Transitioning Respite Carers, Consumers & Stakeholders Professor Kelley Johnson, Dr Myra Hamilton & Dr Gianfranco Giuntoli Social Policy Research Centre UNSW

Aims of this paper To consider the current situation of change and transition To outline changes in Australian policy that affect respite care for people with disabilities, older people and their carers To describe what National Respite is doing to support transition To describe what we can learn from overseas experience To outline a framework for understanding changes to respite care

Not the same thing. Change in policies: older people and people with disabilities. Loss of power New learning Uncertainty. Transition 3 steps Ending what was A neutral zone: (muddling and creative) New beginnings Change and Transition

From a focus on institutional care To citizens with rights Movement towards personalisation NDIS –Life long package –Focus on the person with disabilities –Individualised budgets –People under 65 –Does not apply to all people with disability –Little emphasis on carer needs –No separate carer assessment Change in Policy: People with Disabilities

Change in policy: Older people Long term movement towards older people leading independent lives in the community. Commonwealth Home Support Program –Basic support services for older people and carers –Community living –Focus on older person’s individual goals and preferences –Commonwealth Funding –Consolidates Commonwealth Home and Community Care (HACC) Program, the National Respite for Carers’ Program, the Day Therapy Centres’ Program, and potentially the Assistance with Care and Housing for the Aged Program –Now, only carers for people over 65 will be eligible for the National Respite for Carers Program –No separate assessment of the carers’ needs

National Respite: Supporting Transition SPRC: Project: July 2014-June 2015 Aim: to improve understanding of the possible impact of policy changes for four groups of stakeholders: participants, carers, communities and government. Consult with respite service providers and consumer organisations 3 phases –Undertake a literature review of Australian and international policy contexts to understand what the transition to consumer-directed care markets can mean for the nature of respite –Establish a framework to describe respite outputs, and respite’s intended/realised goals, that can be used to understand change in the Australian service landscape resulting from the NDIS and CHSP reforms –Develop hypothetical ‘transition scenarios’ that map possible changes to respite in the context of the NDIS, which highlight the implications of each scenario for consumers and the sector

Literature search to uncover international research. Shift to personalisation in disability & aged care services can change: –How services are funded: block to individualised funding –How services are provided: eg shift in language –Who benefits? Participant/carer –How they benefit : focus on wellbeing. What can be learned from the literature?

Generally supportive of philosophy Anxieties about labour force Uncertainty about effects of change Lack of information Uncertainty about funding Changing terminology and language Concern for families Increased workload: services and families Move to a business model Importance of training and education Loss of skilled staff What are respite services saying about the changes?

Towards a Framework: Outputs and Outcomes Outputs are the products, services or facilities that result from an organisation’s or project’s activities. Outcomes are the changes, benefits, learning or other effects that happen as a result of what the project or organisation offers or provides. Framework which looks at outputs and outcomes for respite care. Informed by literature and consultation The basis for exploring scenarios of transition

Towards a Framework: Thinking about outputs Location of respite –In home, Centre-based, Host-family home, Community-Therapeutic/health-based location Quantity and timing –Number of hours,Time of day/week, Available at short notice, Flexible Activities –Therapeutic, Social, Recreational, Family-based activities, Personal care Reach – Participants under 65, Participants over 65, Carers of people under 65 –Carers of people over 65

Towards a Framework: Outcomes Individual health and wellbeing Social and economic participation Personal relationships Workforce capacity and conditions Community capacity and support Respite as outcome in itself

Questions What are the issues in relation to changing policy? What should be our position? What steps do you think we need to take to ensure the new beginnings arising from transition are most effective for participants in respite, carers, the providers and the community? What do you see as positive aspects of the change in policy and practice? What do you see as the problems? Change and transition are always difficult but they can also open up exciting new opportunities for practice.