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. notWe 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 Australianto take Associationresponsibilityof Developmentalfor the healthDisabilityof peopleMedicinewithInc. intellectual anddevelopmental disability, including the development of network of specialised intellectualdisability health services. Currently, few such services exist in Australia and where they doexist, the push to establish these services has typically come from state based disabilityservices. We believe the NDIS should also raise this issue and advocate for the development ofthese services throughout Australia.Current healthcare services do not collaborate closely with relevant disability services and viceversa. For example, one of our members is involved with a severely obese boy who hasconsulted specialist obesity services where disability service providers and the school areworking closely with health services to implement much needed changes. From outside thesector it may see an obvious and usual situation, but in practice this rarely happens betweenthese services; making it of particular note to this experience medical practitioner and memberof AADDM.We urge the Senate to recommend to government to incorporate into the NDIS that disabilityservices are responsible for promoting the health of their consumers and actively pursue, liaisewith, and prompt high quality health services. We offer the examples given in Appendix 1 toillustrate how disability services can work with health services to the benefit of the patientwith intellectual disability.We urge the Senate to recommend to government the need to take action to provide equity inhealth care for people with intellectual disability. All healthcare planning should be required toconsider specifically how the healthcare will meet the needs of people with intellectualdisability.We urge the Senate to recommend to government the establishment of a national network ofhealth services specialising in the healthcare of people with intellectual disability. Theseservices would be a consultancy and training resource to the mainstream health system so asto enhance its capacity to meet the needs of people with intellectual disability. The specialisedservices would facilitate collaboration between local health and disability services, undertakeresearch and support and educate the generic health care sector.We urge the Senate to recommend to government that Australian, and State and TerritoryGovernments work together to redress the inequity in health care experienced by people withintellectual disability.Thank you for the opportunity to present our concern.
We look forwardAustralianto the Associationclear acknowledgementof Developmentalof Disabilitythe healthMedicineneeds Inc.of Australians withintellectual disability and the recommendation of established national networks of specialisthealth 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 theprovision of supports to people with disability, which ensures that people with disability havechoice and control over the care and support they receive”1, then healthcare equity must beclearly outlined in the proposed bill.
Professor Nicholas Lennox
President25th 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.