Issues in respite and carer support

Chris Gration, National Respite28 July, 2014

Agenda

1. National Respite introduction 2:002. Ability Links presentations 2:153. Respite and carer support in 3 service systems 2:454. Respite in aged care – CHSP and flexibility 3:005. Respite in disability – NDIS 3:206. Respite in Mental health 3:407. 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 Respite1. Raise the respite voice: NDIA, DSS 2. Member services3. 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 23-24 October

2. Ability Links

CarerCare recipient

Resp

ite

Care

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uppo

rt

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3 7

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 issuesGeneral• 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

3 7

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 6Care 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 Forum1. Assessment - RACs2. Fees3. Contestability4. Sector Support & Dev5. Guidelines and Transition

What are your key

priorities?

5.1 NDIS issues

1. Participants2. People with lower

support needs & Tier 23. Transition and

structural adjustment3

Person with

Disability

3

2

1

5.2 NDIS issuesParticipants• 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 research2. Spread the word3. Come to National Conference4. Engage in business transformation

www. Nationalrespiteaustralia.com.au