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Improving access to high-quality care for people with an intellectual disability

Tudor Hart’s inverse care law classically described that those with the greatest need, paradoxically, often receive the poorest health care. This is a stark reality for the estimated 450,000 Australians with intellectual disabilities, who are at significantly higher risk of chronic disease, neglected mental health challenges and preventable poor health outcomes.1 

Despite this, they are far less likely to access preventative health services, with only 10% completing an annual Medicare-funded health assessment, compared to 22% of the general population.2 Life expectancy for people with intellectual disabilities remains up to 27 years shorter than the general population, underscoring the need for urgent systemic and practice-level change.2

Lived experience matters 

Hear firsthand from individuals with intellectual disabilities as they share their experiences in accessing healthcare.

At the heart of this challenge is the opportunity for improvement. By prioritising QI initiatives, your practice can be a leader in delivering patient-centred, inclusive, and comprehensive care to individuals with intellectual disabilities. Through embedding structured QI processes, clinicians and staff will feel better supported to address complex needs and overcome barriers to care.

CCQ is committed to improving healthcare outcomes for people with intellectual disabilities through the Primary Care Enhancement Program (PCEP) as part of the Australia Government’s National Roadmap for Improving the Health of People with Intellectual Disability. Check out what we’ve been up to.

Our overarching objective is to improve health care and support for people with an intellectual disability (ID).

To achieve this goal, you can access a range of resources:

  1. Review current best practice: The Council for Intellectual Disability has developed a comprehensive resource to improve healthcare for people with intellectual disability.
  2. Complete CCQ’s eLearning course on improving care for people with an intellectual disability developed in partnership with Parent to Parent and Loud and Clear QLD: Primary Care Enhancement Program (PCEP)
  3. RACGP Clinical Guidelines – Disability
  4. RACGP’s White Book has a chapter on preventing, detecting and managing violence and abuse experienced by people with disabilities.
  5. HealthPathways: Use HealthPathways to explore locally tailored approaches for supporting patients with an intellectual disability. Search “Intellectual and Developmental Disability” to get started.
  6. Comprehensive Health Assessment Program (CHAP). This is an evidence-based tool for conducting annual health assessments for people with an intellectual disability.

Kickstart your quality improvement activity by bringing together a quality improvement team. Together, you’ll identify the key challenges and come up with innovative solutions, ensuring you all share a clear understanding of the improvement objectives and strategies.

  1. Engage with your Primary Health Coordinator from CCQ; they can offer tailored support, resources and guidance to enhance your QI efforts wherever you are in your QI journey. Your Primary Health Coordinator can support your practice to:
    • Bring a QI team together to decide on an improvement idea
    • Plan, start and finish a QI activity
    • Facilitate QI meetings
    • Create practice-wide systems improvement
  2. Gather data and information. Review current practice data and processes for identifying and supporting patients with an intellectual disability.
  3. Identify and discuss any common barriers to optimal patient care. Consider using process maps, flow charts or driver diagrams to generate change ideas and improve processes.

What data might you need? You’ll need data to understand the problem and measure your outcomes. We suggest you start with:

  1. Primary Sense can provide insight, detailed reports and targeted guidance on improving data quality.
  2. The following reports in Primary Sense may be helpful to identify some patients, but note that they are not specific enough to capture all:
    • Patients with Moderate Complexity (Level 3): Identifies patients who would be eligible for coordinated care to better manage chronic diseases and mental health conditions.
    • Patients with High Complexity (Levels 4 and 5): Identifies patients with the highest risk or morbidity and mortality.
  3. Clinical Software: Ensure your practice team is aware of how to correctly record a coded diagnosis of Intellectual Disability so you can accurately utilise the search functions in your practice software to identify this patient population.

To achieve your goal, you can consider several improvement ideas, such as:

  1. Incorporate the CHAP health assessment into practice processes for caring for people with ID.
  2. Utilise clinical software to identify, recall and remind people with an intellectual disability to attend appointments, including specifically for health assessments and follow-up care.
  3. Set up automatic alerts so practice staff can prompt people with intellectual disability to return for appointments, as well as prompts for practice staff to book follow-up appointments opportunistically when people with intellectual disability present in a practice.
  4. Identify where the practice could provide reasonable adjustments or enhance the experience of accessing care within the practice. This could include accessible communication methods or supporting appointment scheduling.

References

  1. Australian Institute of Health and Welfare. (2008). Disability in Australia: Intellectual disability. Canberra: AIHW. Accessed 11 December 2024.
  2. National Roadmap for Improving the Health of People with Intellectual Disability. Australia Government, Department of Health. July 2021. Accessed 19 December 2024.
Download PDSA Template

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Aboriginal and Torres Strait IslandersCCQ acknowledges the Traditional Custodians of the land on which we work and live, and recognises their continuing connection to land, waters and community. We pay our respect to them and their cultures; and to Elders past, present and emerging.

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