AADDM Newsletter

AADDM Newsletter Australian

Association of

Developmental

Disability

Medicine Inc.

T: 0401122273

E: [email protected]

By Christel Burton Welcome to this ‘research themed’ edition of the AADDM Newsletter. AADDM members have been active in research and advocacy, and this newsletter aims to capture and summarise some of the work recently undertaken. Nick Lennox has too much long service leave; accordingly he designed a work trip including meetings in Honolulu, London, Cambridge, Netherlands, and New Delhi. One highlight will be the Netherlands, where he will return to the university of his sabbatical to deliver a lecture to ‘like minds’, i.e. others involved in primary care research in the field of intellectual disability. Before he left on this world trip he submitted the Presidents Report see page 3. He reports on the promotion of Julian

Trollor to Professor of UNSW Department of Developmental and Disability Neuropsychiatry. Nick recently said, ‘whatever Julian’s flaws are I have yet to see them’, and ‘Julian is an absolute honey’ . What lovely words from the President to the Vice President. No team of rivals here! Jaqueline Small worked on the AADDM submission to the Quality and Safeguards review of the NDIS. The submission can be read at http://

www.ndis.gov.au/providers/

quality-and-safeguards. In brief AADDM recommended a high level of accountability in areas related to complaints handling , staff checks and restrictive practices. AADDM also emphasised the important role of disability services in health promotion and treatment of health conditions, and the need of NDIS to consider policy training and clinical practice

Committee Members Jennifer Torr Jacki Small Helen Leonard Margaret Kyrkou John Entwistle Seeta Durvasula Chad Bennett Jim Xu Aline Smith The Executive will be considering co-opting other key individuals to the committee, please watch this space.

President

Prof Nick Lennox

Vice President

Prof Julian Trollor

Secretary:

Dr Jane Law

Treasurer:

Dr Jean Graham

Editor:

Dr Christel Burton

Presidents Reports Nick Lennox

2

Partnerships for better health project update Dr Simone Reppermund

4

AADM Conference 2015 “It’s Alimentary”

6

Australian Longitudinal Study of Adults with Autism Julian Trollor

7

COMPOSE Clinical Trial Christel Burton

8

QCIDD Projects Kate van Dooren

8

Inside this issue:

Editorial

AADDM Newsletter Issue 23 July 2015

standards in relation to this. A huge thanks to Jaqueline Small, Nick Lennox and their team for expressing recommendations on AADDM’s behalf. The Partnerships for Better Health -Improving Mental Health Outcomes for People with an Intellectual Disability,

http://www.ndis.gov.au/providers/quality-and-safeguards




is bringing attention to the emotions in people with intellectual disabilities. Intellectual disability has for too long been used to dismiss the relevance of emotional life and experience. The Partnerships for Better Health Project seeks to make visible the inter-relationships between mental health and policy, mental health service development and reform see page 4. AADDM conference 13 th August 2015 It’s Alimentary!! The program has been released and it is packed with relevant topics. Additionally, the opportunity to talk face to face to the various ‘power houses’ in the field of disability medicine is something that usually money can’t buy. Hope to see you there. Launch of the Australian Longitudinal study of Adults with Autism spectrum (ALSAA) conditions. We all know that there is not much around addressing the experience of adults and autism. Julian Trollor is the lead on the adult Cooperative Research Centre (CRC). One of the biggest areas in autism is anxiety and depression and Dr Kate van Dooren, a post doc has been consulting widely. Kate reports in this newsletter about interviews she has conducted with health professionals about their training needs for working with adults on the spectrum. She has also interviewed the service providers about supporting individuals with intellectual disability in the transition out of prison. Please encourage willing adults within your networks diagnosed with ASD at any level of functioning to contact Kitty Foley at [email protected] to participate in the CRC. The Advocacy Skills Kit Diary (i-ASK Diary) was shortlisted for an Australian Innovation award! Congratulations to the i-ASK team . While it did not win, it was recognised as filling a need and

for its innovation. The i-ASK Diary has now been studied in adolescents and the outcomes data was submitted in May 2015. Watch this space for a summary of the outcomes in the next edition of AADDM Newsletter. What is the I ASK Diary? Advocacy for people with intellectual disability; it can be used to encourage people with disability to go to the GP and to speak up for themselves. The GP can use it too to be involved with the decision making around health. If you have an iPhone you could trial the i-ASK diary app and provide feedback – Interested? The contact email is [email protected] AADDM members have been involved in the COgnition and Memory in People with dOwn SyndromE (COMPOSE) trial. It is a randomized controlled placebo controlled double blind trial studying the effects of a compound found in cough syrup on the cognitive performance of people with Down syndrome 13-35 years old. See page 8.

Enjoy reading this Research Themed AADDM newsletter. Jump into the Tardis of Today’s medical research which will take us to tomorrow’s clinical practice.

mailto:[email protected]



Welcome to 2015. As per usual, it seems to have raced by with in-creasing speed and much busi-ness. I would like to welcome and thank Dr Christel Burton, who is a Medical Consult-

ant, Disability Services and part of the Women's and Children's Health Network in Adelaide SA. Christel has kindly agreed to be the newsletter editor and I am sure would welcome any contri-butions from AADDM members. AADDM has been active on two fronts over the last six months with submissions to two en-quires and the planning for the AADDM confer-ence in Sydney in 2015. In February we made a submission to the Australian Senate’s Commu-nity Affairs Reference Committee regarding the adequacy of existing residential care arrange-ments available for young people with severe physical, mental or intellectual disabilities, and in April we prepared and made a submission in response to a consultation by the National Disa-bility Insurance Scheme about the development of Quality and Safeguards Framework. These submissions have been circulated to all mem-bers however if you would like them resent please contact me via email. I would like to thank and acknowledge the contribution of members who assisted with development of these submissions, with particular thanks to Dr Jacki Small. She has driven both submissions despite a full work load. Members may remember we made a submis-sion on 25 July 2014 to the Independent Hospi-

tal Pricing Authority on the Pricing Framework for Australian Public Hospital Services 2015-2016. This authority has the ability to adjust payments to hospitals for certain services and to weight these services if they are provided for a population which requires more resources of the hospital service. Our key request was to “encourage the Independent Hospital Pricing Authority (IPHA) to investigate adjustment to the National Efficient Price for children, adoles-cents and adults with intellectual disability, a vulnerable population with complex mental and physical health care problems.” This authority has responded to this submission to say they find the hospital data inadequate and will be reviewing the situation in the next round of an-nual reviews. If some members have a particu-lar interest in the IPHA please contact me. Finally I would like to congratulate Julian Trol-lor, AADDM Vice President, on his promotion to a full professor. Julian has a remarkable track record of research, clinical practice and educa-tion. Amongst his many talents is an enormous capacity to work, an exquisite ability to facili-tate collaboration between colleagues and a great humility. Since his appointment as Direc-tor of the UNSW Department of Developmental Disability Neuropsychiatry (3DN) he has been an inspiration to those in the field and his pro-motion is just recognition of his myriad of tal-ents and significant contribution. Julian would not be comfortable with me writing the above, however those who have worked with him will agree with my comments and like me welcome his ongoing contribution to the physical health and mental health of people with intellectual disability.

President’s Report

Nick Lennox

https://3dn.unsw.edu.au/

https://3dn.unsw.edu.au/


The Partnerships for Better Health Project – ‘Improving Mental Health Outcomes for People with an Intellectual Disability’ is a large scale project funded by the National Health and Medical Research Council and research part-ners, and led by Professor Julian Trollor of the Department of Developmental Disability Neuro-psychiatry (3DN) at UNSW. This project represents multi-disciplinary col-laboration between the UNSW, the NSW Minis-try of Health – Mental Health & Drug & Alcohol Office (MHDAO), the NSW Government Depart-ment of Family and Community Services (FACS) and Aging, Disability and Home Care Services (ADHC), National and NSW Council for Intellec-tual Disability (NCID, NSW CID), NSW Govern-ment Agency for Clinical Innovation– Intellectu-al Disability Network (ACI-IDN), NSW Ombuds-man, NSW Office of the Public Guardian, NSW Government Department of Education and Communities, Justice Health, Mental Health Commission of NSW, Mental Health Review Tri-bunal (MHRT) and the National Disability Ser-vice (NDS). It is widely recognised that people with intellec-tual disability (ID) experience substantially poorer mental health outcomes than the wider population, and face increased barriers to ac-cessing appropriate mental health care. The project aims to improve access to and qual-ity of mental health services for people with ID using an innovative multi-pronged, mixed method approach. The project will use large scale data linkage, comprehensive policy analy-sis and inclusive qualitative methodologies to establish an evidence base from which to guide the development of targeted, appropriate ser-vices as well as improving access to services for people with ID and mental health issues at both the national and state levels, with an emphasis on translational outcomes.

The four aims of the project are to: 1. Create an annualised linkage of administra-

tive minimum datasets of our Partners to enable a detailed examination of mental health profiles and service utilisation, patterns of cross-sector service provision including specific gaps, the impact of recent service initiatives for people with ID, and to enable comprehensive development of ID mental health services in NSW.

2. Analyse Commonwealth and State mental health policy to determine the current rep-resentation of people with ID and to estab-lish strategies which will enhance ID mental health policy.

3. Engage with stakeholders including con-sumers and support persons (including fam-ily and non-family carers), to inform im-proved recognition of mental ill health, ac-cessibility of mental health services and mental health policy for people with ID across the lifespan.

4. Progress to maturity a partnership which develops and applies evidence based ap-proach to ID mental health service develop-ment, policy and reform across the lifespan.

Analysis of mortality, mental health inpatient, ambulatory and emergency department presentations is in progress, and a health econ-omist is being introduced to the project to un-dertake a health care cost analysis. Preliminary results reveal significant gaps in policy and practice in mental health services for people with ID. Linked data revealed that compared to the general population, people with ID who used mental health services had a skewed diag-

Partnerships for better health project update Improving Mental Health Outcomes for People with an Intellectual Disability

Dr Simone Reppermund


nostic profile, higher rates of uncertain diagno-ses, higher service use including more frequent and longer admission and visits to the commu-nity mental health service, and higher death rates/premature mortality including from pre-ventable causes. Amendments to the project are underway to facilitate the inclusion of further datasets from other partners. A NSW-wide review of policy in the intellectual disability and mental health spaces is being led by A/Prof Leanne Dowse of Intellectual Disabil-ity and Behavioural Support (UNSW). A systematic literature review on key barriers and enablers to accessing mental health ser-vices for people with ID is in progress. Recruitment of participants for a number of fo-cus groups investigating the experiences of people with intellectual disability, carers and service providers in both mental health and in-tellectual disability is about to commence, and is being led by A/Prof Karen Fisher of the Social Policy Research Centre, UNSW. Data collection for this stage is projected to be completed by the end of 2015. The project is recruiting highly motivated stu-

dents in the areas of Policy & Service Develop-ment and/ or Stakeholder Engagement and Ac-cessibility. Full-time scholarships for the dura-tion of 3 years are being offered (https://3dn.unsw.edu.au/news/phd-scholarship-nhmrc-partnerships-better-health-project-policy-service-development#.VT62zGNZXRA). (Editor’s note: applications for these scholar-ships have since closed) For further information about the project,

please contact Dr Simone Reppermund at 3DN

on 93852578 or [email protected]


Conference themes focus on Gastrointestinal Issues across the ages in people with Intellectu-al Disability Dysphagia, Nutrition and Enteral feeding Upper and lower gastrointestinal disorders Obesity – epidemiology, behavioural and

surgical approaches

The Conference Organising Committee look for-ward to seeing you in Sydney in August.

AADDM Conference 2015 Date: 13th August 2015 from 8am – 5pm

Venue: John Beveridge Lecture Theatre, Level 1 Sydney Children’s Hospital, Randwick

Please note that the workshop has been timed for Friday morning to capture as many people as possible from the preceding day conference.

½ Day POST CONFERENCE

WORKSHOP

“Looking after the Waistline: Positive Car-

diometabolic Health in People with an In-

tellectual Disability” hosted by Professor

Julian Trollor


Launch of the Australian Longitudinal Study of

Adults with Autism Spectrum Conditions

Julian Trollor We are excited to announce the launch of the Australian Longitudinal Study of Adults with Autism spectrum conditions (ALSAA). We would very much appreciate it if you could share this with your networks.

Please contact us if you have any queries or you would like further information about this study. We are recruiting Australia wide for this study. People with ASD at any level of functioning.


Down Syndrome Clinical Research Study: COgnition and Memory in People with dOwn SyndromE (COMPOSE) study. Hypothesis: Compound called BTD-001 can safely improve the cognitive abilities of people with Down syndrome. Participants: People with Down syndrome 13-35 years old. Research Sites in Australia: Adelaide, Launceston, Melbourne, Perth, Queensland Sydney and Woollongong. Background: Research from Stanford University has identified a compound called BTD-001 which improves learning in Down Syndrome animal models. The compound BTD-001, which has been around since 1920s, has previously been used for respiratory disease and also for cognition in dementia patients. The compound is still used as an ingredient in cough mixes for children in Italy. COMPOSE Study Design: Double blind randomised placebo controlled study. Clinic visits conducted over a 16 week period. All visits included a medical examination and review of health status. Some visits included bloods, ECG, a battery of cognitive testing, and EEG. Current Status of the study: Results are being analysed. Comments from AADDM members who were involved in COMPOSE: Dr Margaret Kyrkou, Adelaide ‘For some of the participants there seemed to be a significant improvement’

Dr Christel Burton, Adelaide ‘One participant was identified as hypothyroid by the initial bloods which terminated their involvement with the study but was a good outcome for the participant. “Some of the participants had not benefited from a thorough physical examination and screening bloods for many years.’ Funded By: Neuroscience Research Australia in collaboration with Balance Therapeutics Pty. Ltd

COMPOSE Clinical Trial

Margaret Kyrkou and Christel Burton

The transition out of prison for people with intellectual disability At QCIDD, we recently completed a 12 month grant funded through the Australian Institute of Criminology, through which we aimed to better understand the transition out of prison for peo-ple with intellectual disability in Queensland and Western Australia. We interviewed service providers (n=17) and adults with intellectual disability (n=6). We experienced significant bar-riers in recruitment related to a busy service sector and the high needs of people who have transitioned out of prison, many of whom live chaotic lives characterised by homelessness and further contact with the criminal justice system. Service providers reflected on these needs dur-ing interviews, including the need for targeted, nuanced support and service provision, ade-quate throughcare (that commences well be-fore release and continues post-release), effec-tive working relationships within and between sectors, and training and education for all staff working with prisoners and ex-prisoners with intellectual disability. Participants with intellec-tual disability described how important the sup-port they had received was for their physical and mental health. Without support, many

QCIDD Projects

Kate van Dooren


would be isolated and struggling to perform tasks that many of us take for granted in our everyday lives. We argue that these findings are important during the transition to the NDIS – people with intellectual disability are a vul-nerable group who should be actively support-ed to access independent funding packages or else risk cycles of reincarceration and poor health. We thank all participants for sharing their insights and knowledge with us. Understanding the training needs of health professionals in relation to Autism As part of QCIDD’s research for the Living with Autism Cooperative Research Centre (Autism CRC, see www.autismcrc.com.au) we have been busy ascertaining the training needs of health professionals working with adults on the autism spectrum to inform the development of interventions that will appear on the Autism CRC Health Hub. We have conducted two stud-ies in our formative research stage. First, we undertook an online survey with approximately 70 health professionals (including GPs, nurses, social workers and OTs) to find out more about their current delivery of care and support for adults on the spectrum, and what training they would like to receive. Preliminary analysis of data indicates that health professionals current see adults on the spectrum primarily for check-ups, mental health related care and gastroin-testinal and/or neurological conditions. Few are confident that their patients understand the purpose of their medications (21%), are able to follow their advice (28%) or understand their advice (29%). Most professionals (83%) would like further training, particularly around com-munication, with fewer than half receiving for-mal undergraduate or postgraduate training about autism spectrum conditions (46%). Con-sistent with our commitment to co-producing research with adults on the autism spectrum, we are currently working with an adult to for-mally analyse this data for peer-reviewed publi-

cation. Second, we conducted 5 focus groups and 12 interviews with health professionals to further explore how we can assist their training and knowledge needs. Keep an eye out on the Autism CRC Health Hub for a visual snapshot of the findings from this group (http://www.autismcrc.com.au/health-hub). For more information, please contact Dr Kate van Dooren at [email protected].

http://www.autismcrc.com.au

http://www.autismcrc.com.au/health-hub

http://www.autismcrc.com.au/health-hub



AADDM

Membership Application/Renewal 2015

MEMBERSHIP A person who is a legally qualified medical practitioner in good standing in Australia, is interested in improving the standard of medical care provided to people with an intellectual or other developmental disability and is supportive of the purpose and goals of the Association can apply for membership. Please confirm that you meet these criteria Yes/No (circle correct) Payment of $50 per annum to be made to : AADDM Westpac BSB and Account Number 033-070 , 23-2887, (Oakleigh Branch of Westpac, 44 Atherton Rd, Oakleigh Victoria) Reference: AADDM YOURNAME (ie: AADDM JENNYCURTIS)

Membership form to be sent to the AADDM Administrative support [email protected]

or fax 07 3163 2445

AADDM- http://ausaddm.wordpress.com/home/

Please complete the following:

Name ……………………………………………………………………………………………………………………..……………………

Email ………………………………………………………………………………………………………………...……………………..…

Contact telephone ………………………………………………………………………………...………………………..……………

Postal address ……………………………………………………………………………………………………………………...……..

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Signature of Applicant

…………………………………………………… Date / /

Australian Association of

Developmental Disability

AADDM Newsletter

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