Intellectual Disability
Over 400,000 people in Australia have intellectual disability.
Including their families, two million Australians are impacted.
Compared with the general population, people with intellectual disability experience:
- Over twice the rate of avoidable deaths.
- Twice the rate of emergency department and hospital admissions
- Hospital admissions costing twice as much.
- Higher rates of physical and mental health conditions.
- Lower rates of preventative healthcare.
People with intellectual disability (ID) are a priority population in the Central and Eastern Sydney PHN (CESPHN) region, having poorer health relative to the general population, higher health and social care needs, and other unique challenges 1. People with ID have multiple barriers to timely, affordable, and appropriately equipped health services 2,3. Furthermore, people with ID and their carers have difficulty navigating the health sector, highlighting the need for improved pathways and coordination of care 2,3. GPs also face challenges communicating and diagnosing health conditions within this population group, emphasising the need for education and training about ID and practice support to connect patients with the right services 4,5,6.
CESPHN has the largest by population of Australia’s Primary Health Networks, covering over 1.5 million people and includes the remote areas of Lord Howe and Norfolk Island 1. Approximately, 13,000 people with ID live in the CESPHN region, with a high proportion of those being children 7. Moreover, 24% of Aboriginal young people living in our region have been diagnosed with ID, a population group who already face multiple barriers to accessing healthcare 1. People from culturally and linguistically diverse backgrounds (CALD) with ID in our region also experience similar barriers, highlighting the need for a culturally tailored response.
In NSW, people with ID experience higher rates of poor health and greater service use (e.g., hospital services)8, with much lower rates of detection of chronic health conditions, and poor access to preventative healthcare (e.g., prescription medication)4. People with ID die prematurely, with the median age at death being 54 years (compared to the NSW median of 81 years in the general population)9. Importantly, a significant component of increased mortality among people with ID is due to preventable health conditions that may not have been diagnosed or treated10
CESPHNs submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability
Issues Paper – Health Care for people with cognitive disability
Primary Care Enhancement Program (PCEP) – Improving health care for people with intellectual disability
CESPHN is one of four PHNs selected to lead the development of the PCEP over four years with a view to a national rollout.
It will give people with intellectual disability better access to appropriate, quality health services that meet their needs. The four lead PHNs will:
- Support health professionals in caring for people with intellectual disability.
- Facilitate access to appropriate, quality health services for people with intellectual disability.
- Promote take-up and quality of annual Medicare health assessments for people with intellectual disability.
- Help to ensure people with intellectual disability have equitable access to quality health prevention and health promotion programs.
- Ensure all of their programs are inclusive for people with intellectual disability.
The Council for Intellectual Disability is a key partner with the Government as the Primary Care Enhancement Program is developed and rolled out.
For further information please read Minister Hunts announcement here.
CESPHN PCEP – GROW: Supporting people with intellectual disability to grow healthy lives
This project aims to build capability and capacity of primary health care providers through system integration and improvements. Strengthening the pivotal role of primary care providers to meet the complex needs of people with intellectual disability, the GROW project team will promote information and initiatives that include:
To allow for person centred health care, it is important for health professionals to consider reasonable adjustments for people to participate in their health care. Does your practice consider Reasonable Adjustments?:
- Environmental – where the appointment is and how a person accesses the appointment
- Sensory – including light sensitivities, noise sensitivities, smell sensitivities, tactile sensitivities
- Communicative – e.g accessible resources and planning communication throughout including before (booking and reminders), during appointments and follow up (information provided)
- Behavioural – thinking about desensitization activities (e.g visit to health service first, social stories), timings of bookings e.g appointments at consistent times of the day14.
Care for people with disabilities can be effectively managed if there are clear guidelines in place for support staff and families/carers to know how to access their GP for medical care.11 Undertaking a process of regularly reviewing and refining general practice processes known as quality improvement activities (QIAs) can lead to positive changes in practices in addition to improving population health by reducing the burden of disease and health inequalities in your patients. Examples of QIAs that may be relevant in assisting with managing patients with intellectual disabilities can be found here.
For further information please email: digitalhealth@cesphn.com.au
General practitioners are the health professionals most commonly consulted by people with intellectual disability.
This group of patients frequently have unidentified and/or sub-optimally managed conditions that can be improved through regular health assessments specifically targeting commonly associated co-morbidity and health screening activities.12
To improve communication and coordination of care with those involved, it is important to have relevant health information in one spot. This can be achieved through the My Health Record as it can store medical history (past and current), medications, allergies, immunisations all accessible by healthcare providers.
Carers of people with intellectual disability can be authorised representatives of the My Health Record providing access, control, and peace of mind for the person they are caring for.
Further information please click here or email: digitalhealth@cesphn.com.au
Clinical Information Software (CIS), such as Best Practice, Medical Director etc. currently have clinical coding terminology for the overarching “Intellectual Disability” diagnosis and number of other associated conditions (this might differ by each CIS) which would come under the Intellectual Disability classification.
If you record either the diagnosis of Intellectual Disability or one of the associated conditions into the patient file, as a reason for visit or into Past Medical History, patient lists can be extracted through your CIS database search.
To some extent patients coming under Intellectual Disability diagnosis can also be identified by Clinical Audit Tools such as POLAR or PEN CAT. However, Intellectual Disability coding and management is yet to be effectively addressed by software vendors of CIS or clinical audit tools, and this project aims to engage with software vendors at higher levels to address any gaps in the current recording or identification of patients with Intellectual Disability, those eligible for Intellectual Disability Health Assessments and any associated treatments.
Our Digital Health team is here to help GPs and allied health professionals in our area with:
- Setting up telehealth including guidance and one-on-one information sessions to encourage all health professionals to feel confident in their ability to use video telehealth. Health professionals wanting to be set up for telehealth can complete the new clinic application form and send it to telehealth@cesphn.com.au
- Assistance and guidance with clinical information systems so patient records can be managed and transferred electronically.
- Assistance with registration and set up of My Health Record to assist in the streamlining of patient care
- Support with e-prescribing, e-ordering of pathology and radiology and e-referral
For further information please email: digitalhealth@cesphn.com.au
Health Assessments for people with intellectual disability are encouraged as they enhance patient care.
People with intellectual disability comprise 2–3% of the Australian population. They are more likely to experience poorer overall health status and a shorter lifespan than the general population. There is emerging evidence that general practitioner delivered health assessments lead to improved health outcomes for people with intellectual disability. Health assessments lead to increased case finding and detection of life-threatening conditions, mental health issues and sensory problems, and have subsequently led to increased clinical activity, improved self-care management education, increased health risk identification and disease prevention activity.13
Medicare Benefits Schedule (MBS) Health assessment for people with an intellectual disability:
A medical practitioner may select MBS Item 701 (brief), 703 (standard), 705 (long) or 707 (prolonged) to undertake a health assessment for a person with an intellectual disability depending on the length of the consultation which will be determined by the complexity of the patient’s presentation.
A health assessment for people with an intellectual disability is for patients who have significantly subaverage general intellectual functioning (two standard deviations below the average intelligence quotient (IQ)) and who would benefit from assistance with daily living activities.
The health assessment provides a structured clinical framework for medical practitioners to comprehensively assess the physical, psychological and social function of patients with an intellectual disability and to identify any medical intervention and preventive health care required.
Components of the health assessment for people with an intellectual disability
The health assessment must include:
- information collection, including taking a patient history and undertaking or arranging examinations and investigations as required;
- making an overall assessment of the patient;
- recommending appropriate interventions;
- providing advice and information to the patient;
- keeping a record of the health assessment, and offering the patient a written report about the health assessment, with recommendations about matters covered by the health assessment; and
- offering the patient’s carer (if any, and if the medical practitioner considers it appropriate and the patient agrees) a copy of the report or extracts of the report relevant to the carer.
Health assessment should cover the matters listed in the Medicare Health Assessment for people with and intellectual disability Proforma
If the health assessment is not undertaken by the patient’s usual medical practitioner or practice, a copy of the health assessment report should be forwarded to that medical practitioner or practice (subject to the agreement of the patient or his/her representative).
Medical practitioners should establish a register of patients who require annual health assessments and remind these patients when their next health assessment is due.
Further information regarding MBS Health assessments for people with an intellectual disability can be found here.
If an assessment identifies that a patient has a chronic medical condition and complex care needs, it may be appropriate for you to involve other health professionals in the patient’s care using the MBS Chronic Disease Management (formerly Enhanced Primary Care of EPC), utiliising GP Management Plans (GPMP) and Team Care Arrangements (TCAs)
The CESPHN region has two HealthPathways sites - South Eastern Sydney and Sydney HealthPathways
HealthPathways Sydney currently has a suite of intellectual disability pathways:
- Intellectual Disability in Adults - Genetics
- Health Assessment for Adults with an Intellectual Disability
- Mental Illness in Adults with Intellectual Disability
- Challenging Behaviours in Adults with Intellectual Disability
- Intellectual Disability
Additional pathways have been identified for further localisation/development/review as part of a large-scale project in consultation with various key stakeholders in the area of intellectual disability.
The clinical content of the pathways willl be shared across both Sydney and South Eastern Sydney HealthPathways programs, however the referral and service information will reflect the processes and specific providers for each region.
South Eastern Sydney is still working on their referral pathways which will be published upon completion.
Health professionals can request access from their respective HealthPathways site by following these links:
Sydney: Community Health Pathways
South Eastern Sydney: Community Health Pathways
2020 Foundation
Specialist Intellectual Disability Health Team Workshop Webinars:
The Specialist Intellectual Disability Health teams of SLHD and SESLHD, in partnership with Central and Eastern Sydney PHN, have developed a series of workshops with the aim to increase awareness of how-to better care for people with intellectual disability in general and allied health practice.
Recorded sessions now available in our video library
Supporting, testing and treating people with intellectual disability through COVID-19
Health of people with intellectual disability – Setting the Scene
Health of people with intellectual disability – Adolescence and Early Adulthood
Health of people with intellectual disability – Specific conditions across the lifespan
Health of people with intellectual disability – Focus on complex health issues
2021
Disability Confidence Training will be included in the CPD event calendar for 2021. With additional targeted intellectual disability education sessions currently being developed and will be advertised in CESPHN Events Calendar and promoted through CESPHN communication channels.
Adult Intellectual Disability Mental Health (AIDMH) ECHO
AIDMH ECHO is a NSW Health capacity building initiative that supports healthcare professionals from diverse disciplines and service settings to improve mental health outcomes for people with an intellectual disability. Through participation, healthcare professionals can develop confidence and specialised knowledge to deliver specialised mental health care to adults with intellectual disability within their own local communities.
Please click here for further information.
There are two teams located within the CESPHN region:
1. SES SIDHT (South East Sydney Specialist Intellectual Disability Health Team) which is located at St George Hospital
2. STrIDeS (Specialist Team for Intellectual Disability Sydney) which is located at Croydon Community Health Centre
Evidence shows that people with an intellectual disability have a higher prevalence of physical and mental conditions, higher levels of morbidity and have lower life expectancies than the rest of the population.
Background In 2010-11 the NSW Government funded the initial establishment of three pilot specialised intellectual disability health teams and the ACI Intellectual Disability Health Network. One of the pilot teams was the South Eastern Sydney’s Metro Regional Intellectual Disability (MRID) Team.
In 2018-19 the NSW government announced recurrent funding for three additional Specialised Intellectual Disability Health Teams in NSW as well as funding to continue and further refine and test the service model and approach to capacity building. With this funding, STrIDeS was established.
Aims and Service Offerings
The Specialist Teams aim to better address the health needs of people with an intellectual disability across their lifespan and improve their access to services. The team will:
- Offer a time limited clinical service to children, teens and adults with an intellectual disability who have complex health conditions and a current unresolved health issue that can’t be addressed through usual care providers and pathways.
- Conduct an assessment, develop a health care plan, coordinate referrals to specialists and support the person’s treating paediatrician or GP to implement and monitor the health care plan.
- Provide capacity building services for mainstream health staff providing care to people with an intellectual disability.
Collaboration with mainstream clinicians and GPs is key.
For further information or would like to make a referral please contact:
- Based St George Hospital in Kogarah SESLHD ID Team SESLHD-SpecialistIntellectualDisabilityHealthTeam@health.nsw.gov.au Ph: 8566 1222
- Based at Croydon Community Health Centre STrIDeS ID Specialised Health Team SLHD-STRIDES@health.nsw.gov.au Ph: 9378 1364/ 9378 1100
There are two statewide IDMH Hubs:
- Statewide Intellectual Disability Mental Health Outreach Service (SIDMHOS), hosted by Sydney Local Health District
- Sydney Children’s Hospital Network Mental Health and Intellectual Disability Hub (SCHN MHID Hub) hosted by Sydney Children’s Hospital Network.
These Hubs have been established to support Local Health Districts and Specialty Health Networks in offering tailored, evidence-based care to people with intellectual disability and complex mental health problems across NSW.
The CESPHN Disability Network is a very active forum with wide membership of 260 members from across the health and disability sectors, including GPs, Allied and community health practitioners, professional bodies, NGOs, NDIA, NSW Ministry of Health, university and hospital representatives, people with disability and their carers.
The network was established in late 2016, with the aim to facilitate a greater understanding of the health role within the disability sector, particularly as it intersects with the NDIS and the implications for participants within the scheme and those falling outside of it.
The forum provides an avenue for shared understanding and learnings, as well as allowing for robust debate on new health and disability policy as it is shaped and implemented.
Meetings are held bi-monthly, if you would like to join the Disability Network and for further information, please email j.denford@cesphn.com.au
https://www.cesphn.org.au/general-practice/help-my-patients-with/ndis
https://www.cesphn.org.au/allied-health/help-my-patients-with/engaging-with-the-ndis
https://www.cesphn.org.au/community/services-in-your-region/disability
- Disability COVID-19 Resources – a range of easy read information regarding COVID-19 for families carers and workers
- A series of high-quality advice sheets for health practitioners and health services have been developed to enable a tailored approach to health service provision in relation to COVID-19 prevention, screening and management for people with intellectual or developmental disorders, these have been recently released by the Department of Health. The 7 fact sheets can be found herewhich includes an advice sheet for Primary Health Staff
- 'How can GPs assist people with intellectual disability during COVID-19?' by Dr Aline Smith
- 'Disability Management COVID-19: A GP view' by Dr G Nair-Smith
Below is a list of resources to assist health providers to support, and improve the experience of health care for People with Intellectual Disability
- UNSW Intellectual Disability Behaviour Support Program
- Department of Developmental Disability Neuropsychiatry (3DN)
- 3DN - Making health information accessible for people with an intellectual disability/easy read information sheets
- Centre for Developmental Disability Health-Monash Health
- Agency Clinical Innovation
- Top 5
- The Hospital Communication Book
- Say Less, Show More
- Admission 2 Discharge Together (A2D)
- Key Word Sign
- Teachback
- Just checking
- Family Planning NSW
- CarersNSW
- My Carer Gateway - Facilitated by the Benevolent Society
- Carer Gateway
- Carer Peer Connect
- Siblings Australia
- Kids Help Line
- Council for Intellectual Disability Health Resources
- My Health Matters Folder – Council for Intellectual Disability
- Council for Intellectual Disability - My Health Matters folder
The Council for Intellectual Disability is a key partner with the Government as the Primary Care Enhancement Program is developed and rolled out.
The project will include developing training for PHN representatives and a suite of resources for GPs and other primary care professionals, as well as health promotion materials for people with intellectual disability.
The project’s goals are to:
- Increase knowledge, skills and confidence of health professional to work with people with intellectual disability.
- Increase capacity of people with intellectual disability to understand and share their health needs with health professionals.
- Improve communication, diagnosis and treatment of people with intellectual disability.
For more information on the project contact Hayley Brooks, Manager, Inclusion Projects on 1800 424 065 or email hayley@cid.org.au
Appendix - References
- Central and Eastern Sydney PHN. Central and Eastern Sydney PHN 2019 Needs Assessment. 2019 [cited on 2020 June 1].
- Reppermund S, Srasuebkul P, Heintze T, et al. Cohort profile: a data linkage cohort to examine health service profiles of people with intellectual disability in New South Wales, Australia. BMJ Open. 2017;7: e015627.
- Reppermund S, Heintze T, Srasuebkul P, et al. Health and wellbeing of people with intellectual disability in New South Wales, Australia: a data linkage cohort. BMJ Open. 2019;9:e031624
- Weise J, Pollak A, Britt H, Trollor J. Primary health care for people with an intellectual disability: an exploration of consultations, problems identified and their management in Australia. Journal of Intellectual Disability Research. 2017;61(5):399-410.
- Weise J,Trollor J,N,Pollack A, Britt H. Primary health care for people with an intellectual disability: an exploration of demographic characteristics and reasons for encounters from the BEACH programme. Journal of Intellectual Disability Research. 2016;6(11):1119-1127.
- Tuffrey-Wijne I, Goulding L, Giatras N, Abraham E, et al. The barriers to and enablers of providing reasonably adjusted health services to people with intellectual disabilities in acute hospitals: evidence from a mixed-methods study. BMJ Open. 2014;4(4): e004606.
- Carnemolla P, Srasuebkul P, Robertson H, et al. Prevalence of intellectual disability in New South Wales, Australia: a multi-year cross-sectional dataset by Local Government Area (LGA). Data in Brief. 2020;31:105673.
- Srasuebkul P, Trollor J. Factors related to emergency department service use in people with intellectual disabilities in New South Wales. Journal of Intellectual Disability Research. 2016;60(7):739.
- Florio T, Trollor J. Mortality among a cohort of persons with an intellectual disability in New South Wales, Australia. Journal Applied Research Intellectual Disability. 2015;28(5):383-93.
- Trollor J, Srasuebkul P, Xu H, et al. Cause of death and potentially avoidable deaths in Australian adults with disability using retrospective linked data. BMJ Open. 2017;7(2):e013489.
- Smith, A. How can GPs assist people with intellectual disability during COVID? 2020. [cited 2021 May 18]. Accessible at: [https://www.cesphn.org.au/preview/ndis/3134-how-can-gps-assist-people-with-intellectual-disability-during-covid-as/file]
- Lennox N, Eastgate G. Adults with intellectual disability and the GP. Australian Family Physician. 2004;33(8):601-6.
- Gordon L, Holden L, Ware RS, et al. Comprehensive health assessments for adults with intellectual disability living in the community. Australian Family Physician. 2012;41(12):969-972.
- Council for Intellectual Disability. CID PHN project co-design workshop: power point presentation slide 8. 2021. [cited 2021 May 18].
For further information please email: IntellectualDisability@cesphn.com.au
To find out more about CESPHN the Central and Eastern Sydney PHN Services Guide is a useful resource.