BY SETH KELLER, MD
"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." Helen Beange
Today, individuals with Intellectual and Developmental Disability (IDD) are considered as people with rights who should be included in all aspects of personal, social and health conversations.
But this was certainly not at all true a mere several decades ago. In particular, healthcare for those with IDD has not at all caught up with many of the positive cultural and social advances to this population over time. Helen Beange was quite aware of this huge disparity well before anyone gave it a thought and she decided to make a difference.
When asked about her start 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.'"
In the early 1950's Helen served as a Junior Resident Medical Officer at Royal Alexandra Hospital for Children, as well as a number of locums as a general practitioner in NSW and South Australia. She married a naval aviator and had six children, removing her from the medical profession for 13 years and moved to Perth. With a later return to Sydney, Helen's desire to get back into healthcare never waned and with a strong public health sense and desire to care for those with great needs, she began to work at Grosvenor Diagnostic Centre in assessing children with intellectual disability.
Helen further honed her skills in assessing and caring for those with IDD throughout the late 60's and the 70's as a medical officer and community physician.During this time period social norms were improving for those with IDD, yet health disparities remained greatly unaddressed, however, Helen wrote articles on Cri-Du-Chat syndrome as well as Prader Willi syndrome, all greatly adding to the knowledge about these individuals who have unique challenges. Helen became involved in the deinstitutionalization program in NSW and began to appreciate the importance that exercise and wellness could do for people with disabilities. Helen predicted that with the closure of these hospitals and the subsequent dispersal of the health professionals, the support of the health of people with IDD who were being moved into the community would be at risk. Her views were exacerbated when the responsibility for the support of people with IDD was moved from the Department of Health to the Department of Community Services. Helen maintained a strong commitment to overall public health and she decided to build upon this by returning to postgraduate education. She obtained a Master degree and then later, a Fellowship in Public Health at Sydney University. Helen was instrumental in creating a strong awareness of the importance of health and health promotion through a number of articles. Some of her early papers are still being quoted extensively in the literature. Healthcare was not at all considered to be a priority for those with IDD during this time period, and yet Helen was leading the way. She also wanted to ensure that education to healthcare providers was being delivered and she especially wanted to make sure that doctors would appreciate that the lives of those with IDD mattered and deserved care.
Helen partnered with a growing number of other concerned colleagues and she continued to publish with an added eye to epidemiology and research, two areas which had not been previously investigated to any great degree. Realizing that data helps to drive future care practices and support, Helen was awarded 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 particular study demonstrated that a significant number of medical disorders often are not detected initially unless a further detailed assessment is performed.
Helen "retired" in 1992 and, unlike most people who take a step back in their professional life, retirement was not to be for her. Helen became a visiting Medical officer at the Stockton Centre, a large NSW institution for people with intellectual disability. Helen recruited her colleague Lyn Stewart, an expert in nutrition she had worked with previously. They recognized that individuals at their institution were unfortunately severely malnourished. They implemented an enriched diet with an increased caloric density program for 12 months, which then demonstrated a significant improvement in a number of health measures. 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. A continued focus for Helen and her colleagues was demonstrating that health disparities were highly prevalent in those with intellectual disability. Coming up with a solution and an implementation of policy measures to rectify these inadequacies would lead to a greater appreciation and desire to expand these efforts across Australia and the world.
Helen, together with other doctors and health professionals in Australia, led to the development of the Australian Group for the Scientific Study of Mental Deficiency (AGSSOMD; now the Australasian Society for Intellectual Disability, ASID) – which followed the inauguration of the International Association for the Scientific Study of Mental Deficiency, (IASSMD, now IASSIDD) in 1964. In the late 1990s, Helen Beange and Helen Evenhuis from The Netherlands became the foundation co-Chairs of the IASSIDD Special Interest Research Group on the Physical Health of people with ID, which is Health of people with ID, which is one of the most active research groups in the Association. Helen cofounded the Australian Association of Developmental Disability Medicine (AADDM) alongside her colleague Nick Lennox, and she cofounded the Health Special Interest Research Group (SIRG) within the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSID), two organizations dedicated to improving the health of people with ID.
Trevor Paramenter knew Helen quite well, when he assumed the position of Chair of Developmental Disability and Director of the Centre for Developmental Disabilities (CDDS) in the Sydney Medical School in 1997, which was largely funded by the Department of Community Services. There was no provision for a health clinic, despite the agreement specifying that a medical doctor was to be one of the Centre's first appointments. Helen who had retired, volunteered to run a part-time clinic in association with CDDS where she saw patients from across the State of NSW, with minimal support from NSW Health Department. Upon her appointment to CDDS, Seeta Durvasula and other doctors worked with Helen in the clinic. This has grown into two clinics, both of which are now supported by NSW Health Department. The current Clinic Director at CDDS, Seeta Durvasula, has praised Helen for her leadership and for her being instrumental in helping the clinics grow into two clinics, both of which are now supported by the NSW Health Department.
Helen is a pioneer in the field of intellectual disability medicine in Australia, she is an excellent clinician with great clinical acumen, especially in the detection of genetic and dysmorphic syndromes in adults. She was always respectful to and communicated well with people with intellectual disability in her consultations. Helen is passionate about people with intellectual disability having good health and access to quality health services. Helen is a strong believer in preventive health and, in particular, the vital role of a healthy diet and regular physical activity in keeping people with intellectual disability healthy. Helen has been recognized for her work and dedication. She has received numerous awards and has been asked to present at countless meetings and events. She has received the Certificate of Appreciation from the Western Sydney Disability Service, a Lifetime Achievement Award from the Down Syndrome Association of NSW in 1992, and in 2004 was appointed as a Member in the General Division of the Order of Australia. In 2013 Helen received the Award for Social Welfare and Impact by Santa Sophia College as an alumna. Helen was honored in 2016 with the inaugural Honorary Life Membership by AADDM President Jacqueline Small.
Thank you, Helen, for being a leader with the vision, the will, the guts to stand up to the status quo and create much-needed change for those who, all too often, don't have a voice. You have left a legacy in the field of IDD healthcare that will forever leave an indelible mark within the community of healthcare providers, as well as the many individuals with ID, their families, their supports – and the many organizations who support their care in Australia and across the world.
Helen's own words speak for themselves as a testament to her spirit in an interview published in Interaction. In 2011, Helen expressed her frustration at the plight of disabled people not receiving treatment for easily preventable conditions when she said: "This causes moral outrage in me as it should in others. 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."•
ABOUT THE AUTHOR: Seth M. Keller, MD is Co-Chair, National Task Group on Intellectual Disabilities and Dementia Practices; Chair, Special Interest Group Adult IDD, American Academy of Neurology; Past President, American Academy of Developmental Medicine and Dentistry.
