To assess the ageing and palliative care needs of people with an intellectual disability

Abstract

My Churchill Fellowship was undertaken over a period of approximately 7 weeks during June, July and August of 2013. I travelled to the USA, Ireland and the United Kingdom (UK) to investigate and explore support practices for individuals with an intellectual disability who were ageing or required palliative care support. A particular focus of the Fellowship was to examine the models of care that could be easily replicated within both rural and metropolitan areas of Australia. The Fellowship involved visits and discussion with community based organisations, health services, government representatives and academics. The full report makes the following recommendations: 1. To greatly expand the number of specialist disability nurses employed within the Nursing and Health Care Division of the Clinical Innovation and Governance Directorate in Ageing, Disability and Home Care in NSW, and to explore similar such models within other states. 2. That current legislation surrounding 'deaths in care' of people with disabilities be reviewed and changes around 'natural' deaths versus 'unexpected' deaths for people with intellectual disabilities be discussed. 3. That greater cross-sector collaboration between generic health and specialist ageing, disability and palliative care services is supported, with a specific focus on providing training for all carers, both paid and unpaid. 4. That specific training for the provision of 'end of life' care is provided for disability support workers across both rural and metropolitan locations. 5. That government disability accommodation funding is made suitably flexible to actually support the concept of 'ageing-in-place' by recognising that individual need may increase over time. 6. That the key professional association for disability workers, the Association of Australasian Disability Professionals (AADP), examines the feasibility of introducing specific individual accreditations for disability workers in key areas such as dementia, mental health and end-of-life care. 7. That the legislation and implementation of the new DisabilityCare model both recognises and specifically addresses responsibility for ageing and palliative care issues for people with intellectual disabilities.