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The Essentials

To guide and resource health service staff and other service providers to better understand and meet complex and multiple health needs of people with intellectual disability and their carers

This website comes at a time when Australian society has embraced unprecedented reforms in the inclusion and support of people with an intellectual disability (ID). The National Disability Strategy, the National Disability Insurance Scheme (NDIS) and the NSW Health Disability Inclusion Plan are indicative of this momentum. Such emphasis is particularly welcome given the documented gaps in both health status and access confronting people with an ID.

In this context there is particular recognition of the continuing importance of health services in the multiagency matrix of integrated care for this population, across the whole age spectrum. Appropriate and equitable access to mainstream health services is a key commitment of NSW Health. The system is further supported by a range of specialised hubs of healthcare expertise as points of tertiary referral, advice and escalation.

The NSW Agency for Clinical Innovation (ACI) Intellectual Disability Health Network has undertaken a substantial body of work, in extensive consultation with colleagues across the state, to produce . It this website provides guidance to the local health districts (LHDs) and speciality health networks (SHNs) in seeking to meet their commitment to improve and enhance services to people with an ID in their population

It describes the challenges of the current status, the case for change and the 10 principles of quality service delivery for people with an ID. The self-assessment process’, delivers the most immediately relevant and useful guidance to colleagues at the coal face. Areas for action are categorised across four enabling domains (workforce, communication, data, system) as well as actions specific to health service delivery domains, incorporating mainstream (mental health, hospitalisation, integration within NSW Health and integration external to NSW Health) and specialised health services. This approach creates a total of nine categories for action, with guidance for prioritisation within each category and tools for self-assessment. Some of these suggested actions specifically relate to improving health outcomes of Aboriginal and Torres Strait Islander peoples with ID.

The consultation process has allowed the prioritisation of actions into a clear hierarchy and implied sequence for implementation. Given the context of existing workloads, this staged and balanced approach seems practical and helpful. Accordingly, the ‘key (high priority) actions’ are schematically displayed for each category followed by a corresponding self-assessment tool and relevant links to resources. There are also proposals for evaluation and further development of the resource pack and the Essentials documents as part of the implementation stages.

Acknowledgements

The Co-Chairs of the ACI Intellectual Disability Health Network thank the Network’s executive group members for their contribution in shaping the final outcome of this work.

The ideas and actions for capability building were gathered through an extensive consultative process across LHDs and SHNs and throughout the broader membership of the Network. Consumer and carer partnership has been a key feature of the process.

Many of the tools to support the suggested actions are the direct result of the commitment of the Network’s membership to improve the experience of people with ID as they access the services of NSW Health. These tools help to improve health outcomes.

This report is the combined effort of the members of the ID Health Network. The Network has an executive group and four subcommittees. It also has carers actively involved at subcommittee level. The members of the executive group are listed below and represent the Network and its subcommittees, all of whom helped shape the resource pack and the Essentials.

Name Organisation
Maria Heaton Parent and ID Health Network Co-Chair 
Les White  ID Health Network Co-Chair 
Jenny Martin  Hunter New England LHD and ID Health Network Co-Chair 
Vivian Bayl  Sydney Children’s Hospital Network 
Melisa Clements  NSW Department of Education 
David Coyne  National Disability Insurance Agency 
David Dossetor  Sydney Children’s Hospital Network and Co-Chair Models of Care subcommittee 
Seeta Durvasula  Centre for Disability Studies (Sydney University); Director ID pilot and Co-Chair Research and Development subcommittee 
Michelle Henwood NSW Family and Community Services, Ageing, Disability and Home Care and Assistant Co-Chair Workforce and Development subcommittee 
Louise Farrell  NSW Ministry of Health 
Robert Leitner  South East Sydney LHD; Director ID pilot and Co-Chair Models of Care subcommittee 
Barbara Lewis  Northern Sydney LHD and Co-Chair Access and Equity subcommittee 
Kathryn McKenzie  NSW Ombudsman’s Office 
Melinda Norton  NSW Family and Community Services 
Tony Pooley  National Disability Services 
Chris Shipway  NSW Agency for Clinical Innovation 
Natalie Silove  Sydney Children’s Hospital Network and Director ID pilot 
Jim Simpson  NSW Council for Intellectual Disability 
Jacqueline Small  Sydney LHD and Co-Chair Access and Equity subcommittee 
Tracey Szanto  NSW Agency for Clinical Innovation, Network Manager 
Julian Trollor  UNSW Sydney