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Resources

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.

1. There is a local champion(s)/mentor(s)/key contact for improved healthcare for people with ID within the LHD.

Context report and toolkit for health services for people with intellectual disability, 2015 – Section 16 page 57 speaks about the role of the specialised nurse and illustrates this with a case study

Daniel’s story – A video in which a carer and medical professional speak about improving access through local champions

Discharge case studies – A summary of findings including how a key contact was important

Clinical developmental coordination – shows the importance of a key coordinator role

Nurses’ role in caring for people with a comorbidity of mental illness and ID: a literature review

ACI ID training videos where health staff discuss their roles

2. A senior staff member of the LHD has responsibility for leadership in coordinating disability issues.

3. All staff (including clerical and clinical staff) are provided with disability awareness training including a values and attitudes component.

Health Education and Training Institute (HETI) online training on disability

UNSW ID Mental Health e-learning website

ACI ID training videos where doctors, nurses and consumers discuss their own insights

4. People with ID are identified in LHD records, including whether they are participants in the NDIS.

5. Policies and procedures are reviewed for their impact on inclusiveness of people with ID.

Checklist for including people with disability – Checklist for planning, developing, implementing and evaluating inclusive policies, programs, procedures and strategies

Real people, real lives – Stories about people with ID accessing NSW health services

Guidelines on research inclusive of people with intellectual disability

Working with people with ID in healthcare settings – a fact sheet from the Centre for Developmental Disability Health Victoria

Capacity toolkit from the NSW Attorney General’s Department about a person’s capacity to make their own decisions

Rights and responsibilities information for people with ID – developed by Illawarra Shoalhaven LHD

Making mental health policy inclusive of people with intellectual disability intellectual disability: A summary for service providers (UNSW)

6. People with ID and their carers are involved in health care planning and setting health goals in respect of their own health care.

Improving the experience of hospitalisation for people with intellectual disability (Daniel’s Story) – a video discussing what matters most from the viewpoint of a parent

Accessing care for a patient with intellectual disability – a video in which Robert discusses what matters most to him as a person with ID

Orientation to caring for a patient with intellectual disability – a video for health staff

Patient experience and consumer engagement (PEACE) – Resources about using the co-design methodology in service design

Compliments and complaints – an accessible resource developed by Illawarra Shoalhaven LHD

Being a healthy woman – a resource for women with ID about reproductive and sexual health

Easy read health appointment letter – an example of an adapted appointment letter

Top5 – Toolkit – a resource to assist LHDs meet the needs of people receiving health services

9. People with ID who have chronic disease are supported to access chronic disease management programs, out-of-hospital programs and preventative health programs.

Say less show more visuals – Resources for training and using visuals inclinical encounters

Medicare health assessments resource kit – Fact sheets and proformas

Dying to talk – research on speaking with people with ID about end-of-life planning

Positive cardiometabolic health for people with intellectual disabilities: An early intervention framework

Feasibility of a group-based school exercise intervention for children with intellectual disabilities – Journal of Science and Medicine in Sport Easy read health fact sheets

NSW Ombudsman Expert Forum - Rights Project for People with Disability resources

Preventing deaths of people with disabilities in care – Information for staff of disability services – from the NSW Ombudsman

10. Local service mapping and liaison has been undertaken in the LHD to identify all NGO disability services and Ability Linkers and NDIA outlets.

Mapping of specialised health services for people with ID in NSW (now available with password on request from LHD or Tracey.szanto@health.nsw.gov.au)

Co-design toolkit – a resource to support designing health services in collaboration with service users and providers

Schoolkit – a resource to support school clinics for children and young people with ID

Guidelines on the pathways to care for children and adolescents with intellectual disability and challenging behaviour and/or mental health problems

Primary health networks – contact details, resources and activities according to area

NDIS legislation – information  and assistance

11. Linkages have been established between the LHD and specialised disability health teams. There is consultation regarding developing protocols about hospital admissions, discharges and ED admissions for people with ID.

Partnering with disability services to develop a disability action plan – a presentation by Illawarra Shoaohaven LHD

Assessing health needs of children with intellectual disabilities: A formative evaluation of a pilot service – from Research and Practice in Intellectual and Developmental Disabilities

Diagnostic assessment services – a listing

Admission to discharge co-design toolkit(SESLHD)

Guidelines on sedation and/or analgesia for diagnostic and interventional medical, dental or surgical procedures – guidance for when the patient has ID

Passport to Health – a resource for use in health service encounters  for people with ID

Evaluation report on the developmental psychiatry clinic – from the Centre for Developmental Studies