Beange, Helen

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MB BS 1948 Grad Dip PH 1975 MPH 1987

Helen Beange was founding chair of the NSW Association of Doctors in Developmental Disability (ADIDD) which later formed the Australian Association of Developmental Disability Medicine. She has been a pioneer in epidemiological research of people with disabilities in Australia and has been a constant activist for the rights of Australians with a disability.[1]

Describing her entry into medicine, Helen says that “nothing about my life has been planned, including medicine. When, to my surprise, I obtained one of the rare scholarships then available to the University of Sydney, I asked my father what I should do. ‘Medicine’, he said, ‘that’s a good career for a woman.’”

After doing the odd locum and some general practice, Helen married a naval aviator and had six children, removing her from the medical profession for 13 years. Returning to Sydney from Perth, she went to Royal North Shore Hospital (RNSH) and asked to do a refresher course by attending outpatient clinics. After some difficulty getting a job, Helen began at Grosvenor Diagnostic Centre, assessing children with intellectual disability. The medical officers were at the fringe of a revolution in genetics, constantly learning about recently discovered syndromes and how to identify these as the underlying causes of the conditions in their patients.

With her husband posted to Melbourne, Helen worked in a large institution in Victoria, which revealed a lot to her about institutions and the danger of just accepting what occurred in them.

On her return to Sydney, Helen became involved in the start of the de-institutionalisation program in New South Wales. Becoming interested in exercise and nutrition, she decided to investigate how exercise could assist people with a disability. After obtaining a Master of Public Health, RNSH allowed her to start a health promotion clinic for adults with developmental disability. This was soon enhanced by the arrival of a dietitian, Lyn Stewart, and an exercise physiologist, Caroline Bruce. Of their involvement, Helen says, “It was obvious to me that my colleagues, using nutrition and exercise, improved health faster than I did.” She describes this time as one of “fanatical adherence to the philosophy of normalisation – all people with disabilities should live in the community, whatever their special needs, and participate in all community activities”.

In her postgraduate studies in public health, Helen applied epidemiology to the little-studied burden of disease in patients in whom she noticed diverse chronic and complex health problems. She obtained a Research and Development Grant from the Commonwealth Department of Community Services and Health for the first population study of health disorders in people with intellectual disability. This showed that, of a random sample of 202 adults with intellectual disability, each had an average of 5.4 medical disorders, half of which had not previously been detected.

After retiring from Royal North Shore Hospital at 65, Beange worked for a while at Stockton Centre, a large NSW institution for people with intellectual disability. She recruited Lyn Stewart, with whom she had worked at RNSH, to assess the nutrition of the residents. Lyn ran a tape-measure over some emaciated residents and recommended an enriched diet. This resulted in another study showing that 69 of the multiply-disabled residents in this 550-bed institution were severely underweight, with low levels of vitamin D, iron and folate. They were given a diet with increased caloric density for 12 months, leading to significant improvements in weight, serum calcium and vitamin D levels, and in haematological indicators. As a result of this work, there is now a policy of screening the nutritional and swallowing status of all people with intellectual disability in residential care in NSW.

It was generally considered inevitable that people with intellectual disability die young, and this perception prompted the investigation of mortality rates in a previously identified cohort of 693 people with intellectual disability in northern Sydney. It was found that the death rate was five times higher than that of the general population of Sydney’s Lower North Shore. Furthermore, the causes of death, being predominantly respiratory disease and accidents, were quite different from those in the general population. Contributory factors, such as inadequate supervision, delayed presentation and delayed diagnosis of illness, were also identified. The challenge is now to reduce premature mortality and to treat remediable disease. The NSW Ombudsman is charged with the responsibility for reviewing all deaths of people with disabilities in care, looking at the causes and patterns of death and recommending ways of improving services to reduce early or preventable deaths. This important initiative has been noted internationally.

Helen has presented papers at meetings of the International Association for Intellectual Disability (IASSID) every four years. Encouraged by Professor Trevor Parmenter, the then Australian President of IASSID, a Dutch physician, Professor Heleen Evenhuis and Helen formed the Health Special Interest Research Group of IASSID. This Research Group now has yearly international meetings, and its achievements include developing health targets for adults with an intellectual disability. The targets have been accepted by IASSID.

Of Australia’s total population, 1.86 per cent has an intellectual disability. Helen believes that a specialist clinic at each teaching hospital in Australia is required to support general practitioners caring for people with intellectual disability. In NSW, the Centre for Developmental Disability Studies at the University of Sydney has helped Helen to establish a medical clinic with two other doctors. Helen believes that the six-month waiting list illustrates the level of unmet need.

Of her career, Helen says, “I am lucky to have been present at the beginning of a new branch of medicine. I hope that advances in genetics will eventually lead to a therapeutic revolution for people born with intellectual disability.”

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Citation: Mellor, Lise (2008) Beange, Helen. Faculty of Medicine Online Museum and Archive, University of Sydney.

An alternate version appears in: Mellor, L. 150 Years, 150 Firsts: The People of the Faculty of Medicine (2006) Sydney, Sydney University Press.