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

Hyuna is a person with lived experience. She found a job as barrista in a protected environment, the Happy Bakery Café at the Purme Foundation. She talks about she was getting interest in this job.

Jeon Sejin, Psychologist at Purme hospital talks about the assessment and treatment of psychological difficulties, the prejudices to look for psychological help but also the limited treatment capacity, esp. the small number of centers with integrated treatment concepts.

Jeaongah, a mother of a ten year old boy with autism, found out early at the age of 18months that her son was already “different”. However, she thought to wait and talk.

Bae, Social worker, talks about her role at the Purme center. Mainly her works are counselling children and families, organizing support for medical expenses or assistive devies, providing programs and education while serving as mediators.

Hyejin mother of two children, a 13-year-old son with ADHD and a 10-year-old girl with autism. The mother sees increased heart and increased movements during pregnancy as early signs of her son’s ADHD.

Hyo Jung, Occupational therapist, talks about the work of her center including comprehensive rehabilitation for in- and outpatients, age 0 to 18 years. At Purme center, training of everyday activities plays an important role.

Ji-ae, mother of a 4 year old daughter talks about the painful process of acceptance after a normal birth and an unclear loss of consciousness of her child at the first months of life.

Yi Hong, Vice President of a remarkable Hospital and Center specialized in children with disabilities is presenting the work and structure of this institution financed by the Purme Foundation.

He Chuan is a parent of a child with autism and he is social worker at a social care institution in Chengdu. His talks about traveling around in China in order to find the best treatment methods for his child and to get a diagnosis.

The rehabilitation physician and of the local rehabilitation center in Guangzhou, Wu Meifen, talks about the work and financing of rehabilitation centers in China. He describes how the rehabilitation center increasingly transforms towards a family center serving as a day care unit and as a hospital.

Dr. Li Zhibin, senior doctor at one of the largest pediatric centers in China talks about the development of the center and the interdisciplinary team in the context of a comprehensive rehabilitation concept. She emphasizes the increasing role of psychosocial comorbidities in China.

Two genetic and neurological scientists Li Na and Hu-Hao Cougar are working on newest genetic methods to identify and understand causes of cerebral palsy and other developmental disorders like autism.

Mrs. Wong, mother of Yang-yang, a 10year old girl with cerebral palsy, sitting in a wheelchair tells how difficult it was to accept this and how important her family was to support her.
During early childhood, Yang-yang needed regular support for nutrition.

Dr. Wang Fui, the medical director of the children’s rehabilitation hospital, focusses in his talk on children with intellectual disorders and how quiet parents are often dealing with.

Professor Song Hujie is the CEO of the largest children hospital in China located in Xian. It is also a Center for Traditional Chinese Medicine but meanwhile has introduce a great variety of assessment and treatment methods well-known in modern medicine.

Professor Xiaojie Li is the former president of the Chinese Association of Rehabilitation Medicine: Pediatric Rehabilitation Committee CARM-PRC. She is Medical Director of Dep. of Rehabilitation Medicine at Univ. of Beijing.

Professor Zhimei Jiang, current president of the Chinese Association of Rehabilitation Medicine - Pediatric Rehabilitation Committee CARM-PRC - summarizes the development of paediatric rehabilitation in China and especially at her hospital and center in Beijing.

Jolanta Wierzba and Joanna Jablonska-Brudlo talk about the development of the Dep. of Rehabilitation Medicine at the Medical University of Gdansk, which served as a model for many other units and later as well also Centers of rare disorders in Poland.

Michail, Head of Department of Early Intervention at the Polish Association for People with Intellectual Disabilities PSONI talks about interdisciplinary and current physiotherapeutic concepts in Poland and how professional education is linked to the local university like e.g. in Gdansk.

Jacob, father of a girl with a Down-Syndrome talks about how he was struggling when the diagnosis was ade and how this dramatically changed after he cared about her a lot during her heart surgery. His strong relationship now brought him to engage in a foundation – even full-time – in order to serve children like his daughter.

Kacper, a Head Master of a non-public school for children with intellectual disabilities gives an overview about the work load and the challenges of special teachers especially in non-public special schools in Poland. Further, he talks about his successful research work in a network of ten countries developing software applications and tools for people with special needs.

Kasia Swieczkowska, mother of a child with a disability who died unexpectedly some years ago tells her story about her child, her family – especially how they dealt with death of their child.

Olaf Kraus de Camargo, co-director of CanChild Institute at McMaster University in Hamilton, Canada, focusses on the complexity of the responsibilities in politics and administration and the consequences for childhood disability management. Jennifer Zwicker, associate professor from the School of Public Policy at Calgary University is working for policy strategies moving from the medical more to the social concept of childhood disability.

Rachel’s son Luke received an early diagnosis of the life-limiting rare disorder with multiple issues. His mother was intensively looking for help and solutions during the restricted life span ending in palliative care and it challenges in a country like Canada.

Two occupational therapists talk about the interventions movement disorders:
Patricia Mortenson from BC Children's Hospital in Vancouver tells about the breakthroughs of gene therapy in neuromuscular disorders and what it means for long-term therapeutic concepts.

Prokwash tells the story of her 11 year old daughter with a 22q11-syndrome who was diagnosed early. She describes the overwhelming amount of information but also the great support of doctors and her church community.

Andrea Shugar, Genetic Counsellor at Sick Kids Hospital in Toronto talks about the challenges to reach children with developmental issues in remote regions in Canada. Jacob Vorstman is child psychiatrist and researcher in the field of genetics in disorders like autism, schizophrenia and a rare syndrome 22q11.

Jean is the mother of a 19 year daughter with a rare genetic condition called GAND which causes delays in speech, cognition and gross and fine motor skills. Jean speak about the benefits of having in multidisciplinary therapies integrated into the school environment, the challenges caused when a child must switch to a new healthcare model at age 18 and the need for additional social, financial and mental health supports for family caregivers.

Peter Rosenbaum, a famous developmental pediatrician in the field of childhood disability focuses on two issues related to childhood-onset disability: First, he highlights the risks of “predicting the course of disability by probabilities“ which may be completely wrong in individual cases.

Darcy Fehlings, former president of the AACPDM, is one of the founding members of the IAACD. As director of one of the largest hospitals and institutions of rehabilitation in Canada, she talks about the health system in relation to childhood-onset disability in Ontario / Canada.

Rachel Byrne, Managing Director and Ila Eckhoff, Board Director of the CP Foundation USA report on their activities and visions. Main areas of the CP Foundation are research, knowledge and effective advocacy for people with disabilities.

An occupational therapist, an expert in language and speech therapy and a neuropsychologist talk about a broad spectrum of issues covering accessibility of therapy, multidisciplinarity, continuity, socioeconomic aspects in the US.

An occupational therapist, an expert in language and speech therapy and a neuropsychologist talk about a broad spectrum of issues covering accessibility of therapy, multidisciplinarity, continuity, socioeconomic aspects in the US.

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.

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.

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“.

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

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.

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

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

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

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

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.

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.

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.