DISABILITY ROYAL COMMISSION PUBLIC HEARING #6: THE USE OF PSYCHOTROPIC MEDICATION, BEHAVIOUR SUPPORT AND BEHAVIOURS OF CONCERN | DAY 4 SUMMARY

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VMIAC’s Day 4 Summary of Public Hearing 6

This is our summary of day 4 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.

Overall Summary

Unfortunately, we again did not hear from one person with lived experience of psychosocial disability or mental or emotional distress, or a representative perspective of lived experience across all psychosocial disabilities. This has been commonplace throughout the entire 4-day hearing and something we will be discussing in more detail in our summary of the full hearing, due to be released soon.

Nonetheless, some issues raised during the final day of the hearing related to all people with psychosocial disabilities and mental or emotional distress.

Dubious diagnoses

Again, we heard from witnesses about how GPs are able to get around the prescriptions of psychotropic medication being classed as chemical restraint, by diagnosing dubious mental ‘illnesses’. One witness implied that it was also at the GPs discretion as to what they believed to be a medical condition versus a treatment, and that this can cause reluctance to comply with the appropriate processes for chemical restraints

People do not have a choice

We heard from witnesses about the complex process in place to resolve whether a person with disability has the capacity to make their own medical decisions. This ‘consultation’ process involves medical specialists, family and legal teams. However, the huge power imbalances were not discussed – Governmental departments, disability providers, lawyers, doctors, and regulations versus a single person living with disability. 

Reducing and eliminating restrictive practices versus the actual figures

We consistently heard from witnesses that the goal is to reduce restrictive practices, and ultimately eliminate them. But this ‘objective’ conflicted with the statistics and current processes for both adults and children that the witnesses also discussed during their statements.

Data

Data from each witness showed high levels of restrictive practices and restraint of people living with a disability, with some witnesses stating these figures were even prone to underreporting. These are worrying rates for practices that medical professionals have acknowledged breach people’s human rights. The figures included:

  • Public Guardian: 113 cases approved with 5 refused in the same time period
  • Queensland Department of Communities, Disability Services and Seniors:
    • of the 250 applications received in 2019-20, the psychotropic medication had been administered prior to approval being sought in all cases excluding 2
    • received 250 short-term applications for chemical restraint. 184 were approved, 22 withdrawn and 36 were not approved
  • Professor in the Department of Developmental Disability Neuropsychiatry at the University of NSW shared evidencethat one person living with a disability experienced 2112 unauthorised chemical restraints in a year, which is an average of 5.9 per day. This person was given 12 or 13 different medications, 2 as needed and the rest were regularly administered
  • National Disability Insurance Scheme Quality and Safeguards: there were 468 cases of unauthorised uses of chemical restraint where the person concerned was subjected to 100 or more unauthorised uses in the course of the year
  • Further figures from the Commission shared regarding restraint included:
    • 177,611 uses of chemical
    • 112,579 uses of environmental
    • 10,472 uses of mechanical
    • 1,605 uses of physical
    • 423 uses of seclusion
      • This is a total of 302,690 cases of restraint for the year

Current processes aiding abuse

On top of the terrifying statistics, the processes in place throughout the system would never ensure reduction, and ultimately elimination, of restrictive practices. If anything, they do the complete opposite.

The Public Guardian

The Public Guardian confessed there is no follow up or recorded action after a report has been made about restrictive practises; and that confidentially issues make it difficult to report on what changes and actions are actually being made to limit restrictive practices.

The Queensland Department of Communities, Disability Services and Seniors

The Queensland Department of Communities, Disability Services and Seniors are seeking to formalise a 30-day process to provide retrospective approval of chemical restraint of psychotropic medication – meaning, the medication has already been prescribed and consumed by the person living with a disability before authorisation has been sought.

Not only is this process troubling, but the Department are actually seeking to formalise it. As well as this, after approvals are refused, providers and stakeholders have to work with their GPs – who, we have already been told by multiple witnesses, hold all the power, are difficult to persuade, and cut corners to be able to administer behaviour controlling drugs even if they aren’t necessary – to reduce the use of this medication.

Again, this is extremely alarming that even after the approval is refused, the power still lies with the GP to ‘reduce’ the medication. On top of this, when asked if there are sanctions in place for unauthorised prescriptions of chemical restraint within the Queensland Department of Communities, Disability Services and Seniors, one witness stated, ‘it is made difficult as the GP isn’t part of their regulatory framework and the loved ones of the child administer the medication prescribed.’ The loopholes seem endless.

National Disability Insurance Scheme Quality and Safeguards

The National Disability Insurance Scheme Quality and SafeguardsCommissioner said that their goal is to ultimately eliminate restrictive practices, even though his written statement said that their priority was to regulate the ongoing use, and ensure any use is authorised and works in accordance with behaviour support plans.

When asked what the NDIS are specifically doing to achieve the goal of reduction and ultimate elimination, the Commissioner stated that they want to ‘information gather’, even though they have an abundance of information to understand the current trends and issues. When the latter was raised, the Commissioner gave no clear answer as to why they were not doing this already.

Within the NDIS, it was also stated that the current operation system for complaints around chemical restraint is ‘failing’, and the system in place puts the onus on the complainant. How can the ultimate goal of restrictive practice elimination be achieved if the one safeguard in place is complaints, but that system is failing?

As well as this, the current draft chemical restraints guide within the NDIS is apparently geared towards the reduction and elimination; yet, the guide achieves this by merely stating concerns over the use of medication and practice alerts.

Department of Child Safety, Women and Youth processes

Within the Department of Child Safety, Women and Youth, there is no centralised database to house information related to the prescription of psychotropic medications for children. It was agreed by both the witness and the Commission that without having a database to monitor prescriptions, it is difficult to know whether psychotropic medications are being prescribed appropriately. Therefore, this means that children could be subject to chemical restraint and the Department of Child Safety would be unaware because there is no central database to monitor it – and they know this is the case.

Regulation 13 of the NDIS was also brough to attention, which states that restrictive practices not covered by behavioural support plans – including psychotropic drugs as chemical restraint – do not require authorisation from Queensland if the person is under 18. The Queensland Department of Child Safety, Women and Youth responded that there are regulations in place that state the NDIS must maintain openness and collaboration with the parent. This implied, however, that it is down to the discretion of the NDIS as to whether they perform such ‘openness and collaboration’ when legally they can allow the administration of psychotropic medication and chemical restraint without the witness’ Department knowing.

Witnesses

Witness 20: Professor Karen Nankervis

Professor Karen Nankervis is a university professor from the University of Queensland, specialising in teaching interventions and service models for those expressing “difficult behaviour”.

Prof. Nankervis discussed the lack of training that is accessible to the carers and clinical staff working with people with disabilities, as well as the lack of support and supervision for these groups. She then discussed the quality of positive behaviour support plans. An issue highlighted was how plans are often written in technical language that is inaccessible for many of the family or support workers who are expected to implement them.

Prof. Nankervis stated that, in her opinion, Queensland has the ‘best framework’ in the country – one of the most robust safeguarding frameworks. However, we must ask, who is this framework safe and robust for? There was a lot of speculation online regarding this exact question.

Prof. Nankervis stating that reporting and monitoring the use of restrictive practices has to be in place in order for us all to work towards reducing the use of restraint, and eventually eliminating it.

The Commission highlighted the need for person-centred practices within the support sector. Ill-trained and underprepared staff are leading to inadequate support plans that are not fully understood, thus leading to harmful practice. We must see proper training and involvement at all levels of support.

Witness 21: Shayna Smith

Shayna Smith is the acting public guardian from the Queensland Office of the Public Guardian.

To flag, guardianship is against the Convention on the Rights of Persons with Disabilities – specifically Article 12. All too often, people with disability don’t get to make decisions about their own lives; instead, others make them for them. For more information relating to the rights of people with disability, click here.

A recurring theme from Ms. Smith’s statement was the data around restrictive practices. This data shows high levels of restrictive practices and restraint; and it is also prone to underreporting, which is hugely worrying.

It was raised that the Public Guardian has been approving far more restrictive practices than refusing them. Evidence was relayed that 113 cases were approved with just 5 disapproved in the same time period.

There were concerns online relating to Smith’s statement and her consistent use of the word ‘consent’.  We must remember that when Smith referred to consent, she was referring to the Public Guardian consenting on behalf of the person with disability, whose personal consent is irrelevant.

Ms. Smith stated that applications for chemical restraint are looked at on a case-by-case basis. The history of the provider making the application is not a factor. There is also no process in place for identifying repeat offenders of abusive practices.

There also appears to be no follow up or record of the action taken after a report has been made by community visitors. Smith stated this is due to confidentiality reasons, however, that then means it is difficult to report what changes or actions are being made to limit restrictive practices.

Smith’s statement highlighted our huge concerns around the need for lived experience statements in this Royal Commission. People with disability were being spoken about in terms of the best way to ‘handle’ them but, there were no comments on what it is like to live under these practices from those experiencing them.

Witness 22: Janice Rushworth

Janice Rushworth works for the Queensland Department of Child Safety, Youth and Women. Her statement primarily discussed the child protection regime.

When asked about data relating to children in the protective system, quite often, Rushworth did not have answers or data relating to the question. She stated that there are high percentages of First Nations children in the protective system, but she is unaware about data relating to children from culturally or linguistically diverse backgrounds, or data relating to age groups.

Rushworth stated that ‘hypothetically’ there should be no use of chemical restraint on any child, however, it does occur. She confirmed that when they hear about it, the department takes it very seriously.

Rushworth continued that Doctor’s justify this if a child is diagnosed with a medical condition. However, we have consistently heard throughout this hearing that GPs often diagnose dubious ‘mental illnesses’ to prescribe medication that controls behaviours without being classed as chemical restraint.

When asked how they monitor psychotropic medications prescribed to children, Rushworth confirmed that this information is kept in individual files relating to the child, as there is no centralised database to house this information. We found this extremely troubling. Our concerns were echoed by the Commission as well as by Rushworth herself. She agreed with Senior Counsel Ms. Eastman that without having a database to monitor prescriptions, it is difficult to know whether psychotropic medications are being prescribed appropriately. Therefore, this means that children could be subject to chemical restraint and the Department of Child Safety would be unaware because there is no central database to monitor it – and they know this is the case.

Throughout the hearing, Rushworth struggled to answer questions from Ms. Eastman relating to her evidence. Rushworth often responded that she ‘must take that on notice’ or ‘I do not have that information available.’ As the testimony continued, Ms. Eastman appeared to lose patience, quite often interrupting Rushworth to try and get a direct answer.

Reactions online were that Eastman appeared to be ‘gobsmacked by the lack of forthcoming information’, and questions asking whether ‘Rushworth prepared for this hearing at all?’

Hon. Sackville called out the accuracy of Rushford’s statement, stating: ‘if chemical restraint is managing behaviour and not for treating a mental illness, does this not contemplate then that chemical restraints may be used on children?’

Rushford responded, ‘yes, it does.’

Sackville continued; ‘in this case then, your statement that says there is no lawful basis to administer chemical restraint to children, may not be right?’ Rushford agreed.

It was extremely worrying to hear that a Department of Child Safety was acknowledging this, and that their evidence was incorrect.

Ms. Eastman and Rushworth continued discussing the difficulty in understanding what the Department’s policy on chemical restraint is, and what is within and without their policies. Rushworth stated that the practice comes under the heading of ‘restrictive/prohibited practices.’

Rushford continued that difficulties arise as the ‘NDIS regulated restrictive practices’ are classed as ‘prohibitive practices’ under the policies of the Queensland Department of Child Safety, Youth and Women. However, she is currently working with the NDIS at a local level to collaborate on this.

Rushford shared experiences of a young woman with intellectual disability and autism who was an NDIS participant. A Specialist Service Worker in Rushford’s department identified a recent commencement of a psychotropic medication for this young woman and they did not know why. Rushford stated the clinician approached the paediatrician and found the form stated it was administered to manage behaviour. With this new information, the clinician worked with a child safety officer following the manual, to clarify purpose and get consent of its use.

Hon. Sackville asked if Rushford was aware of regulation 13 of the NDIS stating that restrictive practices not covered by behavioural support plans – including psychotropic drugs as chemical restraint – do not require authorisation from Queensland if the person is under 18?

Rushford stated ‘yes, she is aware.’

Hon Sackville then asked: ‘the NDIS may allow the administration of psychotropic medication and chemical restraint in Queensland to a child in care without her department knowing then?’

Rushford retorted that she hopes the NDIS wouldn’t do this as the Department are classed as the corporate parent.

Sackville asked: ‘but can it occur?’

Rushford stated no. She continued that there are regulations in place that state the NDIS must maintain openness and collaboration with the parent. This implied to us, however, that it is down to the discretion of the NDIS as to whether they perform such ‘openness and collaboration’ when legally they can allow the administration of psychotropic medication and chemical restraint without the Department of Child Safety, Youth and Women knowing.

Witness 23: Donna Lockyer

Donna Lockyer is from Queensland Department of Communities, Disability Services and Seniors.

Lockyer discussed the Department’s policy document and its new features – applicable to adults only – on chemical restraint. The latest updates to the document include addition of regular assessments, however, beyond that Lockyer does not recall the specifics.

Lockyer went on to discuss short term approval applications of restrictive practices that might include chemical restraint. There was no mention, however, of whether the person with disability is consulted.

The Department received a total of 250 short-term applications for chemical restraint. Of those, 184 were approved, 22 withdrawn and 36 were not approved. This is yet another high approval rate for practices that breach human rights.

For more information about chemical restraint from the Department of Communities, Disability Services and Seniors, click here. Content warning: the information in this information sheet may be distressing as it discusses chemical restraint in detail.

Lockyer discussed how a person’s capacity to make their own medical decisions is worked out. She stated it is a complicated consultation process involving medical specialists, family and legal teams. We found this very concerning as there was no discussion around the huge power imbalances in this entire process: Governmental departments, disability providers, lawyers, doctors, and regulations versus a single person with disability. 

Appeals on decision making around short-term applications for chemical restraint must be made to QCAT. There has been no appealing of a decision since Lockyer has been in this role.

Lockyer stated that some decisions made are relatively easy or quick where restrictive practices have been authorised already. On decisions relating to transitions to adulthood or into independent accommodation, they will invest more time.

Eastman showed a table from Lockyer’s evidence. Lockyer confirmed it is a tool for providers and sectors so they can understand who does what at which stage, and what their requirements are. Short term approval has no assessment or plan identified as it is their Department’s responsibility.

Hon. Sackville asked: ‘of the 250 applications received in 2019-20, how many involved psychotropic drugs as a chemical restraint being administered before the application was received?’

Lockyer stated, bar 2, the medication was being administered prior to approval being sought.

Hon. Sackville asked: ‘And your desire to formalise the 30-day process is to provide retrospective approval of chemical restraint or psychotropic medication that has been going on anyway? ‘

Yes’, Lockyer stated.

Hon Sackville continued: ‘What happened to the 36 whose approval was refused?’

Lockyer responded that the provider and stakeholders were told that because authorisation is declined, they need to work with GP about reducing medication. Again, we find this extremely troubling that even after the approval is refused, the power still lies with the GP to ‘reduce’ the medication. The medication cannot be ceased immediately as the person with disability has already started the psychotropic medication before the approval was refused.

Lastly, Hon Sackville asked: ‘Are there any sanction in place for those administering chemical restraint without authorisation?’

Lockyer responded that it is made difficult as the GP isn’t part of their regulatory framework and the loved ones of the child administer the medication prescribed.

Witness 24: Julian Trollor

Professor Julian Trollor works at the Department of Developmental Disability Neuropsychiatry at the University of NSW.

Ms Eastman asked about communication for people with intellectual disability and autistic people, and the impact that has on prescribing these kinds of drugs.

Trollor said that this is an issue for untrained clinicians who are not aware of how to involve people with disability who communicate differently in treatment decisions.

Eastman asked: ‘Is there any training aimed at addressing these communication gaps?’

Troller stated there is no substantial difference – improvement – in training for medical professionals in the last 20 years. Troller stated STOMP has made some improvements and could be useful here as part of developing minimum training toolkits.

Troller stated: ‘if he was a clinician that believed autism is medical condition and not a developmental one, and is a mental health condition, I may not think chemical restraint occurs if I’m prescribing psychotropic medication. I may struggle to understand why I should comply.’

Troller discussed different conceptualisations of disability and health conditions. If you define autism or intellectual disability as something that can be “treated”, then psychotropic drugs can be defined as a treatment rather than a restriction, which is hugely problematic.

Witness 25: Graeme Head

Graeme Head is the National Disability Insurance Scheme Quality and Safeguards Commissioner.

Mr Head started his statement by saying that the Commission has been important in bringing to light the extent of the use of restrain on disabled people. However, we know that awareness is not enough.

Mr Head discussed specialist behaviour support providers and registration. Organisations need to be registered to provide specialist behaviour support rather than individuals.

He shared evidence that one person with disability experiences 2112 unauthorised chemical restraints in a year, which is on average 5.9 per day. They had a behaviour support plan in place that had previously lapsed. This person was given 12 or 13 different medications, 2 as needed and the rest were regularly administered.

Mr Head stated that not every report like this triggers a compliance review straight away. This case came to light because the plan lapsed. The Commission has no power to override the decisions of doctors, but they work through with the support services – who are somehow holding the doctors to account? However, we know that GPs have authority over any other professional regarding drug administering and are doing this so incorrectly without any monitoring or sanctions for illegal use.

Mr Head stated that the way the Commission can make a difference is through the use of behaviour support plans and what that triggers.

Further figures were shared from the Commission regarding restraint:

  • 177611 – chemical
  • 112579 environmental
  • 10472 – mechanical
  • 1605 – physical
  • 423 – seclusion
    • 302690 – total for this year.

Eastman reads from Mr. Heads statement saying: ‘It says your priority is to regulate the ongoing use of restrictive practices and that they are authorised and work in accordance with behaviour support plans.’ Eastman continued: ‘that doesn’t sound like the priority is reduction and elimination, it sounds like the priority is regulating the ongoing use?’

Mr Head responded that elimination is there ultimate goal. the Act itself acknowledges that not all parts needed to achieve this outcome were active when the Commission started.

Eastman then asked: ‘Do you think the NDIS Act gives you sufficient powers to enact reduction or elimination in the area of chemical restraint?’

Mr Head stated that’s why the Act was created regarding chemical restraint. We have to be in lockstep with those who lead the interaction with clinicians on what we are doing, why and what the implications are for clinical practice.

Mr Head stated there is no power when it comes to getting medical professionals on board, though. Head is talking about a potential lockstep approach with various other organisations and bodies that does not exist yet. Head stated that they have the formal compliance enforcement powers and functions regarding chemical restraint, and it was envisaged that the Commission would play a significant role in educating providers and support workers.

Hon. Sackville summarised: ‘I deduce from the figures you gave, there are 468 cases of unauthorised uses of chemical restraint where the person concerned was subjected to 100 or more unauthorised uses in the course of the year.’

Head is asked if they assess the quality of positive behaviour plans, ensuring they exist and have the required quality to ensure they are legitimate and positive? He responds that when a plan is logged in the portal it is checked for series of red flags including multiple uses of restrictive practices or polypharmacy.

Eastman asked: ‘is there a specific strategy to reduce and eliminate?’

Head stated the focus has to start on various bits of the system being operational to ensure that goal.

Eastman asked: ‘what is the Commission doing to achieve this?’

Head stated they want to use information gathering to understand with precision what has caused these unauthorised practices.

Eastman stated: ‘you have a lot of info about use of unauthorised chemical restraint and behaviour plans already. Can this not give you a picture of the trends and issues? ‘

Head stated ‘lack of funding’ but other than that, he did not give a clear answer.

He did state, however, that by February next year, the Commission will have a detailed picture about what is driving these reports, what is needed to get plans in place, any key issues and what work is being done.

Head also discussed the disparities between state and federal definitions and the issues this causes. This is something we have heard from multiple witnesses.

Sackville asked: ‘do you think it is your job to make suggestions for amendments to your legislation if it improves the job you can do?’

‘Yes’, Head responded.

‘And you’re in a good position to that, aren’t you?’ Sackville retorts.

Eastman asked: ‘do you have compliance targets you want to focus on?’

Head stated that providers must have plans in place within a timeframe. However, Head also said, as long as there are no impediments. We must ask, however, what defines a relevant impediment?

Eastman asked: ‘is there are any compliance notices issued due to chemical restraint?’

Head thought there was one about medication management but was unsure if it related to restrictive practices. Banning orders have been imposed but no undertaking has gone ahead

Head acknowledged the difficulties within the current operating system regarding complaints around chemical restraint, and that the onus is on the complainant.

Eastman asked: ‘how can you achieve reduction and elimination if one of the safeguards is complaints and your system is failing?’

Head acknowledged this is a failing at the moment.

Witness 26: Dr Jeffrey Chan

Dr Jeffrey Chan is the National Senior Practitioner for the National Disability Insurance Scheme Quality and Safeguards Commission.

Chan corrected the statement he previously gave to the Commission. The changes related to cross-references in different parts of his statement. He also wanted to add a short phrase, clarifying a guide (unclear which one) was for behaviour support staff.

Chan outlined his role as Senior Practitioner, and it was clarified that he has no role in the approval of restrictive practices. Rather, his role relates to provider practices.

Chan clarified there is nothing in the rules that specifically relates to chemical restraints when it comes to assessments for, and the development of, positive behaviour plans.

Chan also clarified that there wouldn’t be a capability framework for different types of restraints. Rather, a practitioner is expected to have the capability across all types of restraints in reducing and eliminating restrictive practices.

He discussed who can be a plan practitioner and what training they need.

Chan stated, before the NDIS, there was nothing in place looking that had positive behaviour support practitioners.

Eastman asked: ‘if you haven’t asked medical practitioners about the development of the positive behaviour support practitioners how can it be successful?’ What about asking people with lived experience, we wonder?

Eastman stated the draft document that outlines information about the use of chemical restraints used by positive behaviour support practitioners states they must have medical understanding; however, the practitioners do not need to have medical training.

Eastman asked: ‘How are human rights upheld in this guide relating to chemical restraint?’

Chan responded: it is interlinked with other frameworks and documents, where the most pertinent point is to uphold the rights of the person. Chan also stated: ‘This guideline outlines all the risks associated with chemical restraints and states all restrictive practices should be the last resort.’ However, the statistics shared by Mr Head doesn’t imply this is happened is what’s happening.

Chan said the consultation feedback for the guide on chemical restraint has been “positive.”

He stated the draft chemical restraints guide is geared towards the reduction and elimination of chemical restraints. However, he only said the guide achieves this by merely stating concerns over the use of medication. He then continued that it is complemented by practice alerts. He stated that there will be more stringent screening of behaviour support practitioners, but also stated that a national register does not exist and that there is no work being done to create one currently.

For the first time during this 4-day hearing, we heard that people with disability are consulted in the developments of their treatment. However, Commissioner McEwin asked why then is there low involvement of people with disability in the development of their plans?

Chan said he is also concerned, and that the Commission will develop a supported decision-making strategy to improve the involvement of PWD.

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