Carers provide unpaid care and support to family members and friends who have a disability, mental illness, chronic condition, terminal illness or who are frail. 1 in 8 South Australians are carers. About one quarter of the population are affected by government decisions and policies that impact on carers. Carers are entitled to services in their own right, even though their needs are inextricably linked with those of the care recipients.
Carers are entitled to the same rights, choices and opportunities as other South Australians. Carers require particular measures to be part of this social inclusion vision: flexible and responsive assistance to meet their diverse needs to sustain their caring responsibilities, maintain health and participate in community life.
Carer Partnership and Participation
Carers are partners in care in community services and health but their knowledge and skills are not well recognised or used. Service providers need to build genuine partnerships with carers.
A comprehensive program for service providers to address the knowledge and skills necessary for working with carers is required.
Carer Partnership in Health
Carer roles include as health service users, carer representatives in the consumer participation framework, advocates for the consumer, and partners in the delivery of care. It is critical these roles are identified and addressed through policy and practice.
Carers have the right to be assessed in their own right including their time commitments, training and respite needs and the social, health, emotional and financial impacts of the caring role.
Health and Wellbeing
Carers are an at risk population group due to the physical, mental and emotional stresses of the caring role. In putting the needs of the care recipient before their own, carers are slow to seek treatment for their own health problems. Significantly improving the health and wellbeing of carers would enable them to fulfil the roles they play within the health system.
Therapeutic counselling plays a vital role in maintaining carer well-being. Carer counselling services are witnessing more complex calls on top of increasing demand.
After prolonged care giving past carers need time and ongoing support to recover from the health impacts of caring. Some have ongoing major health problems.
A clinical and popular approach that recognizes carers have significant health needs which are identifiable, treatable and preventable is required within the primary health care system.
Respite from their caring role is a major factor in enabling carers to care over the longer term and to make work/life balance choices. Carers require adequate, appropriate, quality, affordable and flexible respite of all kinds, however in many situations, particularly in rural and remote regions, suitable respite is not available.
Many South Australian carers are living in poverty, struggling to meet the increasing cost of living and rising associated costs of caring. Improving concessions and subsidies to help meet extra costs is a top priority for carers.
The State Government plays an important role through its regime of concessions and subsidies, however much of this assistance has a decreasing face value and many carers miss out due to restrictive criteria.
Regional Carer support organisations play a vital role in supporting carers across South Australia, particularly in rural areas, by providing a foundation for connecting carers and developing innovative support structures in local communities. However limited resources and funding restrictions create barriers to meeting this need across all carer cohorts. Carers in rural and remote South Australia face particular barriers to engagement and support including isolation, limited transport services and employment options.
Additional assistance in service navigation, transport options and carer training would enable greater carer engagement and maintenance of their caring.
Providing assistance to carers from Aboriginal communities relies on recognition of family and cultural considerations, putting into place long term programs that can link with communities. Specific services and communication methods are required to reach out to, and support, Aboriginal carers.
Culturally and Linguistically Diverse Carers
14.2% of carers in South Australia are from culturally and linguistically diverse backgrounds. Cultural background can act to complicate and compound the issues for CALD carers. Activities undertaken with CALD carers must be respectful of the important role of community leaders and the priorities of the individual communities. Specific services and communication methods are required to reach out to, and support, CALD carers.
Families of Children with Disabilities
Many families of children with disabilities face insufficient and inadequate services due to limited resources and restrictive criteria. These families need early intervention and low level carer support. Carers would have better capacity to care if they were provided with this support. Disability legislation needs to be updated and reviewed to include carers.
Young carers take on the role of caring beyond what could normally be expected of a child, including physical, emotional and intimate care. Young carers require continuing, flexible support services that are age and culturally appropriate within a family focussed approach to enable them to maintain or reduce their caring role. Schools are a critical point of intervention in building capacity and resilience.
Ageing Carers of Adult Children
Ageing carers of adult children may have been caring for many years. Assistance with transition issues is central for them: they are desperately concerned about who will care when they cannot and are keenly aware of the poor availability of housing and support options.
Mechanisms which provide families with options to combine family and formal resources for future support are yet to be developed or considered.
Carers may be juggling multiple roles in paid and unpaid work, with a high degree of transition into and out of the caring role. The fulltime employment rate of primary carers is less than half that of the general population, with many working below their skill and experience levels. Remaining at work relieves financial hardship and social exclusion. Many would prefer to remain in employment. They require support to do so.
Carers of People with Mental Illness
A very high proportion of people with mental health problems are extremely dependent upon their family for the most basic of everyday tasks. Insufficient state resources for community, social and housing support for people with a mental illness results in considerable burden on their carers who need a range of services to enable them to continue caring.
The rise in chronic, long-term and life-threatening illnesses and conditions, an emphasis on providing care within the community and the ageing of the population has resulted in greater pressure on family members to provide care.
As this demand for care in the community continues to rise an appropriate resource response to increase and improve services for people with disabilities, chronic illness or who are frail aged will significantly reduce the burden on carers.
Availability of low cost transport options is central to accessing services.