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NBPSA Administration
Email: admin@nbpsa.org Web: www.nbpsa.org
ABN: 30 828 719 189
Neurodevelopmental and Behavioural
Paediatric Society of Australasia
Our Ref:201102 SK to DRC
2 November 2020
The Honourable Ronald Sackville AO QC
Chair, Royal Commission into Violence, Abuse, Neglect and Exploitation of People with
Disability
DRCenquiries@royalcommission.gov.au
Dear Commissioner Sackville
Use of Psychotropic medication for children with neurodevelopmental disability
The recent Royal Commission hearings on Psychotropic Medication, Behaviour Support and Behaviours of Concern have highlighted a number of matters that impact on evidence based prescribing for children and young people with neurodevelopmental disability.
This submission is made on behalf of members of organisations with a shared focus on ensuring people with a disability have access to informed prescribing by qualified and experienced clinicians. An overview of our organisations is attached together with the thinking of the Neurodevelopmental and Behavioural Paediatric Society of Australasia (NBPSA) on behaviour support and psychotropic medication in paediatric practice. This practice approach is clearly geared toward providing every opportunity for the child or young person to transition successfully to adulthood.
Of note the NBPSA has separately identified the need to improve the quality and consistency of prescribing psychotropics for children who are neurodiverse and the Society is currently developing relevant guidance in this area to support members.
The National Framework for Reducing and Eliminating Restrictive Practices in Disability
Services rightly recognises the potential for inappropriate prescribing of medications for the purpose of chemical restraint. However, where indicated, skilled prescribing of psychotropic medications can support children with neurodevelopmental disability to function at their best, with no alteration of their authentic selves. Psychotropic medications used in this way should be considered therapeutic, rather than chemical restraint.
The policy and processes involved in application of the current NDIS Quality and Safeguards Commission regulations on restrictive practice relating to chemical restraint do not seem to account for skilled prescribing for therapeutic purposes.
To better inform understanding and to help find a path forward, we seek consideration of a think tank on psychotropic prescribing for children and adults with developmental disability. We ask that the Commission consider whether it is in a position to convene such a forum, perhaps with the NDIS Quality and Safeguards Commission. This would seem to provide a
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good opportunity for representatives of people with lived experience, researchers, allied health practitioners and the medical professionals responsible for prescribing decisions to come together and consider options for improvement.
Your consideration of this suggestion would be greatly appreciated. Should the Royal Commission wish to progress this matter or have any other queries please do not hesitate to
contact Greg Rochford, Chief Executive Officer, NBPSA
Yours sincerely
Dr Samantha Kaiser Professor Julian Troller Dr Chad Bennett A/Prof Robert Davis
Chair Advocacy President, Australian Chair, Section of Chair Disability Specific
Committee, NBPSA Association of Psychiatry of Intellectual Interest Group, RACGP
Developmental and Developmental
Disability Medicine Disabilities, RANZCP
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Contributing Organisations
Australian Association of Developmental Disability Medicine (AADDM)
AADDM is an organisation of medical practitioners, allied health practitioners and others who specialise or have an interest in improving the health and function of the over 500,000 Australian children, adolescents and adults with Intellectual Disability. AADDM aims to improve the health of children, adolescents and adults with intellectual and developmental disability through professional development and advocacy. AADDM has been, and continues to be, a major contributor to government policy with a remarkable history of successful advocacy leading to widespread changes in healthcare delivery throughout Australia.
Neurodevelopmental and Behavioural Society of Australasia (NBPSA)
The Neurodevelopmental and Behavioural Paediatric Society of Australasia (NBPSA) is a membership organisation for doctors, including paediatricians, general practitioners and child psychiatrists, who have a specialist interest in working with neurodiverse children, their families and carers. The majority of Society members are paediatricians who care for children and adolescents, including those with intellectual disability and Autism Spectrum Disorder (ASD), as well as other diagnoses. Paediatricians are responsible for diagnosis and management of the majority of neurodiverse children, including those with ASD, in Australia.
Royal Australian and New Zealand College of Psychiatry (RANZCP), Section of Psychiatry of Intellectual and Developmental Disability (SPIDD)
The RANZCP Section of Psychiatry of Intellectual and Developmental Disabilities promotes the highest standards in clinical practice, training and research pertaining to the mental health of people with an intellectual and developmental disability. The Section contributes to, and promotes, the highest standards of clinical practice; advises on and promotes training in psychiatry of intellectual and developmental disabilities and advance and disseminate research in psychiatry of intellectual and developmental disabilities.
Royal Australian and New Zealand College of General Practice (RACGP) Disability Specific
Interest Group.
The Royal Australian College of General Practitioners is Australia’s largest general practice organisation, representing more than 40,000 members working in or towards a career in general practice. The Disability Specific Interest Group is responsible for advocating on behalf of general practitioners. Through their long-term patient and family relationships general practitioners (GPS) are best placed to see the signs of abuse and neglect that a person with disability may exhibit. The RACGP provides guidance to GPs who may have a patient with disability who they suspect, or know, is subject to abuse and violence.
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Neurodevelopmental & Behavioural Paediatric Society of Australasia
Behaviour Support and Medication in Paediatric Practice
Neurodiverse children have This means that for some children there is a
varying levels of disability arising need to consider the impact of risk factors, such as parental mental health, poor health
from complex, brain-based literacy and financial adversity on parental conditions. These conditions can capacity to advocate for their own needs, and change rapidly as a child develops. those of their child. The early years can decide the While employing a social model for care, children with neurodisability have multiple degree of disability a child may needs that require a team approach with input face as an adult. from health, education and other professionals.
NDB Paediatrics
For some children, an accurate diagnosis mayPaediatricians with a specialist interest in not be clear, or even possible, early in their lifeneurodevelopmental and behavioural (NDB) course. In relation to children with Autismconditions diagnose and treat children who Spectrum Disorder, research suggests that it ishave problems in functional areas of child important that complexity, includingdevelopment, such as learning, behaviour and psychosocial context, is considered withmood. These doctors treat children and young therapy targeted at the child holistically ratherpeople for a range of conditions and support than at any particular symptom.v This researchfamilies and carers towards agreed short, and reinforces a need for caution in early diagnosis.long-term goals. In the short-term there is a focus on any Positive Behaviour Support immediate problems restricting learning and All periods of childhood and adolescence are development. The long-term goal is that the sensitive periods for neurodevelopment and child will have the best quality of life as they management of clinical issues in children is transition into adulthood. i complex. During early childhood it is often not NOB paediatricians use a family focused possible to separate discreet mental health approach. Families are supported to be in conditions from behaviours of concern due to control and take ownership of any treatment other reasons. decisions they make for their child. This Displaying concerning behaviours may also be includes where medication may assist in the only way some children with meeting short, and long-term goals. neurodiversity can communicate their needs. Background These behaviours can often indicate a poor match between the needs of the child andIt is estimated that 7.3 per cent of those aged 0 their environment.to 17 years in Australia have a disability.ii Recent data also indicates almost one in seven Positive behaviour support helps understand (13.9 per cent) of those aged four to 17 years behaviours of concern as a form of were assessed as having mental disorders in communication. Often where opportunities are the previous 12 months. This is equivalent to not well integrated into the child’s life or they 560,000 Australian children and adolescents. iii are not being stretched, they can become bored and start displaying concerningThere is a positive relationship between a behaviours. Considering why a child displays ahistory of exposure to childhood or household certain type of behaviour can help find the besttrauma and multiple risk factors for several of type of behavioural support.the leading causes of death in adults. iv
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& ahah Neurodevelopmental & Behavioural Paediatric Society of Australasia
NBPSA
The outcomes of behavioural support programs are varied, and may include:
e Creating more opportunities and routines that suit the capacity of the child
e Designing communication systems that help understand the environment and exercise some control
e Introducing coping strategies and carefully designed reactive strategies to help keep families and carers safe
e Learning adaptive skills for daily life.
Role of Psychotropic Medication”
The goal of using psychotropic medication for children with NDB conditions is to help the child maintain self-control so they can be engaged in appropriate therapies and continue to progress during sensitive neurodevelopmental stages to adulthood.
The purpose of medication is to help reduce a child’s distress and any associated self-harm; and, to enable developmental opportunities for gaining behavioural, social and academic skills, for example by improving attention and self-control or reducing impulsivity.
Where psychotropic medications are indicated, families or carers and, where possible, the child or young person, help decide whether these are used as part of a collaborative plan.
Regardless of the location or family circumstances of the child there is a clear and compelling need to uphold their human rights and ensure the reduction and elimination of unnecessary medication. This is a particularly important consideration for children and adolescents in out of home care or in the judicial system where organisations assume the role of parent/carer/substitute decision maker.
McDowell M, Efron D: Psychotropic medication in NB Paediatrics, NBPSA 2020 (in development) “ Australian Bureau of Statistics — Disability, Ageing and Carers, Australia: Summary of Findings, 2012 J., & Zubrick, $. R. (2015). The mental health of children and adolescents: Report on the second
“ Lawrence, D., Johnson, S., Hafekost, J., Boterhoven de Haan, K., Sawyer, M., Ainl Australian child and adolescent survey of mental health and wellbeing.
It is also important to recognise that skilled prescribing of psychotropic medications can support children to function at their best, with no alteration of their authentic selves. Psychotropic medications used in this way should be considered therapeutic, not restrictive practice.
Families think very carefully about what medication or other treatments will be best, and suggesting they are chemically restraining their child is unnecessarily emotive for those who may already be feeling judged.
Medication Review
Ideally the initiation and continued use of medication by a paediatrician or child psychiatrist would have ongoing engagement of a child’s general practitioner, pharmacist and other health professional teams.
Families and carers are advised that it is not always safe to change the dose of a medicine or to stop it without help from a doctor. Medications may need to be weaned gradually over time for safety reasons, as well as ensuring no rapid return of distressing symptoms or behaviours.
Once the desired outcome is achieved from medication, then the discussion with families, children and young people shifts toward how it can be maintained at a lower dose or ceased, preserving any benefits.
For children with NDB conditions who are in out of home care, or where another person or organisation takes on parental responsibilities, there needs to be ongoing access to specialised medical expertise whenever medication is used to help a child reach their potential.
“’Felitti V, Anda R et al Relationship of Childhood Abuse and Household Dysfunction to Many of the Leading Causes of Death in Adults. The Adverse Childhood Experiences (ACE) Study.
American Journal of Preventive Medicine, May 1998, Vol 14, Issue 4, Pages 245-258 31 October 2019 5.30pm. “ Sandback M et al, Project AIM: Autism Intervention Meta-Analysis for Studies of Young Children, Psychological Bulletin, American Psychological Association 2020, Vol.146, No1,1-295
“ McDowell M, Efron D: Op cit
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