Peer support and action research – capacity for self directed support Karen R Fisher, Christiane Purcal, Ngila Bevan, Sally Robinson UK Social Policy Association Conference, Sheffield July 2014 Acknowledgements: Ariella Meltzer, Rosemary Kayess, Sam Cooper, Phoebe Meyer, peer support groups

Outline National Disability Insurance Scheme (NDIS) Arranging peer support groups Experience of peer support groups Experience of self directed support Implications for NDIS implementation

National Disability Insurance Scheme (NDIS) Trials until 2018, national implementation 2019 Assessment and allocation of individual package managed by person, intermediary or service provider Estimated to apply to 10% of disabled people Supplement with mainstream and informal support Other disabled people mainstream support – health, home care, education, housing

Peer support groups for practice improvement Peer support is an action research activity by groups of colleagues to improve practice of support people using a service to develop their capacity to make decisions about their own support Conduct activities or discussion to explore experiences and opportunities for change, such as Meetings, art, photos, discussion, fun, food, recordings Reflect on implications Act on reflections Cycle of change

Arranging peer support groups Coordinator for resources, advice and support Guidelines about how to form a peer support group Facilitator from the disability community Group training of facilitators Recruitment of peer support group members by the facilitator Approximately monthly  activities in the peer support group  meetings of facilitators to share experiences and resources  summary of process and findings from coordinator

Peer support group topics Characteristics of your disability support: flexibility, control, choice, self-determination, size of the package Organising support services: information, administration, manage funding packages, advocacy Social life: Family, social networks, relationships, leisure, recreation Participation in the community: employment and education, accommodation, health services Arrangements and relationships with support workers Reflection on the research process and outcomes: How have you found this process? What does it mean for disability support? What do you want to tell other people?

Experience of self directed support Wide range of support arrangements hold all the funds and own administration partial self-direction, decide how funding is spent and administration by an agency agency funded and directed services agency funded and directed services, with some control over funding choices agency funded services for a small number of support hours no formal support Keen to move to greater self direction to make choices and overcome frustrations

Organising self directed support Information from trusted sources such as peers and advocates about options available how to exercise choice about options how to plan, use and manage self directed support resources to make it easy

Social and community participation Building social relationships Life goals to drive support needs Innovative options with support workers and transport Meaningful recreation, employment and education activities Pivotal positive relationships with support workers Support to achieve life goals How to build and manage Training, information, resources, reflective practice, shared experiences

Limits to the method Distance – difficult or impossible for people who needed to travel Confidence to take up technology to overcome distance Disparate needs of people with wide range support needs

Implications for NDIS implementation Benefits of peer support group practice Peer support – share resources, knowledge, experience Self-advocacy – build capacity, problem solving, confidence Capacity building for research and connections for systemic advocacy Networking – individual, community groups, advocacy organisations Data collection for further research – wellbeing, reflections, art Key is flexibility in Recruitment and retention of participants Managing inclusion and fostering a positive group dynamic Variety of activities, methods and inclusive resources Support from facilitator, coordinator, disability advocacy

Disability policy projects and publications What can we do in our research group? Different ways to do research, SPRC Resource 1/14, Sydney: Social Policy Research Centre, UNSW Australia. Meltzer, A., Fisher, K. R., Purcal, C., Bevan, N., & Cooper, S. (2014) Centre for Analysis of Social Exclusion (CASE), LSE, July to Dec 2014 Contacts