National and NSW Australian Association of Councils for Developmental Disability Medicine Intellectual Disability

POSITION STATEMENT ON THE HEALTH OF PEOPLE WITH INTELLECTUAL DISABILITIES

We call for concerted action to redress the We call on the Australian, and State and poor health status experienced by people Territory, Governments to each and together with intellectual disabilities. We make this work to redress the inequity in health care call to the Australian, and State and Territory, experienced by people with intellectual Governments. disabilities. In particular, we call on the Governments to establish a national There are over 300,000 people with network of intellectual disability health intellectual disabilities in Australia. They have services. very high rates of health problems and these problems are often not diagnosed or appropriately treated. Life expectancy is Contacts: reduced by up to 20 years. Jim Simpson, NSW CID There are many causes of this situation, ranging across communication barriers Professor Nick Lennox, AADDM between patients and health professionals, complexity of diagnosis, lack of general and specialised skills in the health workforce, and health promotion campaigns and research not Endorsements - individuals focusing on people with intellectual disabilities. Richard Larkins AO Former Vice-Chancellor, Monash University & As well as the human and financial cost of President, Royal Australasian College of poor health for people with intellectual Physicians disabilities and their families, there is considerable financial cost to the health, Michael Kidd AM social security and disability service systems. Dean of Health Sciences, Flinders University Former President, Royal Australian College of Governments need to take action to provide General Practitioners equity in health care for people with intellectual disabilities. All health care Kevin Cocks planning should include specific Director, Queensland Advocacy Inc consideration of how it will meet the Human Rights Medallist needs of people with intellectual Fiona Stanley AC disabilities. Director, Telethon Institute for Child Health Research There also needs to be a national network of Australian of the Year 2003 health services specialising in the health care of people with intellectual disabilities. These Stephen Leeder AO services would be a consultancy and training Director, Australian Health Policy Institute resource to the mainstream health system so as to enhance its capacity to meet the needs Jeanette Moss AM of people with intellectual disabilities. The Parent advocate specialised services would facilitate collaboration between local health and Bill Carter QC disability services and undertake research. Retired Supreme Court Judge & Royal Commissioner

Paul Bauert, Phillip Aspinall Director Paediatric Services Royal Darwin Hospital Primate of the Anglican Church of Australia & President AMA NT

Ed Byrne AO Peter Baume AC Vice Chancellor, Monash University & former Emeritus Professor of Community Medicine & Vice Provost (Health), University College London former Federal Health Minister

Paul Greenfield AO David Richmond AO Vice Chancellor, University of Queensland Former chief executive of agencies including NSW Health & the Olympic Coordination Authority Robert Strike President, Self Advocacy Sydney & Chair, NSW Council for Intellectual Disability, National Health and Hospitals Reform Lifelong Achievement Award, National Disability Commission final report 2009 Awards 2009

People with intellectual disabilities “face stark Peter Brooks Director Australian Health Workforce Institute, health inequalities”. “Many of our reform University of Melbourne recommendations … will assist”.

Chris Mitchell “Access to specialist medical services is also President, Royal Australian College of General a major gap to be addressed for people living Practitioners with an intellectual disability.” (p 82)

John Dwyer AO Professor of Medicine & Founding Chair, Australian Health Care Reform Alliance Pre-election promise

Errol Cocks “Labor does recognise that people with Professor, School of Occupational Therapy & intellectual disabilities are disadvantaged in Social Work, Curtin University of Technology the health system. ….In many situations, GPs and other health professionals require access Julian Gardner to specialist advice to provide the health Former Public Advocate, Victoria services people with intellectual disabilities require. ….The health of people with Sister Angela Mary Doyle AO Former Administrator, Mater Hospitals & disabilities needs to be part of [our] reform Queenslander of the Year plans.” (Shadow Ministers Roxon and McLucas, November 2007) Bruce Robinson Dean of Medicine, University of Sydney The NSW Government has recently spelt out Gwynnyth Llewellyn the need for a multi tiered framework of action Dean of Health Sciences, University of Sydney on the health of people with intellectual disabilities including the establishment of a Peter Smith statewide network of specialised intellectual Dean of Medicine, University of NSW disability health services to back up Alison Jones, mainstream services. (NSW Health (2007), Dean of Medicine, University of Western Sydney Development of a service framework to improve health care of people with intellectual disabilities) Nicholas Fisk Executive Dean of Health Sciences, University of The NSW Ombudsman, who review deaths Queensland of people with disabilities, has said that the proposed NSW framework “is critical to Richard Bruggemann improve the health outcomes for this Professorial Fellow in Disability Studies & former vulnerable community”. CEO, Intellectual Disability Services Council, SA (NSW Ombudsman, Report of Reviewable Deaths in 2007, Vol. 1, p.i Kevin Stone Parent advocate & Executive Officer, Victorian Advocacy League for Individuals with Disability

Ron Mulock AO Specialised resource services would greatly Former Health Minister & Deputy Premier, assist in addressing many of the health NSW inequality concerns identified in research

and help Australia meet its commitment to John Hannaford Former Health & Community Services equal health outcomes arising from the UN Minister, NSW Convention on the Rights of Persons with Disabilities.

Chris Sidoti Graeme Innes Former Australian Human Rights Commissioner Human Rights & Disability Discrimination

Justice Sally Thomas AM Commissioner Supreme Court of the Northern Territory Guy Hamilton AM Margaret Ward Former head of intellectual disability services, Parent advocate & former Deputy Chair, Western Australia Disability Advisory Council of Australia John Taplin Bruce Tonge Professor of Psychology, University of Adelaide Professor of Psychological Medicine & Head of the School of Psychology, Psychiatry and Helen Beange AM Psychological Medicine, Monash University Clinical Professor of Medicine

Philip Mitchell AM Roger West Professor and Head, School of Psychiatry, Former President, Guardianship Tribunal, and University of New South Wales Community Services Commissioner NSW

Stewart Einfeld Adrian Sleigh Professor of Mental Health Professor, National Centre for Epidemiology & University of Sydney Population Health, ANU

Julian Trollor Michelle Howard Chair in Intellectual Disability Mental Health Public Advocate - Queensland University of NSW Malcolm Schyvens Adrian Keller Past President, Law Society of Tasmania Chair, NSW Branch, Royal Australian & New Zealand College of Psychiatrists Jeremy Ward Parent advocate & former Director, Leon Piterman AM Queensland Advocacy Inc Professor of General Practice & Deputy Dean of Medicine, Nursing and John Entwistle Health Sciences, Monash University Parent advocate, GP and former member, National Disability Advisory Council Trevor Parmenter AM Professor of Developmental Disability Studies Kim Oates AM & past President, International Association for Professor of Paediatrics & former chief the Scientific Study of Intellectual Disabilities executive, the Children’s Hospital at Westmead

Reverend Jim Colville AM Margaret Colville AM Parent Advocate Deputy Public Guardian of Tasmania

Eileen Baldry John O’Donnell Justice Medallist & Associate Dean, School of CEO, Mater Health Services, Brisbane Social Sciences, University of NSW Michelle Stagg and Dell Stagg, Philip Montgomery Parent advocate and President, SA Council on Executive Director, Royal Perth Hospital & Intellectual Disability former Director of Medical & Health Services, Disability Services Commission, WA Mark Ierace SC Senior Public Defender, NSW

Faye Druett National organisations Former Deputy Chair of People with Disability Australia & Disability Council of NSW Ability First Australia

Susan Hayes AO Australian Council of Social Service Professor of Behavioural Sciences in Medicine Australian Federation of Disability Organisations University of Sydney Australian Healthcare & Hospitals Association Jan May OAM Parent advocate Australian Society for Special Care in Dentistry

Associate Professor Meg Smith OAM Australasian Society for the Study of Intellectual School of Social Sciences, UWS Disability

Grant Lindsay, Donna Rousham and Baptist Union of Australia Esther Tan, Parent advocates, Northern Territory Best Buddies Australia

Neil Preston OAM Cancer Council Australia CEO, Greenacres Disability Services, NSW Dietitians Association of Australia Patricia O’Brien Professor of Disability Studies, University of Disability Advocacy Network Australia Sydney & former Director, National Institute for Intellectual Disability, Trinity College, Doctors Reform Society Dublin Health Consumers of Rural & Remote Australia Maria Circuit Parent advocate and past Chair, NSW Life Without Barriers Council for Intellectual Disability Lifestyle Solutions Australia Pam Morris Parent advocate National Disability Services

Michael Field National Ethnic Disability Alliance Associate Dean, Sydney Medical School National Rural Health Alliance

People with intellectual disability suffer People with Disability Australia untreated pain and disease due to a fundamental communication barrier with Prader-Willi Syndrome Association of Australia doctors. It is time for the health system to break down this barrier. Professional Association of Nurses in Developmental Disability Australia

Kevin Cocks, Human Rights Medallist Public Health Association of Australia

Royal Australasian College of Physicians The health status of people with intellectual disabilities is appallingly low. Royal Australian College of General Their health needs must take priority – by Practitioners supporting training for all health providers Rural Doctors Association of Australia and implementing specialist health services across Australia. Sexual Health & Family Planning Australia

Gwynnyth Llewellyn Dean of Health Sciences St Vincent de Paul Society National Council University of Sydney

NSW organisations Intellectual Disability Rights Service Ability Options, Western Sydney Jewish Care Sydney Achieve Australia, NW Sydney Macarthur District Temporary Family Care Action for People with Disability, Northern Sydney McCall Gardens Community, Western Sydney

Aftercare Mai-Wel Group, Hunter Region

Association of Doctors in Developmental Martin and Associates, Disability Clinicians Disability Mater Dei, Camden Blue Mountains Disability Services Multicultural Disability Advocacy Association CASS Care, Campsie New Horizons Enterprises Central Coast Disability Network Northcott Disability Services Central Coast Living Options Northside Enterprises Central Sydney GP Network NSW Nurses Association Centre for Disability Studies Parents without Partners NSW Checkpoint parent group, Eastern Sydney PATH (Penrith Association for People with Community Links Wollondilly Disabilities)

Council on the Ageing NSW Public Interest Advocacy Centre

Council of Social Service of NSW SEE Foundation, Western Sydney

Cram Foundation, Illawarra St George & Sutherland Community College – Disability Options NSW Disability Advocacy NSW Sylvanvale Foundation Disability Enterprises, Leura Sunnyfield Association Disability Information Advocacy Service, Bathurst The Disability Trust, Illawarra

Down Syndrome NSW The Housing Connection, Northern Sydney

Family Advocacy, NSW Almost on a daily basis we experience how Family Planning NSW deficient the existing health care system is when it comes to people with an intellectual Flintwood Disability Services, Western disability. I find it heartbreaking to find clients Sydney being turned away as 'having a behaviour' rather than being treated for an abscess, Global Disability and Health Care Services clients being treated for abdominal pain with Gaviscon only to find out later that they are Greenacres Disability Services, Wollongong having appendicitis, clients being dismissed as

being difficult while suffering from moving Hunter Carers for Intellectual Disability kidney stones. IDEAS, Tumut Vahida Berberovic, CEO, Windgap Interaction Disability Services, Western Foundation Sydney

Other state and local organisations Uniting Care Disability, NSW Advocacy for Inclusion ACT Valmar Support Services, South Western Slopes Centre for Developmental Disability Health Victoria Waverley Community Living Program Wesley Disability Services Developmental Disability Council of WA

Western Sydney Intellectual Disability Support Down Syndrome Association NT Group Down Syndrome WA Windgap Foundation, Eastern Sydney Health Consumers Network Queensland

Identitywa, WA

Nexus Inc, Hobart

Nulsen Haven Association, WA

Mambourin Enterprises, Western Melbourne

Parent to Parent Association of Queensland

People With Disabilities WA

Queensland Centre for Intellectual & Developmental Disability

Queensland Nurses Union

Queensland Parents for People with a Disability

Sherwood House Medical Practice, Innisfail

Self Help Workplace, Launceston

South Australia Council on Intellectual Disability

Speak Out Advocacy of Tasmania

Tascare Society for Children, Hobart

Town & Country Community Options, Maryborough

Victorian Advocacy League for Individuals with Disability

Victorian Medicare Action Group

Endorsements as at 24 March 2010