Families: Who cares for them?

Families have an important role in supporting family members living with a childhood onset disability.
Do we fully understand the needs of families and how we can support them? Each family’s own lived experience is unique. This year’s Listening and Sharing sessions will be shared widely so we can: celebrate their roles, explore their joys and challenges and understand what they need and want. Join us to listen and share stories from family members from around the world and promote a community who care for families.

In 2024, the GPEC committee of IAACD will host the 24 hour Global Listening and Sharing session “Families: Who cares for them?” Please listen to the thoughts of some of our global families. Look forward to you joining us on the 29th of November 2024.

Please share our video widely and let us know if you would like to host a session or be part of a session. Email Gaela Kilgour craigaela@gmail.com We will post the global timetable closer to the date.

Listen to Tomek from Poland and Natasha from Wales to hear their thoughts on what our Listening and Sharing session for 2024 means to them as parents of children with disabilities and what they would like to be included in sessions. Join as many sites as you wish around the globe on the 29th of November to hear views on this topic.

Listen to Marijo from Mexico to hear her thoughts on what our Listening and Sharing session for 2024 means to them as parents of children with disabilities and what they would like to be included in sessions. Join as many sites as you wish around the globe on the 29th of November to hear views on this topic.

24 hour virtual Listening and Sharing sessions 2024

Enjoy recorded sessions where health workers and families are sharing their experiences, challenges and innovations. These sessions are recorded on 29th November 2024 every hour around the globe.

Argentina 2024

Families: Who Cares for Them?

Summary

On November 29th the GPEC committee of the International Alliance of Children’s Disability Academies organized the Global Level Session “Listening and Sharing”.
In Argentina, the INICyE team held a virtual meeting via google meet, at 6 pm (Argentina time).
We had the honorable presence of Nélida Taira from EDDIM Association (Province of Chubut) and Diego Benevento from Gabito Foundation (Province of Buenos Aires).
It was aimed at families and people with disabilities, health teams and the general public. It had an excellent repercussion and participation.
Some questions guided the meeting:

  • What does the word care mean to you accompaniment “the one who cares”?
  • What experiences do you consider have been useful for your own care and could also be useful for families who are just starting out?
  • Which ones would you have liked or would have been useful to know at the time?
  • What roles of other people (health care team, friends, relatives, NGOs) do you think have been facilitators or barriers in these processes?
  • As a reflection: What do you think needs to be improved in terms of public policies or concrete examples that can facilitate the accompaniment of families?

Brazil 2024

Families: Who Cares for Them?

Summary

The RB-PC, in partnership with the IAACD, had the honor of hosting the Listening and Sharing Session 2024, an inclusive online event that brought together professionals, families, and people with disabilities. This year, the central theme was “Families: Who Cares for Them?“, with discussions held over 24 hours across different parts of the world.

The panel featured special guests Tuca Munhoz, Thais Sinibaldi, and Luma Viana, under the moderation of Professors Rejane Vale and Paula Chagas.

During the discussions, crucial questions about family care and well-being were raised:

  • Physical and mental care: The importance of families finding time and resources to care for their own health.
  • Exchange and empowerment: How interaction among families can foster representation and mutual strength.
  • Access to knowledge: The need for practical and applicable information for daily family life.
  • Active listening: The role of professionals in creating spaces for families to express their emotions and needs, as well as discuss therapeutic practices.

The event was a valuable opportunity for exchanging experiences and reflecting on the challenges and needs of families, strengthening the support network and promoting the empowerment of all participants.

Canada 2024

ENVISAGE-Families Program: ‘EARLY INTERVENTION FOR PARENTS”

Summary

Dr. Peter Rosenbaum and Elizabeth Chambers hosted an insightful session titled “ENVISAGE-Families Program: ‘EARLY INTERVENTION FOR PARENTS’”. The session, held from 7pm to 8pm UK time (2pm to 3pm EST), was facilitated by Dr. Selamenesh Tsige Legas, IAACD executive member and Developmental Paediatrician.
In this illuminating video, Dr. Peter Rosenbaum, Professor of Paediatrics at McMaster University and Co-Founder of CanChild Centre for Childhood Disability Research, showcased the ENVISAGE program’s family-centered approach and its impact on supporting families. Elizabeth Chambers, a parent expert and pioneer participant of the ENVISAGE program, shared her personal experiences. She discussed how the program has benefited her family and her role as a parent leader in the expanded program, providing valuable insights into the practical applications of the program’s teachings. Conducted in English, the session highlighted the collaborative efforts to support families through early intervention and the transformative potential of the ENVISAGE-Families program and ignited national level discussion!!! After watching the video, For more information, please contact us at envisage@mcmaster.ca

Canada 2024

Navigating Rare Childhood Disabilities: Empowering Caregivers Through Shared Decision Making and Decision Coaching

Summary

Children’s Hospital at London Health Sciences Center (LHSC) hosted an informative session titled “Navigating Rare Childhood Disabilities: Empowering Caregivers Through Shared Decision Making and Decision Coaching”. The session, held from 5pm to 6pm UK time (12pm to 1pm EST), was facilitated by Dr. Selamenesh Tsige Legas, Developmental Pediatrician at LHSC.
Dr Jacqueline Ogilvie, Developmental pediatrician at LHSC and Medical director at TVCC showcased the amazing FAMILY – CENTERED CARE INITIATIVES at the Children’s Hospital, followed by a panel discussion on the shared decision-making model that empowers families of children with rare diagnoses.
The panelists were Bonnie Wooten, Shared Decision-Making Coach; two families with lived experience; and Dr. Craig Campbell, Pediatric Neurologist and Chair of Pediatrics at LHSC. The families shared their experiences, the support they received, and the challenges they faced in navigating rare childhood disabilities.
Conducted in English, the session provided valuable insights into the importance of shared decision-making and decision coaching in empowering caregivers. After watching the video, For more information, please contact bonnie.wooten@lhsc.on. caslegas@uwo.ca

China 2024

Caring for Caregivers

Summary

Sponsored by IAACD Global Education Committee, undertaken by the Children’s Rehabilitation Committee of Chinese Rehabilitation Medical Association and the Rehabilitation Committee of Cerebral palsy and Developmental Disabilities of China Rehabilitation Association for Disabled Persons, co-organized by the Rehabilitation School of Jiamusi University. The 2024 Sharing Session of the Global Education Committee of the International Academic Alliance for Children with Disabilities (IAACD) was successfully held online on November 29, 2024. The sharing meeting was attended by more than 490 international and domestic children rehabilitation colleagues, parents and caregivers of children with special needs, such as the IAACD Global Education Committee, the Children’s Rehabilitation Professional Committee of the Chinese Rehabilitation Association, and the Rehabilitation Professional Committee of cerebral palsy and Developmental Disabilities of the China Disabled Persons Rehabilitation Association.

IAACD holds a global sharing meeting every year, and the Children’s Rehabilitation Professional Committee of the Chinese Association of Rehabilitation Medicine, as a member state, has participated in this important international children’s rehabilitation activity for the fourth consecutive year. The theme of this year’s global Sharing conference is “Caring for Caregivers”. Two parents are invited to share their successful experience in the process of caring for children, and two child rehabilitation experts are invited to share their work experience in giving guidance and advice to children’s parents.

The sharing session was presided over by Prof. Jiang Zhimei, director of International Academic Alliance for Children with Disabilities, member of IAACD Global Education Committee, Chairman of Child Rehabilitation Professional Committee of Chinese Rehabilitation Medical Association, Vice President and Director of Jiamusi University Medical Department. The guest speakers are Ms. Ma, mother of “Sweet Girl”, Mr. Wang, father of “Zeze”, Ms. Zheng Yujun, child rehabilitation expert, and Professor Wu De, Director of Pediatric Neurological Rehabilitation Center of the First Affiliated Hospital of Anhui Medical University.

The care of special needs children is a long process, every caregiver has experienced anxiety and tension, how do they come out of the entanglement? How can I find the right way to enjoy life while my child recovers? The sharing of Ms. Ma and Mr. Wang’s successful experience makes parents more aware that while taking care of children with special needs, they can also find appropriate ways to improve themselves, so that we can find a more relaxed way to “accompany, inclusive and equal” to treat children, and try to create a growth environment full of happiness, love and freedom, thus shaping the character of children’s kindness, confidence and innocence. Ms. Zheng Yujun, a child rehabilitation expert, shared with us how to provide guidance and advice to parents at different times, as professionals, how to better take care of parents’ emotions and give parents more motivation. Professor Wu emphasized the concept of “family” as the center of children’s rehabilitation work, shared how to give guidance to parents of older children with special needs, and how to make parents more relaxed in the rehabilitation process of older children. The sharing of the speakers has brought us many new ideas and inspiration, so that we can continue to explore and practice in the future work, to provide more comprehensive, professional and humanized services for children with special needs and their families, and jointly help their healthy growth and happy life.

Colombia 2024

El cuidado de las familias desde las palabras F – El Comité de rehabilitación

Summary

Nuestra sesión fue realizada desde El Comité de Rehabilitación, en Medellín – Colombia. El tema tratado fue “el cuidado de las familias desde las palabras F. Inicialmente tuvimos la exposición de algunas ideas de Carolina Estrada, trabajadora social, Jorge Mario Ortiz, terapeuta ocupacional y Carlos Quintero, médico de rehabilitación. Luego tuvimos un espacio de participación para los asistentes, Estuvimos conectadas 33 personas. Nos alegró mucho la participación y hacer parte de esta iniciativa global.

Eastern Africa 2024

Families’ Journeys: The Support They Wish They Had

The Eastern African Academies of Childhood Disabilities

Summary

The Eastern Africa Academy of Childhood Disability, EAACD hosted an enlightening panel discussion titled “Families’ Journeys: The Support They Wish They Had”. Facilitated by Dr. Selamenesh Tsige Legas, Developmental Pediatrician and EAACD’s communication chair, the session featured heartfelt stories from three mothers and a sibling from Kenya, Tanzania, and Uganda.

The panelists included Pamela Tiiti Kagonge, founder and CEO of Tunaweza Children’s Centre in Uganda; Elly Kitaly, founder of Chadron’s Hope Foundation in Tanzania; and Dr. Sylvia Moraa Akinsiku, founder of Andy Speaks 4 Special Needs Persons Africa in Kenya, who presented with her son, Daniel Musyoka. Conducted in English, the discussion provided valuable insights into the journeys of these families and the support they wish they had received. It was a powerful session that highlighted the resilience and advocacy of these families, offering inspiration and valuable lessons for all attendees.

For more information, please contact eaacdgroup@gmail.com slegas@uwo.ca

Georgia 2024

Family and Care for Them

Summary

English:

On November 29, 2024, an international online conference on listening and sharing was held, with Georgia participating for several years now. This year’s theme was “Family and Care for Them.” Families of individuals with disabilities presented their experiences, shared their challenges and needs, and highlighted existing issues. An engaging discussion took place between medical specialists from various fields and parents.

Georgian:

2024 წლის 29 ნოემბერს ჩატარდა მოსმენისა და გაზიარების საერთაშორისო ონლაინ კონფერენცია, რომელშიც უკვე რამოდენიმე წელია მონაწილებს საქართველო, წლევანდელი თემა იყო – ” ოჯახი და მათზე ზრუნვა”. შეზღუდული შესაძლებლობის მქონე ოჯახებმა წარმოადგინეს პრეზენტაციები, მათ გაგვიზიარეს საკუთარი გამოცდილება, არსებული გამოწვევები და საჭიროებები. გაიმართა საინტერესო დისკუსია სამედიცინო სფეროს სხვადასხვა სპეციალისტებსა და მშობლებს შორის.

India 2024

Families: Who cares for them?

Summary

The panel discussion on the theme FAMILIES WHO CARES FOR THEM? focused support systems, inclusive living, and independent living skills. Participants, including professionals from various fields, explored ways to empower children with disabilities and address their needs, emphasizing the importance of family and community support. Prof. Jayanti Pujari Chaired the panel discussion. Panelists are Kavitha Saboo,Parent,Nashik, Aparna Mehatta,Parent,Hyderabad, Prof Pushpa Sinha,Haryana, Dr. Nita Diwan, Parent Professional, Kolkatta

Indonesia 2024

Families: Who cares for them?

Summary

Celebrate the International Day of Persons with Disabilities with WKCP (Wahana Keluarga Cerebral Palsy) and IAACD (International Alliance Academies of Childhood Disability) in an engaging storytelling session. Parents from across Indonesia will share their powerful journeys of love, resilience, and parenting. Meet inspiring voices: Ms. Mustika (Papua), Ms. Devi (Banjarmasin), and Ms. Efri (Padang), parents of children with cerebral palsy. Joining them are Ms. Anna (Makassar), a mother of a child with autism, and Ms. Dwi (Yogyakarta), a hearing-impaired parent who embraces her role with courage. The discussion will be moderated by Ibu Reny from WKCP, ensuring a warm and meaningful exchange. This heartfelt webinar, with 22 participants, celebrates the strength of families and the importance of community. Don’t miss it!

Ireland 2024

Supporting Parents to Support their Children: The Importance of the Attachment Relationship

Summary

The Irish presentation was entitled ‘Supporting Parents to Support their Children: The Importance of the Attachment Relationship’. The presentation highlighted the fundamental importance of the early parent-child attachment relationship in supporting the developmental progress of the child, including the child with a disability. In fact, in many ways, a focus on the attachment relationship becomes even more important where the child has a disability, because of the additional stresses, strains and threats associated with disability and how these can interrupt the parent-child relationship. The presentation used a case study to highlight the value of working with the parent on their own childhood attachment experiences as a way of better understanding how they parent their disabled child.

Lithuania 2024

Families: who cares for them?

Summary 

Families caring for people with disabilities face many challenges and joys every day. The 2024 Listening and Sharing Session explored the theme “Families: who cares for them?” and provided a deeper insight into the experiences of parents, their daily routines, and the challenges of caring for family members with disabilities. The key message of the session was “Parental Strength – Children’s Future”, underlining that the strength of families is a key factor in creating an inclusive and supportive environment for all members of society. Parents play a key role in building the self-confidence and coping skills of people with disabilities. The session highlighted their strengths: patience, understanding, and support. The importance of job opportunities to increase inclusion and change societal attitudes towards disability was also highlighted. The session shared small victories that strengthened family togetherness and discussed the importance of the Parents’ Academy, which provides emotional support and helps families feel stronger. Volunteering was identified as an important empowerment tool, increasing self-confidence, motivation, and autonomy. The main conclusion of the session was that support and inclusion are essential to ensure that families and their members with disabilities are able to overcome challenges and achieve their goals. A strong, united family provides the necessary support and can also adapt and find solutions that work for all family members. The stronger the family, the more likely the person with a disability is to feel valued and participate fully in society.

Santrauka 

Šeimos, kurios rūpinasi asmenimis su negalia, kasdien susiduria su įvairiais iššūkiais ir džiaugsmais. 2024 metų „Klausymosi ir dalijimosi sesijoje“ gvildenta tema „Šeimos: kas jomis rūpinasi?“ suteikė galimybę giliau pažvelgti į tėvų patirtis, jų kasdienybę ir iššūkius rūpinantis šeimos nariais su negalia. Sesijos pagrindinė mintis – „Tėvų stiprybė – vaikų ateitis“, pabrėžianti, kad šeimų stiprybė yra esminis veiksnys, padedantis kurti įtraukiančią ir palaikančią aplinką visiems visuomenės nariams.

Tėvai atlieka esminį vaidmenį, ugdydami asmenų su negalia pasitikėjimą savimi ir gebėjimą įveikti sunkumus. Sesijoje buvo akcentuota jų stiprybė – kantrybė, supratingumas ir palaikymas. Taip pat buvo išryškinta darbo galimybių svarba, siekiant didinti įtrauktį ir keisti visuomenės požiūrį į negalią.

Sesijos metu dalintasi mažomis pergalėmis, stiprinančiomis šeimų bendrystę, bei aptarta „Tėvų akademijos“ reikšmė, kuri užtikrina emocinį palaikymą ir padeda šeimoms

Poland 2024

Family in Circles of Support

Summary

English:

“Family in Circles of Support” was the title of the Polish session organized as part of the annual IAACD Listening and Sharing Sessions. This year’s event focused on families of individuals with disabilities. In Poland, mothers and sisters of adults with disabilities gathered to share how disability has impacted their lives, how they cope with challenges, what their needs are, and whether those needs are being met.

Prof. Agnieszka Żyta presented research findings from studies conducted among parents supported through the Circles of Support model and discussed the impact of this approach on the well-being of family members of individuals with disabilities.

Participants of the meeting explored whether the Circles of Support model could address the needs and concerns expressed by families of individuals with disabilities.

Polish:

“Rodzina w Kręgach Wsparcia” to tytuł polskiej sesji zorganizowanej w ramach corocznych spotkań,  IAACD Listening and Sharing Sessions. Tematem tegorocznego wydarzenia były rodziny osób z niepełnosprawnościami. W Polsce spotkały się mamy i siostry dorosłych osób z niepełnosprawnościami, które opowiadały o tym, jaki wpływ miała niepełnosprawność na ich życie, jak radzą sobie z wyzwaniami, jakie mają potrzeby i jak te potrzeby są lub nie są zaspakajane.

Prof. Agnieszka Żyta zaprezentowała wyniki badań, które przeprowadziła wśród rodziców objętych wparciem w ramach modelu Kręgów Wsparcia i przedstawiła wpływ pracy modelem na dobrostan członków rodzin osób z niepełnosprawnościami.

Uczestnicy spotkania szukali odpowiedzi na pytanie, czy model Kręgów Wsparcia może być odpowiedzią na potrzeby i lęki wyrażane przez rodziny osób z niepełnosprawnościami.

Romania 2024

Families: Who cares for them?

Summary

Parents shared their reflections of having a child with a disability produced by rare diseases in Romania and the challenges that they have to face every day. The session followed by open chat and interaction with the audience. We had 28 people attend with wonderful discussion and learnings from our parents.

Slovenia 2024

Are Sports and Other After-School Activities Enough to Support Families with Special Needs?

Summary

During the round table, parents and professionals discussed the challenges and needs of families with children with special needs. The key findings were as follows:

  1. Need for personal time:
    Parents of children with special needs are often overwhelmed and lack time for themselves, leading to stress and burnout. Daily stressful situations, including their children’s behavioral outbursts, significantly impact their mental well-being.
  2. Support through camps and activities:
    • Parents expressed a desire for multi-day camps where their children could engage in activities and gain new experiences.
    • The Paralympic Committee already organizes camps twice a year for children with physical disabilities and autism, but the demand exceeds the supply.
    • Besides sports, parents suggested introducing activities focused on relaxation and emotional regulation, such as yoga, dance, music workshops, and meditation.
  3. Accessibility of information:
    • Parents often spend excessive time searching for information about available options for their children (e.g., associations, clubs, healthcare, and social services). Establishing a centralized information hub or guidance resource would significantly ease access to these essential services.
  4. Importance of physical activity and school engagement:
    • Parents believe that schools do not provide enough opportunities for physical activity for children with special needs. Active breaks during the school day were suggested as a way to incorporate more movement.
  5. Funding of after-school activities:
    • After-school activities are vital for the quality of life of families with children with special needs. These should be accessible to all and fully funded by the state, as current programs are often fee-based, placing a financial strain on families.
  6. Early intervention:
    • Early intervention, involving the whole family, is crucial for the successful development of children with special needs. However, the healthcare system currently lacks systematic support and timely information for families.
  7. Focus on personal progress:
    • For individuals with disabilities, personal progress and quality of life should take precedence over high-level achievements. This perspective is often overlooked by decision-makers, affecting the funding of programs aimed at people with special needs.
  8. Systemic barriers:
    • There are significant challenges due to a lack of staff and facilities for conducting activities, particularly swimming pools.
    • Parents often feel unsupported and left to navigate the system alone, exacerbated by insufficient guidance from healthcare providers.

The discussion concluded that there is a pressing need to strengthen support systems for families with children with special needs, improve access to information and funding, and expand the range of activities that support the entire family.

Switzerland 2024

Families: Who cares for them?

Summary

Our session focused on the evolving needs of families raising a child with a disability. Together with three invited families—a grandmother and two mothers—we explored three main topics:

  1. Building Connections
    We discussed how families establish connections across various areas of daily life, including their private lives, creche, kindergarten, schools, and healthcare systems. A positive, supportive approach was emphasized, highlighting the importance of accessible local support systems and how families and professionals can support each other efficiently.
  2. Engagement & Involvement
    Families shared their experiences of becoming actively involved in their child’s care and development. As children grow up, caregiving demands evolve, requiring families to adapt and manage their energy effectively. The discussion underlined the importance of self-care for all family members and the need to identify areas where adaptations may be necessary.
  3. Relationships
    The session highlighted diverse families’ experiences, even before having a child with special needs, and how these shape families’ perspectives. Strong relationships—within families, with professionals, and with the wider community—were seen as critical to providing sustainable support. We also reflected on the role of clinicians in modeling positive, sensitive interactions that benefit both the child and the family.

The openness of all participants gave us a deep understanding of their daily lives, and the sensitive care families and caregivers need. This session reinforced the importance of empathy, support, and collaboration in fostering resilience and well-being for children and their families in need.

South Africa 2024

Nurturing the Family Unit

Summary

In our introductory video, you’ll meet Nikki Smit, a swimming teacher from South Africa, who is deeply passionate about water safety and supporting individuals with disabilities. Her dedication and work highlight the importance of inclusive safety measures and recreational activities.
Joining Nikki is Charnay Habelgaarn, a physiotherapist who brings a unique perspective as both a professional and a mother of a child with disabilities. Her story underscores the challenges and triumphs faced by families navigating the world of disability support.
Additionally, we are privileged to have Dr. Tracey Nupen and Mari Stevens from Paedspal, an organization dedicated to providing palliative care and support to children with life-limiting and life-threatening conditions, and their families. They will share valuable insights and resources available to South African families, emphasizing the importance of accessible and comprehensive care.
This webinar is more than just a discussion—it’s a call to action to recognize and address the diverse challenges faced by families with disabilities. By sharing experiences and strategies, we aim to build a more inclusive, understanding, and supportive global community.

Sri Lanka 2024

Sri Lankan Families Supporting Children with Disabilities

Summary

Under the theme “Sri Lankan Families Supporting Children with Disabilities,” the session has provided a platform for families to share their personal stories and lived experiences, offering an intimate glimpse into the realities of raising and supporting children with disabilities in Sri Lanka. These reflections will delve into the challenges faced by families, such as navigating societal stigma, accessing appropriate healthcare and educational resources, and managing the emotional and financial demands of caregiving. At the same time, the session demonstrated the strengths and resilience displayed by these families, highlighting innovative coping strategies, cultural influences, and community support systems that have contributed to their journeys.

The session has featured two inspiring speakers: Mrs Taniya Arsakulasuriya, a mother of a child with dystonic cerebral palsy, and Ms Chamarie Ranasinghe, a mother of a son with Autism Spectrum Disorder. Their accounts will bring to light the diverse yet interconnected experiences of families supporting children with disabilities, illustrating both the unique challenges of their respective conditions and the universal themes of love, determination, and advocacy. By fostering a space for honest dialogue, the session seeks to emphasize the importance of shared learning—where families, professionals, and policymakers can exchange knowledge—and the need for collective action to enhance care services, promote inclusion, and create a more supportive environment for children with disabilities and their families. This collaborative effort aims to inspire meaningful change at both the local and global levels.

United Kingdom – Wales 2024

Families: Who Cares for Them?

Summary

Chaired by Heather Holgate, Cerebral Palsy Cymru hosted this IAACD GPEC session for Wales UK.

Gopi, Glenys and Kirsty, two parents, and a sibling twin, of individuals living with cerebral palsy discuss and share their very personal experiences as family members and what was important to them at different times in their journeys.

They explored:

  • how does it feel living in a family where a member has a childhood disability?
  • Do carers need care? Is this something carers are even aware of?
  • What support is needed? And who should provide this support? The importance of practical help and support is noted and having a network of people you can rely on.
  • The importance of still being able to develop and thrive as a family.
  • Personal insights and experiences are shared and explored. The importance of being able to talk to someone, as part of support.
  • A reminder that the language professionals use with parents and families is important as it stays with families for a lifetime.
  • A reminder to ask families what help they would like and at more than one point in time

Discussion followed by questions and discussion with the audience.

United States of America 2024

Families: Who Cares for Them?

Seattle

Summary

This Listening and Sharing session was delivered in Seattle, Washington, USA in English. Our theme was “Families: Who Cares for Them”.
With opened ended discussion question per topic, parents, adult siblings shared their reflections of supports to their families as varying ages. We had 5 people attend with wonderful discussion and sharing among the family members who participated.