ANGLICARE Diocese of Sydney: Sue King, Johnson Nsiah, Caitlin McDowell and John Bellamy, October 2010
This recent report by Anglicare reports on findings over 2 years from 289 participants in the Support Coordination Program for ageing parent carers. The findings reflect those of numerous previous reports on issues faced by family and carers of persons with a disability, including persons with a mental illness. The ageing of persons with a disability is a relatively new phenomenon. The ageing process for persons with a disability presents particular difficulties which flow into the need for innovative and specialised policy and service responses.
Despite some degree of preoccupation with intellectual disability, the findings of this report are relevant to ARAFMI’s members and Mental Health carers more generally, particularly the need for a spectrum of supported accommodation models to allow for the diverse needs of the individual care recipient. One of most significant gaps identified in the report is the lack of long-term supported accommodation. Further to this, demand for longer term respite services leads to a shortage of emergency respite to provide care in times of crisis such as when a carer is hospitalised. There is a need for increased funding for in-home respite care.
The report notes that little attention is paid to addressing the emotional needs of carers. There are high levels of isolation and limited social support from family and friends. Compounding this are problems of trust and communication with service providers, which compromises the willingness of carers to engage with services at the same time that it compromises the capacity for service providers to address the needs of their clients.
Although around 25% of those participating in the program received assistance regarding social contact for the care recipient, the majority of ageing parent carers – 75% - were unable to pursue their own goals and interests. Carers were overwhelmingly (90%) unable to increase their social contacts or to maintain friendships outside home. There is insufficient access to integrated communication services and, following on from this, social isolation. This has a significant impact upon the health and well being of carers.
The report notes that “integrated, targeted and holistic policy solutions are required to establish new pathways for ageing parent carers and the people for whom they care” (p. 2). It finds significant benefits flowing from case management and suggests a need to continue and expand such programs.
The report concludes by saying that “ageing parent carers are stoic, determined, exhausted and not adequately supported by the current system. They exhibit significant levels of stress, isolation and disconnection from social and community support networks…Their well being and health is frequently compromised yet they maintain their caring role in the face of often insurmountable barriers. They are both caring and careworn” (p.24).
There is already a large evidence base highlighting the plight of carers and care recipients. Numerous reports have discussed the same or similar issues and the findings of these reports are remarkably consistent. As the report questions: “Can the evidence provided in this and other reports move government to transform policy and make a difference in the lives of such carers – people who are taking on the responsibility, the financial cost and the advocacy of caring in the community?” (p. 24). This is the task at hand for elected representatives and policy-makers at both federal and state levels.
The full text of the Anglicare report may be accessed at: www.anglicare.org.au/news-research-events/latest-research/care-to-live-or-live-to-care