From Surviving to Thriving: Creating Global Equity in Supports and Services for Childhood Developmental Disability

Via Zoom

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From Surviving to Thriving: Creating Global Equity in Supports and Services for Childhood Developmental Disability

Via Zoom

The United Nations’ 2030 Sustainable Development Goals have shifted the focus of support for children with developmental disabilities from mere survival to enabling them to thrive. This webinar will describe work underway to promote global equity in the field of childhood developmental disabilities, building off joint efforts by the World Health Organization and UNICEF to develop a comprehensive approach to providing care and support for children with developmental delays and disabilities and their families. Panel discussions will explore research and advocacy efforts related to three childhood disabilities: cerebral palsy, autism spectrum disorder and hearing loss. Through these discussions, including researchers and self-advocates, we aim to outline practices that ensure equitable access to high quality, person/family-centered supports that improve the quality of life for individuals with disability.

Speakers

Antony Duttine is a physiotherapist from the UK. He graduated from the University of Southampton in 2001. After working in the UK National Health Service for a number of years, Antony began a career in international development, applying his physiotherapy skills and experience in the Global South. He worked for the Ministry of Health and Social Services in Namibia in the Omusati Region between 2006 and 2008, then as Humanity and Inclusion's Technical Cooridnator in Afghanistan. Following this he transitioned to the technical unit at HI's headquarters, focussing on rehabilitation advocacy in the global health agenda, presenting and participating in global health events such as the World Health Assesmbly and the UN High Level Meeting on noncommunicable diseases. Since Sept 2017, Antony has been the Regional Advisor on Disability and Rehabilitation at the Pan American Health Organization/World Health Organization. In this role he supports the countries and territories of the Americas to strengthen their rehabilitation and assistive technology services and build inclusive health services for people with disabilities. Antony holds a Masters in Development Management and is doctoral student in Public Health at the London School of Hygiene and Tropical Medicine.

Hans Forssberg is Professor in Neuroscience at Karolinska Institutet and Consultant in Neuropaediatrics at Astrid Lindgren Children’s Hospital in Stockholm, Sweden. He is one of the founders of the International Alliance of Academies of Childhood Disability (IAACD; together with Bob Armstrong and Diane Damiano) and has been its first president. He is past chairman of the European Academy of Childhood Disability; past dean and past vice president of Karolinska Institutet; and past member of the Nobel Committee for Physiology or Medicine. His research has focused on children with neurodevelopmental disorders; from translational research on mechanisms underlying motor and cognitive dysfunctions, to clinical research aiming at developing new methods for assessment and intervention. During recent years, he has shifted focus to research on global health of children with disabilities, in particular in low- and middle-income countries (LMIC). He has published around 250 original research articles and is one of the internationally most cited researchers in neurodevelopmental disorders (>30 000 citations; h-index=81; Google Scholar). He is presently leading a UNICEF project developing, implementing and evaluating global recommendations for early identification and intervention for children with developmental delay and disability, particularly in LMIC.

Diane Damiano is an American biomedical scientist and a Senior (tenured) Investigator in the Intramural Research Program at the National Institutes of Health in Bethesda, Maryland. Her clinical background is in pediatric physical therapy, and she is a Catherine Worthingham Fellow of the American Physical Therapy Association, the highest honor in the profession. Dr. Damiano has 150 publications and directs a research laboratory that focuses on novel neurorehabilitation strategies to assess and promote motor functioning in infants and children with cerebral palsy including mobile brain imaging and robotic device development. She is a co-founder of the International Alliance of Academies of Childhood Disability (IAACD); with Hans Forssberg and Bob Armstrong, and has served as President of the Clinical Gait and Movement Analysis Society and the American Academy for Cerebral Palsy and Developmental Medicine.

Lauren Franz is a child and adolescent psychiatrist and an assistant professor of Psychiatry and Global Health at Duke University. As a global mental health clinical researcher, Dr Franz focuses on improving access to evidence-based treatment for neurodevelopmental disorders, including autism spectrum disorders in sub-Saharan Africa and other low resource settings. She received an early career development award from the National Institutes of Mental Health to adapt and implement the parent- Early Start Denver Model intervention for children with autism and their families in South Africa. Dr Franz is a certified Early Start Denver Model trainer, therapist, and caregiver coach.

Sarah Brandsen completed her PhD in physics at Duke University and is currently a postdoc with Duke's department of Electrical and Computer Engineering. Sarah is an autistic self-advocate and over the past year has been involved in a number of initiatives regarding autism inclusion in healthcare. She also works with Duke's Neurodiversity Connections and the Duke Disability Alliance to promote autism inclusion on campus, with a special interest in making Duke more accessible to students with higher support needs. 

Danai Kasambira Fannin, PhD, CCC-SLP, is an Associate Professor in the Department of Communication Sciences and Disorders at North Carolina Central University in Durham, NC. She is a licensed Speech-Language Pathologist with research interests in cultural and socioeconomic effects on communicative functions, appropriate intervention and evaluation for culturally and linguistically diverse people, interdisciplinary intervention for toddlers and preschoolers with developmental disabilities, and autism services for young children and families in underserved, rural areas.

Susan Emmett, MD, MPH is an otolaryngologist and public health expert who develops evidence-based solutions to address preventable hearing loss. She studies novel pathways for prevention and applies digital innovations such as mobile screening and telemedicine to extend access to care to remote communities. Dr. Emmett serves as Associate Professor of Surgery and Global Health at Duke University in Durham, NC, USA. She consults for the World Health Organization, serves as Co-Chair of Innovations in Service Delivery for the Lancet Commission on Hearing Loss, and is the Founder and Director of the Global Hearing Loss Evaluation, Advocacy, and Research (HEAR) Collaborative. She was named a TED Fellow in 2017.

Dr. Ivette Cejas is an Associate Professor and Director of Family Support Services at the Children’s Hearing Program at the University of Miami. She is a Licensed Psychologist in the state of Florida. She is a well-known researcher in the area of pediatric hearing loss and cochlear implantation. She is on the Board of Directors for AG Bell.

Michelle Ben-Aviv is a mom of two amazing children, Sam and Charlie. Sam is a 7.5 year old boy that was born profoundly deaf. Thanks to cochlear implants, Sam is thriving in all aspects of life. Michelle and Sam work together to help others with hearing loss both through lobbying efforts and philanthropic initiatives. In addition, Michelle serves as the Vice Chair of the Lehrman Community Day School. She is also the Associate Treasurer of the Greater Miami Jewish Federation.

Michel Landry is a professor in the Department of Orthopaedic Surgery at Duke University in Durham, North Carolina (USA). Before this, Dr. Landry spent seven years as Division Chief of the Duke Doctor of Physical Therapy (DPT) Division, where he successfully led an important rebuilding of the program that has now grown into one of the top physical therapy programs in the United States. Before receiving his doctoral degree, he held clinical and senior management positions within the private rehabilitation sector in Ontario (Canada), and within international humanitarian aid and development agencies. Dr. Landry is a health policy and health services researcher, where his area of study is the interface between available supply (financial and human resources) and increasing demand for rehabilitation and health services across the continuum of care. He is a past-president of the Canadian Physiotherapy Association and a former Career Scientist at the Ontario Ministry of Health and Long-Term Care (MOHLTC). He lectures widely on policy and political dynamics of rehabilitation services and is a provocative advocate for the moral, ethical and economic necessity to ensure accessible and affordable rehabilitation services across the continuum of high, middle and low-income countries. Dr. Landry is currently completing his Executive Masters of Business Administration (MBA) at Duke University's Fuqua School of Business, where he is also participating in the Health Sector Management Certificate (HSM).

Deja Barber is a 27-year-old female from Raleigh NC. She was diagnosed with spastic cerebral palsy at the age of two. Throughout her life, Ms. Barber has done many things to not let her cerebral palsy stop her. She has played many sports including bowling, wheelchair basketball, track & field, and she has been on the USA Boccia Team. In the area of advocacy, Deja was crowned Ms. Wheelchair NC 2017. Currently Deja is obtaining a double Masters in School & Rehabilitation Counseling from NCA&T State University.

Stacey Dusing is the Sykes Family Chair of Pediatric Physical Therapy, Health and Development, an Associate Professor and Director of Pediatric Research in the Division of Biokinesiology and Physical Therapy at the University of Southern California where she directs the Motor Development Laboratory. She is a board certified pediatric physical therapy specialist and a Catherine Worthingham Fellow of the American Physical Therapy Association. with over 25 years of clinical and research experience working with infants and children. Her research focuses on postural control, reaching, early exploration and interventions to advance development in infants with or at high risk of having developmental disabilities. Her mission is to improve practice through innovative and evidence-based care in various health care environment.