Moving to adulthood: Finding and navigating support pathways

On the 7th of November 2025, the GPEC committee of the IAACD was hosting our Global Listening and Sharing sessions. This is a 24 hour event where we hear the voices, experiences and new knowledge from people throughout the world. Our topic this year is “Moving into adulthood: Finding and navigating support pathways.”

The following recordings from people with lived experience of disability, advocates, service providers and health professionals highlight the importance of this topic and offer ideas of what may be captured in our sessions:

  • Tomasz Grabowski from Poland,
  • Dorica Dan from Romania,
  • Agnies M van Eeghan from the Netherlands and
  • Emma Livingstone from the UK.

24 hour virtual Listening and Sharing sessions 2025

Enjoy recorded sessions where health workers and families are sharing their experiences, challenges and innovations. These sessions are recorded on 7th November 2025 every hour around the globe.

Brazil 2025

Moving to adulthood: Finding and navigating support pathways

Summary

In Instituto Nossa Casa’s Listening and Sharing session in Brazil, all guests have cerebral palsy and discussed the importance of friendships for adulthood and social inclusion.

Canada 2025

From Pediatric to Adult Care: A Guided Journey with LHSC’s Transitions in Care Team

As part of IAACD’s Global Listening and Sharing Series on November 07, 2025, this session, moderated by Dr. Selamenesh Tsige Legas, featured the innovative Transitions in Care Program at Children’s Hospital, London Health Sciences Centre (LHSC). The discussion highlighted how structured, patient-centered transition planning can transform the experience for youth with complex medical needs and their families.

Panelists included Lea Ann Alosious and Nicole Dendekker, Transition Navigators; Dr. Caitlin Cassidy, Physiatrist and lead of the Transitional and Lifelong Care Program; Dr. Janys Lim, Developmental Pediatrician; and Darlene Durand, a parent partner sharing her lived experience. Together, they explored practical strategies, systemic challenges, and the emotional realities of moving from pediatric to adult care.

The session closed with a call to action: start transition planning early, build strong partnerships between pediatric and adult providers, and center families in every step of the process.

Watch the full recording below. Here is helpful transition resources compiled by the team in Canada : RESOURCES SHARED TRANSITION TO ADULTHOOD WEBINAR

Canada 2025

Transition to Adulthood: Finding and Navigating Support Pathways

As part of IAACD’s 24-hour Global Listening and Sharing Series on November 07 2025, this session, moderated by Dr. Selamenesh Tsige Legas, brought together voices from clinical practice and lived experience to explore one of the most critical challenges in disability care: the transition from pediatric to adult services.

The discussion featured Dr. Liz Grier, Chair of the Physicians of Ontario for NeuroDevelopmental Advocacy (PONDA), alongside parent advocates Sara Pot and Brenda Agnew. Together, they shared insights on navigating fragmented systems, advocating for continuity of care, and building collaborative models that center family voices.

This session underscored a shared vision: transition should not be a goodbye, but a hello to adulthood supported by coordinated, compassionate care.

Watch the full recording below. Here is helpful transition resources compiled by the team in Canada : RESOURCES SHARED TRANSITION TO ADULTHOOD WEBINAR

Eastern Africa 2025

Moving into adulthood: Finding and navigating support pathways.

The Eastern African Academies of Childhood Disabilities

Summary

The Eastern Africa Academy of Childhood Disability listening and sharing session drew participants from the region for an inclusive dialogue on disability rights and inclusion. Youth leaders with lived experience (Autism spectrum disorder with dyslexia, Cerebral palsy, Individual with congenital limb difference) led the engagement on challenges faced, job-market accessibility, societal acceptance, and a caregiver who is a clinician by profession brought in the importance of family support and government involvement.

Ethiopia 2025

From Silence to Solutions: Navigating the Transition to Adulthood for Children with Disabilities in Ethiopia

Summary

As part of IAACD’s 24-hour Global Listening and Sharing Sessions on November 07, 2025, this powerful panel from Ethiopia explored the urgent and often overlooked challenges faced by youth with disabilities as they age out of pediatric care. Led by Dr. Selamenesh Tsige Legas, Ethiopia’s first developmental pediatrician, the session brought together leading pediatric neurologists and child health advocates from Mekelle University, Dr. Abraha Gebreegziabher , Addis Ababa University, Dr. Behaylu Yibe and Dr. Atsede Teklehaimanot  and St. Paul’s Millennium Medical College, Dr. Kalkidan Tesfaye. 

Panelists shared real-life stories, systemic barriers, and emerging models of care, highlighting the absence of formal transition services and the resilience of families navigating these gaps. The discussion emphasized the need for policy reform, subspecialty training, inclusive education, and international collaboration to build sustainable pathways to adulthood.

The session closed with a call to action: to start small, build on existing strengths, and leverage Ethiopia’s growing community of passionate professionals and global partners to make transition care a reality.

Watch the full recording below. 

Georgia 2025

Moving into adulthood: Finding and navigating support pathways

Summary

We have 53 participants. There were 4 presentations for two different rehab centers:

Hungary 2025

Moving into adulthood: Finding and navigating support pathways

Summary

During the Hungarian session, we looked at the transition of people with disabilities from childhood to adulthood from several different perspectives: that of a doctor, presented by Judit C. Sagi MD, PhD a parent, dr Maria Orkeny, pediatric doctor and fostermother of a child with intellectual disability, member of the Tudoer Assocciation and Anna Szabo, a teacher. The meeting was moderated by Eszter Szabo, a founder of the Disorder of the Corpus Callosum Foundation.
The session was conducted in Hungarian.

India 2025

Moving into adulthood: Finding and navigating support pathways

Summary

Our Speakers: Prof. Jayanti Pujari, Mrs. Nandita Saran, Mr.Pratik Aggarwal, Mrs. Geeta Kaul, and Mr. Jalaj Nagar,

The session featured panelists sharing their expertise and experiences in special education, rehabilitation, and advocacy, discussing challenges faced by adolescents with disabilities and the importance of developing independent living skills. The discussion covered various aspects including inclusive education, assistive technology, and community-based support systems, emphasizing the need for better policies and practical implementation to ensure a smooth transition into adulthood.

Ireland 2025

Moving into adulthood: Finding and navigating support pathways

Summary

For the Irish session, our speakers Éabha Wall and Adam Sharpe shared their lived experiences of transitioning into adulthood with cerebral palsy, highlighting both the challenges and opportunities along the way. Our discussion explored how knowledge, community, and interdependence can help young people move from being passengers in their healthcare to pilots of their own lives.

Japan 2025

Moving into adulthood: Finding and navigating support pathways

Summary

In the Japan session, individuals with lived experience and their families joined a presentation on support for independent living in children with tracheostomy. In the subsequent discussion involving individuals and multiple professionals, transition challenges and the importance of planning support together with the individuals were emphasized.

New Zealand 2025

Moving into adulthood: Finding and navigating support pathways

Summary

For the New Zealand session, our speaker was Amy Hogan from the Cerebral Palsy Society of NZ. Amy shared practical information provided to her from families and people with lived experience on their experiences of moving to adult health services. The discussion included strategies and ideas from health professionals that they were starting to use in practice.

South Africa 2025

Moving into adulthood: Finding and navigating support pathways.

Summary

For the South Africa session, our speakers Leryke Kleynhans, National Training Coordinator at Autism South Africa; Zekwande Mathenjwa, founder and president of the Zekwande Mathenjwa Foundation; and Nicolette Ripepi, founder and Executive Director of Autism Connect NPO, focused on training, advocacy, and community-led supports for autistic and nonspeaking autistic individuals. Our discussion included practical strategies for inclusive occupational therapy, advocacy approaches to amplify nonspeaking voices across Africa, and building safe, sustainable services for autistic people and their families.

Spain 2025

Moving into adulthood: Finding and navigating support pathways.

Summary

For the Spain session, our speaker Nina Izquierdo focused on her journey as a young woman with CP, sharing her past, present, and imagining her future. Our discussion included identity, autonomy, friendships, education, work, and how “promoting authenticity, breaking stigmas” can inspire families, professionals, and communities to truly listen to young people with CP.

Switzerland 2025

Moving into adulthood: Finding and navigating support pathways

Summary

The Swiss group held a listening and sharing session with two families to discuss key questions around transitioning into adulthood for young people with special needs:

  • When is the right time to start?
  • What do children and parents need and want?
  • How can professionals prepare and coordinate the transition?
  • What might we be missing?

Five quotes from Tabea Hosche – filmmaker, journalist, and mother of a child with special needs – framed the conversation:

  1. Driving with visibility
  2. Not a sprint, but an ultramarathon
  3. You can only search for something if you know it exists
  4. Release the pressure
  5. Go your own way and be self-determined

Together with the families, several important themes emerged:

  • A need for more flexibility and individualized support, which takes time.
  • The transition period (ages 16–20) is overwhelming when too many changes happen at once — school, training, adult medicine.
  • Continuity and long-term relationships are highly valued.
  • Parents often act as the central coordinators, managing everything — a role that leaves many feeling overburdened.
  • Families meet new teams but often lose contact soon after.
  • Many do not know what to expect or what their child’s future needs will be.
  • There is interest in creating parent or transition groups for mutual support and better communication.

The session was deeply moving. It became clear that families need more continuous and tailored support.
Transition can only succeed if everyone is involved — families, professionals, and society as a whole:

“Transition only works together – it takes all of us.”

The Netherlands 2025

Moving into adulthood: Finding and navigating support pathways

Summary

For the Netherlands session hosted by AnneLoes van Staa, our speakers Femke Vennik and Agnies van Eeghen focused on the transition from children’s to adults’ healthcare for youth with physical and intellectual disabilities. Our discussion included a moving account of a parent with a young woman with a rare genetic condition about the challenges of moving to adulthood and adult care. We presented results of our recent research into patient and professional experiences (STEP UP project) and of the new ERN ITHACA Guideline ‘Transition from children’s to adults’ healthcare for youth with (genetic) intellectual disabilities’ (2025).

Turkey 2025

Moving into adulthood: Finding and navigating support pathways

Summary

For Turkiye session, our speakers Esra Ersoy and Arzu Yılmaz focused on self experiences of an adult with disability and approaces to adults with childhood-onset disability in adulthood.

Our discussion included social, politics, participation barriars and ways to overcome in adulthood of childhood onset disabilities.

United States of America – NY 2025

Moving into adulthood: Finding and navigating support pathways

Summary

In New York City, the Weinberg Family Cerebral Palsy Center’s Minnelly Vasquez, LCSW, introduced Erikson’s theory of psychosocial development, and led a panel of adults with CP exploring three key life stages.