Helen Beange - a doctor's story
Click here to go to the long version of Helen's story I have worked in developmental disability medicine for over 40 years and have often been horrified by the poor health care provided to people with intellectual disability. I started out in 1966 at the new Diagnosis and Assessment Centre at the Grosvenor institution. This was an exciting time in the field of genetics. We were better able to identify conditions such as Prader Willi and Cornelia de Lange syndromes. However, it concerned me that the emphasis was on assessment rather than the overall health and welfare of the children. In 1970, I moved to a community disability team at Kogarah and was able to focus more on medical issues. I saw a child with autism who had been expelled from school for screaming. He had also had a problem with his taxi driver and the police were called. Finally a dentist located a severe dental abscess. With no means of communicating what was going on, the child could only act out in this way. At that time, people often assumed that behaviour problems were part of the disability. The person was sent somewhere for behaviour management or given psychotropic medication. The logical first step of doing a basic physical examination was just not happening. I began to realise that not only did doctors need to be doing slower and more thorough investigations but also just look at the obvious. There were people with cataracts who were groping their way around and no one thought to have these removed. In the 1980s, quite rightly the focus was on getting people out of institutions, out of the medical and nursing care model. However, many people had chronic medical conditions which had not been treated in the past and were still not treated. In 1986, I started the Health Promotion Unit for people with intellectual disability at North Shore Hospital. Here, I did some important research. From a random sample of 200 people with intellectual disability I found that 97% had some kind of physical health disorder. Half of these had not been identified before and only half of the identified conditions had been properly treated. For example, someone known to have high blood pressure had never been treated for hypertension, people were vision impaired and deaf but no one had gotten glasses or hearing aids. After I retired from North Shore, the CEO of Stockton Centre asked me to review the health of residents there. I found that deaths were occurring that could have been prevented, including in quite young adults. Some people died because they could not manage to swallow the food provided. Some because they were very underweight and had little resistance to disease. Obesity was also common. The CEO had me work with a dietitian and psychologist to ensure that underweight people had proper diets and more time to eat their meals. After Stockton, I worked at Ryde establishing the Developmental Disability Health Unit. In recent years, I have also worked closely with NSW CID advocating for better health care for people with intellectual disability. I continue to feel outraged by the limited action on this issue. People with intellectual disability are disadvantaged in so many areas and so many of the health problems that beset them can be easily fixed. Along with a good life in the community and a good education, good health is the absolute right of a person with intellectual disability. |
