Intellectual disability: a path to better care

TOO many people with an intellectual disability are dying too young from preventable causes.

A key tool available to improve the delivery of preventive care is structured preventive health assessments by GPs for people with an intellectual disability, yet there is a widespread lack of awareness of these assessments, as we state in our Perspective published today in the MJA.

All the contributors to this article have been impacted by information deficits regarding the care of people with an intellectual disability, both within their own families and through close personal relationships.

As an example, Jodie Bailie is the mother of a 20-year-old woman who has Down syndrome, as well as being a researcher and evaluator in health services research for the past > 10 years. Jodie was surprised to find out only recently that her daughter would be eligible for a health assessment due to her intellectual disability. Specifically, her daughter would be eligible for one of the time-based Medicare Benefits Schedule (MBS) items (MBS 701, brief; 703, standard; 705, long; or 707, prolonged), along with other target groups.

Beyond this and other personal stories, our team also has many decades of research experience in the health sector – yet all of us have been unaware until recently of these preventive health assessments for people with an intellectual disability.

If health service researchers like us, with intimate experience of intellectual disability, are unaware of the availability of health assessments, how is the wider community living with a disability expected to find out? Clearly, more can and should be done to increase community awareness of health assessments for people with an intellectual disability.

In Australia, people with an intellectual disability comprise about 1–3% of the population. Their lower participation in primary health care contributes to high levels of undetected and unmanaged health issues and premature deaths from preventable causes. Preventive health assessments are best seen as an implementation vehicle to support evidence-based preventive health care. While there is mixed international evidence about the value of health assessments generally, there is some Australian evidence to support the use of preventive health assessments for some specific groups.

In our view, the critical issue is not whether health assessments work, but rather the need to develop context-specific knowledge of optimal implementation strategies that will lead to the increased uptake of guideline-recommended preventive care.

We welcome the Australian Government’s investments towards increasing uptake of preventive health assessments, as discussed in our MJA article. In the 2021–2022 Budget, there was a further $6.7 million allocated.

In our experience working in Aboriginal and Torres Strait Islander primary health care research, the take-up of health assessments is increased by using concurrent strategies such as increasing awareness of the health assessments at the GP level and by raising community awareness and creating community demand for health assessments.

Notwithstanding this positive example, we know from research that in general, demand-side determinants of access – enhancing people’s abilities to access services – still receive little attention, despite current evidence suggesting that interventions aimed at improving access to care should be more patient-oriented, focused on self-management and health literacy.

We need to actively promote health assessments among people with an intellectual disability, their carers and the organisations that support them.

We also need to advocate for better data collection. Primary health care is the frontline of the Australian health system, yet there are virtually no data available on access, quality of care, or health outcomes for people with intellectual disabilities, partly because intellectual disability status is not adequately recorded in Australian medical health records.

Submissions to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability identified this lack of data as a barrier to raising awareness about the needs and experiences of people with disability in the health care system, understanding the issues and barriers, and making improvements to services.

Few of us would contest that access to data is fundamental to good public health policies and their implementation, and crucial for tracking our progress towards addressing health inequities. Without data, how are we going to know if the government’s investments are making a difference? A lack of data will perpetuate the exclusion of people with an intellectual disability from primary care.

At the practice level, service delivery and outcome data can be used in structured continuous quality improvement activities to improve both the delivery of preventive health assessments and the use of evidence-based guidelines to ensure that people with an intellectual disability receive high quality care.

There is compelling evidence about the benefits of many preventive health activities in primary care, but challenges remain worldwide on how best to implement them. Structured, funded health assessments are one way to do this.

Jodie Bailie is a Research Fellow at The University of Sydney’s University Centre for Rural Health and a Research Affiliate with the Centre for Research Excellence in Disability Health.

Alison Laycock is a Research Fellow at The University of Sydney’s University Centre for Rural Health, Centre for Research Excellence in Strengthening Systems for Indigenous Health Care Equity (CRE-STRIDE).

Veronica Matthews (Quandamooka) is a Senior Research Fellow at The University of Sydney’s University Centre for Rural Health and leads the Centre for Research Excellence in Strengthening Systems for Indigenous Health Care Equity (CRE-STRIDE).

Ross Bailie is the Director of the University Centre for Rural Health and Professor of Public Health, University of Sydney, Lismore.

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.