Links to other useful information
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If you have already completed the self-assessment tool, use these additional links to support your implementation. Please add links relevant to your own state.
Organisations | |
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The ACI works with clinicians, consumers and managers to design and promote better healthcare for NSW. | |
National Centre of Excellence in Intellectual Disability Health | The centre is bringing together experts, resources and research on intellectual disability healthcare. |
NSW Ministry of Health website with links to health information, policy and guidance. | |
A national advocacy organisation of and for Aboriginal and Torres Strait Islander people living with disability. | |
Advocacy, information, workshops and resources, including easy read health information sheets, with and for people with intellectual disability. | |
The NSW Ombudsman supports people with disability, including in health-related matters. | |
HETI aims to improve the health of NSW and the working lives of NSW Health staff through education and training. | |
Department of Developmental Disability Neuropsychiatry (3DN), University of NSW (UNSW) | 3DN is part of the School of Psychiatry, UNSW Medicine and focuses on the health and mental health of people with intellectual disability. |
Independent government agency that assists the Australian Government to fund hospital and aged care services more efficiently by providing evidence‑based price determinations and pricing advice. | |
UK Royal College of Psychiatrists Faculty of the Psychiatry of Intellectual Disability | Improve your knowledge of psychiatry of intellectual disability. |
Support the transition from paediatric to adult health services for young people with chronic health problems and disabilities. |
Legislation and policy | |
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United Nations Convention on the rights of persons with disabilities | The UNCRPD outlines the rights of people with disabilities – see Article 25 for health matters. |
An easy read summary of the Act. | |
A scheme to fund individualised support for eligible people with disability. | |
Australia’s Disability Strategy 2021-2031: Outcomes Framework - Australian Government, Dept of Social Services | Measure, track and report on outcomes for people with disability. |
The implementation of the NDIS, including information and resources. | |
A digital health record for a patient, containing a summary of their health information. | |
Disability inclusion action plan – NSW Ministry of Health | NSW Health system’s plan for access to services and employment for people regardless of disability. |
Future health: Guiding the next decade of health care in NSW 2022-2032 | The strategic framework and priorities for the NSW Health system. |
National Roadmap for Improving the Health of People with Intellectual Disability | Outlines how we can create a health system where people with intellectual disability are valued, respected, and have access to high quality, timely and comprehensive health care. |
The Act defines who a carer is and establishes the NSW Carers Charter. | |
Admission to discharge care coordination (PD2022_012) – NSW Ministry of Health | Five steps in coordinating patient care to improve the patient experience and flow. |
Children and young people’s continuing care national framework - UK | Guidance for clinical commissioning groups when assessing the needs of children and young people whose complex needs cannot be met by universal or specialist health services. |
Aims to eliminate, as far as possible, discrimination against persons on the ground of disability. | |
Signed by all Australian governments, it aims to improve health outcomes for all Australians and ensure our health system is sustainable. | |
Recommendations on how to improve laws, policies, structures and practices to ensure a more inclusive and just society that supports the independence of people with disability and their right to live free from violence, abuse, neglect and exploitation. |
Training | |
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Study the national framework of understanding and action for frontline mental health service providers with respect to people with an intellectual disability. | |
Intellectual disability mental health core competency framework: A manual for mental health professionals – 3DN, UNSW | The skill set required by mental health professionals working with people with intellectual disability. |
This website aims to help doctors provide better care for people with intellectual disability. A practical resource for developing the intellectual disability workforce. | |
Meet Jessica workshop resources – School-Link at the Children’s Hospital, Westmead | Promotes awareness of the needs of children and adolescents with intellectual disability. |
ID health education - 3DN, UNSW | Free e-learning about intellectual disability for professionals, carers and consumers. |
Advice for health professionals on advice on how to do health care that is respectful, inclusive and accessible. | |
Style manual: Easy read - Australian Government | Combine text with layout and imagery to simplify and explain information. |
Support for decision making practice framework learning resource – La Trobe University | Work through the process of supporting people with cognitive disabilities to make decisions. |
Reports, standards and frameworks | |
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Service framework to improve the health care of people with intellectual disability | NSW Health framework describing a tiered model of care to reduce health inequalities for people with intellectual disability. |
Report and support resources to improve the provision of services. | |
Developmental disability - Therapeutic Guidelines | Consider the topics in the guidelines collections. |
Cause of death and potentially avoidable deaths in Australian adults with intellectual disability using retrospective linked data – Trollor J, Srasuebkul P, Xu H, et al. | A 2017 report showing adults with intellectual disability experience premature mortality and over-representation of potentially avoidable deaths. |
Health of people with a disability - Australian Institute of Health and Welfare | Statistics of health-related factors affect the health status of Australians with disability, including mental and health and risks. |
Intellectual disability health content within medical curriculum: an audit of what our future doctors are taught - Trollor JN, Ruffell B, Tracy J, et al. | Undergraduate opportunities as a way of building future workforce capability. |
The importance of mainstream and specialised health services | Understand the need to continue to provide a range of mainstream health services with access to centres of additional expertise and specialisation. |
Recommendations for health and social care practitioners in meeting the needs of people with intellectual disability. | |
Integrated trauma-informed care framework: My story, my health, my future - NSW Ministry of Health | Guidance to staff, as well as a platform for the changes required to implement elements of trauma-informed care. |
Psychotropic drug prescribing for people with intellectual disability, mental health problems and/or behaviours that challenge: practice guidelines - Faculty of Psychiatry of Intellectual Disability | The Royal College of Psychiatrists proposes standards for improving clinical practice. |
WA disability health framework 2015–2025: Improving the health care of people with disability | To support health services when developing policy and designing services for better health outcomes for people with disability. |
Patient perspectives: Exploring experiences of hospital care for people with disability | This report examines experiences of patients with disability in NSW public hospitals, using 2015 Adult Admitted Patient data. |
Aboriginal and Torres Strait Islander people with disability – Australian Bureau of Statistics | Disability among Aboriginal and Torres Strait Islander people using data from the 2018 Survey of Disability, Ageing and Carers. |
Specific specialised intellectual disability health services in NSW | |
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Supports and builds the capability of the health system to meet the healthcare needs of people with intellectual disability in NSW. | |
Help people with intellectual or developmental disability access appropriate mental health care. | |
A service for children and adults in Western Sydney Local Health District. | |
Supporting children with intellectual disability and medical needs. | |
Special care dentistry for children and adults. |
Additional resources and links | |
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Intellectual disability actions for clinicians fact sheet – Australian Commission on Safety and Quality in Healthcare | Make reasonable adjustments for a person’s intellectual disability to create an inclusive environment and facilitate meeting the NSQHS Standards. |
Admission2Discharge together folder for people with a disability - South Eastern Sydney LHD | Facilitate timely transfer of relevant and current information. |
Carer Support Services have been established in all LHDs in NSW. | |
End of life program - Clinical Excellence Commission | A program and resources about improving end-of-life communication and care. |
Key topics - The Cerebra Centre for Neurodevelopmental Disorders | General background information on rare genetic syndromes associated with intellectual disability. |
School link - The Children's Hospital at Westmead. | Supporting the mental health of children and young people with intellectual disability. |
The Comprehensive Health Assessment Program (CHAP) – Australian Dept of Health and Aged Care | An evidence-based tool for conducting annual health assessments for people with intellectual disability in Australia. |
Comprehensive health assessments for adults with intellectual disability living in the community - Gordon LG, Holden L, Ware RS, et al. | Paper on health benefits and medical costs. |
Easy read health information - Easy Health (UK) | Useful for many different health conditions. |
Being a healthy woman fact sheets – Family Planning NSW | Resources to promote and protect the reproductive and sexual health and rights of people with disability. |
Rights and responsibilities information for people with intellectual disability - Illawarra Shoalhaven LHD | Share this easy read fact sheet with your patients. |
Yarning about disability- ISSUU | Caris Jalla’s book exploring Indigenous perspectives on disability. |
Focused on improving access to, and quality of mental health services for people with intellectual disability, including using data linkage. | |
Multimorbidity: clinical assessment and management – NICE guideline | Improving care and quality of life for adults with multiple long-term conditions by reducing treatment burden and by promoting shared decision-making. |
Learning disabilities: behaviour that challenges - quality standard – NICE | This covers the care of children, young people and adults with intellectual disability and challenging behaviour. |
Health fact sheets – Council for Intellectual Disability | Easy read information on health concerns and interactions for people with intellectual disability. |
Appoint an enduring guardian - NSW Trustee and Guardian | Advice on health and lifestyle decisions for people with reduced capacity. |
What is power of attorney? - NSW Trustee and Guardian | The most common questions relating to making a power of attorney. |
Oral care for people with disability – a resource for disability support workers - Department of Communities and Justice | For carers and disability support staff to provide oral healthcare for people with disability. |
Partnering with patients, carers and families - Clinical Excellence Commission | A model about the relationships clinicians build with patients, family and carers as partners in healthcare delivery. |
Rural carers of people with disabilities: making choices to move or to stay - Dew A, Happ V, Bulkeley K, et al. | Paper on understanding the decision–making process for carers of children with disability about location. |
A communication method to ensure the patient understands what they need to know. | |
Transition for children with intellectual disabilities - University of Hertfordshire | A UK website about intellectual disability and health. |
Trapeze: Sydney Children’s Hospitals Network’s health transition service | For health services and young people in NSW who are transitioning into adult health services – a service and resources. |
Making reasonable adjustments to epilepsy services for people with learning disabilities - Public Health England | Accessible information for service providers and resources on health conditions. |
Easy Read resources for people with intellectual disability – Australian Government Dept of Health and Aged Care | A collection of health fact sheets in Easy Read format. |
Fact Sheets on augmentative and alternative communication – Speech Pathology Australia | Understand communication using something other than speech. |
Prescribing psychotropic drugs to adults with an intellectual disability – Trollor J, Salomon C, Franklin C | A guide for when prescription is needed. |