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VMIAC’s Day 1 Summary of Public Hearing 6
This is our summary of day 2 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.
We tuned in for day 2 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.
Again, we were dismayed to see no witnesses with lived experience of mental or emotional distress, or even a representative of our voice. Akin to yesterday, all statements fell short of diverse perspectives and lived experience insight.
On top of this, there were also no witnesses with lived experience of any psychosocial disability, including intellectual disabilities. Nonetheless, some issues raised are also concerns for all people living with psychosocial disabilities. Some of these issues included:
Getting around ‘chemical restraint’
There are currently no guidelines for GPs that state which behaviours experienced or displayed by people with psychosocial disability entitles them to administer chemical restraint. This follows on to the alarming concerns around power imbalance and accountability, discussed below.
We also heard that GPs often use dubious medical conditions to justify prescribing medication so it doesn’t fall under the category of ‘chemical restraint’. If the ‘illness’ is the disability and the symptom is bad behaviour, under the medical model and in a GP’s mind, this is not chemical restraint, it is treatment. This was also discussed in relation to NDIS regulations.
Medical professionals currently hold all the power when it comes to psychotropic medication. Hon. Sackville of the Commission identified that himself during witness statement 7, Joanna Mullins. He asked, ‘How does anybody know what the purpose of the use of the medication or chemical substance is for? Medication must be prescribed by a medical practitioner whether it’s to treat a condition or to control their behaviour‘; highlighting that it is down to GPs discretion if they wish to administer it.
It was also heard today from Advocates of people with psychosocial disability that medical professionals are hard to influence, even when their course of action is incorrect or even sometimes, illegal. This is especially true of specialised professionals.
Overuse of psychotropic medication
We heard in yesterday’s hearing that chemical restraint is the ‘go-to solution’ for medical (sentence ends abruptly)
One witness conducted thorough research into the use of psychotropic medication and was alarmed by the rates in which it was prescribed. This witness discussed a program in the UK, STOMP, that even though focuses on people with an intellectual disability, autism or both, is an effective model with many positive learnings that could be taken into treatments of broader psychosocial disabilities.
This model understands that there are some useful psychotropic medications and benefits, however, it is often the case that the medication has been overprescribed, causing negative implications to the person taking them, or this person no longer needs them after being on them for a long period of time.
There must be governance and accountability to ensure this does not happen.
Currently, there is no one enforcing sanctions for illegal practices, or even monitoring processes such as interim support plans or reporting of unauthorised use of restrictive practices. It was heard yesterday that Advocates for people with intellectual disability were unsure whether there were sanctions in place for illegal activity within the system, but if there were, ‘who would be monitoring it?’
It is very alarming that whether a person living with a psychosocial disability has to take specific medication, including under chemical restraint, over-prescriptions or an incorrect prescription, is down to the honesty and nature of the medical professional administering. We also heard yesterday that these Advocates have also seen this behaviour in care and support workers. As there is no one enforcing guidelines or sanctioning illegal practices, then some workers may not follow the correct procedures. For example, two witnesses who conducted a joint statement stated they had known chemists to use old prescriptions for chemical restraint.
It was discussed that all professionals think medication is someone else’s issue, with witnesses experiencing multiple medical professionals blaming each other and stepping back from responsibility over monitoring the use of medication.
Lack of autonomy
As is widely known for many people living with mental or emotional distress, there is a severe lack of choice, freedom and autonomy in making decisions about your own situation; and this was heard in relation to intellectual disabilities yesterday.
This autonomy is taken from you by the system, medical professionals and sometimes carers. We heard many instances where people with intellectual disabilities had their independence and choice taken by carers in group and care homes, medical professionals and family members.
It is also widely known that navigating legislations and the system are extremely difficult for people living with mental or emotional distress. This was echoed throughout the witness statements in relation to intellectual disability. Not only are Commonwealth and state legislations differing in what can and can’t be done in relation to restrictive practices, but processes for medical professionals are unclear and, as mentioned, unmonitored.
Not only this, but the disparities between state and NDIS frameworks were highlighted – systems that are both supposedly designed to aid those living with psychosocial disability.
Alternatives to medications
It was discussed by multiple witnesses that alternative therapies to medication was vital. Medication should not be the ‘go-to’ to ‘tick-a-box’. This is just one example of why a person-centred holistic system is needed; so that the distress can be identified accurately, the choices of the person living with psychosocial disability voiced, and an effective strengths-based recovery therapy put in place.
It was highlighted that there are obviously useful medications that have benefits; however, we must reduce the need for it to ensure over-prescriptions and mis-prescription are eradicated, and other ways of healing are explored.
Witness 6: Rose Atherton
Rose Atherton spoke on behalf of her brother, Glen, who passed away last year at just 37-years-old. Glen was born with an extra half chromosome and an intellectual disability.
Ms. Atherton discussed the issues Glen experienced in groups homes, the lack of support and disappointing treatment from staff and various organisations. He was passed between group homes and respites, with no autonomy on his living situation nor independence to go out on his own – he had no choice in his circumstances.
Staff were both untrained and unprofessional, enforcing opinions regarding medication when they were untrained in this area. In one instance, they advised his medication should be increased due to him displaying “psychotic behaviour” in their opinion, despite psychiatrists saying it was unnecessary. They wrote behaviour plans for Glen that did not document incidents within the home, had no behavioral tracking, no evidence that could link “behaviour” to any alleged incidents, and used language that was both emotive and judgmental.
Due to this, his behaviour unsurprisingly changed – he became withdrawn, described as a ‘zombie’ by his sister.
After a traumatic incident during a group bus outing, Glen was put under an intervention order, however almost everything was unclear. The legal process was confusing, and nobody knew what it meant. Subsequently, there was a lengthy court process to have the order removed.
The intervention order caused huge implications for Glen including where and how he could live. He was placed in respite, without even being told. 3 days of respite turned into 11 months.
Even though he liked his respite accommodations, as he experienced no issues there, he was moved to another group home. Around this time, he underwent a health assessment, which discovered he had heart issues. Following this, Glen had a likely heart attack. The home would not take him to the hospital.
Glen had to have surgery and sadly died due to complications post-surgery.
Ms. Atherton believes there must be higher qualification requirements for staff in group homes, as well as appropriate and thorough training at the least.
Witness 7: Joanna Mullins
Joanna Mullins is an Advocate and Appeals Support Officer for people with disability, employed by Independent Advocacy North Queensland – an independent advocacy organisation funded by commonwealth and state governments to advocate on behalf of people with a disability.
Ms. Mullins is also a lawyer by training and has extensive experience interpreting legislation. She mentioned during her hearing that even she has to think hard to understand interactions between state and commonwealth legislations.
Mullins spent some time in her hearing defining different restrictive practices, including containment, seclusion, chemical restraint, physical restraint and mechanical restraint. See NDIS definitions of these restricted practices here https://bit.ly/3mLGLK4
Her statement was split into two sections, firstly sharing information regarding psychotropic medication, behaviour supports and behaviours of concerns from her professional view; and secondly, speaking on behalf of a ‘client’, ABK (pseudonym).
When discussing chemical restraint, Mullins explained to the commission that “If a chemical is prescribed for recognised medical conditions, then it is not considered chemical restraint. For example, if someone is ‘diagnosed’ with schizophrenia and therefore prescribed antipsychotics, the drug is given for a condition and therefore this isn’t restraint. Chemical restraint is when the chemical substance is given to restrain a person for the purposes of controlling their behaviour.” Ms. Mullins continued stating that there is currently no checklist of behaviours that allow medical professionals to use chemical restraint. This then means they can use it at will.
Concerns from the Commission readily followed this statement as Hon. Sackville asked, ‘How does anybody know what the purpose of the use of the mediation or chemical substance is for? Medication must be prescribed by medical practitioner, whether it’s to treat a condition or to control their behaviour’.
Mullins retorted that Hon. Sackville was correct. You are unable to get medication without prescriptions and this comes solely from your GP – no one gets medication without prescriptions. The GP will list the medication and dosage, and then ‘ticks a box’ as to whether this is for a ‘diagnosed mental ‘illness’ or for controlling behaviour’ – the latter being chemical restraint. “In the end, it’s the doctor who makes final decision and it’s hard to influence that.”
Mullins also stated that from her professional experience, GPs use dubious medical conditions to justify prescribing medication so it doesn’t fall under ‘chemical restraint’. If the ‘illness’ is the disability and the symptom is bad behaviour, under the medical model and in a GPs mind, this is not chemical restraint, it is treatment. Mullins explained that ‘It is hard for GPs to get their heads around that.’
The witness was asked, “Are there sanctions in place if someone uses chemical restraint illegally?” The short answer was maybe, but who’s monitoring it?
Mullins explained that under the Commonwealth legislation, if you are a registered NDIS provider you must report use of unauthorised illegal restrictive practices to the Commission. If a Support Worker believes someone will need ongoing chemical restraint, they have 30 days to develop an interim support plan. However, if neither of these things happen, no one is monitoring it.
It is a major concern that whether a person living with psychosocial disability undergoes chemical restraint involuntarily is down to the honesty and nature of the professional to follow the guidelines.
Ms. Mullins then continued to speak on behalf of her ‘client’ ABK (pseudonym). ABK is 15-year-old First Nations persons with multiple disabilities, including severe intellectual disabilities.
Ms Mullins believes that if ABK’s experiences had happened now, the NDIS would get early intervention, speech therapists and occupational therapists – everything needed to intervene from a young age. Unfortunately for her client, he didn’t have any of that.
However, we want to highlight that this may be the case for some, but it is still difficult for many people living with mental or emotional distress to navigate the NDIS and get the assistance they require.
Mullins then shared a shocking story regarding her ‘client’, ABK. She explained that he was always tired, which suggested he may be overmedicated. His mother unfortunately relied on his medication to manage his behaviour, so was concerned about the dosage being reduced. After voicing her concerns, ABK’s Paediatrician resolved that ABK’s morning dose would be halved, and his mother would keep the other half of the tablets to use, in case she needed to. Mullins succeeded with, ‘It is difficult to question a doctor, especially a specialist.”
Witness 8: Joyce-Lyn Smith
Joyce-Lyn Smith is the Clinic Director of PoDDSS – Professional Disability Development Supports and Services. Read more about it here.
Ms. Smith’s statement focused mainly on ‘Positive behaviour support’ plans. There were concerns from viewers that the language used during this statement was ableist, focusing on our behaviour rather than environments.
The first part of the statement focused on chemical restraint, including:
- that behaviour support plans were a gateway to the use of chemical restraint – something also heard from other witnesses
- there were varying definitions for ‘chemical restraint’ between the NDIS and Queensland, creating confusion with reports from medical professionals
Ms. Smith discussed behavioural support plans and the need to spend time with a person living with a disability in a different setting over time in order to set up an effective behaviour support plan. We must focus on a “person centred approach”, talking to many of the “stakeholders” including family, support workers and allied health.
Ms. Smith followed this with a statement regarding behaviours of concern. She discussed proactive and reactive strategies to manage “behaviours of concern, and how we must give support workers strategies to use language in ways to avoid upset. It is also useful to use data collection as a way of identifying why particular behaviours are happening. For example, if a person living with psychosocial disability had a “behaviour of concern” at a similar time every Wednesday, this would likely relate to something within their environment or routine. The conclusion from this was that we must figure out why people are behaving as they do, and actually talking about that with support workers.
Ms. Smith discussed alternative therapies to medication, including anger management programs and EMDR in cases of trauma, both successfully used in cases she was exposed to. She believes that we must reduce the need for psychotropic medication as a restraint; however, Ms. Smith implies that there will inevitably be some need for chemical restraint even alongside behaviour support plans.
Again, issues of regulations and justification of ‘chemical restraint’ arose again.
Regarding regulation, Ms. Smith discussed the differences between the NDIS and the Queensland Framework. For example, a regulation that applies to under 18s in the NDIS does not under the Queensland Framework.
Regarding justification of chemical restraint, we heard that under the NDIS regulation, adding a diagnosis so it can be identified as treating a condition rather than a behaviour and thus a form of chemical restraint, can be a way to get around it.
Witness 9: Dianne Toohey and Witness 10: Kathy Kendell
Dianne Toohey and Kathy Kendell are both Advocates at Speaking Up For You (SUFY) – an independent social advocacy organisation for people with a disability in the greater Brisbane and Moreton Bay area including Redlands. Read more about it here. They are both speaking as parents of people with disability.
SUFY are stated as advocating for greater transparency between advocacy services and health care providers, as well as a greater level of agency for people with disabilities, separate from their carers.
SUFY did not speak against chemical restraint, but instead, favoured more consultations with families before it’s use. This conflicts with their previous statements championing better agency for the individual, separate to the will of their carers/family.
They believe the decision to use chemical restraint should be a transparent and well-planned process, but both Ms. Toohey and Ms. Kendall believe that this is not the case. The relationship between doctors, people with disability and their supporters is not an ongoing relationship, with little monitoring or safety nets in place. They also believe there is a “culture of secrecy” about incident reports, and that they are one-sided.
They stated that the minimal safeguards that are in place are not effective! The use of chemical restraints is normalised and a go-to practice for everyone involved. They told the Commission that chemists will even use old prescriptions.
They discussed the disconnect between the human rights framework and the reality, with the 3 main barriers being: access, access to incident reports, and difficulties with getting information on the medication itself.
Ms. Toohey and Ms. Kendell concluded that there must be overall governance as well as the need for supported decision-making. Chemical restraints should be a last resort, or not used at all.
Witness 11: Dr Jane Law
Dr Jane Law is a consultant general practitioner who currently works within a developmental mental health unit. She discussed the assessment process her clinic uses, including hearing from supporters, conducting a thorough physical examination, and referrals to allied health.
It also came to light that Dr Law had not received any training that specialises in working with people with disabilities. She believes there must be training, however is unsure what it should entail or who should perform it.
Dr. Law highlighted the need for greater capacity for psychiatric services, especially for people with disabilities. Long wait times and a lack of public sector psychiatrists both make care inaccessible and negatively impact overall well-being. We found this distressing to hear at a Disability Royal Commission, as there should not be a focus on more psychiatry, but alternatives to psychiatry.
Dr. Law shared experienced of people she knows with disability.
Witness 12: Dr David Branford
Dr. David Branford is a trained pharmacist and was a mental health chemist pharmacist. He also has a PhD in ID and mental health. He spoke primarily of the STOMP program in the UK – Stopping over medication of people with a learning disability, autism or both. Read more about it here.
Dr Branford discussed the Winterbourne Scandal back in 2012 where care workers were jailed for abusing PWD in homes.
Branford and his colleagues underwent extensive research into the use of medication in care homes. They were shocked that 30 years after institutions were closed, they were still seeing ‘very large’ uses of medication.
STOMP is a UK program focusing on stopping the overuse of medication in intellectual disabilities and autism. It is funded by the National Health Service (NHS), and primarily STOMP gives assistance to organisations to undertake all kinds of initiatives
STOMP is not an anti-medication program. Branford understands there are many benefits from psychotropic medication, so they do not want to take everyone off. They recognise useful medications, but want to highlight overuse, and if a person with disability has recovered from the initial problem, they may need to stop using them
Brandon raised concerns around the difficulty of people getting off medication for several reasons. They might be afraid the original problem will re-emerge, or they have no help or support from facilities to cope if the problem does re-emerge.
Brandon states that “STOMP tries to provide organiations with information and support to encourage them to try alternative ways to manage the problem instead of just using medication.”
Brandon and colleagues have written huge amounts of literature to try and increase people’s support for these alternatives to medication
He discussed concerns around accountability, and that all professionals think medication is someone else’s issue. STOMP is broad in trying to involve every kind of avenue so that all professionals will feel like it is to do with them. Off the back of work completed at STOMP, social care organisations trained all their support worker staff about medications so they could effectively recognise side effects.
Branford concluded that we must discuss the issues around accountability. Whose job is it to take you off psychotropic medication? GPs often say it’s too complicated for them to do; specialists often say they only work within crisis. Unless you create pressure within the system, it will not happen.