People with intellectual disability are more likely to unnecessarily end up in hospital for conditions that could actually be managed by a General Practitioner (GP) or in primary care instead, according to new research by the University of New South Wales (UNSW).
The researchers say the high rates of potentially preventable hospitalisations (PPH) are a symptom of the systemic neglect in the Australian healthcare system that people with intellectual disability experience, which has also been highlighted by the Royal Commission into Violence, Abuse Neglect and Exploitation of People with Disability (Disability Royal Commission).
Professor Julian Trollor, the Chair of Intellectual Disability Mental Health at UNSW and the study’s Lead Researcher, says PPH is a sign of poor access to primary and community-based health care.
“We simply don’t have enough research into what actually drives PPH – in the general population, and even less so in people with intellectual disability,” Professor Trollor says.
“That’s why we now need to find out why exactly that’s happening, and then do something about it – governments, policy makers, services and professional groups have much work to do to improve health care for people with intellectual disability.”
The authors’ recommendations include a national health strategy for people with intellectual disability and reasonable adjustments to the Australian health care that meet the needs of people with intellectual disability.
“We also need to equip the health care workforce in the area of intellectual disability health – and we need to make sure people with intellectual disability and their support networks have the tools to improve their health literacy,” Professor Trollor says.
The researchers say preventable hospitalisations are just the tip of the iceberg which underlie a major gap in healthcare.
More than 92,000 hospitalisations of people with intellectual disability examined
The report, published Monday in the Medical Journal of Australia, looked into New South Wales (NSW) hospitalisations between 2001 and 2015 that could have been prevented with treatment by general practitioners or adequately managed in primary care.
These hospitalisations included treatments for acute conditions such as convulsions, epilepsy, pneumonia and urinary tract infections, as well as chronic conditions like high blood pressure and asthma, and even vaccine preventable conditions such as the flu.
Professor Trollor says the research aims to address gaps in knowledge surrounding PPH and people with intellectual disability in Australia.
“We already know from international research that people with intellectual disability experience higher rates of PPH – and that they generally face stark health inequalities and barriers to accessing health care,” Professor Trollor says.
“But before our study, there hasn’t been any research into rates of PPH for Australians with intellectual disability.”
To address this gap in knowledge, the researchers reviewed hospital admission data of more than 92,000 people with intellectual disability over the course of 15 years and compared it to a section of the general population.
UNSW Lead Author Dr Janelle Weise says the research findings show the clear difference in PPH for people with intellectual disabilities when compared to the general population.
“Our key finding is that people with intellectual disability in New South Wales experience higher PPH compared to the general population, which is unacceptable – they are 3.5 to 4.5 times more likely to be hospitalised for a condition that could have been managed through primary care or prevention,” Dr Weise says.
People with intellectual disability were also found to be almost 26 times more likely to be hospitalised for epilepsy and convulsions compared to the NSW population, the biggest inequality from the study.
The research also found that hospital stays for vaccine-preventable conditions, such as the seasonal flu, were three times higher in people with intellectual disability.
Dr Weise says the difference in vaccine-preventable admissions is particularly worrying as rates of those hospitalisations in people with disability seem to be rising.
“It is critical that we look into why people with intellectual disability are being hospitalised for vaccine-preventable conditions, as we know that failure to vaccinate is also a factor associated with preventable deaths in people with intellectual disability,” Dr Weise says.
“Particularly in light of the COVID-19 vaccine rollout, we need to address the barriers faced by people with intellectual disability to be vaccinated.”
Hearing from lived experience an important step
Project Worker at Council for Intellectual Disability, Jack Kelly, is a 25-year-old man in Sydney who lives with cerebral palsy, quadriplegia and an intellectual disability.
Mr Kelly lives in a supported group home, however says some health professionals don’t understand his needs and the needs of other people with intellectual disability.
“They [health professionals] can work with people without a disability well but for people with a disability they don’t know where to turn,” Mr Kelly says.
“What we need is increased training for health staff in supporting people with an intellectual disability, and longer appointment times so the person with an intellectual disability has more time to say what they want to say without feeling rushed.”
Senior Disability Advocate at the Council for Intellectual Disability, Jim Simpson, has been urging for action on the health of people with intellectual disability for years.
Mr Simpson says the research confirms years of anecdotal reports from people with intellectual disability and their families.
“Here, we have yet more rigorous evidence of the stark health inequalities suffered by people with intellectual disability,” Mr Simpson says.
“We have welcomed initiatives by Health Minister Greg Hunt including the development of a National Roadmap for Improving the Health of People with Intellectual Disability.
“We now look to the Minister to release and implement the Roadmap as a matter of urgency.”
In its interim report published in October 2020, the Disability Royal Commission found that there had been and continues to be systemic neglect of people with cognitive disability, including people with intellectual disability, in the Australian health system.
This was based on the lived experience of people with intellectual disability and their families of interactions with healthcare professionals and services.
The Disability Royal Commission is ongoing and will resume in Brisbane next week.