T: 0401122273

E: Christel.Burton@sa.gov.au

By Dr Christel Burton Welcome to the new look AADDM newsletter! AADDM has a new logo and a new website too. In this edition, AADDM president Jaqueline Small explains the constitutional changes which include important changes to membership. Associate memberships are now open so if you have colleagues in medicine or allied health who may like to become AADDM members please refer them to the new AADDM website www.aaddm.com.au. The Department of Developmental Disability Neuropsychiatry (3DN) at UNSW has developed and released ‘The Intellectual Disability Mental Health Core Competency Framework: A Manual for Mental Health Professionals’. The framework will help any mental health service provider to develop competency in the day-to-day work of people with ID and mental ill-health. The newly endorsed Specific Interests Disability network of the Royal Australian College of General Practitioners (RACGP) had its inaugural teleconference in May. The Disability network will be able to offer GPs support in their understanding and role within the National Disability Insurance Scheme and will advocate education and awareness of the health and

wellbeing of people living with disability. Professor Nadia Bodawi of the Cerebral Palsy Alliance explains how Wheelchairs for Kids, The Rotary Club of Turramurra and CSF Global Bangladesh are working to improve the situation for children with disabilities in remote Bangladesh. AADDM members can be involved too through donations and awareness of the issues see page 7. Back to Australia, Find out more about AADDM’s very own Dr Margaret Kyrkou - a terrific ambassador and experienced clinician of disability medicine. Dr Kyrkou was kind enough to agree to be interviewed about her career. Dr James Bao, who is Dr Jaqueline Small’s Registrar, has contributed an article on ‘Visuals in Health’. This describes the common sense approach of using visual communication to explain the hospital journey to children with disabilities. Finally: Conferences! Firstly, the Adelaide branch of AADDM is seeking your preferences about the 2017 AADDM conference. Please take a few moments to fill in and return the survey that accompanies this newsletter. Secondly, and more pressing, is the International Association for the Scientific Study of Intellectual and Developmental Disability (IASSIDD) world congress in Melbourne August 14th to August 19th 2016.

Committee Members Nick Lennox Helen Leonard Margaret Kyrkou John Entwistle Bob Davis Seeta Durvasula Aline Smith Christel Burton Cathy Franklin Jenny Torr

Secretary

Dr Jane Law

Treasurer

Dr Jean Graham

Inside this issue

Major changes for AADDM Jackie Small

2

Recognition for Dr John Entwistle Christel Burton

2

Launch of Manual for Mental Health Professionals Claire Eagleson

3

Interview with Dr Margaret Kyrkou Christel Burton

4-5

Visuals in Health Dr Jungchao Bao

6

Disability in Bangladesh Professor Nadia Badawi

7

Global Partnerships in Intellectual Disability Health Symposium

8-9

ABLE XSeries Online Course at QCIDD Miriam Taylor

10-11

RACGP Specific Interest Disability Network Christel Burton

12

3DN Education Modules Update 12

Editorial

Newsletter

June 2016 Issue 26

Thirdly, there is the Global Partnerships in Intellectual Disability Health 22nd August in Sydney. Finally a Tentative plan for a joint meeting health SIRG IASSIDD and AADDM on 19th August at Monash. Medical Centre. ‘ Innovations, Inspirations and Ideas for Improving the Health of People with Developmental Disability. Christel

President

Dr Jacki Small

Vice President

Prof Julian Trollor

AADDM Newsletter June 2016, Issue 26

Page 2

Major Changes for AADDM ushered in at Extraordinary General Meeting

Jackie Small, AADDM President

The AADDM executive committee has, over many years, considered whether membership of the organisation should remain medical or broadened to include other health professionals and other professionals with interest in the health of people with intellectual or developmental disabilities. Although there are potential benefits for both approaches, the executive committee came to the conclusion that the goals and aims of the organisation would be better served in the future by expanding the membership. On 23 February, 2016, this proposal was put to an extraordinarily general meeting and passed unanimously. There are now 3 membership categories of AADDM: Full Membership: any legally qualified medical practitioner within Australia who is in good standing, supports the purpose and goals of the Association Associate Membership: Medical practitioners outside Australia, other health and allied health professionals from Australia and internationally and persons from outside the health profession with a demonstrated interest in the health of people with an intellectual or developmental disability who support the purpose and goals of the Association Honorary Life Membership: full members of AADDM who have retired and continue to actively support the goals of the association Application for membership and renewal is being streamlined along with the development of the website, and will be available through the website, once it is developed.

Long Service Recognition for Dr John Entwistle

By Christel Burton

Dr John Entwistle (AADDM member) was recently awarded a long service recognition from the Rural Doctor’s Workforce agency for 35 years of service at Hahndorf. Dr Entwistle has a daughter with a disability and has worked in the Adelaide Hills, rather than a more remote location, in order to access stable support services for her. He has a specific interest in the health of people with a disability. Speaking about the award, John said “I’m pleased with the recognition but I’m a little embarrassed to receive this award as I feel I’ve been well rewarded over the years – and I don’t mean financially”. Congratulations John!

Where the application is for associate membership, it is to accompanied by curriculum vitae and nominations from 2 AADDM members (at least one must be a full member). Where the nomination is for honorary life membership, it must be by a full member and accompanied by written description of the person’s achievements and contributions to AADDM and health of people with intellectual or developmental disability. The EGM also approved a modest fee increase to $100 for full and associate members effective from the 2016 renewal period.

AADDM Newsletter June 2016, Issue 26

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Launch of Competency Framework to support the needs of people with an intellectual disability and co-occurring mental ill health.

By Claire Eagleson, Project Officer, Department of Developmental Disability Neuropsychiatry, School of Psychiatry | UNSW Medicine

The Intellectual Disability Mental Health Core Competency Framework: A Manual for Mental Health Professionals (the Framework) is now freely available from https://3dn.unsw.edu.au/IDMH-CORE-COMPETENCY-FRAMEWORK. The Framework was released in NSW on the 30th March 2016 by the Hon. Pru Goward MP, Minister for Mental Health.

People with an intellectual disability (ID) are 2-3 times more likely to experience mental ill health compared to the general population, yet they face many barriers to accessing mental health services. Australian mental health professionals report a low level of confidence, and limited education and training, in the assessment and treatment of people with an ID.

The Framework aims to improve the capacity of the mainstream mental health workforce to meet the needs of people with an ID and co-occurring mental ill health. It identifies the core competencies required to deliver quality mental health services to people with an ID, provides a tool for the self-assessment of current skills, and guides readers to tools and professional development resources. Although aimed at NSW Health Mental Health staff, the Framework is applicable and adaptable to any mental health service context. A practical toolkit to support the implementation of the Framework will be made available through the 3DN website later this year. The Framework has been developed by the Department of Developmental Disability Neuropsychiatry (3DN) at UNSW Australia with funding from NSW Health. For further information on the Framework, please contact Julian Trollor on j.trollor@unsw.edu.au or (02) 9931 9160.

Hon. Pru Goward MP, Minister for Mental Health and Professor Julian Trollor launching the Intellectual Disability Mental Health Core Competency Framework.

Photo acknowledgement: UNSW Media

AADDM Newsletter June 2016, Issue 26

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AADDM Member Spotlight: Dr Margaret Kyrkou By Christel Burton Dr Margaret Kyrkou agreed to a ‘Kitchen Cabinet’ style afternoon tea on Saturday 4th June. On the menu was ‘healthy’ carrot cake with quark icing. Dr Kyrkou’s pull to the medical profession was influcenced by her family’s “exceptionally good” General Practitioner. However, when Dr Kyrkou was in high school, she did not think she had the ability to do medicine so she enrolled in teaching. Dr Kyrkou was half way through her first year of teaching when the syllabus for the following year came out and “the book sort of opened itself at Medicine”. Dr Kyrkou was accepted into the course, so she quit her teaching degree and, while waiting for medicine to start, she worked for the government. In the government job she learnt about interviewing, reading between the lines and making an influential argument. Those skills were actually really worthwhile for medicine and she was able to go back to the government job during the Uni breaks. In university, Dr Kyrkou achieved highest marks for patient interactions. She would wait in emergency and get to know the patients. When there were questions she would think about patients that she had previously seen with that condition. Dr Kyrkou was doing Problem Based Learning before it was termed as such. Dr Kyrkou graduated from the Adelaide University with a MB.BS in 1976. She achieved her FRACGP in 1984 and Postgraduate Diploma of Community Child Health from The Flinders University of South Australia in 1988. She continued at Flinders University achieving a Master of Disability Studies in 1999, and a PhD in 2010 with the thesis “Females with disability from puberty to menopause”. Dr Kyrkou has worked for 37 years in the area of disability. One of the areas of clinical practice that she particularly enjoys is diagnosing medical conditions that are “coming out” as behaviour. Dr Kyrkou feels particular satisfaction when she can use her knowledge to make a big difference to the family and the patient too. Dr Kyrkou has been holistic and community orientated in her work. She has got out-and-about in the community to meet people in their own space. She has worked in: Medical consultancy managing medical clinics for

the large SA Meat Corporation (SAMCOR). The 6

weeks to get handover of clinical records “stretched” to 10 years part-time.

Developmental Assessment Clinics in urban and rural locations.

Assessing referred students in School Health Program, Medical Consultancy, interagency committees

Training paediatric registrars in Griffiths Mental Development scales and supervising their rotation in Women’s and Children’s Health Network.

Medical consultancy, private and public, for children and young adults with disability.

Medical consultancy for the Access Assistant Program (students with a disability in education)

Many interagency committees (for a complete list see end of article)

Dr Kyrkou was a manager of health services for many years and she was known to establish and maintain positive environments. I asked her how she achieved this: “Trying to find the positives or little achievements. Those gave me the strength to keep managing. Also, not caving in to pressure. In difficult interactions I try to rework the points and turn them around in terms of positives for the other person, sometimes “offers they can’t refuse”. Asked if there have been any funny experiences, Dr Kyrkou laughed, “When I first graduated my elderly and unwell family GP teed me up to work for him. For the first couple of weeks, even though warned I was a female, all the elderly veteran patients would walk into my room, see that I was a young woman, and apologetically say they would return the next week, which they did. When I started working at SAMCOR a senior union member and slaughter man came in ranting and raving, but I stood my ground and let him run out of steam. He later became one of the strongest advocates of the Q Fever Program (see below). The thing that made me accepted by the SAMCOR employees as a doctor, in spite of being female, was diagnosing chronic back pain in a very well respected slaughterman for what it was, intermittent claudication, with successful treatment. When asked about her proudest achievements Dr Kyrkou says “In the early days, at SAMCOR, there was a serious outbreak of Q fever from feral goats. Professor Barrie Marmion from the Institute of Medical & Veterinary Science convinced his colleague, Professor Dick Ormsbee, Director of the Rocky Mountains Laboratory to help CSL produce a safer vaccine, as the previous one used in the US Army had too many side effects. We also had infectious disease specialists coming out and working with us for the trial of the NHMRC funded Q fever vaccine. One of those was Professor Ian Maddox, who came out to

AADDM Newsletter June 2016, Issue 26

Page 5

SAMCOR to meet senior union members to help them understand Q Fever, and the vaccination program. They were all standing waiting and watching out for the luxury car they were expecting. I wish I had a camera to capture their expressions when Ian came riding up on a push bike. We got the union members to understand Q fever titres, current disease versus past infection, and the benefits of vaccination, so they became advocates. I was clinical lead, showing the protocol we developed convincingly prevented Q Fever without adverse events. That was a very satisfying outcome. We had a Brucellosis outbreak at SAMCOR, and I was actively involved in locating the source, again a very pleasing outcome.

Also developing an intranasal midazolam protocol for prolonged seizures in the community (initially for schools). Prior to this it was rectal diazepam. On a personal level developing the Access Assistant Program and building it up, supporting the staff and making them feel valued. I was very honoured to receive the Order of Australia Medal in the Queen’s Birthday Honours for services to children with a disability in 2001. Finally, when asked if she thought she was a good fit for her career, Dr Kyrkou says “for the kind of work that I am doing, yes, I enjoy being able to help others, and I was given many wonderful opportunities. Being a doctor has turned out to be the best thing because with my daughter, who has a disability, I have been able to work with her treating doctors. Also my experience with my daughter has meant that I know some of the tricks of the trade which other families find quite useful.” Dr Kyrkou currently serves on the following committees:

∙ Child Death and Significant Injury Review

Committee,

∙ Australian Association of Developmental

Disability Medicine,

∙ Royal Australian College of General Practitioners

Specific Interests Network. Dr Kyrkou has previously served on many interagency committees.

Past committees

∙ End of Life Care Working Group

∙ Medical Directors Group

∙ Sentinel Events Review Committee

∙ Chronic and Complex Care Advisory Group

∙ Personal Care Reference Group

∙ Epilepsy Working Party

∙ Rehabilitation Working Party

∙ Trainee Medical Officers Task Force

∙ Medical Professional Group

∙ Industrial Relations Committee

∙ Course Advisory Panel on Autism Spectrum Disorders (Technical and Further Education) Institute for the Study of Learning Difficulties (Nominee of Minister for Education Training and Employment)

∙ Ministerial Advisory Committee: Students with Disabilities

∙ Disability Health Care Support Service Advisory Committee

∙ Medication working party

∙ Meal time Management Working Party

∙ Continence Working Party

∙ Lifting and positioning working party

∙ Interagency Forum – Health Care Support in Educational Settings Country Based Health Care in Educational Settings Project

∙ Continuity of Care for Families of Children with

Eating or Drinking Difficulties

∙ College of Paediatrics Chapter of Community Child

Health (Inaugural President)

∙ Para Districts Health Advisory Committee

∙ Ministerial Advisory Committee: Students with Disabilities Inclusion Task force

∙ Northern Regional Council for Personal with an

Intellectual Disability

∙ Early Intervention Association of SA

∙ Child Care Access Support Team Advisory Committee

∙ Northern Child Protection Panel

∙ Northern Children’s Network Advisory Committee

∙ Multicultural Advisory Committee

∙ IASSID Academy providing education and training

on disability in disadvantaged counties

∙ Centre for Intellectual Disability and Health Advisory Group and Research Sub-committee

∙ Research Higher Degrees Committee, Flinders University

AADDM Newsletter June 2016, Issue 26

Page 6

Visuals in Health

Dr Jungchao Bao, Advanced Trainee Paediatrics, Deputy Chief Resident Medical Officer and registrar, Disability Specialist Unit, Sydney Children’s Hospital Network.

The last two decades have seen increasing recognition for augmentative and alternative communication (AAC) techniques to assist children with difficulties in verbal communication. The role of AAC has been particularly studied in children with Autism Spectrum Disorder (ASD), and led to tools such as the Picture Exchange Communication System (PECS). Visual-based strategies such as PECS supplement and, at times substitute, for spoken words with pictures or photos, which are easier to process and understand when language comprehension or expression is not well developed. Current research suggests visuals are effective at facilitating better communication exchange in children with ASD, and do not hinder spoken language development; rather promoting modest improvements to verbal language in the short term. (Cockerill, 2002; Ganz, 2015). Younger children, particularly pre-schoolers appear to benefit the most from visually supported AAC compared to older age groups. Visuals on media devices are showing promising results in terms of effectiveness compared to paper/card based systems, and this has potential to greatly improve accessibility for professionals and parents (Ganz, 2015). Currently, visuals are most commonly used by early intervention providers and schools. In the Paediatric Health setting, an example of a visual tool is the Wong-Baker FACES® Pain Rating Scale. However in general, there is little research about the use of other visuals in the health care sector. Looking at ways to apply the growing body of evidence for AAC in health settings for intellectual disability, physical disability and even preverbal children is a fairly new direction for research. Say Less Show More is a current initiate at the Children’s Hospital at Westmead (CHW), in collaboration with partners in the non-government sector, Agency for Clinical Innovation and ADHC, to promote knowledge and use of visuals with children in the hospital setting.

Visuals were introduced to the CHW Emergency Department and staff trained to use them with children presenting to the Emergency. Doctors and nurses used visuals booklets to either show a picture schedule of a patient’s journey through the Emergency Department, or to help communication with the child and family during physical examination or an intravenous procedure. Feedback from participating staff and families was very positive. Better communication and reduced stress and anxiety were reported when visuals were used with a broad range of young children, not just children with existing developmental disabilities as initially predicted. With the support of the NSW Agency for Clinical Innovation and local early intervention organisations, the Say Less Show More project now aims to provide up to date and quality resources to train hospital staff to using visuals more broadly. This includes an online learning module, and creating an uniformly recognised and accessible set of visuals that can be easy printed or downloaded. The project is fast approaching release. References Ganz, J.B (2015), AAC Interventions for Individuals with Autism Spectrum Disorders: State of the Science and Future Research Directions. Augmentative and Alternative Communication, 31 (3), 203-214 Cockerill, H (2002), Supporting communication in the child with a learning disability, Current Paediatrics 12 (1). 72-76

AADDM Newsletter June 2016, Issue 26

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Disability in Bangladesh Professor Nadia Badawi AM| Medical Director, Grace Centre for Newborn Care | Macquarie Group Foundation Chair of Cerebral Palsy, Cerebral Palsy Alliance | University of Sydney On Tuesday the 17th May 2016 Professor Badawi

delivered a speech and sat on the panel at the

United Nations 'A Call to Action for Gender

Equality Conference.'

Nadia highlighted the amazing work being done

with in Bangladesh and Australia to alleviate the

social and economic effects on women of having a

child with a disability in remote areas of

Bangladesh.

In these areas 90% of primary caregivers of a

child with a disability are women and mothers,

and an astonishing 80% of these children do not

attend a school. Abandonment, social and

economic exclusion, discrimination, abuse and

extreme poverty is the result, as women are

forced to be by their disabled child every second

of every day, often at the sacrifice of their own

health and wellbeing. Many examples exist of

women, unable to afford a wheelchair (only 3.8%

ever received any assistive devices) having to

carry their growing and heavy children

everywhere, causing debilitating back injuries.

A lack of social awareness of disabilities in

Bangladesh and regions like it can also mean

complete social and familial exclusion for

mothers, often resulting in severe depression and

destitution. This lack of awareness means that

not only are these women isolated and without

any assistance, they are locked out of economic

opportunities, making it impossible to lift

themselves out of the poverty cycle.

In collaboration with the Australian Cerebral

Palsy Alliance, Wheelchairs for Kids, Rotary

Club of Turramurra and CSF Global, Bangladesh,

Nadia is working to bring about a change in

attitude in how children with cerebral palsy and

other disabilities are perceived, treated and

cared for, as well as empowering mothers to

change their own dire situations.

To see more about this project: https://www.youtube.com/watch?v=sGgmLkdiMtk Donate: via Cerebral Palsy Alliance Research Foundation website (https://research.cerebralpalsy.org.au) or call Lucy Jacka | Senior Manager Relationship Fundraising Cerebral

AADDM Newsletter June 2016, Issue 26

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Global Partnerships in Intellectual Disability Health: enhancing research, policy and practice in NSW

With so many international experts and leaders in the field of Developmental / Intellectual Disability in Australia for the IASSID Congress in Melbourne, we thought we would invite some to Sydney before they return home for a Symposium.

This symposium is intended for researchers,

clinical practitioners, policy writers and managers

and will also benefit those working with people

with intellectual disability in the community.

22

Aug 2016

Presenters include:

• Prof. Helene Oullette

• Prof. Ted Brown

• Dr Laurence Taggart

Find out more

AADDM Newsletter June 2016, Issue 26

Page 9

Register here

The conference is an activity of the NSW Agency for Clinical Innovation

Intellectual Disability Health Network and NSW Ageing, Disability and

Homecare.

Stay Informed

We will post updates on new initiatives, resources, events and activities throughout

the year.

Read more

AADDM Newsletter June 2016, Issue 26

Page 10

ABLE XSeries Online Course at QCIDD Miriam Taylor, Education Coordinator, Queensland Centre for Intellectual and Developmental Disability (QCIDD), Mater Research Institute – The University of Queensland.

More than 100 international experts have contributed to a world-first online course created by the Queensland Centre for Intellectual and Developmental Disability (QCIDD) and UQx at The University of Queensland. Through edX a consortium of universities around the globe including Harvard, MIT and UQ have joined to produce Massive Open Online Courses (MOOCs).

ABLE XSeries is a set of three free MOOCs designed to help those in the healthcare industry to understand best practice for people with intellectual disability. The ABLE XSeries is the first edX course ever to address intellectual disability.

ABLE 101x “Through my Eyes” - gives students an insight into the barriers and enablers in the lives of people with intellectual disability. This health course focuses on the stories of people with intellectual disabilities around the world, as well as their families and supporters. Topics addressed include various challenges in healthcare and aid received for people with intellectual disabilities. Personal experiences of specific syndromes, communication difficulties, and insights into how they stay healthy will also be discussed Learners will also hear from family members as they discuss issues around complex care, rare syndromes, planning for independence and early death. The end of the course will focus on the history of treatment, the impact of rights’

movements regarding healthcare delivery, common health conditions, and health promotion. This course is open to anyone (including people with an intellectual disability and parents/families), but will be of particular relevance to those in the field of advanced medical, allied health, and disability. This course can also be used as workforce education for medical professionals in this field. To register: https://www.edx.org/course/through-eyes-intellectual-disability-uqx-able101x#!

ABLE 201x “Well and Able” – Improving the Physical Health of People with Intellectual Disability. This health course will examine the specific physical health issues that affect people with an intellectual disability including, oral health, syndrome specific health issues, health communication, especially for non-verbal patients, sexual health, and interactions between tertiary and primary healthcare systems. There is a special section on complex care including issues associated with aging and spasticity, and the health impacts of epilepsy. This course is open to anyone (including people with an intellectual disability and parents/families), but will be of particular relevance to those in the field of advanced medical, allied health, and disability. It can also be used as workforce education for medical professionals in this field. To register: https://www.edx.org/course/well-able-improving-physical-health-uqx-able201x

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ABLE 301x “Able-Minded” – Mental Health and People with Intellectual Disability. This health course will focus on the mental health issues of people with intellectual disability. You will learn about the complexities of diagnosing mental health issues in people with intellectual disabilities and the types of disorders, assessments, screenings, and treatments used. There will also be a special focus on the legal and ethical complexities in health practice with patients who often require substituted consent. This course is open to anyone (including people with an intellectual disability and parents/families), but will be of particular relevance to those in the field of advanced medical, allied health, and disability. It can also be used as workforce education for professionals who are interested in mental health. To register: https://www.edx.org/course/able-minded-mental-health-people-uqx-able301x

QUT is the first Australian tertiary institution to use these courses in their degree programs. Griffith University is keen to commence the same process. A National Nursing Association and the USA Ochsner Medical Program are keen to embed this in their online educational programs for CME or continuing medication education.

We are seeking to incorporate some or all of the XSeries in health and disability courses across the globe. If you are interested in including it in your course please contact : Miriam Taylor, Education Coordinator, QCIDD, Mater Research Institute – The University of Queensland. Email: m.taylor3@uq.edu.au Phone: 61-7-31632446 Fax: 61-7-3-31632445.

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Establishment of RACGP Specific Interest Disability Network By Christel Burton The inaugural teleconference of the Disability Network Specific Interest Group occurred in May 2016. The network is chaired by Adj Associate Professor Bob Davis who, along with Dr Aline Smith, led its development and endorsement. The RACCGP provides administrative and technical support for meetings, and members of the network must be current RACGP members. One of the most important roles will be to advocate education and awareness to medical students, general practice registrars and GPs throughout Australia. Approximately fifty GPs have registered as members of the network. There is representation from every state and territory of Australia and of rural and urban settings. The members have clinical experience of practicing Primary Care Disability Medicine. The reasons GP gave for volunteering to become network members include: advocacy for carers, consultancy to the RACGP, policy development, research, advocacy for adults with disability and medical education. The first activity the group has tasked itself with is to contribute a discussion paper on the “Integrated Carer Support Service”, an initiative of the Commonwealth Government. For further information about the network please contact Karen Sherlock (03) 86990347 or email gpsi@racgp.org.au.

3DN Education modules update From 3DN A series of new modules about intellectual disa-bility and mental disorder now available on the 3DN e-learning site http://www.idhealtheducation.edu.au. The modules are evidence-based and peer-reviewed, and aim to equip health professionals to deliver optimal services to people with an in-tellectual disability and a mental disorder. The new modules are two modules about legal and ethical practice, and three modules about challenging behaviour: Module 9: Equality in mental health care – a

guide for clinicians Module 10: Consent, decision-making and

privacy – a guide for clinicians Module 11: Challenging behaviour – Introduc-

tion Module 12: Challenging behaviour – Assess-

ment Module 13: Challenging behaviour – Manage-

ment These modules build on the existing eight, which span topics from intellectual disability through to assessment and management of mental disorders in people with an intellectual disability. Registra-tion is free, and the modules are available now.

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Next newsletter

August 2016