Health plan ignores intellectual disabilities

Despite a life expectancy gap of thirty years and emergency department admission increasing risk of death by four times, the draft National Health Literacy Framework does not address health care needs of people with intellectual disability.

Responding to Federal Government consultation on the new National Health Literacy Framework, Aruma Chief Executive Dr Martin Laverty said the draft plan overlooks intellectual disability.

People with intellectual disability live shorter lives, face more illness, and encounter greater barriers in access to health care than people with no disability, Dr Laverty said.

The Australian Institute of Health and Welfare (AIHW) 2020 study Mortality patterns among people using disability support services found people with intellectual disability had a median age at death of only 50 years, compared to median age at death of 79 years for males and 85 years for females without disability.

The AIHW report found thirty one percent of deaths of people with intellectual disability were potentially avoidable if sufficient individualised treatment had been provided through existing primary or hospital care.

A University of NSW study Factors associated with death in people with intellectual disability in 2019 found people with intellectual disability when admitted to emergency departments faced increased risk of death by a staggering four times.

This heart-breaking disparity in health outcomes for people with intellectual disability is not addressed by the proposed National Health Literacy Framework.

Dr Laverty said revisions to the Health Literacy Framework should address:

1.    Individual communication needs of people with intellectual disability;

2.    Patient advocacy within hospital and primary care; and

3.    Improved disability literacy of health care clinicians.

What our customers and families think

To put together our submission on the Government’s health literacy framework, we sought views from our customers and families.

Customer and Human Rights Advisor James McCoy and family member of another customer called James, Jann Hayman, were two people who shared their views on the gaps in our healthcare system, particularly for people with intellectual disabilities.

James considers himself lucky to have found a good doctor who talks directly to him about his health.

While he believes our healthcare system has advanced since he was diagnosed with Autism when he was 17, he remembers his parents finding doctors ‘seemed clueless or apathetic’ about trying to diagnose him.

Even now, I think it can be hard for people with a disability to talk to doctors. Health information needs to be accessible and there needs to be support to understand what information is genuine or fake, James said.

People with a disability deserve the same quality of care as everyone else.

Jann has navigated our healthcare system on behalf of her son James, who has a genetic disorder and high support needs, and lives in an Aruma home, for many years. She agreed the framework didn’t call out people with intellectual disabilities as needing consideration.

James is now 37 and I’ve been on top of his healthcare since day one, Jann said.

We’ve seen improvements over the years, particularly with support workers having a greater understanding of things to promote good health like nutrition, record keeping and supporting people with their medical appointments.

But support workers are expected to do a heck of a lot, with great responsibilities, so I think it vitally important that they themselves have sound health literacy as they are often the key to care, information, guidance, and support to attain the best possible health for people with disabilities.

A health literacy framework that clearly identifies how these groups can work together to support people with intellectual disabilities to navigate our healthcare system could take the pressure off any one group that cares for such vulnerable people in our population.

Jann worked as a Carer Support Facilitator for several years, where she provided advice and updated a range of healthcare brochures and other documents, so carers could more easily understand important information.

There’s a range of apps and tools out there to help people with disabilities communicate with carers and healthcare workers about their health, Jann said.

For example, My Signs is an app developed by the University of NSW that helps support mental health diagnoses for people with intellectual disabilities and Healthy Mind is an Easy Read tool designed by the Blackdog Institute to help people with intellectual disability to recognise and regulate their thoughts and feelings.