26 February 2020

I have a beautiful older sister. Her name is Honora and she has an intellectual disability. Recently, just before Christmas, we noticed that she was having trouble walking; her left leg was lagging behind her. Communication is difficult; it's never straightforward with someone with an intellectual disability. Her GP struggled to find a diagnosis, and we were going through a whole lot of tests and things to see what was wrong. But, ultimately, one day she collapsed; she simply couldn't walk at all and ended up in hospital. There were myriad tests that went on for weeks and weeks to try to find out why she couldn't walk. Finally, we did notice that she had some fine-motor-skill problems—she was having difficulty picking things up—and somebody said to her, 'Hon, do you have pins and needles in your fingers?' and she said yes. But she hadn't, because of her intellectual disability, told us this. This gave us a whole new area of investigation, and after six weeks in hospital they discovered that she had spinal cord compression and she underwent a laminectomy. She then had to go through serious rehabilitation, and I'm very pleased to say that now she is working on both legs with a frame. And I want to give a big call-out to the people at St Vincent's public hospital and our wonderful Medicare system who helped Hon.


It just brought to mind the difficulties that people with intellectual disabilities have when they are entering the health system. Honora, my sister, was lucky. She has a big, wonderful family; she has five sisters and lots of adult grandchildren. We were all able to rally around and help her communicate with medical staff. But, unfortunately, for many people that's not the case. Researchers at the University of New South Wales found that people with an intellectual disability are twice as likely to suffer a potentially avoidable death, compared to the general population. One in three deaths in people with an intellectual disability was from a potentially avoidable cause—that is, a death that could have been prevented through individualised health care or through our normal healthcare systems or hospitals. People with intellectual disability experience a large range of risk factors for early death: heart problems, high blood pressure and obesity. They have an average life expectancy of just 54 years. That's 26 years shorter than the general population. Why?


In part it's due to problems accessing health care. Health services are rarely equipped to meet the needs of people with intellectual disabilities, and health professionals are rarely trained in the area. Some health professionals are still not seeing people with disabilities as people with equal rights. Some of it is about training and skills, and about health professionals not knowing how to accurately treat and diagnose people with an intellectual disability. It can be hard, because a lot of people with intellectual disabilities have limited communication. We need to focus on this as a serious health issue. We need to do this better, and treatment shouldn't be a matter of pot luck.