12th Biennial National Conference Choices that matter: ECI in a new era … Acting as the Voice of One’s child: The Parent Room Peer Support and Advocacy Training Program for Parents 7-9 September, 2016 Melbourne, Australia

Parent Room - Where the idea came from? Noah’s has evolved Services more flexible Preparing for NDIS Many years majority of families visited our Centre for group setting for 2 hours per week often for year on year – Opportunity for parents to learn from: Teachers & Therapists & also time in Parent Room Support from Psychologist & Family Information Support Worker PLUS there is Parent to Parent Support reduce isolation make connections and friendships find out vital information share experiences provide comfort ECIA 12th Biennial National Conference, Choices that matter: ECI in a new era …

Evolving of Noah’s Shoalhaven Noah’s moved to new building at Shoalhaven Campus Noah’s continue to prepare for NDIS and under new model More one on one visits More home visits More visits at Preschool and community settings With the new approach many of the valuable connections that have been so important have and will be lost ECIA 12th Biennial National Conference, Choices that matter: ECI in a new era …

Noah’s and Parent Room Progress - 2015/2016 RESEARCH AS A FOUNDATION: The purpose of this research is to inform policy and practice in the new NDIS environment The goal is to develop an evidence-based intervention that can be used by other organisations Our Parent Room Program aims to recreate, develop and enhance the benefits of former Parent Room Parent Room Monthly meetings – last Thursday of the month. Day and Evening meetings Variety of information topics Parent Room Advocate Training Pilot in partnership with CareSouth in Wollongong. ECIA 12th Biennial National Conference, Choices that matter: ECI in a new era …

Key components of program Parent mentors Peer groups Advocacy training In-person or via technology ECIA 12th Biennial National Conference, Choices that matter: ECI in a new era …

Parent mentors Want the best for my child What should I be doing? What can I do? Where do I go? Who do I see? What happens next? Inspire different solutions ‘Parents who have already been through situations can support families in early diagnosis and assist them in knowing they are not alone’ ‘Important for parents to learn and receive support from other parents who had been through similar experiences’ ‘Great to speak with others who have been there and truly do understand’ ECIA 12th Biennial National Conference, Choices that matter: ECI in a new era …

Peer groups Peer support offers: Peer support results in2: What are my options? What worked for you? What should I be doing? Opportunity to discuss the future eg: NDIS options Peer support offers: Learning practical information and becoming inspired by the experience of others Supporting others (mutuality of support) Personal growth (new skills, motivation, empowerment, and affirmation of expertise as parents) (Shilling, et al. 2013) Peer support results in2: Improved mental health through enhancing feelings of competence, empowerment & reassurance (Finfgeld-Connett, 2005) ECIA 12th Biennial National Conference, Choices that matter: ECI in a new era …

Parent Room Advocate Training 2016 Pilot Week 1 Week 2 Week 3,4,5 Week 6 Week 7 Week 8 VISION NEEDS METHODS & CONTEXTS PLAN OF ACTION CARING FOR YOURSELF & BUILDING NETWORKS REVIEW, FEEDBACK, GRADUATION Introduction to 8 weeks Identifying your child’s needs Medical & Funding Education Community Starting an action plan – review your child/ren’s Needs and Methods Changing support needs Review all that has been covered. Developing a Vision Advocacy in action – case studies Looking after yourself Revisit any outstanding questions/ areas Introduction to Advocacy Reflecting on your experience Building New Networks NDIS – Your informed choice and No Disadvantage NDIS – Tips from Carers NDIS – Guide to Service Agreements NDIS – Education and Transport NDIS – Understanding Respite Celebrating Success - Graduation Week 3 Week 4 Week 5 Medical & Funding Education Community Being an advocate in Medical & Funding Environments Being an advocate in Education Environments Being an advocate in Community Environments Communication Tools Rights in Education – Child and Parent/Carers Early Start Discovery Space Preparing for Meetings Preparing for Transitions Community Focus NDIS -Reasonable & Necessary Support + Self Management NDIS – Education NDIS – Transport Facts ECIA 12th Biennial National Conference, Choices that matter: ECI in a new era …

Key themes in literature Advocacy for children with additional needs is a dynamic process that changes based on the developmental needs of the individual (Alper, Schloss & Schloss, 1995). The psychological and emotional experiences associated with advocacy can be challenging to parents, such as needing to be assertive with professionals (Nachshen & Jamieson, 2000) Parents may also encounter barriers to advocacy associated with cultural values, literacy, financial resources and logistics (Harry, Allen & McLaughlin, 1995; Weiss & Coyne, 1997) ECIA 12th Biennial National Conference, Choices that matter: ECI in a new era …

Preliminary Findings Parents reported feeling more confident after completing the advocacy training, and expressed that they would be more assertive and persistent in future advocacy situations The types of knowledge identified as most important were knowledge of children’s rights in education, information about local services and awareness of NDIS planning Skills related to developing a plan and organising meetings were also identified as highly important Many parents reported wanting to advocate for other children in the community with additional needs, for community-level change ECIA 12th Biennial National Conference, Choices that matter: ECI in a new era …

Parent stories Access to lots of information, hearing from experts (on-line and in person), opportunity to share personal stories and increased confidence equated to: Building better relationships with schools Growing understanding of NDIS Parents looking for more work now that their children were better supported Parents wanting to share their experience moving from advocate for family to advocate for their communities Optimism for the future ECIA 12th Biennial National Conference, Choices that matter: ECI in a new era …

Where to next? Training materials and insights from pilot program are complete and ready for distribution. Noah’s Shoalhaven - Parent Room Advocate Training second program happening as we speak. CareSouth Illawarra – parents and carers encourage to stay in touch through ongoing information sessions.    Ongoing research being undertaken and learnings from this pilot program being incorporated into other research. ECIA 12th Biennial National Conference, Choices that matter: ECI in a new era …

The Team University of Wollongong Dr Amy Conley Wright Senior Lecturer, Social Work Dr Claire Manning Research Fellow, AHSRI Dr Jane Warren Lecturer, Early Years Dr Amanda Webster Senior Lecturer, School of Education Noah’s Shoalhaven & CareSouth Ginger O’Brien CEO Noah’s Shoalhaven Debra Jefferis Family Information Support Worker and Family Disability Support Program Co-ordinator (FDSP) Noah’s Shoalhaven Rhonda Miller Project Manager Disability Service CareSouth ECIA 12th Biennial National Conference, Choices that matter: ECI in a new era …

References Alper, S., Schloss, P., & Schloss, C. (1995). Families of children with disabilities in elementary and middle school: Advocacy models and strategies. Exceptional Children, 62(3), 261-270. Harry, B., Allen, N. & McLaughlin, M. (1995). Communication versus compliance: African- American parents’ involvement in special education. Exceptional Children, 61, 364–377. Finfgeld-Connett, D. (2005). Clarification of social support. Journal of Nursing Scholarship, 37(1), 4–9. Nachshen, & Jamieson, J., (2000) Advocacy, stress and quality of life in parents of children with developmental difficulties. Developmental Disabilities Bulletin, 28(1), 39-55. Shilling et al. (2013). Peer support for parents of children with chronic disabling conditions: a systematic review of quantitative and qualitative studies. Developmental Medicine and Child Neurology. Weiss, B.D. & Coyne, C. (1997). Communicating with patients who cannot read. The NewEngland Journal of Medicine, 337, 272–274. ECIA 12th Biennial National Conference, Choices that matter: ECI in a new era …