Carer respite: the key to a sustainable aged care system? Madeleine Gearside Melissa Docker
Acknowledgment of Country I would like to acknowledge the Traditional Custodians of this Land. I would also like to pay respect to the Elders both past and present and extend that respect to other Aboriginal people here today.
About Carers NSW Carers NSW is the peak non-government organisation for carers in New South Wales (NSW). Our goals are to: • Be a leading carer organisation in which carers have confidence • Actively promote carer recognition and support • Actively support carers to navigate a changing service landscape that will be characterised by ongoing policy reform • Promote connected community experiences and opportunities for carers that are inclusive of diverse carer groups • Lead and advocate for carer-specific and carer-inclusive policy making, research and service delivery • Continue to be a quality-driven, responsive and carer-focused organisation.
About carers Who are carers? • Provide care and support to a family member or friend who has a disability, mental illness, drug and/or alcohol dependency, chronic condition, terminal illness or who is frail. • This definition does not include: • paid care workers • formal volunteers • parents / foster carers / kinship carers • 854,300 carers in NSW, including approximately 273,900 primary carers* * 2018 Survey of Disability, Ageing and Carers
Background Evidence base • Review of published evidence and literature on carer respite as part of the Carer Respite Alliance project, led by Carers NSW • Carers NSW 2018 Carer Survey (n=1,830), Carers NSW 2020 National Carer Survey (n=7,735) • Carers NSW experience delivering a range of programs to older carers in NSW, including the new Carer Gateway services in Hunter New England, Central Coast and North Coast from April 2020
Background Aged care and carer support sectors • Aged care reforms, e.g. Consumer Directed Care • Transition of existing respite services and carer-focused wellbeing supports • Royal Commission into Aged Care Quality and Safety • Carer Gateway implementation
Context Respite services in the aged care sector • Embedded in legislation: - Aged Care Act 1997 - Aged Care (Transitional “Respite care requires urgent Provisions) Principles 2014 attention and expansion in scope, variety and scale. Current respite offerings are difficult to navigate, • Provision is a legal obligation not financially viable for providers and insufficient to address the • 63 days of funding for residential needs of older people and their respite care per calendar year carers” - Counsel Assisting final submissions, Royal • Aged Care Royal Commission Commission into Aged Care, October 2020 findings
Types and benefits of respite
Heading Carers NSW 2020 National Carer Survey • Nation-wide survey of family and friend carers (aged 16+ years) • Developed in consultation with expert reference committee and in partnership with the Carer Associations in each state and territory • Range of topics to inform research and advocacy: o Demographics o The caring relationship o Services and support o Experiences of paid work o Health and wellbeing • Survey distributed in online and hard copy form Not representative, more in-depth questions than SDAC
Demographic characteristics
Carer statistics Carers NSW 2020 National Carer Survey 45.0% 40.0% 35.0% 30.0% 25.0% 20.0% 15.0% 10.0% 5.0% 0.0% Emergency respite Planned respite % currently using % would like to use more
Barriers to access • Availability “ More respite needs to be available that is affordable. [A] • Awareness level 2 package is approx. $43 yet daycentre costs $70. And • Accessibility then you have to pay for transport and admin and case • Appropriateness management fees. The maths doesn’t add up.” • Affordability - Carers NSW 2018 Carer Survey respondent See Carers NSW (2016) National survey of carers' respite needs: Final report
Developments and recommendations
References Bellamy, J., Paleologos, Z., Kemp, B., Carter, S. & King, S. (2014) Caring into Old Age: The wellbeing and support needs of parent carers of people with disabilities Carers Australia (2018) Improving access to aged residential respite care Carers NSW (2016) National survey of carers' respite needs: Final report Carers NSW (2018) Carers NSW 2018 Carer Survey: Summary report Carers NSW (2020) 2020 National Carer Survey: Summary report Carers NSW (2020) COVID-19 and carers: A review of the evidence Carers NSW (2020) The COVID-19 Pandemic: Challenges and opportunities for carers in NSW Hamilton, M., Giuntoli, G., Johnson, K. & Fisher, K. (2016) Transitioning Australian Respite Kemp, B., King, S., Paleologos, Z., Bellamy, J. & Mollenhauer, J. (2016) Carers: Doing it Tough, Doing it Well Mollenhauer, J., King, S., Bodiam, T. & Bellamy, J. (2013) Caring for a child with an intellectual disability and challenging behaviours Phillipson, L., et aI., Knowledge, help-seeking and efficacy to find respite services: an exploratory study in carers of people with dementia in the context of aged care reforms. BMC Geriatrics, 2019. 19 (2).
Madeleine Gearside | Policy Officer madeleineg@carersnsw.org.au Melissa Docker | Policy Officer melissad@carersnsw.org.au 02 9280 4744 www.carersnsw.org.au
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