Australian Association of Developmental Disability Medicine Inc.
Committee Secretary Senate Standing Committees on Community Affairs PO Box 6100 Parliament House Canberra ACT 2600 Australia
RE: Australian Senate Inquiry into the National Disability Insurance Scheme Bill 2012
We appreciate the opportunity to contribute to your inquiry into the NDIS. The AustralianAssociation of Developmental Disability Medicine (AADDM) is the national association ofmedical practitioners who work with children, adolescents and adults with intellectual anddevelopmental disability. The goal of our association is to improve physical and mental healthof this population throughout Australia.
As the National Health Hospital Review report stated, there is “stark health” inequalitiesexperienced by this population. The over 300,000 Australians with intellectual anddevelopmental disability can expect early and often avoidable death, unrecognised or poorlymanaged disease and do not receive health promotion or prevention anywhere near the levelenjoyed by the general population. In childhood, for example, the risk of hospitalisation forchildren with intellectual disability or autism is up to ten times greater than children withoutthese disabilities (Bebbington, Glasson, Bourke, de Klerk, & Leonard, in press). Life expectancyof people with intellectual disability and complex needs is reduced by up to 20 years. There aremany causes of this situation, ranging across communication barriers between patients andhealth professionals, complexity of diagnosis, lack of general and specialised skills in the healthworkforce, and health promotion campaigns and research not focusing on people withintellectual disability. As well as the current human and financial costs of poor health forpeople with intellectual disability and their families, there is considerable financial cost to thehealth, social security and disability service systems.
The NDIS is a major initiative and we applaud its development and urge the government toimplement the scheme in its entirety.
otWe believe the NDIS does address our concerns about healthcare delivery in anysubstantive way.
Undoubtedly, the improved life circumstances for people with disability will have a positiveeffect on health and wellbeing, however, we see an overwhelming need for positive, directedand specific action to better integrate disability and health services. Furthermore, we want the
Health System Responsibility
The Australian Association of Developmental Medicine Inc. believes it is important to take responsibility for the development of specialised intellectual disability health services throughout Australia. Currently, few such services exist in Australia and where they do exist, typically come from state based disability services. We believe the NDIS should also raise this issue and advocate for the development of these services throughout Australia.
Current healthcare services do not collaborate closely with relevant disability services and vice versa. For example, one of our members is involved with a severely obese boy who has consulted specialist obesity services where disability service providers and the school are working closely with health services to implement much needed changes. From outside the sector it may see an obvious and usual situation, but in practice this rarely happens between these services; making it of particular note to this experience medical practitioner and member of AADDM.
We urge the Senate to recommend to government to incorporate into the NDIS that disability services are responsible for promoting the health of their consumers and actively pursue, liaise with, and prompt high quality health services. We offer the examples given in Appendix 1 to illustrate how disability services can work with health services to the benefit of the patient with intellectual disability.
We urge the Senate to recommend to government the need to take action to provide equity in health care for people with intellectual disability. All healthcare planning should be required to consider specifically how the healthcare will meet the needs of people with intellectual disability.
We urge the Senate to recommend to government the establishment of a national network of health services specialising in the healthcare of people with intellectual disability. These services would be a consultancy and training resource to the mainstream health system so as to enhance its capacity to meet the needs of people with intellectual disability. The specialised services would facilitate collaboration between local health and disability services, undertake research and support and educate the generic health care sector.
We urge the Senate to recommend to government that Australian, and State and Territory Governments work together to redress the inequity in health care experienced by people with intellectual disability.
Thank you for the opportunity to present our concern.
Australian Association of Developmental Disability and Health Medicine Inc.
We look forward to the clear acknowledgement of the health needs of Australians with intellectual disability and the recommendation of established national networks of specialist health services and the inclusion of health needs of this population in all healthcare planning. If the NDIS is to “provide an equitable, consistent and person-centred approach to the provision of supports to people with disability, which ensures that people with disability have choice and control over the care and support they receive”1, then healthcare equity must be clearly outlined in the proposed bill.
Professor Nicholas Lennox President 25th January 2013 ABN61039294522Address:QCIDD, University of Queensland, Mater Hospital, Raymond Tce., South Brisbane, Q, 4101 Phone: (07) 3163 2412 Facsimile: (07) 3163 2445 President: Professor Nick Lennox Secretary: Dr Jim Xu
References:
Bebbington, A., Glasson, E., Bourke, J., de Klerk, N., & Leonard, H. (in press). Hospitalisation rates for children with intellectual disability or autism born in Western Australia 1983 – 1999: a population-based cohort study. BMJ Open.
Appendix 1
1 2010-2011-2012 THE PARLIAMENT OF THE COMMONWEALTH OF AUSTRALIA, HOUSE OF REPRESENTATIVES, NATIONAL DISABILITY INSURANCE SCHEME BILL 2012, EXPLANATORY MEMORANDA http://parlinfo.aph.gov.au/parlInfo/download/legislation/ems/r4946_ems_2e629de9-8977-4c7e-9886- 28db156673e1/upload_pdf/375307.pdf;fileType=application%2Fpdf
Australian Association of Developmental Disability Medicine Inc.
JENNY’S STORY
Jenny is very vulnerable with an intellectual disability and mental illness. Jenny had an abusive childhood with her father. As a young teenager, she got into patterns of illicit drugs, casual sex and homelessness. She stole to support her drug problem and was in and out of court. Juvenile Justice linked her to a disability service but it found it very hard to locate her. She was then diagnosed with schizophrenia and it was difficult to establish a treatment regime.
Now, Jenny lives with her caring mother who also has schizophrenia and limited insight into Jenny’s needs. Jenny remains very vulnerable to sexual and financial exploitation and in her drug use. She has poor time skills and seldom keeps appointments.
The disability service now tries again to engage with Jenny and slowly gains her trust. The case worker, Meredith, helps Jenny with regular personal crises. They develop a budget together and Meredith helps Jenny implement it. Meredith manages to find suitable sexuality and drug counsellors. She takes Jenny to appointments with Out of squalor and neglectthe counsellors, aids communication in the sessions Michael’s story and reinforces with Jenny what has come out of the Michael grew up in an institution away from sessions. Meredith takes a similar role with the his family. His sister then helped him to move psychiatrist. into his own place, but later she died. Michael refused offers of disability services saying heSlowly, Jenny decides she wants to change her was independent now. 10 years later, thelifestyle. public housing authority found Michael living in squalor, obese and depressed. A disability service spends a lengthy period getting to know Michael and getting his trust. Gradually, the service persuades him to accept help in his home, and to have a full health review and grief counselling. Michael now is healthier and happier than he has been since his sister died.