Effectiveness and Cost‐Effectiveness of Models of Healthcare for People With Intellectual Disability in Australia: A Scoping Review

ABSTRACT

Background

People with intellectual disability experience significant gaps in healthcare delivery resulting in poor health outcomes. Appropriately designed healthcare is required to meet the needs of this population and achieve better health outcomes. Little is known about the structure of healthcare delivery for people with intellectual disability and whether it is effective or cost‐effective. To improve health services, this scoping review sought to describe how models of healthcare are structured and summarise evidence for their effectiveness and cost‐effectiveness for people with intellectual disability in Australia.

Methods

A preliminary search of literature describing models of healthcare for people with intellectual disability in Australia was conducted to generate a description of how healthcare is delivered for people with intellectual disability. Following PRISMA‐ScR guidelines, an electronic search of peer‐reviewed literature of four databases (MEDLINE, CINAHL, PsycINFO and Cochrane Library) was undertaken in August 2024 and updated in February 2025, and websites of government departments of health across Australia were searched for grey literature. All study designs conducted in any healthcare setting in Australia were included if evaluation data were available. Outcome data related to the person with intellectual disability, carers, clinicians/service providers or health services were extracted. Data were synthesised qualitatively.

Results

Fifteen publications were identified including 10 peer‐reviewed articles and five reports in the grey literature. The following components of healthcare delivery were described: reasonable adjustments, person‐centred care, capacity building, care coordination, cross‐sectoral coordination and specialist multidisciplinary teams. Each model of care was associated with some evidence of effectiveness. Cost‐effectiveness was found with models that used cross‐sectoral care coordination.

Conclusions

The models of care were heterogeneous, and evaluations indicated positive outcomes including better health outcomes and reduced costs. The scope of evaluations and therefore generalisability of findings was limited. More high‐quality research and suitable measures of outcome are needed to guide the design of best practice healthcare for people with intellectual disability. These findings provide important guidance for the implementation of the National Roadmap for Improving the Health of People with Intellectual Disability, a current policy initiative in Australia. The effectiveness and cost‐effectiveness of cross‐sectoral care coordination suggest that coordinated care at the intersection of the health and disability sectors could improve health outcomes. We suggest that strategies for effective delivery of healthcare are structured and standardised to enable more widespread implementation and evaluation by policy makers and practitioners.

1. Introduction

People with intellectual disability experience poor health outcomes compared with the general population. For example, they are at risk of poorer physical health issues such as epilepsy and vision and hearing impairments (Liao et al. 2021) and are twice as likely to have a psychiatric disorder and experience a threefold prevalence of serious mental illness compared with the general population (Arnold et al. 2025). They experience significantly higher rates of potentially preventable hospitalisations across vaccine‐preventable, acute and chronic health conditions compared with the general population (Weise et al. 2021). There is greater risk of emergency department (ED) presentations and readmissions for psychiatric conditions and epilepsy management (Li et al. 2018; Liao et al. 2022). When hospitalised, people with intellectual disability are exposed to greater safety risks due to miscommunication, medication errors and suboptimal care when accessing mental health services (Shady et al. 2022; Duckworth and Wilson 2022; Trollor 2021). Likewise, palliative care services are under‐utilised due to a variety of barriers such as delay in diagnosis of life‐limiting conditions and late referrals to hospice care (Friedman et al. 2012). With high prevalence of multimorbidity (Cooper et al. 2015; Kinnear et al. 2018), meeting the health needs of people with intellectual disability can be challenging. This is particularly so within a siloed health system where there may be little coordination of care across specialities or sectors.

Within the population of people with intellectual disability, there are subgroups who are more vulnerable to the impacts of social determinants of health, including poverty, unemployment, discrimination, violence and inaccessible healthcare (World Health Organization 2025; Emerson 2021). These disadvantages impose more reliance on public health services with long wait times and reduced choices of service providers. In Australia, the health system uses a hybrid model, whereby the government pays for basic health service use and individuals can purchase additional private health insurance (Dixit and Sambasivan 2018). People who hold private health insurance have greater choice of their preferred specialist, where elective surgery is undertaken, and can avoid long waiting lists in the public sector. However, this option is generally not accessible to people with low incomes including many people with intellectual disability due to its high cost, exacerbating the impacts of socio‐economic inequities on health outcomes and suggesting that multiple strategies for reducing inequalities will be needed.

Given current inequities in health outcomes, the Australian government developed the National Roadmap for Improving the Health of People with Intellectual Disability (the Roadmap) as part of its Primary Healthcare 10‐year plan in 2021 (Australian Government 2021). One objective of the Roadmap is to develop better models of care for people with intellectual disability where it is hoped that better service models could enable better health outcomes. The term ‘model of care’ is used variably in the literature and generally refers to how services are delivered (World Health Organization 2024). Not surprisingly, models of care differ widely and are influenced by local culture, professional and societal resources, community attitudes, stigma and the level of support available for investment and development of services (Roy et al. 2023). To improve healthcare practices for people with intellectual disability, it is important to understand how services are being delivered. Models of care are foundational to the delivery of evidence‐based practice and refer to how health services are organised and delivered to accompany the assessment and treatment of specific health needs. Internationally, models of healthcare are evolving, and as an example, there is increasing interest in value‐based healthcare, where medical providers are funded based on outcomes rather than processes (Ipsen and Sheppard 2025). Accordingly, consideration of how healthcare is delivered, for example, using strategies such as care coordination, is being recognised as a driver that could deliver better health outcomes.

1.1. The Present Study

Because healthcare delivery is sensitive to local enabling and constraining factors (World Health Organization 2024), better understanding of the effectiveness of models of care within countries could provide learnings for specific policy goals and data could be compared internationally. Using Australia as an exemplar, the objectives of this study therefore were to identify models of healthcare for people with intellectual disability and summarise evaluations of their effectiveness and cost‐effectiveness.

2. Methods

2.1. Preliminary Search and Generation of a Working Definition of Models of Care for People With Intellectual Disability

A preliminary literature search of peer‐reviewed and grey literature on Australia models of care for people with intellectual disability was conducted to develop the search terms for the scoping review. At the same time, the found literature was examined to identify the characteristics of each model of care and generate a working definition for a model of care. We found that most documents described the ‘who’, ‘what’, ‘when’, ‘where’ and ‘how’ their services were delivered. These characteristics of each model of care were extracted and classified into one of three categories (Figure 1). The category ‘Implementation’ referred to who conducted the healthcare activity (e.g., single practitioner, interdisciplinary or multidisciplinary team) and where (e.g., metropolitan or rural) and could have referred to the healthcare sector setting (primary, secondary or tertiary). The category ‘Elements’ referred to what healthcare was delivered and included activities such as capacity building activities for patients or clinicians and coordinating care with other healthcare professionals or across sectors other than health such as with disability or education. The category ‘Approach’ referred to how the healthcare was delivered and, for example, included activities that were person‐centred and included care that respects and responds to the needs, values and preferences of the patient (Australian Commission on Safety and Quality in Health Care 2022) or reasonable adjustments that included refinements to usual clinical processes that were intended to reduce barriers and improve access and participation of the people with intellectual disability in their care (Heslop et al. 2019). Together, the categories provided a framework for how specific healthcare activities could be adapted to the healthcare needs of people with intellectual disability and formed the working definition of models of care.

FIGURE 1.

Diagram showing the three categories of models of care activities and sample components.

2.2. Scoping Review

The scoping review was conducted in accordance with the Joanna Briggs Institute methodology for scoping reviews (Peters et al. 2020, 2022) and is registered under Open Science Framework Registries (Registration DOI: https://doi.org/10.17605/OSF.IO/XJ5NC). See PRISMA‐ScR checklist (Tricco et al. 2018) in Data S1. The review involved exploration of the concept of a model of care and searching the peer‐reviewed and grey literature for any evidence from intervention studies, which was then summarised.

2.2.1. Search Strategy

The search strategy comprised various combinations of terms representing intellectual disability, models of healthcare, effectiveness and cost‐effectiveness in Australia.

2.2.1.1. Peer‐Reviewed Literature Search

The search was first conducted in August 2024 and updated in February 2025 across four databases (MEDLINE, CINAHL, PsycINFO and Cochrane Library). All study designs that evaluated an Australian model of care and were published from year 2006 when United Nations Convention on the Rights of Persons with Disabilities (CRPD) was adopted in the United Nations (United Nations 2006) were included. We also consulted with experts in the field to capture additional literature. We included healthcare services for people with ‘complex medical needs’ such as people with genetic and chromosomal disorders. Many rare genetic conditions (e.g., Rett syndrome and Fragile X syndrome) and chromosomal disorders (e.g., Trisomy 21) have associated intellectual disability (Genetic and Rare Diseases Information Center 2024; Krishnan et al. 2021; National Organization for Rare Disorders 2024); hence, terms for ‘intellectual disability’ and ‘complex medical needs’ were included in the search terms. The search strategy used for the search are presented in the online protocol (DOI: https://doi.org/10.17605/OSF.IO/XJ5NC, Data S2). The search terms described intellectual disability as the population and models of care for health as the topic of interest. Studies were limited to Australia. Accordingly, the search identified literature on Australian healthcare models, systems or frameworks for people with intellectual, cognitive or developmental disabilities, focusing on strategies for service delivery, pathways and other care processes. One author (D.P.) conducted the database searches, imported articles into Endnote and removed duplicates.

2.2.1.2. Grey Literature Search

An online search was performed via Google search engine using the following keywords: ‘models of health care in Australia’, ‘health services in Australia’, ‘intellectual disability health Australia’, ‘Aboriginal health intellectual disability’ and ‘complex medical care Australia’ to identify health services available for people with intellectual disability. The first 10 pages from each search were screened for relevant services. Next, the websites of Departments of Health of the Commonwealth and each Australian state and territory department of health and healthcare professional associations were searched for relevant models of care data. The grey literature searches were conducted by one reviewer (R.L.) and imported into a shared folder.

2.2.2. Inclusion and Exclusion Criteria

Papers, documents or reports with any study design were included if the patient participants were children or adults with intellectual disability, the model of care was implemented in Australia and evaluation data for effectiveness or cost‐effectiveness were presented. Papers, documents or reports were excluded if they focused on acquired brain injury or comorbid cognitive impairment that began in adulthood, the model of care lacked a health component and specific interventions were evaluated rather than a model of care (e.g., effectiveness of an exercise programme).

2.2.3. Screening

Two reviewers (D.P. and R.L.) screened the articles independently, reading the abstracts and titles and then proceeding to screening the full text to confirm inclusion of the article. Both reviewers (D.P. and R.L.) reviewed the identified grey literature independently for relevance to the study's objectives. Reviewers discussed all included and excluded articles, and any differing views were resolved through discussion with the wider team until a consensus was reached.

2.2.4. Data Extraction, Quality Assessment and Synthesis

The problem or population, intervention, comparison, outcome and study design (PICOS) structure was used to guide data extraction. Data extracted from peer reviewed sources included the following information: study title, study design, location, population(s), components of the model of care (classified as strategies of implementation, elements and approach, Figure 1), outcome measures and data describing effectiveness and cost‐effectiveness. Outcomes were classified in relation to the person with intellectual disability/carers, service providers and service use. Data extracted from the grey literature included the name and description of the health service, location, components of the model of care, outcome measures and data for effectiveness and cost‐effectiveness.

No written consent has been obtained from the patients as there is no patient‐identifiable data included.

3. Results

3.1. Search Results

The search yielded 120 publications (108 from database searches and 12 from other sources). Twenty‐three duplicates were removed, and 87 publications were excluded following title, abstract and full‐text screening. The predominant reason for exclusion of papers was the absence of evaluative data on effectiveness or cost‐effectiveness. Ten peer‐reviewed articles met the inclusion criteria. This information is presented in the PRISMA flow chart (Figure 2). Search of the grey literature yielded five reports that met the inclusion criteria. In total, 15 documents were included in this review.

FIGURE 2.

PRISMA flow chart of the peer‐reviewed literature review and inclusion pathways.

3.2. Study Characteristics and Summary of Findings

Study designs were diverse, comprising cluster randomised (Lennox et al. 2007b, 2010, 2016), pretest and post‐test studies (Breen et al. 2018; Hendren and Kendall 2015; Peter et al. 2011) and four retrospective descriptive studies (Baynam et al. 2025; Bull et al. 2025; Golder et al. 2024; O'Shannessy et al. 2025), across primary, secondary and tertiary care settings. The 10 peer‐reviewed studies included a total of 2871 people with intellectual disability and 25 clinicians. Evaluations in the grey literature involved 1533 people including patients and their families, clinicians and stakeholders (Clinical Centre of Expertise for Rare and Undiagnosed Diseases 2023, 2024; Department of Health and Aged Care 2024; O'Shea et al. 2023; Purcal et al. 2021). Irrespective of the study design or setting, models of care that were targeted to the needs of people with intellectual disability were associated with positive outcomes for patients, healthcare professionals and/or health budgets. Person‐centred care, reasonable adjustments and care coordination were commonly used strategies as was capacity building for the healthcare professional, patient or caregivers, with some studies using all categories of strategies (Baynam et al. 2025; Golder et al. 2024; O'Shannessy et al. 2025). A subset of studies evaluated more complex care coordination components including cross‐sector care coordination, which were associated with a wider range of benefits including less cost to the health sector (Baynam et al. 2025; Bull et al. 2025). The studies are additionally described below, grouped by the healthcare setting where they were implemented, and in Tables 1 and 2.

TABLE 1.

Summary of components in each model of care and effectiveness and cost‐effectiveness outcomes from peer reviewed publications. See statistical abbreviations in footnote.

Title/year of publication	Study design/description	Population	Component(s) of model of care	Outcome and effectiveness
Effects of a Comprehensive Health Assessment Programme for Australian Adults With Intellectual Disability: A Cluster Randomized Trial (Lennox et al. 2007a)	Cluster randomised controlled trial Intervention: Health assessment programme (Comprehensive Health Assessment Program [CHAP])	N = 453 Adults in 24‐h supported accommodation	Elements Capacity building for person with intellectual disability and/or carer and health professionals Approach Reasonable adjustments Implementation GP clinics Metropolitan	Person with intellectual disability CHAP use increased health promotion, disease prevention and diagnostic activities, for example, Detection of vison impairment, risk ratio (RR) 6.6 (95% CI 1.1, 40.0) Hearing tests RR 30.0 (95% CI 4.0, 230.0) New diagnoses RR 1.6 (95% CI 0.9, 2.8)
Cluster Randomized‐Controlled Trial of Interventions to Improve Health for Adults With Intellectual Disability Who Live in Private Dwellings (Lennox et al. 2010)	Cluster randomised controlled trial Comparison of interventions: CHAP Ask Health Diary (Ask) CHAP and Ask Usual care	N = 242 adults	Elements Accessible information Capacity building for person with intellectual disability, carer and health professionals Approach Reasonable adjustments Person‐centred care Implementation GP clinics Metropolitan	Person with intellectual disability CHAP use increased health promotion, disease prevention and identification of new diseases, for example, Pneumococcus vaccination odds ratio (OR) 7.4 (95% CI 1.5, 37.1) Hearing tests OR 4.5 (95% CI 1.9, 10.7) Vision testing OR 3.4 (95% CI 1.4, 8.3) Comparing ASK and no ASK groups, there were no strong between‐group differences: Epilepsy review OR 2.3 (95% CI 0.7, 7.4) Vision test OR 2.2 (95% CI 0.9, 5.6) Constipation investigation OR 2.1 (95% CI 0.5, 9.5)
A Health Advocacy Intervention for Adolescents With Intellectual Disability: A Cluster Randomized Controlled Trial (Lennox et al. 2016)	Parallel‐group cluster randomised controlled trial Intervention: Health intervention package comprising Ask Health Diary Ask Project Curriculum CHAP	N = 592 completed baseline, 435 participants (161 received full intervention, 79 received diary intervention only, 195 control participants) Mean (SD) age: Intervention—15.3 (1.7) years Control—15.7 (1.4) years	Elements Accessible information Capacity building for person with intellectual disability and/or carer, health professionals and community Approach Reasonable adjustments Person‐centred care Implementation GP clinics Special Education teachers Metropolitan Regional Schools	Person with intellectual disability Compared with the control group, adolescents who received the health intervention package experienced higher odds of health‐promotion activities, for example, Vision check OR 3.3 (95% CI 1.8, 6.1) Hearing check OR 2.7 (95% CI 1.0, 7.3) Blood pressure check OR 2.4 (95% CI 1.6, 3.7) There were no between‐group differences in health service utilisation
Significant Reductions in Tertiary Hospital Encounters and Less Travel for Families After Implementation of Paediatric Care Coordination in Australia (Breen et al. 2018)	Pretest and post‐test study Intervention: The Kids Guided Personalised Service (Kids GPS) Care Coordination Program—classified into three tiers depending on complexity of needs	N = 534 Children with medical complexity, for example, genetic or chromosomal disorders (19%) cerebral palsy (3.4%) developmental delay (2.8%)	Elements Care coordination 24‐h telephone support Referrals and linkages to other services Capacity building for person with intellectual disability, carer, health professionals and community Telehealth Approach Person‐centred care Implementation Specialist team Metropolitan Children's hospitals (×2)	Person with intellectual disability 52 416 km of travel and $98 317 of travel costs for families saved 370 school absences avoided Shared health information and personalised care plans developed for 83.5% Of 84 children without a regular GP, 58 (69%) were linked with one Fifty‐five (10%) of families were linked to a 24‐h hotline to enable remote access for support Service provider (clinician) Shared health information and care plans Service use Day admissions decreased 42% ED presentations decreased 40% Overnight admissions decreased 9% 290 hospitalisations prevented 312 ED presentations prevented Cost‐effectiveness Cost savings from reductions in ED presentation and admission estimated to be: $1.2 million in first 6 months $4.9 million over 2 years
Care Coordination for Children With Complex Care Needs Significantly Reduces Hospital Utilization (Peter et al. 2011)	Pretest and post‐test study Intervention: Nurse‐led Ambulatory Care Coordination (ACC) programme	N = 101 Children needing complex care Children with severe neurological conditions, for example, cerebral palsy seizure disorder genetic disorder with chromosomal abnormalities	Elements Care coordination Referrals and linkages to other services Capacity building for person with intellectual disability, carer and health professionals 24‐h telephone support Personal integrated healthcare plan Reassessment and monitoring Approach Person‐centred care Implementation Specialist team Metropolitan Children's hospital	Person with intellectual disability The 24‐h telephone support was valued by families Continuity of care across hospital and community Service provider (clinician) Reduced demand for ward‐based discharge coordinators, reduction in bed days and improved communication across inpatient and outpatient services System barriers identified and addressed (e.g., outpatient appointments, immunisations and medication orders) Service use ED presentations decreased 15% Hospital admissions decreased 9% Hospital bed stays decreased 43% Necessary ED presentation increased 87%–94% Cost‐effectiveness Estimated $1.9 million cost savings per annum
Impact of the Role of Senior Dual Disability Coordinator on the Perceived Self‐Efficacy and Job Satisfaction of Mental Health Clinicians (Hendren and Kendall 2015)	Pretest and post‐test study Intervention: Senior dual disability coordinator role	N = 25 Mental health clinicians managing clients with dual disability	Elements Care coordination Capacity building for health professionals Approach ‐ Implementation Specialist dual disability coordinator Metropolitan Regional	Person with intellectual disability Not evaluated Service provider (clinician)* Mean (95% CI) change score Increased knowledge: −0.72 (95% CI −0.97, −0.46) Increased clinical skills: −0.56 (95% CI −0.80, −0.31) Increased service knowledge: −0.64 (95% CI −0.92, −0.35) * Negative change score represents improvement
Rare Care—Cross‐Sectoral Care Coordination (Baynam et al. 2025)	Post‐test evaluation Intervention: Cross‐sectoral care coordination	N = 40 Children with rare and undiagnosed conditions	Elements Cross‐sectoral coordination Referrals and linkages to other services Accessible information Time‐limited direct intervention Capacity building for person with intellectual disability, carer and health professionals Advocacy Approach Person‐centred care Reasonable adjustments Cultural safety for First Nations and CALD communities Codesign Implementation Specialist team Multidisciplinary Health and nonhealth professionals Metropolitan Children's hospital	Person with intellectual disability Reduced travel time and associated costs for families to hospital Increased disability funding secured for families; 18% of families received an increase Reduced anxiety and increased tolerance to medical investigations Increased access to supports for caregivers Service use ED presentations reduced 50% Hospital bed stays reduced 82% Outpatient appointments reduced 16% Cost‐effectiveness $699 000 savings over a 12‐month period from reduced hospital use
Effectiveness of a Disability Liaison Officer Service in a Metropolitan Emergency Department (O'Shannessy et al. 2025)	Retrospective cohort study Intervention: Disability liaison officer (DLO) service	N = 631 patients Presented to ED with a disability alert in their electronic medical record	Elements Care coordination Capacity building of health professionals Telehealth Approach Person‐centred care Reasonable adjustments Implementation Specialist team Multidisciplinary Metropolitan Hospital	Service use Earlier disposition from ED (HR 1.44, 95% CI 1.23, 1.69) Earlier discharge home from ED (aHR 2.47, 95% CI 1.83, 3.33) No significant effect for patients admitted to Emergency Short Stay Unit (aHR 1.67, 95% CI 0.99, 2.80) No significant effect for patients admitted to inpatient ward (aHR 0.89, 95% CI: 0.65, 1.23)
Evaluation of an Australian Community‐Based Model of Care for Adults With Intellectual and Developmental Disabilities Undergoing Procedures Under Sedation (Golder et al. 2024)	Retrospective cohort study Intervention: Centre for Developmental Disability Health (CDDH) procedural model of care	N = 127 Adults with intellectual disability and/or developmental disability who attended the CDDH for a procedure requiring sedation	Elements Care coordination Assessment Time‐limited direct intervention Referrals and linkages to other services Accessible information Telehealth Approach Person‐centred care Reasonable adjustments Implementation Specialist team Multidisciplinary Metropolitan Community‐based disability service	Service use 98% of procedures used the simplest and safest effective technique under the sedation tier 91.4% of sedation level assessed through model of care matched the sedation provided 67% of procedures requiring less invasive sedation types
Evaluation of the Patient Profile and Health Interventions Offered by a Multidisciplinary Intellectual Disability Health Team (Bull et al. 2025)	Retrospective cohort study Intervention: Specialised Intellectual Disability Health Team	N = 151 Paediatric and adolescent cohort	Elements Care coordination Cross‐sectoral coordination Assessment Time‐limited direct intervention Referrals and linkages to other services Accessible information Approach Person‐centred care Implementation Specialist team Multidisciplinary Metropolitan community clinics	Person with intellectual disability At initial assessment: 18.5% had changes to existing medication dosages 47.7% had new medication recommended 13.9% had ongoing medication ceased 34.4% received a new comorbid diagnosis At 6‐month follow‐up: 82.9% of patients followed recommendations made by the health team Service use Three‐quarters of carers reported an ongoing improvement in function for the primary concern they presented with

Abbreviations: aHR—adjusted hazard ratio; CI—confidence interval; HR—hazard ratio; OR—odds ratio; RR—risk ratio.

TABLE 2.

Summary of evaluations of Australian models of care for people with intellectual disability in the grey literature. See statistical abbreviation in footnote.

Title/year of publication	Description of service	Population	Component(s) of model of care	Outcomes and effectiveness
Intellectual Disability and Mental Health Hubs (O'Shea et al. 2023)	Two statewide hubs for children and adults with intellectual or developmental disability and mental health needs Sydney Children's Hospitals Network Mental Health and Intellectual Disability Hub Statewide Intellectual Disability Mental Health Outreach Service	142 interview participants or written responses (depending on preference)—hub participants; hub staff; service providers using the hub; stakeholders 386 survey participants in data linkage study (programme data and surveys) (13 local health district [LHD] representatives; 18 hub referrals; 15 families of hub participants)	Elements Assessment Accessible information Time‐limited direct intervention Cross‐sectoral care coordination Referrals and linkages to other services Capacity building for person with intellectual disability, carers and health professionals Advocacy Research and evaluation Telehealth Approach Person‐centred care Reasonable adjustments Implementation Specialist teams Multidisciplinary Metropolitan	Patient Increase in access to local mental health services with the greatest changes in clinical review (RR 8.0) care planning (RR 4.8) care management (RR 4.5) assessment (RR 3.9) Increased access to National Disability Insurance Scheme (NDIS) services Service provider (clinician) Increased: Access to specialist intellectual disability mental health support for local clinicians Coordination and engagement across health and disability providers Improved: Confidence and skills of mainstream mental health professionals Partnerships with other sectors such as Justice and NDIS Service use ED presentation decreased by 28%
The Intellectual Disability Mental Health National Disability Insurance Scheme Residual Functions Program (Residual Functions Program) (Purcal et al. 2021)	Programme to support people with intellectual disability and mental health needs to improve their access to services Ten LHDs and two speciality health networks (SHNs) aiming to improve clinical support and building service capacity and coordination Three streams of activities: Support for LHDs and SHNs Support for six intellectual disability health teams Centralised coordination Programmes varied according to local needs Programme ran between 2018 and 2021	Qualitative evaluation with 39 unique individuals including 6 consumer interviews 7 interviews with families 12 interviews with service providers 16 focus groups with other stakeholders Quantitative data collection and analysis involved obtaining anonymous health data from Department of Health data sets	Elements Accessible information Cross‐sectoral care coordination Time‐limited direct intervention Referrals and linkages to other services Capacity building for person with intellectual disability and/or carer Capacity building for health professionals Telehealth Approach Reasonable adjustments Person‐centred care Trauma informed Codesign of research methods Implementation Primary care Specialist team Multidisciplinary Metropolitan Regional	Patient Improved well‐being for person with intellectual disability and their carers Increased direct clinical contact Decreased travel required Increased comfort due to reasonable adjustments and accessible information Reduced use of chemical restraints for behaviour management Service provider (clinician) Increased coordination amongst services Local contact point for care coordination Service use Improved access to services in the community by 69% per person per month Rate of ED presentations did not change. Slight reductions in admission from ED presentations (4%) and reductions in two triage categories: resuscitation (4%) and urgent (7%) 73% increase in rates of inpatient episodes per person per month due to mental and physical health. Increase was likely due to community mental health services identifying needs and facilitating planned hospital stays. Cost‐effectiveness Limited data precluded evaluation
Primary Care Enhancement Program (PCEP) (Department of Health and Aged Care 2024)	Initiative under the National Roadmap for Improving the Health of People with Intellectual Disability with the aims to Increase the skills of GPs and other health professionals to deliver effective healthcare for people with intellectual disability Improve the health literacy of people with intellectual disability Pilot ran between 2022 and 2024	472 external training surveys 111 staff surveys 248 stakeholder consultations including 36 people with intellectual disability	Elements Accessible information Referrals and linkages to other services Capacity building for person with intellectual disability and/or carer Capacity building for health professionals Approach Reasonable adjustments Person‐centred care Implementation Primary care Multidisciplinary Metropolitan Regional	Patient Health promotion fact sheets and patient profile templates were described as helpful to facilitate discussions with health service provider Service provider (clinician) Knowledge of inclusive communication strategies increased from 40% to 92% 84% respondents reported they applied PCEP learning into reasonable adjustment practices always or most of the time Improved awareness and use of intellectual disability health resources Service use Not evaluated Low engagement with the PCEP from GPs
The CAHS Clinical Centre of Expertise for Rare and Undiagnosed Diseases (Rare Care Centre) (Clinical Centre of Expertise for Rare and Undiagnosed Diseases 2023, 2024)	Service for children with rare and undiagnosed diseases launched in 2022 and ongoing Located at two metropolitan sites Two main clinical service streams: Statewide cross‐sector care coordination Nurse navigator programme	135 children and their families were supported by the service that year	Elements Cross‐sectoral care coordination Time‐limited direct intervention Accessible information Referrals and linkages to other services Capacity building for person with intellectual disability and/or carer Capacity building for health professionals Telehealth Digital patient portal (for real‐time exchange of information) Advocacy (nationally and internationally) Research and evaluation Collaboration with local universities to upskill students Global partnerships and networking to upskill the health workforce Approach Person‐centred care Codesign in development and implementation of the model of care Implementation Specialist team Multidisciplinary Metropolitan	Patient Families felt listened to and valued and received practical and emotional support Parents reported decreased stress and increased overall well‐being Greater access to full‐time special needs education supports Facilitation of transition to adult services and employment opportunities Increased access to NDIS, NDIS funding, appropriate supports and assistive technology Access to specialist care and therapy supports Service provider (clinician) Shared information between health, community and education supports Service use Connection to local GPs Reduced hospital attendances with coordinated outpatient appointments Reduced outpatient visits by 16% Reduced number of bed days by 82% Reduced ED presentations by 50% Cost‐effectiveness In 2023–2024, the savings is estimated at four times the cost Reduced travel costs for regional patients (approximately $5250 per patient per year)

Abbreviation: RR—risk ratio.

3.3. Effectiveness Findings

3.3.1. Implemented in Primary Healthcare Settings

There were four evaluations of models of care implemented in primary care settings, defined as settings where general healthcare is provided in the community. Three randomised control trials evaluated the Comprehensive Health Assessment Program (CHAP) tools that have allowed general practitioners to provide targeted and comprehensive care for adolescent (https://www.health.gov.au/resources/publications/young‐person‐12‐to‐18‐years‐comprehensive‐health‐assessment‐program‐chap‐annual‐health‐assessment‐for‐people‐with‐intellectual‐disability?language=en) and adult (https://www.health.gov.au/resources/publications/chap‐adult‐standard?language=en) patients with intellectual disability (Table 1). Two randomised controlled trials evaluated CHAP use in adults with intellectual disability (Lennox et al. 2007b, 2010), and one randomised controlled trial evaluated use of the adolescent version of the CHAP for adolescents with intellectual disability (Lennox et al. 2016). In each trial, using the CHAP increased preventive health actions, and previously undiagnosed conditions were identified and treated (Lennox et al. 2007a, 2010, 2016).

Published in the grey literature and presented in Table 2, the Primary Care Enhancement Program (PCEP) commenced in July 2020 and is scheduled to continue to June 2028. PCEP is focusing on capacity building for primary care providers across four geographical areas in four Australian states for them to provide person‐centred care with reasonable adjustments (Department of Health and Aged Care 2024). Using qualitative evaluations, staff who participated in the programme reported more awareness of where to find relevant health resources and felt better equipped to communicate with people with intellectual disability. Although GPs were the primary target audience for this training, their engagement with the programme was low (Department of Health and Aged Care 2024).

3.3.2. Implemented in Secondary Healthcare Settings

There were five evaluations of models of care delivered in secondary care settings, defined as medical care provided by a specialist or facility following referral by a primary care physician. All models of care were implemented by specialist teams, either single‐discipline or multidisciplinary teams. Services were provided in outpatient clinics within hospitals or in the community. Elements included care coordination and capacity building for patients, caregivers and clinicians, and their approaches were characterised by person‐centred care and reasonable adjustments.

In a retrospective cohort study (Table 1), a specialised model of care offered individualised sedation protocols to 127 adults with intellectual disability. For most, (n = 197, 98%) preventative medical procedures were performed using the least invasive and optimal sedation method for each patient (Golder et al. 2024). A pretest and post‐test study evaluated the appointment of a senior dual disability coordinator (SDDC) in a metropolitan hospital (Table 1). Mental health clinicians supporting patients with intellectual disability and mental health conditions reported improved knowledge, clinical skills, self‐efficacy and job satisfaction (Hendren and Kendall 2015). A specialist intellectual disability health team based in a community paediatric clinic provided cross‐sectoral care coordination for children and young people with intellectual disability who lived with socio‐economic disadvantage (Table 1). The programme included provision of specialist clinical care such as medication review and diagnosis, advocacy and facilitation of referrals to appropriate services such as paediatricians, schools and mental health and other public health services (Bull et al. 2025). Approximately one‐third (34.4%) received new diagnoses of associated health conditions at the first assessment, and after 6 months, three‐quarters of parents/carers reported improvement in function for the primary concern for their child (Bull et al. 2025).

Two online reports in the grey literature evaluated the effectiveness of specialist mental health hubs that supported mental healthcare in urban and rural settings (O'Shea et al. 2023; Purcal et al. 2021) and are described in Table 2. Ten local health districts and two specialty health networks across NSW implemented the Residual Functions Program to improve clinical support, build service capacity for local healthcare teams and care coordination aiming for better access to mental health services. Evaluation indicated improved well‐being for the person with intellectual disability and their carers, reduced use of chemical restraints for behaviour management and decreased travel for appointments. There was a 4% reduction in ED presentations, although a 73% increase in inpatient admissions, hypothesised to be due to better recognition and management of mental health needs (Purcal et al. 2021). Similarly, the Intellectual Disability and Mental Health Hubs used multidisciplinary teams based in tertiary hospitals and provided statewide reach to support people with intellectual disability to access mental health services. There was improved access to appropriate mental health services and enhanced care satisfaction for patients and carers while service providers reported increased knowledge and skills in applying reasonable adjustments and providing accessible information (O'Shea et al. 2023).

3.3.3. Implemented in Tertiary Healthcare Settings

There were six evaluations delivered in tertiary care settings, defined as highly specialised care provided in major hospitals or specialist centres for emergencies or complex, severe or rare conditions. A disability liaison officer working in the ED of a large metropolitan hospital supported care coordination, provision of person‐centred care and reasonable adjustments and capacity building of health professionals, which was associated with shorter duration in the ED department for patients with intellectual disability who did not require hospital admission (O'Shannessy et al. 2025).

Three pretest and post‐test studies evaluated care coordination services for children with intellectual disability and are described in Table 1. The Ambulatory Care Program was based at a tertiary children's hospital and provided a care coordination service that included 24‐h telephone support. The support and continuity of care were highly valued by families, at the same time reducing the need for ED presentations and hospital admission (Breen et al. 2018; Peter et al. 2011). The Kids Guided Personalised Service (Kids GPS) is a tertiary‐based care coordination programme for children with medical complexity (Breen et al. 2018). Kids GPS improved access to individual care plans, increased supports for carers, continuity of care across tertiary and primary healthcare settings and fewer ED visits and hospital admissions needed (Breen et al. 2018).

Cross‐sectoral care coordination was evaluated in a statewide purpose‐built outpatient paediatric service for children with rare and undiagnosed diseases including children with intellectual disability with a retrospective cohort study design, published (Baynam et al. 2025) with additional information in an online report (Clinical Centre of Expertise for Rare and Undiagnosed Diseases 2023, 2024). Described in Tables 1 and 2, the service focused on care coordination both within the health sector and with organisations outside the health sector such as education, disability and social services. The programme was associated with a reduced number of ED presentations, hospital bed stays and outpatient appointments, as well as increased access to disability funding for families, greater continuity of care with the local general practitioner and better access to community supports. Parents reported they felt valued and had received appropriate supports to care for their child and manage their own stress (Clinical Centre of Expertise for Rare and Undiagnosed Diseases 2023, 2024).

3.4. Cost‐Effectiveness Findings

Substantial cost savings were shown for care coordination models through reduced need for acute healthcare, evidenced in the Ambulatory Care Program in Western Australia and Kids GPS programme in New South Wales (Table 1). The Ambulatory Care Program was estimated to save AU$1.9 million per annum (Peter et al. 2011) and the Kids GPS programme was estimated to save AU$4.9 million over 2 years (Breen et al. 2018). Similarly, the Rare Care Centre in Western Australia estimated a saving of $4 for every $1 spent projecting savings of $699 000 over a 12‐month period (Baynam et al. 2025).

4. Discussion

This scoping review sought to describe models of care for people with intellectual disability and examine data on their effectiveness and cost‐effectiveness. Although few studies were identified, all reported some positive outcomes. The models of care, settings and their components were diverse, reflecting variation in local resources, community expectations and targeted projects and policies (Roy et al. 2023). Across studies, models of care combined multiple strategies that together shaped how care was delivered at the point of clinical care. However, the uneven distribution of models of care, predominantly metropolitan, rarely culturally adapted and inconsistently funded, reflected structural inequities that shape who benefits from innovation and who remains underserved.

The models of care functioned not only as clinical strategies but as equity mechanisms, addressing structural barriers such as fragmented care pathways, diagnostic overshadowing, inaccessible communication and the disproportionate burden of navigating services placed on individuals and their supporters. These barriers contribute to inequitable access to services and health outcomes, experiences that are misaligned with rights frameworks such as the CRPD (United Nations 2006) because personal agency and fair access to resources are limited (Johnston et al. 2022). Wide‐reaching education for practitioners could help to operationalise these models of care by identifying strategies that can readily be incorporated into practice across diverse health settings at scale while recognising that some improvements will need additional resourcing. Implementation at scale has the potential to raise the quality of healthcare for people with intellectual disability and reduce the entrenched inequities in health outcomes.

A person‐centred approach was central to most models of care (Baynam et al. 2025; Breen et al. 2018; Bull et al. 2025; Clinical Centre of Expertise for Rare and Undiagnosed Diseases 2023, 2024; Department of Health and Aged Care 2024; Golder et al. 2024; Lennox et al. 2010, 2016; O'Shannessy et al. 2025; O'Shea et al. 2023; Peter et al. 2011; Purcal et al. 2021). In these models, person‐centred care operated as a corrective to long‐standing power imbalances in healthcare, shifting decision‐making authority back towards people with intellectual disability and their supporters. Historically, people with intellectual disability have been excluded from discussions about their healthcare due to perceived fragility or limited capacity to understand or give informed consent. This has resulted in the person being shielded from their diagnosis, prognosis and treatment options, leaving healthcare decisions to proxies (Flynn et al. 2016; Moro et al. 2017). Such practices can potentially increase risks to the patient. For example, when cancer patients with intellectual disability were included in healthcare discussions, they reported better psychological well‐being and feeling empowered to participate proactively in their treatment (Flynn et al. 2016). Less is known about the impacts of supporting children with intellectual disability to be involved in decision‐making that guides their healthcare (Downs et al. 2024). Supporting the person with intellectual disability and their caregiver/supporters to gain more knowledge, understanding and skills is inclusive and could explain the effectiveness of person‐centred care as a strategy in models of care.

Reasonable adjustments to support people with intellectual disability can enable their optimal participation in healthcare activities. They are not discretionary enhancements but essential equity practices that counteract systemic barriers embedded in standard models of care. The Australian evidence was consistent with evidence from the United Kingdom, Norway and Scotland where liaison nurse roles were central in facilitating medical examinations in the least restrictive manner and where patients reported that they felt respected and their needs had been accommodated (Sparby et al. 2020; MacArthur et al. 2015; McCormick et al. 2021). Continued work is needed to embed these practices into routine service delivery. For example, the evidence from evaluations of the CHAP (Lennox et al. 2007a, 2010, 2016) was used to advocate for a policy change where the CHAP assessments were funded through Medicare to enable up to an hour with the patient, giving the practice nurse and GP time to adapt their communication and make reasonable adjustments while completing the point of care activities. Despite this, uptake of the CHAP between 2007 and 2009 was estimated at only 7% of the eligible population (Koritsas et al. 2012) and subsequent changes to Medicare in 2010 made tracking more difficult. Re‐establishing a specific Medicare item for documenting CHAP health activities in GP practice would enable more efficient monitoring of use of the CHAP assessment and further evaluation of its implementation (Eveleigh et al. 2025). Applying the learnings from the CHAP and ensuring adequate time and appropriate environments during health encounters would also enable more meaningful exchanges between the person with intellectual disability, their caregiver/supporters and healthcare professionals, creating the conditions for equitable and effective care.

Capacity building of the healthcare workforce was provided in all 15 evaluations. Yet relevant content on intellectual disability health in health curricula in Australia remains limited and inconsistently taught (Trollor et al. 2016; Cashin et al. 2022). The PCEP is an example of a centralised training and capacity building programme, included as a model in this review because it is enabling training across multiple settings for efficiencies rather than being confined to one healthcare setting. Other training programmes are becoming available within professional associations, for example, the Royal Australian College of General Practitioners (https://www.racgp.org.au/the‐racgp/faculties/specific‐interests/interest‐groups), which offers training modules on intellectual disability health. More is needed to enhance education across the many healthcare disciplines who support people with intellectual disability. This aligns with recommendations from the Disability Royal Commission which highlighted the need for improved workforce capability to prevent violence, neglect, abuse and exploitation of people with disability (Commonwealth of Australia 2023). Training developed for intellectual disability populations could be relevant to other vulnerable groups such as people from culturally and linguistically diverse (CALD) communities, people with low literacy and those with acquired or other neurological conditions. Higher job satisfaction has been linked to higher patient satisfaction (Weisman and Nathanson 1985). Healthcare professionals need knowledge of how to adapt assessments and management approaches for people with intellectual disability, to build their confidence and sense of self‐efficacy in achieving better outcomes for their patients.

Care coordination and cross‐sector care coordination reduce fragmentation in care and directly target structural inequities by easing the navigation burden on individuals and their supporters, improving access to disability supports and creating continuity across systems that are otherwise inaccessible or siloed. Positive outcomes were reported when there was greater continuity of care between health services (Breen et al. 2018; O'Shannessy et al. 2025; Peter et al. 2011) and where care coordination extended to other sectors beyond health (Purcal et al. 2021; O'Shea et al. 2023). These benefits were evident for children and adolescents experiencing socio‐economic disadvantage (Bull et al. 2025) and for those with rare and undiagnosed conditions (Baynam et al. 2025; Clinical Centre of Expertise for Rare and Undiagnosed Diseases 2023, 2024). Similar findings have been reported internationally, including in Ireland where care coordination enhanced care for children with complex care needs (Brenner et al. 2021). Care coordination positions the patient with complex needs at the forefront and enables partnerships to support the person's multiple needs, using a comprehensive approach, stabilising health and reducing exacerbations that require extensive health resources and generate significant stress for individuals and families.

It is difficult to draw firm conclusions about cost‐effectiveness as evidence was sparse, although preliminary evaluations of cross‐sectoral programmes showed promising results. For example, the Rare Care programme estimated saving $4+ for every $1 spent (Clinical Centre of Expertise for Rare and Undiagnosed Diseases 2023, 2024). Further analysis of economic outcomes of models of care for intellectual disability is warranted as a critical next step because of contemporary pressures on health budgets and the need for policies that deliver greater health benefit at lower cost. Economic considerations are also central when healthcare professionals propose new models of service delivery to decision‐makers. To translate the findings of this review into practice, it will be important to strengthen the capacity of health professionals to build business cases that support the resourcing and implementation of evidence‐based models of care in their practice.

A strength of this work is that we articulated components of successful models of care for intellectual disability, laying an important foundation to define best practice models of healthcare within services and evaluate their performance. However, this scoping review has limitations. The body of research with evaluations was small and lacking in diversity to guide application to different diagnostic, geographical and cultural groups. The near absence of evaluations involving First Nations communities, CALD groups or regional services represents a significant equity gap, limiting the applicability of current evidence to populations who experience the greatest health inequities. For example, most models of care identified in this scoping review were in metropolitan areas, and information on adaptations for regional services was scarce. Only one article included the experiences of First Nations and multicultural communities (Bull et al. 2025), and therefore, more research is needed to address the unique needs of these groups. Perspectives from people with lived experience were also limited, underscoring the importance of more inclusive approaches to the development of services and healthcare evaluations. While we collated components of models of care from available Australian literature, further research is needed to better understand how models of care can be codesigned with clinicians, caregivers and people with intellectual disability and applied in different healthcare settings. Finally, our search was limited to papers with evaluations of effectiveness and/or cost‐effectiveness, and we may have missed important learnings about service delivery in papers without evaluation data.

In conclusion, improved health outcomes and cost savings can be attained when models of care, designed with equity as a core design principle, are appropriately targeted and implemented for people with intellectual disability. Usual healthcare activities should be supplemented with person‐centred approaches, reasonable adjustments and care coordination and partnerships between health and nonhealth sectors to reduce patient and family burden while improving efficiency. Continued professional development for health professionals is a critical part of supporting the delivery of high‐quality healthcare for people with intellectual disability.

Without long‐term government commitment to fund evidence‐based models of care, change cannot happen and Australians with intellectual disability will continue to be at risk of discriminatory practices and preventable consequences of poor healthcare. The findings have implications for government strategies: Improving the reach and sustainability of effective models of care could reduce inequities experienced by this medically vulnerable population. This will require increased funding for research and evaluations in clinical practice and clinical trials, the development of evidence‐based training systems for healthcare professionals and support for healthcare providers to coordinate care within the health sector and across other sectors. Collective effort across these domains is needed to amplify reach, strengthen effectiveness and ensure equitable healthcare for people with intellectual disability.

Funding

This research was supported by funding from the Department of Health and Ageing, Commonwealth of Australia who funded the National Centre of Excellence in Intellectual Disability Health. J.D. is supported by a fellowship from the Stan Perron Charitable Foundation.

Conflicts of Interest

J.N.T. was a co‐author of two of the studies included in the review (Purcal et al. 2021; O'Shea et al. 2023). The other authors do not have conflicts of interest to report.

Supporting information

Data S1: Preferred Reporting Items for Systematic reviews and Meta‐Analyses extension for Scoping Reviews (PRISMA‐ScR) Checklist.

Data S2: Search terms in groups as formatted for MEDLINE, CINAHL, PsycINFO and Cochrane Library databases.

Data Availability Statement

Data sharing is not applicable to this article as no datasets were generated or analysed during the current study.