Issues in respite and carer support Chris Gration, National Respite 28 July, 2014

Agenda 1.National Respite introduction2:00 2.Ability Links presentations2:15 3.Respite and carer support in 3 service systems2:45 4.Respite in aged care – CHSP and flexibility3:00 5.Respite in disability – NDIS3:20 6.Respite in Mental health 3:40 7.Action!3:50

1.1 National respite Communities of strong relationships that support the lives people choose Support interconnected wellbeing between people with disability, frailty from age, mental illness and their chosen carers, families, and informal supports

1.2 National Respite 1.Raise the respite voice: NDIA, DSS 2.Member services 3.Research: – Mapping respite outputs – NDIS transition cost/benefit/impact carers, participants, communities government – Volunteer, flexible, family based – cost benefit; social capital – Evaluate innovation: flexible, early intervention 4.Business transformation : CMS, online tools 5.National Conference October

2. Ability Links

Carer Care recipient Respite Care Carer support ? ? ? 37 NDISCHSP Family resilience model? 3.1 Respite and carer support in 3 systems

3.2 Trends Unmet demand up 33% between the 2009 and 2012 SDAC – 15.8% or 121,660 carers Unmet demand for respite care increases with age: – > 65 the unmet demand is 16.9%, – > 75 it is 19.61% (compared to general unmet demand in 2009 of 11.8%) Respite is already targeted to higher dependency: – Respite use increases dramatically (60% of respite use is for carers < 40 hours of care a week). But respite users have higher wellness and satisfaction deficits: – indicating need for more support (significantly more angry, dissatisfied, weary, worried or depressed, stressed related illness) 2/3s of unmet demand in 2012 was from those who have never had access to respite. – 12% of carers have never used respite because the primary recipient (aged person) doesn’t want to use it (2012) – 10% of those who don’t use respite are simply not aware of their entitlements or what services are available (2012)

4.1 CHSP issues General Key directions – access and equity, role of carers, pathways, person centred Outcome 3 Social Participation and Outcome 6 Care Relationships General Issues “Basic”? Pathways and packages Case management & linkage – Vulnerability – SG2 Transition principles: – No client loses – person centred Contestability 37 CHSP

4.2 CHSP Respite issues Issues for Respite & Carers Unmet need – 15.8% Access: – 12% not used because primary recipient unfavourable – 10% information gaps Eligibility for carers Carer support – funding Carelink information? Transition for NRCP clients Innovation and evaluation: – Early intervention respite – Flexible respite

4.3 Flexibility Outcome 6 Care relationships 3 types: cottage, emergency, flexible Grow flexible respite Trial cashing out Issues Carer/care recipient goal conflict Inflexibility of non-residential respite – hours, continuity of staff, training, rural remote Gaps in secure residential respite? Dementia and younger onset Approach Supporting challenging behaviours Learning from CDRC & disability: – Drawing in informal supports – Out of pockets Pilots, training, best practice

4.4 CHSP Next Steps DSS – Fees Policy – Guidelines and Program Manual – Contestability end FY15 Community Care Issues Forum 1.Assessment - RACs 2.Fees 3.Contestability 4.Sector Support & Dev 5.Guidelines and Transition What are your key priorities?

5.1 NDIS issues 1.Participants 2.People with lower support needs & Tier 2 3.Transition and structural adjustment 3 Person with Disability 3 2 1

5.2 NDIS issues Participants NDIS Act : – Section 31 (da) “build capacity of families and carers to support participation by the individual in life” – Section 34 (e) “ what is reasonable for families, carers, informal networks and the community to provide” NDIS Supports for Sustaining Informal Supports Recreation Guideline Flexibility Need for data Guide to NDIA clusters and price list Non-participants with disability Combining informal support, personal networks, mainstream inclusion Role of specialist disability services Funding – Commonwealth/State Transition Large, medium, microbusiness IDF and Sector Development

6. Action 1.Participate in our research 2.Spread the word 3.Come to National Conference 4.Engage in business transformation www. Nationalrespiteaustralia.com.au