Upholding the right to life and health of people with disability

People with intellectual or cognitive disability often have more complex health needs and a higher mortality rate than the general population. They can also face significant barriers to accessing appropriate health care as well as experiencing poorer overall health due to poverty and social exclusion.

As a result, systemic issues such as a lack of appropriate support (including support to access health care and appropriate responses by health care providers) and poor coordination between disability can result in poor outcomes for people with disability. For some, this includes the risk of premature death.

The Public Adovcate's report Upholding the right to life and health: A review of the deaths in care of people with disability in Queensland, focussed on the deaths in care of people with disability in Queensland between 2009 and 2014. The report was tabled in the Queensland Parliament on 16 March 2016.

The report made a series of recommendations aimed at reducing the deaths of people with disability in care. A summary of the report and its recommendations was also published.

The Public Advocate has released a position statement about upholding the right to life and health of people with disability.

In March 2019, the Queensland Government finalised An Action Plan: Meeting the health needs of people in care with a disability in response to the Upholding the right to life and health report.

The Action Plan lists a large number of initiatives relating to the provision of health and disability services by Queensland Government agencies, many of which were being delivered at the time of the deaths that were reviewed. The Action Plan focuses on only two new initiatives:

  • a trial of a phone application called Julian’s Key Health Passport (which allows a person with disability to share their care and support information with health workers to improve their health care quality and safety); and a
  • a commitment to encourage each Hospital and Health Service in Queensland (16 in total) to develop a Disability Service Plan.

Considering the complexity of health and service coordination issues identified in the Public Advocate’s report, these two initiatives are not enough to make any measureable difference to the health outcomes for people with disability in care in Queensland.

A Roundtable event was held in Brisbane in March 2019 and brought together more than 80 people and a wide variety of speakers, ranging from people with intellectual disabilities and their families through to professors, clinicians and advocates. The summary of the Roundtable outcomes, includes proposed future actions to drive change to improve the health and wellbeing of people with disabilities.

The Public Advocate continues to advocate for changes to improve the accessibility, integration and responsiveness of mainstream health services to meet the needs of people with disability in care.