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
Agency for Clinical Innovation	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 Health	NSW Ministry of Health website with links to health information, policy and guidance.
First Peoples Disability Network	A national advocacy organisation of and for Aboriginal and Torres Strait Islander people living with disability.
Council for Intellectual Disability	Advocacy, information, workshops and resources, including easy read health information sheets, with and for people with intellectual disability.
NSW Ombudsman	The NSW Ombudsman supports people with disability, including in health-related matters.
NSW Health Education and Training Institute	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 Hospital and Aged Care Pricing Authority	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.
The ACI Transition Care Network	Support the transition from paediatric to adult health services for young people with chronic health problems and disabilities.

Legislation and policy
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.
Disability Inclusion Act 2014 – overview of the act	An easy read summary of the Act.
The National Disability Insurance Scheme Act (2013)	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.
National Disability Insurance Scheme	The implementation of the NDIS, including information and resources.
My health record system and healthcare identifiers	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.
NSW Carers (Recognition) Act 2010	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.
National Disability Discrimination Act 1992	Aims to eliminate, as far as possible, discrimination against persons on the ground of disability.
National Health Reform Agreement (NHRA)	Signed by all Australian governments, it aims to improve health outcomes for all Australians and ensure our health system is sustainable.
Royal Commission into Violence Abuse Neglect and Exploitation of People with Disability (2023): Final report	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
The guide: Accessible mental health services for people with an intellectual disability: A guide for providers – 3DN, UNSW	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.
General Medical Council (UK): Learning disabilities	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.
GeneEQUAL toolkit	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
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.
NDIS review: Working together to deliver the NDIS	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.
Transition between inpatient hospital settings and community or care home settings for adults with social care needs - NICE	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
Specialised intellectual disability health services	Supports and builds the capability of the health system to meet the healthcare needs of people with intellectual disability in NSW.
Statewide intellectual disability mental health hubs	Help people with intellectual or developmental disability access appropriate mental health care.
Specialist Dental Centre	A service for children and adults in Western Sydney Local Health District.
Allowah Presbyterian Children's Hospital	Supporting children with intellectual disability and medical needs.
Sydney Dental Hospital	Special care dentistry for children and adults.

Additional resources and links
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.
Support for carers in NSW	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.
National Health Medical Research Council Partnerships for better health project, improving mental health outcomes for people with an intellectual disability – 3DN, UNSW	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.
Teach-back	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.