Improving health outcomes for people with intellectual disabilities

In Australia,  people with intellectual disability tend to experience poorer levels of health, with twice the rate of avoidable deaths and significantly lower levels of preventative healthcare compared to the rest of the population.

Disability support workers play a significant role in supporting people to understand health literacy and preventative health. Yet there is often little education and training for support workers in this area. Service providers are also facing funding constraints and an ever-changing, often casualised workforce, which can make it difficult to train staff and provide consistent support.

An understanding of health literacy and development of advocacy skills are essential for enabling people with intellectual disability, their families and carers, to become informed consumers and to advocate for their needs.

Fortunately,  there has been some movement towards changing the stats and ensuring people with intellectual disability can have a better quality of life in the area of health. In this article, we will look at the National Roadmap, the effort to promote annual health assessments, and other resources participants and their supporters can use.

National Roadmap for improving the health of people with intellectual disability

In July 2021, the National Roadmap for Improving the Health of people with Intellectual Disability was released. It outlines how we can create a health system where people with intellectual disability can have access to high-quality, timely and comprehensive health care and attain the best possible health outcomes.

There were 4 key projects funded under the Roadmap:

• Primary care enhancement program for people with intellectual disability (PCEP) - this aims to improve primary care experience. Activities include support for health professionals in Primary Health Networks working with people with intellectual disability, practical training and resources for general practitioners and other primary health care, and Easy Read health literacy resources for people with intellectual disability, their carers and family members.
• Improving the implementation of annual health assessments for people with intellectual disability - along with a range of tools and resources, this project promotes adding annual health assessments for people with intellectual disability into general practitioner’s software.
• Curriculum development framework - to ensure the health of people with intellectual disabilities is covered in higher education courses for support workers, general practitioners and other primary health care professionals.
• National Centre of Excellence in Intellectual Disability Health - the Centre was launched on 16th October 2023 to improve health outcomes for people with intellectual disabilities and support the delivery of the Roadmap. It is led by a consortium that includes the UNSW Department of Developmental Disability Neuropsychiatry (3DN), the Council for Intellectual Disability, Down Syndrome Australia, Queenslanders with Disability Network, First Peoples Disability Network Australia, University of Melbourne, The Kids Research Institute Australia, Mater Intellectual Disability and Autism Service, and the Centre for Disability Studies. 

Promoting annual health assessments

A priority area of the National Roadmap is to improve the implementation of annual health assessments for people with intellectual disability. These assessments are a structured way to identify health issues and potentially preventable conditions. The Comprehensive Health Assessment Program (CHAP) is an evidence-based annual health assessment tool that is known to improve health outcomes for people with intellectual disabilities. The CHAP tool gives doctors the information they need and increases collaboration between the person with intellectual disability and their GP.

In August 2024, Inclusion Australia and the Australian Government launched 'It’s Doctor Time!’ - a campaign to promote annual health assessments for people with disabilities. It’s Doctor Time provides a series of resources for participants, families, service providers, GPs and GP clinics to encourage more people to access these annual appointments. The campaign has created a number of resources including videos, conversation cards, social stories and even a catchy jingle, to send the message that everyone should see the GP annually and to advise on how to prepare and what to expect at the appointments.

Other resources.

Another really helpful resource is the guide: ‘Health Care for People who Need Extra Support’, developed by Dr Rachel Skoss at Notre Dame University. The guide unpacks health literacy and preventative health. It is written for people with intellectual disability and the people who support them. It includes practical information and resources around promoting good health, managing health conditions, using health services, building health related skills and knowledge.

There are a number of other resources available to service providers and supports such as health passports, My Health Record, person-centered emergency planning resources, and the Council for Intellectual Disability also has a range of helpful resources:

• Health Archives - Council for Intellectual Disability
• Question Builder Health Passport QLD
• My Health Information - S.A
• My Health Matters Folder
• Health Plan (from the UK)

If you want to go deeper, DSC is holding a webinar ‘Health Literacy: Better Health Outcomes for People with Intellectual Disability’. During this webinar, Dr Rachel Skoss will unpack some of the crucial fundamentals around supporting people with their health, preventative health and understanding health literacy. The webinar is pitched specifically at Disability Support Workers and Frontline Leaders to enable them to better understand the role they play in supporting people’s health.