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Future matters: ageing parent carers, adult siblings and succession planning
Zoi Triandafilidis | Tom Hinton | Lorraine Villaret
Freya Saich | Sarah Judd-LamAustralian Institute of Family Studies Conference 25-27 July 2018
About
Carers NSW
The peak non-government organisation for people in New South Wales (NSW) who provide informal care and support to a family member or friend who has a disability, mental illness, drug or alcohol dependency, chronic condition, terminal illness or who is frail.
Our vision is an Australia that values and supports all carers. Our goals are to:
• Work with carers to improve their health, wellbeing, resilience and financial security
• Have caring recognised as a shared responsibility of family, community and government
Vision
Who are carers?
Anyone who provides care and support to a family member or friend with a disability, mental illness, drug or alcohol dependency, chronic condition, terminal illness or is frail.
• 904,400 in NSW (including 278,700 primary carers)
• 2,698,700 in Australia (including 855,900 primary carers)
• Approximately 12% of both populations*
* Australian Bureau of Statistics (2016) Disability, Ageing and Carers, Australia: Summary of findings, 2015, Carer tables, Canberra.
• Carers NSW 2016 and 2018 Carer Surveys
• Carers NSW 2017 Adult Siblings Survey
• Experience supporting ageing parent carers across South East Sydney, Mid North Coast, Orana far West
Objective
This presentation
Data sources
To identify the key challenges and opportunities for ageing parent carers and adult siblings in planning for the future
Ageing parent carers
• Long term carers but little engagement with formal services
• Socially isolated and limited finances
• Health decline over time reduces capacity to care
• Caring situation may be ‘interdependent’
Definition
Challenges
• Over 60 years of age (45 years for Aboriginal and Torres Strait Islander carers)
• Caring for an adult son or daughter with a disability, mental illness or long-term illness
Adult siblings
Definition
Challenges
• Over 18 years of age
• Have a brother or sister who has a disability, mental illness or health condition
• May at some time care for them
• Often ‘hidden’
• Can experience reduced participation in education, employment and community
• Uncertain future
• Increasing level of responsibility as their parents age
Phase 1: Growing up
Family dynamics over time
Parent
Child with disability
Siblingsecondary carer
Family dynamics over time
Phase 2: Adulthood
Parent
Adult with disability
Siblingsecondary carer
Family dynamics over time
Phase 3: Later in life
Parent
Adult with disability
Siblingprimary carer
Phase 4: Parent deceased
Family dynamics over time
Adult with disability
Siblingprimary carer
Succession planning is about identifying replacement support ahead of the time when the current primary carer can no longer care sustainably.
This may include:
• Discussing future plans with family and service providers
• Making a will, appointing an Enduring Guardian or Power of Attorney
Definition
Succession planning
• Considering joint guardianship and financial management arrangements
• Capacity building to support the person with disability to live independently
Carers feel that avoidance, lack of guidance and a lack of appropriate residential provision are obstacles to making future plans. These barriers are also compounded by the emotional upset carers experience when thinking about the future*
Older people with intellectual disabilities have been identified as a ‘new’ and emerging population, for which “there is an urgent need to develop services and support structures” for them and their carers**
*Taggart, L., Truesdale-Kennedy, M., Ryan, A., & McConkey, R. (2012). Examining the Support Needs of Ageing Family Carers in Developing Future Plans for a Relative with an Intellectual Disability. Journal of Intellectual Disabilities, 16(3), 217–234.
**Ryan, A., Taggart, L., Truesdale-Kennedy, M. & Slevin, E. (2014). Issues in Caregiving for Older People with Intellectual Disabilities and Their Ageing Family Carers: A Review and Commentary’. International Journal of Older People Nursing, 9, 217–26. doi:10.1111/opn.12021.
Succession planning
Current research
Future planning among carers of NDIS participants*
Succession planning
* National Disability Insurance Agency (2016) National Disability Insurance Scheme Outcomes framework pilot study: summary report, September 2015
• They are unsure of how to start or where to get help
• There is no obvious choice for a family member or friend who can replace their care
• They have limited income, limited education, and limited social networks
• Thinking about the future can be confronting and anxiety provoking
Challenges: ageing parent carers
Succession planning
“I have been looking after my son for 31 years as his main carer. I have always hoped that [he] would be appointed an advocate for his needs…I hope that his needs in the future will be better met.” (female carer, 69 years, caring for her son).
“The anxiety you have for your child and their future & providing for their future well beyond 18 years.” (female carer, 47 years, caring for a son/daughter).
“Over the 30 years of caring I have managed to hold on to optimism but at present I'm feeling fearful about the future and can feel my optimism slipping away” (female carers, 60 years, caring for a son/daughter).
Concerns about the future
Succession planning
• Difficulties engaging parents in conversations about the future
• Balancing caring with other aspects of their own lives (i.e. work, children)
• Finding suitable housing options
• Ensuring the ongoing financial security of their sibling
• Limited information and targeted support services for adult siblings
• Disparities in the level of care provided by the parent vs what the sibling is prepared/able to provide
Challenges: adult siblings
Succession planning
The National Disability Insurance Scheme (NDIS) has the potential to:
• Improve access to funded support, reducing the pressure on informal carers and increasing their engagement with the workforce (and therefore their financial resources over the life course)
• Support short, medium and long-term planning that facilitates increased independence and responds to changing need
• Create conversations about what informal supports are doing and whether these arrangements are sustainable
• Assist with setting up independent housing, which is a key challenge in succession planning
• Identify carers in order to refer them to support
Opportunities
Future matters
• The Integrated Carer Support Service (ICSS) rolling out service via the Carer Gateway from October 2018 will centralise access to existing carer supports and provide a range of new supports, including education and peer support
• State and Commonwealth carer recognition legislation enshrines best practice principles for working with carers that government agencies such as the NDIA are required to uphold
Opportunities
Future matters
• Not everyone is eligible for the NDIS, and those who are not have limited alternative support in NSW
• Many NDIS plans do not include adequate funded support
• The NDIS recognises carers but their formalised opportunities for input and direct support are limited
However:
Future matters
• The scope and reach of support under the ICSS is still unclear
• Carer recognition legislation does not provide legally enforceable rights for carers, and many agencies have a long way to go in upholding it
• Continue and expand tailored support and outreach to adult siblings and ageing parent carers
• Embed carer recognition and support in the NDIS
• Increase and centralise access to succession planning support and resources
Recommendations
Future matters
