Links to other useful information

Have you completed the self-assessment tool?

If you have already completed the self-assessment tool, here are the links to next steps for the specific supports and resources for each of the key actions. Please use these to research further information to implement change in your organisation.

Agencies/Organisations
Agency for Clinical Innovation	The ACI works with clinicians, consumers and managers to design and promote better healthcare for NSW
NSW Health	NSW Government health website with links to health information and guidance
First Peoples Disability Network	FPDN is governed by Aboriginal and Torres Strait Islander people living with disability
NSW Council for Intellectual Disability	The NSW CID works with and for people with ID and has available useful health information sheets
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 NSWHealth staff through education and training
Department of Developmental Disability Neuropsychiatry, UNSW	3DN is part of the School of Psychiatry, UNSW Medicine and focuses on the health and mental health of people with ID
Intellectual Disability Behaviour Support Program – UNSW Faculty of Arts and Social Sciences	The program aims to increase knowledge and workforce capacity in the delivery of services to people with cognitive disabilities with complex support needs
Independent Hospital Pricing Authority	IHPA implements the national ABF for Australian public hospitals

Legislation / 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	A summary of the Act
The National Disability Insurance Scheme Act (2013)	A scheme to fund individualised support for eligible people with disability
National Disability Strategy (2010–2020)	The national approach to supporting people with disability to maximise their potential and participate Australian society
National Disability Insurance Scheme	The implementation of the Scheme
My Health Record system and Healthcare Identifiers	A digital health record for a patient containing a summary of their health information
NSW Health Disability Inclusion Action Plan 2016–2019	NSW Health system’s plan for access to services and employment for people regardless of disability
NSW State health plan: Towards 2021	A strategic framework bringing together NSW Health’s existing plans
Stronger together: A new direction for disability services in NSW 2006–2016	A 10-year plan involving major reforms and service expansions
NSW Carers (Recognition) Act 2010	The Act defines who a carer is and establishes the NSW Carers Charter
Admission to Discharge Care Coordination	Five steps in coordinating patient care to improve the patient experience and flow
Memorandum of understanding between ADHC & NSW Health in the provision of services to people with an intellectual disability and mental illness	The MOU outlines the principles for collaboration and the guidelines outline the procedures.
NSW Health & Ageing and Disability and Home Care (ADHC) joint guideline	Awareness raising about staff roles and responsibilities for people with disability before, during and after transfer of care from hospital
Responding to needs of people with disability during hospitalisation	A framework for the provision of care for people with disability during hospitalisation
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 (UK)
Challenging behaviour and learning disabilities overview – NICE	Challenging behaviour and learning disabilities overview

Training
The guide: Accessible mental health services for people with an intellectual disability: A guide for providers	National framework for mental health service providers working with people with ID
Intellectual disability mental health core competency framework: A manual for mental health professionals	The skill set required by mental health professionals working with people with ID
Into practice: Tips for doctors	This General Medical Council (UK) website aims to help doctors provide better care for people with ID. A practical resource for developing the ID workforce from the UK.
Meet Jessica Workshop Resources – School-Link at the Children’s Hospital, Westmead	NSW CHW resource promoting an awareness of the needs of children and adolescents with ID
Intellectual disability: mental health e-learning (UNSW 3DN)	Free e-learning about ID for professionals, carers and consumers

Reports / Standards / 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 ID
Cause of death and potentially avoidable deaths in Australian adults with intellectual disability using retrospective linked data	A 2017 report by Julian Trollor, Preeyaporn Srasuebkul, Han Xu, Sophie Howlett
Evaluation report on the Developmental Psychiatry Clinic	The Developmental Psychiatry Clinic is a partnership between the Children's Hospital Westmead and Statewide Behaviour Intervention Service (ADHC)
Intellectual disability resources	The Royal College of Psychiatrists produces a range of materials for mental health professionals and the public
Health status and risk factors of Australians withdisability 2007–08 and 2011–12	Health-related factors affect the health status of Australians with disability
Intellectual disability health content within medical curriculum: an audit of what our future doctors are taught	Undergraduate opportunities as a way of building future workforce capability
Improving healthcare provided to people with intellectual disability: The role of mainstream and specialist services	Position statement by the NSW ACI ID Health Network
Transition between inpatient hospital settingsand community or care home settings for adults with social care needs	Recommendations for health and social care practitioners in meeting the needs of people with ID
Some steps up the mountain: Audit report on action from the National roundtable on the mental health of people with intellectual disability	Audit report on action from the National Roundtable on the Mental Health of People with ID
Report of reviewable deaths in 2012 and 2013 volume 2: Deaths of people with disability in residential care	Recommendations from the NSW Ombudsman include the support for people in residential care to maximise their health outcomes.
Creating Inclusive NSW hospitals	Addressing the need for health services to meet the needs of people with disability
Psychotropic drug prescribing for people with intellectual disability, mental health problems and/or behaviours that challenge: practice guidelines	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

Specific specialised ID health services in NSW
For a full list see Mapping of NSW Specialised ID Health Services (2015) – Password protected; seek LHD permission
The Developmental Psychiatry Clinic	A multidisciplinary clinic for young people with ID and emotional/ behavioural problems
Disability Assessment and Rehabilitation Team for Young People (DARTYP) Concord	A specialist team working with people with multiple lifelong disabilities
Schoolkit	A multidisciplinary health service for people with ID, across the age ranges
Northern Sydney Intellectual Disability Health Team	NSIDHT is a multidisciplinary health service for school aged children, adolescents and adults diagnosed with ID and complex health needs
NSW Developmental Disability Health Unit	DDHU is a statewide health clinic for adolescents and adults with a developmental disability
Specialist Dental Centre	A service for children and adults in Western Sydney LHD
Child development services at The Children’s Hospital at Westmead	A multidisciplinary health service for children and adolescents diagnosed with ID and complex health needs
Metro Regional Intellectual Disability (MRID) Kogarah	Based at St George Hospital a specialist service for people of all ages with intellectual disability
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
The NSW Ministry of Health’s Disability website	NSW Health information of interest to people with disability and staff; links to information and resources
The Admission2Discharge Together Folder for People with a Disability A2D	Created to facilitate timely transfer of relevant and current information to enable hospital staff to meet the needs of people with ID and thereby improve their hospital journeys and health outcomes
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 syndrome associated with ID
CHW School Link	Supporting the mental health of children and young people with ID
Comprehensive Health Assessment Tool (CHAP)	A useful questionnaire for a GP to use in consultation with a person with ID using prompts and guidelines relating to health issues
Comprehensive health assessments for adults with intellectual disability living in the community	Health benefits and medical costs
Conversations with parents at the time of diagnosis	A resource for early intervention staff
Easy Read health information	Useful for many different health conditions
Disability – Family Planning NSW	Resources to promote and protect the reproductive and sexual health and rights of people with disability
Rights and responsibilities – Illawarra Shoalhaven LHD	Information in accessible format
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	Focused on improve access to, and quality of mental health services for people with ID, 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: challenging behaviour, quality standard – NICE	This covers the care of children, young people and adults with ID and challenging behaviour
Health fact sheets – CID	Easy Read information on health concerns and interactions for people with ID
Appoint an enduring guardian	Advice on health and lifestyle decisions for people with reduced capacity
NSW Ombudsman expert forum – rights project for people with disability resources	A list of resources focused on people with complex needs and marginalised groups
Attorney frequently asked questions	The most common questions relating to making a Power of Attorney from the NSW Trustee and Guardian
Oral care for people with disability – a resource for disability support workers	For carers and disability support staff to provide oral healthcare for people with disability
Partnering with Patients program	A model about the relationships clinicians build with patients, family and carers as partners in healthcare delivery
Psychotropic medication	A list of useful resources in accessible format about psychotropic medications
Rural carers of people with disabilities: making choices to move or to stay	Understanding the decision – making process for carers of children with disability about location
End-of-life for people with intellectual disability	Presentation slides on the end-of-life for people with ID Forum
The Teach-Back Method	A communication method for staff and others to use to ensure the patient understands what they need to know
The Transition Care Network – ACI	Supporting the transition from paediatric to adult health services for young people with chronic health problems and disabilities
Transition for children with intellectual disabilities	A UK website about ID and health
Trapeze: a supported leap into adult health	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	Accessible information for service providers and resources on health conditions (UK)