2026 GPODHH Parent Leadership Symposium

ABSTRACTS

Presentation 1: How We Got Here: Partnerships, purpose, and the path forward

Presented by:  Ann Porter (Australia) and Snigdha Sarkar (India); Daniel Holzinger (Austria) and Daiva Müllegger-Trečiokaite (Austria)

This introductory session sets the stage for the Symposium by sharing how this convening came to be and the shared commitment that underpins it. Attendees will gain a foundational understanding of GPODHH, its role within the global setting, and its collaborative relationship with the FCEI. FCEI representatives will also share its roots and its commitment to family-centered early intervention. The session will highlight the purpose behind the partnership, the needs and opportunities that brought the coalitions together, and how this work supports families, professionals, and systems moving forward.

Presentation 2: Building Your Skills in Leadership: An overview

Presented by: Terri Patterson (USA) 

Effective leadership for people who support families of children who are Deaf or Hard of Hearing includes three connected areas: leading yourself, leading others, and leading within systems. These areas help build self-awareness, clear communication, strong teamwork, and the ability to work within — and improve — the larger systems that serve families. This session will show how developing these three areas creates confident leaders who strengthen family engagement, improve organizational work, and help drive positive system change.

Presentation 3: Finding Your Voice: A personal journey into leadership

Presented by: Snigdha Sarkar (India)

In this session, Snigdha Sarkar of GPODHH shares her own path into leadership—examining the moments that shaped her, the strengths she discovered along the way, and the areas where growth was necessary. Through honest reflection and lived experience, she invites participants to consider how self-awareness, values, and adaptability play a critical role in effective leadership. Attendees will leave with practical insights for recognizing their own leadership strengths and identifying opportunities for continued growth.

Presentation 4:  Creating Parent Support Groups in Uganda: Working together to support parents

Presented by: Joyce  Sserunjogi Nalugya  (Uganda) 

During the FCEI conference, Joyce will be sharing about the work they do in Uganda to support families. During this session at our GPODHH Symposium, she will share how their team works together, solves differences, and keeps focused on serving families. Regardless of where you live in the world, parent groups can support families effectively when leaders work together. In Uganda, parent-to-parent mentorship has improved the lives of deaf children and their families to support their children's education more confidently and effectively. 

Presentation 5:  Families at the Heart: 28 years of growing together with deaf children. The Spanish experience

Presented by:   Ana Barrera (Spain)

For nearly three decades, the Spanish Confederation of families of deaf people - FIAPAS has supported families of deaf persons across Spain through a program that combines professional guidance with peer support from parents. Each year, over 2,000 families benefit from this approach, which nurtures confidence, connection, and leadership within families. In this presentation, we will share experiences and lessons learned, offering insights into how collaborative support can strengthen families everywhere.

Presentation 6: Understanding the similarities and differences between volunteer and paid parent-to-parent support work

Presented by: Daiva Müllegger-Treciokaite (Austria) and Sari Paloposki (Finland)

Parents support one another in many ways—individually, as volunteers in parent organizations, or as employees in parent associations or clinics. Voluntary parent-to-parent work is often driven by personal motivation, lived experience, and a desire to help others. It allows parents to share their own ideas and build strong peer connections. However, volunteering also comes with challenges: limited time, lack of financial resources, and sometimes insufficient recognition.While research suggests that volunteering can bring happiness, receiving financial compensation in a field where parents have both expertise and confidence can offer different kinds of opportunities. Working in a clinic allows to develop specialized competencies in the field. Although it involves strict confidentiality regulations, but on the other hand it enables us to reach families who are otherwise be unlikely to access the parent organisation or other parents. Navigating between professionals and parents, focusing to work independently and impartially is often challenging. Even though many believe that parent-to-parent support should be financially compensated, most parents are still volunteers. From a European perspective, we will discuss the advantages and challenges between voluntary and employed parent-to-parent support work. 

Presentation 7: Systems Leadership in Action: The PAGAVA Experience

Presented by: Rima Sitavičienė (Lithuania)

Since 1994, the Lithuanian Association PAGAVA has shown how parents—working together with purpose and heart—can become strong leaders in the systems that shape the lives of Deaf and Hard of Hearing (D/HH) children and their families. What began as a small group of parent organizations has grown into a national movement that connects hearing and Deaf parents from all regions and regardless of their child‘s mode of communication (spoken language or sign language) and whether their child uses hearing aids, cochlear implants or do not use any technical aids. All are united by one goal: creating better opportunities for their children. Over the years, PAGAVA learned that real change happens when parents are included in important decisions. By building trusted relationships with the Ministries of Health, Education, and Social Security, PAGAVA has helped guide national work on newborn hearing screening, early intervention, hearing-aid support, social services, and inclusive education. Through these partnerships—and through seminars PAGAVA provides for teachers—the voices and real experiences of families are included in the systems that serve them. PAGAVA’s leadership has also grown through learning from other parent and D/HH organizations across Europe and the United States, and through active participation in FEPEDA and GPODHH. Each partnership brings new ideas, shared understanding, and a feeling of belonging to a global community of families. These include the Swedish DHB; Ireland DeafHear; National Deaf Children's Society (UK); Hands & Voices (USA) Finnish Association KLVL); a short overview on what they have learned from these organizations will be included. This presentation celebrates the power of parent leadership and how connection, compassion, and courage can influence systems and open doors for D/HH children and their families.

Presentation 8:  From Passion to Practice: Uniting Parent Leaders around the priorities that matter 

Presented by Debbie Talbot (UK) 

This interactive training equips parent leaders with practical tools to align stakeholders behind one high impact priority, analyse system levers (policy, practice, partnerships, data), and create focused plans and simple measures. Through short demos, peer case huddles, and a hands-on Priority to Impact Canvas, participants practise facilitation techniques they can reuse with their own groups. Leave with templates, prompts and a lightweight monitoring approach to sustain momentum beyond the workshop.