a video sharing a consumer’s seclusion experience here.

McLean’s statement shows how containment and seclusion is traumatic and harmful long term for the person living with the psychosocial disability’; and the importance of choice. As she states, ‘Choice in our lives involves risk.’

Statement

Ms. McLean professionally focuses on family therapy, specifically supporting family members who care for people with disability (PWD). Ms. McLean was asked, ‘What happens when a PWD gets the opportunity to state what they are experiencing?’ However, her response was mainly related to the family members’ distress and their lack of support

McLean explained that she has first-hand experience as a family member of a PWD. She was a ‘stay at home mum’ for her 7 children, and when her second eldest son was put into care, she decided to train as a psychiatrist alongside other qualifications she has.

Her son was diagnosed with severe autism and intellectual disability when he was 2 years old. That diagnosis hasn’t changed, but in her professional view, he now displays symptoms of PTSD. This is as a result of his accommodation and the impact on his life after he went into care.

When he was just 8 years old, he was self-harming. McLean went to speak with a specialist and received no resources on how they might best support their son. Nobody talked about Occupational Therapy and its key role around sensory issues, nor speech therapists. Her son had been prescribed a ‘plethora of medication’, including for seizures due to epilepsy and anxiety, diagnosed after he saw a teen Psychiatrist.

As her son grew, his behaviours worsened, therefore, McLean decided he should live in a group home accommodation to learn independence and have others help in day-to-day crisis. McLean discussd behaviours families have to deal with, and what their family members have to live through; ‘they’re horrific and not for the faint hearted. As a parent you are living through that day in and day out.’ We thought it was important to highlight, however, that the PWD is also living through this.

In her son’s first group home, McLean was advised not to visit for a month so her son could ‘adjust’. He was moved into a home where doors and windows were locked in each room, cupboards locked, TVs and stereos locked behind screens. There was a concrete space with high fences, which was the only place for fresh air. Ms. McLean was describing the restrictive practice of containment!

She stated, ‘it was traumatising.’ Her son destroyed his room in any way he could. He was experiencing sensory overload and server distress. He engaged in flight response.

On top of this, his co-resident expressed aggressive and ‘predatory’ behaviour, so McLean’s son was hyper-vigilant. He devised a plan for freedom and escape an abundance of times. Due to lack of funding, so no support staff in the group home were able to follow or support him each time he escaped. Therefore, their option was to call the police to send out a search party. McLean’s son was identified as a missing person by the police around 170 times whilst in this first group home.

He would walk over 100 km barefoot, highlighting his desperation to get out of containment.

After 6 years living at this group home, McLean resolved that this wasn’t working. However, the second group home was also a terrible match, so he was moved again

On his third move, he was sent to a ‘cluster facility’ in Victoria – a cluster of homes and small units located in one spot for PWD. He found living here ‘triggering’ due to so many people in his space. He escaped again and 80 missing persons cases were reported by the police.

Ms. Eastman asks an extremely important question: ‘Did they ask why he kept trying to leave?’ McLean’s response discussed how to prevent him leaving and that he needed an even more restrictive home environment, and it implied that no, this question was not asked.

McLean responds that the ‘main driver was not her son’s welfare in a creative way’ but felt the DHHS and organisations had not effectively measured the risk for her son being locked up but focused on risk to the public. This statement was quote contradictory.

Ms. Eastman asked: ‘If he is just walking what was the risk?’ McLean responded that he can sometimes cross the road in an unsafe way. But, no one in the community behaves risk-free 100% of the time. Choice in our lives involves risk.

McLean believed there was motivation from the system for her son to be contained because the police would have been applying pressure due to the amount of calls, they received.

Her son then became suicidal. He would mimic cutting his throat; he would get the knife and place on his wrist and mimic the act of it without breaking the skin. He would use a knitting machine to make cord and use those cords to make a noose. The trauma experienced became visible, and mental health issues emerged.

He was moved to his own home after McLean contacted the NDIS for an exit package, and now lives in a 3-bedroom rented unit. He currently has a great multidisciplinary team that he is the center of. He has an art mentor who personally relates to how her son experiences the world. These have been hugely beneficial for him.

She also stated that she will systemically advocate for Telehealth to remain. It removes the distress of going to appointments and allows her son to be in a safe home environment.

Witness 14: Dr Nicole (Niki) Edwards

Dr Niki Edwards is a senior lecturer at QUT. Her area of speciality is in the area of psychotropic medications and people with intellectual disability. She has examined the attitudes of psychiatrists and people with intellectual disability and conducted extensive research in Queensland.

An article written by Dr. Edwards discusses how psychotropic drugs were used in lieu of community support. A large percentage of psychiatrists agreed. It also noted that a lack of training was a significant issue, as many preferred not to treat people with intellectual disability. The issue regarding the lack of training for psychiatrists for the needs of people with disability was raised.

We heard yet again that there are cases of dubious mental ‘illness’ diagnoses from medical professionals on people with intellectual disability, so they can be prescribed medication that controls their behaviour, but not have it be considered chemical restraint. This is something we have heard often during hearing 6.

 Dr. Edwards worryingly explained that Doctors get “frustrated” with the legislative framework around chemical restraints. She continued by discussing research she conducted in 2014/2015 and found prescribers and Doctors were unhappy with the ‘bureaucratic regime’ associated with chemical restraint and found it easier to ‘circumvent’ to diagnose mental illness where it didn’t exist, for example schizophrenia and antipsychotics.

Dr Edwards’ statement explained that many people with intellectual disability didn’t have a prior history of mental ill health documented before a review of restrictive practices was required. Some medical professionals stated the diagnoses had ‘come out of the blue’.

Edwards believes this links to the rationale of prescriptions. It is more about the convenience for the carers or to protect these carers, rather than to manage a mental illness. She explained that if a PWD is diagnosed with a mental ‘illness’, they do not need a support plan or annual review. She states, ‘If they are diagnosed with a mental illness, then the PWD are out of sight.’ What we want to ask is, what does this mean for people living with mental or emotional distress in general?

She continued to share evidence regarding support plans, stating that they are expensive to develop, and there have been instances where he person with disability was not even interviewed; and often, plans would be cut and pasted from other people’s plans! How is this ethical?

Dr. Edwards stated that there is strong stigma around psychosocial disability and dual disability. It’s ‘not sexy, not attractive’, so research is bent towards biomedical cures. If you look at research funding from big national organisations, there are no funding opportunities for psychosocial disability or dual disability. She continued that funding for First Nations Persons who are living with intellectual disabilities is non-existent. There is a status here and the mental health needs of people with intellectual disabilities are ‘way down the bottom. This area isn’t acknowledged as important.’

She explained that this area is driven by a passionate few, who have personal reasons to be involved. ‘There is no one behind us, few specialists are interested in the area, and there are limited specialised centers where you can up-skill or share skills with others.’ This echoed the situation for people living with mental or emotional distress.

Dr. Edwards detailed that people with dual disability are ‘falling between the gaps!’ Mental health professionals say this should be dealt with by disability medical professionals, and vice versa. This is called diagnostic overshadowing. ‘It’s a game of ping pong between well-resourced large governmental departments.’

For persons living with dual diagnosis, psychiatrists were removed from giving services, therefore this went to a pure disability model. This had severe consequences for mental and physical health wellbeing of these people. Dr Edwards concludes that there is a need for more mental health expertise in this population.

Witness 15: Professor Leanne Dowse

University Professor Leanne Dowse has a long history in disability studies, currently holding position as Professor of Disability Studies at UNSW. She has done a lot of work around social disadvantage, and how the disability is not the reason why people are at a disadvantage, but because of social aspects.

Dowse explains that ‘complex support needs’ is used to avoid labelling people with their impairment. She believes the issued for PWD, known from the social model, is social context and that this causes their disadvantage, not their disability.

Her work started looking at people with intellectual disability in the criminal justice system. They may have had significant childhood trauma, violence abuse or neglect early in life, multiple impairments – they may also have mental health issues.

Dowse was asked, ‘Is it concerning to only look at ‘domains’?’

She responds that it is important to understand ‘domains’ as our service system is designed around them. Characteristics of people with complex needs is that they have needs across multiple domains. There is an interconnection. Pr. Dowse then went on to discuss intersectionality.

Dowse discussed the issues with terminology in general. She states, ‘We need it as we need to talk about things, but what is the shared understanding?’ She believes there are many terms being used in the Commission that aren’t helpful and are implying the issue is on the person. Something experienced by people living with mental and emotional distress also.

Dowse continues that we must focus on the person at the centre. We need to not blame or pathologise the person for what they are. She would rather speak of people with ‘support needs’, not ‘behaviours of concern’ – this phrase blames the PWD. Social and environmental factors are more important for most people, she reaffirms.

Dowse states that ‘behaviours of concern’ is a ‘backpack label’ that people can carry with them for their entire lives. This is an accurate metaphor for ‘mental illness diagnoses’. All behaviours must be contextualised and we MUST understand people’s history. This will affect them probably their entire lives, especially if they’ve had traumatising and distressing lives.

Hon. Sackville summarises with an extremely accurate statement for people with psychosocial disability: “It’s the substance of the matter that counts. Choosing a different label isn’t solving much.”

Prof. Dowse states we need to change our language and change our understanding – whether these two things are linked is not always clear. They’re all euphemisms that are trying to generalise things that have happened generationally, from childhood trauma, and in some cases, in social or anti-social ways.

Prof. Dowse asks: “Who has the power to name the terms used?” It was frustrating to not hear anyone state that surely, the people living with mental health challenges and intellectual disability should have the power.,

Prof. Dowse states: ‘It isn’t as much to do with respect and autonomy, but with power. Who has the power to name? We have to understand and privilege the voices of PWD, and within that there are people more likely to be articulate.’ Dowse then acknowledges that she does not have a disability

It was then fantastic to hear Honourable Roslyn Atkinson AO state, “This is about changing the hands of power!”

Prof. Dowse continues to discuss how behaviours of concern are not static. They happen at different times for different people, for different reasons. She explains ‘capacity building’, which is primarily within the person themselves; and the importance for us to look at the broader issues about what a support system looks like!

Prof. Dowse discusses how behaviours of concern can arise at ‘transitions’ in life. These transitions can be social, emotional, psychological, or developmental. What we see often is the pathologisation of those behaviours, compared to what people say is ‘normal’ at that time of life.

Prof. Dowse followed this by discussing the use of restrictive practices – describing it as restricting people’s liberty! These practices could be physical, environmental, and chemical – the latter has been added in recent years. She believes that the human rights context is they are a ‘deprivation of liberty!’

Dowse stated that in the perfect world, restrictive practices would not be used; however, the difference between reduction and elimination is difficult. For human rights there should be no depravity of liberty, but in practice we see restrictive practices happen and, she believes, there is some need for it.

Dowse stated: “This is very difficult and I do not have the answers. But for the Commission, this is a significant issue that needs to be thought through.’

She stated even if there is a diagnosis made of mental health issues that justify psychotropic medication prescription, there may still be behaviours of concern that are not monitored by behaviour support. “People with intellectual disability are more likely to have a mental health issue. We cannot disentangle this”. Dowse raised good questions asking, who is appropriate to do training in this area? If VMIAC were asked, we’d 100% say people with lived experience!

Witness 16: Professor Keith McVilly

Professor Keith R. McVilly PhD is a Registered Clinical Psychologist, and a professor at University of Melbourne.

McVilly expressed concerns over restrictive practices and the overuse (over-prescription) of psychotropic medications. He emphasised the difference between using psychotropics as treatment for a psychiatric condition, and psychotropics as a way to control behaviours.

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

Prof. McVilly has been involved in a study that investigates restrictive intervention and alternatives, using a restrictive interventions data system. A staggering 96% of people on the database were subject to chemical restraint.

One study showed that the main reason for using chemical restraint was to (ironically) ‘prevent harm.’ There was a high prevalence of both self-harm and harm to support staff. Medication is being used as a response to this crisis.

A very concerning finding was that medication was being administered on an “as needed” basis by support staff with no medical training! Another example of power imbalance, insufficient training, lack of accountability and ultimately, lack of autonomy!

After research was done around the importance of training, there were extremely positive results, including a reduction in both chemical restraint use and “behaviours of concern”. In the control group where training was not implemented, there was an increased use of chemical restraint trend.

Witness 17: Dr Jennifer Torr

Dr Jennifer Torr is a Consultant Psychiatrist.

Dr Torr discussed the Mental Health in Intellectual Disability Initiative – a multi-disciplinary support service that assesses and diagnoses people living with intellectual disability, and shares connections with supports.

Dr Torr stated that psychotropics are sometime used to restrain, but generally not. They are usually used to treat. This seemed a very big statement given the evidence we have heard over the last three days.

It was noticed by people online that Dr Torr was ‘getting into a bit of a language mess.’ She seemed to be justifying some forms of restraint by talking about “complexity” but did not go into specifics.

Dr Torr stated her team does the best they can to investigate environments to identify causes of broader issues – a more holistic approach – however, she notes she has to be a doctor as well. This was identified by some online as an ‘interesting distinction.’                                                                                               z

Witness 18: Courtney Wolf

Courtney Wolf is an NDIS Appeals Advocate in Queensland. Ms. Wolf’s work focusses on community based and governmental systems, whilst upholding the rights of PWD.

People come to Ms. Wolf when their NDIS plans are inadequate. She believes that supports of therapies are not adequate and that positive behaviour support plans are not always being funded in cases where people are on a chemical restraint.

Ms. Wolf went into detail about how the NDIA appeals system works. The process to get an inadequate plan changed can take 12-18 months once it reaches the AAT.

Witness 19: Simon Wardale

Simon Wardale works at Multicap, which is a High Needs Disability Support organisation.

He discussed the development of positive behavioural support plans with a collaborative approach. He stated that 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.

Wardale states that people usually contact Multicap after obtaining an NDIS plan, or funding from residual state funded programs for support. Multicap are also a provider of group homes and short and long-term based accommodation. They also have day programs and employment services.

Mr Wardale reiterated 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, and unfortunately things escalate from there. Support services can end up playing catch-up by the time they become involved.

Wardale spoke about the lack of awareness from a lot of Doctors regarding positive behavioural support options. He believes they help people who come to them in the best way they know how, which is quite often medication.

Wardale would like information about alternatives to medication to be more readily available to Doctors as an option they may recommend.

He continued by discussing the need for more training for people doing positive behaviour support plans. He states that currently there is no specific training as a requirement, but various allied health professionals are engaged to do the plans. Multicap works with practitioners to develop skills with a 3-month induction, but this is not a standard course.

Wardale concluded that, 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.

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