page updated 18 June, 2010
Who are older parent carers?
How Carers NSW can help older parent carers
How Carers NSW can help older Aboriginal and Torres Strait Islander parent carers
How service providers can refer older parent carers to the PFF Project
More information about older parent carers
Who are older parent carers?
Older parent carers are people aged 60 or over (or 45 or over if an Aboriginal person or Torres Strait Islander) who are caring for their son or daughter with a disability or long-term illness.
Parents who are older and who are also caring for a daughter or son with a disability or long-term illness face many challenges, sacrifices and need all the help they can get. Research shows that older parent carers are most likely not getting any help from local services and are more likely to have been caring for someone for many years without any, or very little, outside help.
Older parent carers have often neglected their own health and wellbeing for the sake of their own child with a disability. We know too that older parent carers need help to plann for the future, to maintain their own health and ensure that their son or daughter with a disability continues to receive quality care in the future.
Carers NSW can offer assistance and support to older parent carers through our Planning for the Future Project.
How Carers NSW can help older parent carers
If you are a parent aged 60 years or over, and caring for a son or daughter with a disability or long-term illness, then Carers NSW can offer assistance and support through our Planning for the Future Project. If you’re an Aboriginal or Torres Strait Islander parent carer aged 45 or over then we can help you too.
The Planning for the Future Project delivers a flexible, family-centred case management service which aims to prevent or alleviate the stress that can build up in families because of caring responsibilities.
We can help with referral to the right services as well as information relevant to your situation. We can also talk with you and your family to develop a case plan tailored to your family situation.
More details
Call our Sydney office on 9280 4744 | Call our Dubbo office on 6884 7200 | Call our Coffs Harbour office on 6650 0512 Carers from other areas in NSW please call the Planning for the Future Project coordinator on 1800 242 636.
How Carers NSW can help older Aboriginal and Torres Strait Islander parent carers
If you are an Aboriginal person or a Torres Strait Islander aged 45 or over, and caring for a son or daughter with a disability or long-term illness, then Carers NSW can offer assistance and support through our Planning for the Future Project (Aboriginal Service).
The Planning for the Future Project (Aboriginal Service) offers a culturally sensitive, respectful and flexible family-centred case management service, which aims to prevent or alleviate the stress that can build up in families because of caring responsibilities.
We can help with referral to the right services as well as information relevant to your situation. We can also talk with you and your family to develop a case plan tailored to your family situation.
More details
Call our Sydney office on 9280 4744 | Call our Dubbo office on 6884 7200 | Call our Coffs Harbour office on 6650 0512. Carers from other areas in NSW can refer to the Ageing Disability and Home Care (ADHC) website for local contact details, or alternatively contact one of the above mentioned offices and staff will direct you to the appropriate agency. Carers can also call the Carer Line - 1800 242 636 (free call except from mobile phones) for further information or referral.
How service providers can refer older parent carers to the PFF Project
If you are a service provider and would like to refer an older parent carer to the Planning for the Future (PFF) Project please contact one of our Project offices:
Sydney office: 9280 4744
Dubbo office: 6884 7200
Coffs Harbour office: 6650 0512
Carers from other areas in NSW please call the Planning for the Future Project coordinator on 1800 242 636.
More information about older parent carers
Older parent carers with a daughter or son with a disability have been identified as hidden carers who are less likely to be receiving services and who are largely invisible to the established service system. Carer representative groups across Australia have identified that there is an enormous gap between the demand for, and the supply of supported accommodation to assist with respite services. These groups have also identified that older parent carers need urgent help to plan for their future including support with emergency planning, long-term care planning and ‘succession’ planning.
Older carers are particularly concerned that there will be no one to provide personal and quality care to their son or daughter should they fall ill or die.
This has resulted in both state and federal government prioritising older parent carers as a significant group that needs urgent help and attention. In spite of the burdens that these carers live with on a day-to-day basis, many are unaware that there may be services available to help them and, if they do know about services, they may be distrustful that those services can really assist them.
Carers NSW began advocating for the needs of older parent carers more than ten years ago, and more recently through the NSW Carers Coalition – a group of organisations providing support for carers and those they care for across NSW. The group has produced a discussion paper and held forums to raise awareness about this important issue.
In the NSW Carers Action Plan 2007-2012, the NSW Government outlined five priority areas for action and which have particular relevance for older parent carers. Responsibility for implementing the Plan rests with a number of government agencies, including the Ageing, Disability and Home Care (ADHC), who have funded Carers NSW for the Older Parent Carers Planning for the Future (PFF) Project.
The five priority areas identified in the Plan as fundamental to improving quality of life for both carers and the people they care for are:
1. Carers are recognised, respected and valued – carers are valuable contributors to community life. They improve the quality of life of the person they care for and enable them to remain in the community and reduce the demand for health care and other support services. The value of unpaid care far exceeds the expenditure on formal services.
However, carers report that they often feel ‘invisible’ or taken for granted. In the 2003 Survey of Disability, Ageing and Carers (SDAC), only 25.7% of primary carers felt satisfied with their caring role and 29% felt that caring had adversely affected their health. Carers sometimes don’t recognise themselves as carers and can miss out on financial, practical and emotional support.
2. Hidden carers are identified and supported – while many carers are well supported by family and friends and feel they have no need for formal services, there are carers who are isolated, providing significant amounts of care and are not receiving support either from formal services or from other carers, family and friends. ‘Hidden’ carers may not identify with the term ‘carer’, be unaware of supports available or cannot access a service appropriate to their needs. Reaching ‘hidden’ carers earlier can reduce the negative impact of caring on their own health and wellbeing and prevent crises. The focus here is to reach carers who have specific needs or face additional barriers. These including older carers, carers from culturally and linguistically diverse (CALD) backgrounds, young carers and Aboriginal carers.
3. Services for carers and the people they care for are improved – carers need support from services that address their needs and the needs of the person they are caring for. In many respects the needs of carers and care recipients are interdependent.
Many formal services are currently provided without being tailored to the specific needs of the carer or the care recipient or services are unable to meet current demand.
Services need to be available, affordable, accessible, flexible, culturally competent, and of high quality. While respite care is highly valued by carers, the demand for more respite may be masking the lack of a range of other services. Linking carers to support is not restricted to formal services. Strategies can be put in place to extend the support provided to carers from other family members, their wider social network, other carers, employers and local communities.
4. Carers are partners in care – carers play a crucial role as care partners. They are often experts in the care of the person requiring care and can assist with care planning and delivery, with the agreement of the care recipient. However, carers report that they are often not consulted. Timely provision of information, education and training of carers empowers carers, increases resilience and coping skills and provides direct health benefits to carers and the person requiring care.
Service providers can identify carers, assess their needs and link them to appropriate support. Support needs change over time and support is particularly important at transitional points. Staff education is a crucial part of changing the culture from focusing solely on the client/patient/consumer and developing carer friendly services. Working with carers not only improves the quality of life of the carer but also has beneficial health outcomes for the person being cared for.
5. Carers are supported to combine caring and work – carers are more likely to be unemployed or not participating in the workforce than non-carers. If they are working, it is more likely to be in part-time work. Many carers who are not in the labour force would like to return to work. Many carers give up or reduce their working hours, miss out on career or job opportunities, manage on lower incomes and struggle to save for the future. Women are particularly disadvantaged in their ability to accumulate retirement savings.
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i Pierce, Gill. 2007. Models of Support for Older Parents of People with a Disability. Carers Victoria. Australia.ii NSW Carers Coalition, Mapping supports and services for older parents carers. July 2005. Australia.
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page updated 18 June, 2010
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