A team from Central Coast Local Health District (CCLHD) is working to address the significant inequalities that patients with intellectual disability experience in hospital settings. The project introduces comprehensive clinical guidelines and operational protocols to improve safety, inclusivity and person-centred care.
Patients with intellectual disability (patients) experience persistent and well-documented health inequities, including hospital admission rates nearly twice that of the general population; and a life expectancy up to 27 years shorter. In CCLHD, patients have experienced unmet healthcare needs, communication barriers and limited inclusion in care planning processes.
Local data and consultation found that 100% of surveyed patients and their caregivers reported that they were not included in hospital care planning, despite clear NSW Health and National Safety and Quality Health Service standards, requiring inclusive, person-centred approaches.
Staff reported uncertainty about communicating with patients, identifying decision-making capacity, and navigating complex care needs. This contributed to:
- increased length of stay
- missed referrals
- preventable clinical deterioration
- caregiver distress.
These systemic issues were exacerbated by the absence of standardised procedures and disability-specific clinical pathways.
Improving outcomes for patients with intellectual disability
The aim of this project is to improve care quality, safety and outcomes for patients, while also supporting staff capability, reducing clinical risk and promoting equity across the healthcare system. This redesign project was initiated to address critical gaps through:
- implementing an evidence-informed clinical guideline
- enhanced training
- improved documentation tools
- environmental modifications.
The project also highlights the need to strengthen service provision through the CCLHD Intellectual Disability Health Service. The service incorporates a purpose-built environment specifically designed to meet the needs of patients, including individuals with behaviours of concern.
During the initiation phase, district management formally endorsed the project following growing awareness of health inequities and safety concerns for patients with intellectual disability in acute care settings. Diagnostics involved consultation with staff, carers and consumers; a review of local hospital data; analysis of policy and practice gaps. This identified key issues including inconsistent care planning (specifically related to communication and collaboration with patients and carers), limited staff confidence and a lack of structured clinical pathways.
During the solutions phase, the project team established five key focus areas:
- Clinical governance and standardised processes
- Workforce capability
- Communication and collaboration
- Purpose-built environments
- System navigation and centralised documentation
Trialling solutions in governance and service delivery
From these focus areas, the project team developed several complementary solutions.
- Creating several governance documents including:
- the CCLHD Clinical Guideline for Responding to the Needs of Patients with Intellectual Disability
- two standard operating procedures on supported decision-making and comprehensive health assessment
- a dedicated model of care – the Urgent Transition Disability Pathway
- Establishing a purpose-built inpatient space,the Intellectual Disability Hub
- Centralising documentation via the electronic medical record (eMR)
- Expanding the Intellectual Disability Health Service (IDHS) team, with specialist roles focused on care coordination, clinical consultation and capacity-building, ensuring workforce expertise specific to the needs of people with intellectual disability.
- Rolling out targeted education and training initiatives across the district to build staff capability, promote inclusive practice and support the implementation of reasonable adjustments in care planning and delivery
The governance documents are currently being trialed in select clinical areas and have been circulated for stakeholder review and feedback. Implementation has commenced, with early training rollout and introduction of centralised documentation tools, such as My Care and Communication Plan, Social Stories and Reasonable Adjustment. While formal expansion of the Intellectual Disability Health Service is pending, the project team has submitted a business case and executive brief to the sponsor and as interim support for the service, approval was confirmed for a part-time IDHS Coordinator, with interviews now complete.
Early improvement in staff awareness and collaboration
Evaluation will include pre-and post-trial analysis of care outcomes and staff feedback. To evaluate both care and implementation outcomes of the CCLHD Intellectual Disability Health Service initiatives, a mixed-methods evaluation framework will be used, drawing on the RE-AIM and Implementation Outcomes Framework This dual approach will ensure a comprehensive understanding of both the impact on patient care and the effectiveness of implementation. To ensure sustainability, the project is embedded in governance, education and quality improvement structures.
Preliminary feedback suggests improved staff awareness, stronger interdisciplinary collaboration and greater visibility of patient needs within the health service. The following findings will inform the ongoing rollout and shape broader system reform aimed at embedding equity, inclusion, and safety for patients with intellectual disability across CCLHD:
- Early consultation revealed that patients and their caregivers felt consistently excluded from hospital care planning, despite staff believing they were delivering person-centred care. This highlighted the need to embed structured, proactive engagement strategies into routine workflows, such as My Care and Communication Plan and carer input forms.
- Through consultations and early implementation activities, it became clear that many clinicians lacked confidence in supporting patients, particularly in relation to communication, behavioural escalation and decision-making capacity. Training was insufficient; staff also needed clear procedures, visual tools, and practical resources to bridge the gap between knowledge and implementation. Embedding capability building alongside clinical guidelines significantly improved staff engagement.
- Developing evidence-based solutions was only part of the challenge—the real work began in integrating them into existing systems. For example, creating a purpose-built Urgent Transition Disability Pathway required a new model of care, site identification, staffing considerations and cross-departmental coordination. Successful implementation requires early alignment with operational leaders and governance teams to ensure feasibility and sustainability.
