Report - Public hearing 4 - Health care for people with cognitive disability

Public Hearing Report

Public hearing 4: Health care and services for people with cognitive disability

The Disability Royal Commission has released its report about a previous public hearing that looked into health care and services for people with a cognitive disability.

The report highlights the need for:

• better training of health care professionals

• reduction of stress and trauma

• better communication and information sharing

to improve access to the system for people with intellectual disability and autism.

Other key themes include:

• quality of health care received

• attitudes, assumptions and culture

• communication and information sharing

• lifetime health care

• collection of data and research

• the need for initiatives to improve health care (such as appropriate training of health professionals)

as challenges for the future.

Some witnesses with Down syndrome gave evidence of feeling overlooked by the health system. Doctors are reluctant to discuss support and treatment options such as medication and psychology, with doctors talking to their parents instead of them.

Standards set out in the UN Convention on the Rights of Persons with Disabilities are often not met, and there continues to be problems in the provision of health care.

However there were also witnesses with cognitive disability and their families, who described positive experiences with the health system. This suggests the Australian health system doesn’t always neglect or fail to respond to the complex physical, psychological and communication requirements of people with cognitive disability.

Some witnesses spoke of negative experiences that led to trauma and other adverse health outcomes. This highlighted the importance of doctors understanding barriers to health care, and to work together to overcome them.

Witnesses who gave evidence from direct personal experience, as well as experts and advocates told the Royal Commission that a ‘person-centred’ approach is key. One mother said, for her son, good health care is suited to his needs. Another explained that the person-centred approach recognises an individual’s needs and preferences as the foundation for their care and treatment, with options supported.

The relationship between a doctor and a person with cognitive disability is built on trust, confidence and respect. This is critical.

The Royal Commission heard that quality health care involves considering not just the present health issue but also the future. For example, one witness told the hearing her son’s neurologist provided an example of quality care because he could address his health needs now and into the future.

Some witnesses said that medical practitioners should take the time to explain things to their patients, and talk them through procedures. This allows time to understand complicated problems, and hot to proceed.

Despite the richness and variety of the lives of people with disability, negative stereotypes or perceptions can influence decision making around health care treatment. Once academic identified this as one of the key challenges to ensuring that people with intellectual disability receive high quality health care.

Some witnesses told the Royal Commission that their experience of accessing the health system for their child requires going over the full medical history, and starting again with each new doctor, with no continuity of care.

The Royal Commission heard there is a need for independent advocacy services for people with cognitive disability, and their families, to support them to navigate the health system.

For the full report, or more information, take a look at our website, under the ‘Publications’ section.