Dr Nathan Wilson1, Ms Anne Marks1, Professor Angus Buchanan2, Dr Ryan Chen3, Professsor Reinie Cordier2
1Western Sydney University, Penrith, Australia, 2Curtin University, Perth, Australia, 3Sydney University, Sydney, Australia
People with intellectual disability and type 1 diabetes face added barriers to social and economic participation. As type 1 diabetes requires insulin multiple times a day, blood glucose level testing, counting carbohydrates and treating hyper/hypoglycaemia, limits on who can provide that intervention poses as a major restriction on the independence of people with intellectual disability.
We collected in-depth interview data from five people with ID and their primary caregiver about the type and sources of support they require as well as strategies they use to make support easier. One participant also trialled the use of a daily smart-phone survey using momentary ecological assessment software to explore its feasibility as a source of added daily support.
Our data analysis showed that the support of family caregivers is critical with the noted gaps in support from funded disability services creating an added burden on families. This burden extends to family caregivers having to provide health AND social advocacy for their child with type 1 diabetes. The limited range of health supports within the disability system means that living with intellectual disability and type 1 diabetes limits the capacity to live a life beyond the close support of caregivers.
The implications for disability policy and practice will be discussed, in particular the intersection of health and disability systems and the possibility of smart phone technology to supplement other forms of daily support for chronic illnesses such as type 1 diabetes.
Nathan Wilson is a Senior Lecturer at Western Sydney University based in the School of Nursing and Midwifery. His research interests are in applied research that enhances the health, wellbeing and social participation of people with long-term disabilities. In particular, Dr Wilson has expertise on the intersection of disability, men’s health and sexual health with over 25 published scientific articles in the area. Dr Wilson was recently elected to the role of President of the Professional Association of Nurses in Developmental Disabilities, Australia (PANDDA): http://www.pandda.net/