Background The literature on end of life care in the disability sector is sparse, despite deaths in residential disability homes becoming more common as the cohort of long-term residents ages. If people with disability are to have choice about their dying, both the knowledge and skills of their carers and systemic barriers that are embedded in legal structures, policy and service systems must be addressed.
Aim In partnership with disability services we aim to build sustainable organisational capacity that will equip workers in residential disability homes to coordinate dying residents’ care according to those residents’ wishes.
Method The attitudes of disability workers toward providing end-of-life care for their clients, and their experiences in doing so, have been surveyed. The survey identifies both the assets workers bring and the barriers they experience in providing end-of-life care. Focus groups have explored these findings further in order to develop strategies that build workers’ capacity to provide end of life support for residents.
Results Results from the survey, distributed to over 1000 staff members in north-west metropolitan Melbourne, reveal both the relational skills workers bring to their task and their lack of training for end of life care. These survey results, and the findings from subsequent focus groups, will be presented. The effectiveness of HPPC interventions being developed will also be discussed.
Conclusion A Compassionate Communities approach enhances residential disability care workers’ capacity to provide end of life care for clients. Numerous structural barriers at the policy and service level still need to be overcome if people with disability are to have genuine options concerning how, and where, they die.
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