International Voices on Childhood-onset Disabilities –
Congress President on the Road

The EACD-IAACD congress is a meeting including all professions around childhood-onset disabilities as well as the children and people with lived experience, caregivers and their stakeholders.

The congress president Rainer Blank has visited a number of countries world-wide onsite in order to hear the international voices on childhood-onset disabilities. In more than 70 video clips (more than 150 summarized interviews), these voices will successively be presented at the website during the next 18 months.

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Please note: All videos on this page are linked to YouTube. By clicking the link, you will be redirected to YouTube.

Parents

Two parents of children with severe disabilities and their individual stories and wishes

Jody, father of a child without speech describes how the introduction of eye gaze technology had an overwhelming effect on interaction and relationships in the family. Sheila talks about the griefing process and the role of the environment for integration and inclusion in everyday life.

Parents

Two parents with amazing and emotional stories and life span issues of their children

Brian and Lauren tell about the their life span experience from the first shock of diagnosis, multiple surgeries and at presence the transition to adulthood and their hope for independence as much as possible.

Parents

Less barriers and more appreciation – “that we are all in for each other“

A 27 year old person with severe cerebral palsy talks about everyday life and how he used the Covid-Crisis in a positive way. His mother, talks about the nasty barriers in everyday life but also the different perception of “handicap“.

Professionals

USA: discrepancies and challenges of health care for children with disabilities

Wade Schrader, orthopedic surgeon and Clair Schrader, occupational therapist talk about the huge differences of health care and support among US states.

VIP

Wade Shrader, President AACPDM American Academy of Childhood-onset Disability and Developmental Medicine

Wade Shrader, President of the AACPDM 2023/2024, appreciates the interdisciplinary concept of the AACPDM and the networking with the International Alliance of Academies of Childhood-onset Disability IAACD.

Professionals

Slovenia

Inclusive settings need knowledge and coaching from specialized centers

Katjuscha advises employers to include effectively individuals in their work places. Inclusion needs special knowledge from specialized centers.

Parents

Slovenia

Early diagnosis of a rare genetic disorder and challenges with health providers and education

Tanja describes the situation of her son with an early diagnosed rare disorders called Kleefstra syndrome and how the health providers and the educational system could be more helpful and more supportive.

Parents

Slovenia

Rare genetic disorders: the chance to get a “diagnosis”

Erika talks about the burden of unknown diagnosis and how new genetic methods are helpful. A great challenge is to find specialists to support caregivers.

Professionals

Slovenia

Inclusive education for life and ways to promote inclusive culture

Dr. Matej Rovsek, headmaster of Janeza Levca Center in Ljubljana/Slovenia, a well-known inclusive and special school as well as vocational skills training center introduces the educational system for individuals with intellectual disabilities in Slovenia.

Professionals

Educational challenges of Egyptian families raising a child with disability – an overview

Evelyn an experienced kindergarten teacher and coach is summarizing a number of attitudes, challenges and needs of families raising children with disabilities in Egypt.

Parents

Loss of a child with severe disability – a heart-breaking story of a sole mother

A mother talks about her profound grief as she has lost her daughter who had a very severe disability. Her touching story shows the intensive and strong relationship of mothers with children having complex handicaps.

Professionals

Kindergarden teachers on services and attitudes of families having children with disabilities

Two educators talk about how families in Egypt deal with the disabilities of their children and about the service providers they are looking for. Often, the amount of money to be paid is regarded as a “sign“ of good quality by parents.

Parents

Stories of children with disabilities, everyday challenges and the role of the family

2 mothers of children describe their situation with their children having severe intellectual and also behavioural challenges. The first mother talks also about the role of the family. The second mother, a sole mother, how she became grateful for the small everyday improvements of her child.

Professionals

Physiotherapy in Egypt – development and current issues

Prof. Faten Abdul Azeim describes the development of physiotherapy in Egypt from the first chair in the Arabic world until today. She talks about the the current issues and challenges for the future.

Professionals

From science towards general awareness

To neuroscientists from Australia and Netherlands talk about basic issues concerning neurodevelopmental disorders, e.g. Developmental Coordination disorders DCD. According to Peter Wilson dividing into categories "ill-not ill" have to be left towards a dimensional thinking of weak and strong abilities.

Professionals

Service providers for users and coaching for mothers in Australia

Annette Davis, manager of SCOPE, one of the largest organisation in Australia which provides therapy, training and housing of people with lived experiences talks about the social care system, the therapeutic and educational work and the issue and challenges of inclusion in Australia.

Parents

Facing severe disabilities from early on versus severe breakdown after normal childhood

Joan, mother of Nicholas, a 28yrs young man with complex disabilities, gives some insights about her experiences and finally how she developed an organisation of more than 1000 members, for parents and people with lived experiences similar to her son.

VIP

Medical and social care in “lucky” Australia

Christine Imms, Australia, talks about the Australian System and how it supports people with lived experiences and their caretakers. She analyzes strengths and challenges.

VIP

IAACD – vision and work

Christine Imms, President of the IAACD, summarizes the vision and work of the International Alliance of Academies of Childhood-onset Disability.

Professionals

Gaela – Understanding, care and therapy for disability in New Zealand

Gaela Kilgour, physiotherapist, talks about the cultural, social and health care system in NZL and its strengths and challenges recently. She describes the educational system with respect to inclusion and special education and the training and work of therapists and other health professionals helping people with child disability.

Parents

New Zealand

Meg – Challenges from birth to puberty and Emma – Learning from her son and fighting for him

After normal birth, Meg’s daughter ⟮13 years⟯ had a stroke first undiagnosed during her first weeks of age. Meg, a paediatric nurse talks about the process of diagnosis, the support and the challenges at school and during teenager age.

Parents

Dan and Amy – From perception of handicap to gratefulness for abilities

Their child ⟮10 years⟯ has a severe physical handicap since birth; further she experienced deafness after birth. While the physical constraints persisted she has come to normal hearing making her able to speak.