1. 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, Melbourne, Australia

2. 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 …

3. 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 …

4. 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 …

5. 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 …

6. 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 …

7. 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 …

8. 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 …

9. 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 …

10. 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 …

11. 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 …

12. 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 …

13. 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 …

14. 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),
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),
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 …