A doctor told Michelle Ben-Aviv not to worry about it. Her second born, a son named Sam, failed a hearing test as a newborn, but Sam’s pediatrician assured Ben-Aviv she could wait for a retest months later since her family had no history of hearing loss.
She listened to her instinct instead.
Ben-Aviv’s journey for answers led her to Ivette Cejas, a licensed psychologist and an associate professor and director of family support services at the Children’s Hearing Program at the University of Miami. Test results confirmed what Ben-Aviv described as “our worst fears” for her family.”
“Our son was profoundly deaf,” Ben-Aviv said during a Duke Global Health Institute webinar on Sept. 29. “The only thing we knew is that we were committed to supporting him and caring for him, to give him the best outcome and an optimal opportunity that life has to offer.”
Ben-Aviv shared her family’s story as part of an event on childhood disability. Titled “From Surviving to Thriving,” the webinar stressed the need for doctors, families, policymakers and researchers to work together to support early diagnosis and intervention for children with developmental disabilities.
Panels focused on autism, hearing loss and cerebral palsy, but the discussions touched on issues common to many types of disability, especially for patients and caregivers in low- and middle-income countries, where supports and services are often inadequate. Worldwide, more than 1 billion people have some form of disability that could benefit from rehabilitation services.
Watch the full discussion below or scroll down for a summary of comments.
ABOUT THE SPEAKERS
Antony Duttine is a physiotherapist and regional advisor on Disability and Rehabilitation for the World Health Organization.
Diane Damiano is the chief of the functional and applied biomechanics section at the National Institutes of Health Clinical Center. She is also a physical therapist to children with cerebral palsy.
Hans Forssberg is a professor of neuroscience at Karolinska Institute in Stockholm, Sweden. He’s also a founder and first president of the International Alliance of Academies of Childhood Disability.
Lauren Franz is an assistant professor of psychiatry and global health and faculty in the Duke Center for Autism and Brain Development.
Sarah Brandsen is a postdoctoral researcher with Duke’s Electrical and Computer Engineering Department. She’s also an autistic self-advocate who works on a number of initiatives regarding autism inclusion in healthcare.
Danai Kasambira Fannin is an associate professor in North Carolina Central University’s Department of Communication Sciences and Disorders. She’s also a licensed speech-language pathologist.
Susan Emmett is an associate professor of surgery and global health at Duke’s School of Medicine. Her work includes applying digital innovations such as mobile screening and telemedicine to extend care access to remote communities.
Ivette Cejas is an associate professor and director of family support services at the University of Miami’s Children’s Hearing Program.
Michelle Ben-Aviv is a mom of two living in Florida. Her son, 7-year-old Sam, was born profoundly deaf. The pair work together in lobbying efforts and philanthropic initiatives to help others living with hearing loss.
Michel Landry is a professor in Duke’s Orthopaedic Surgery Department. Landry is also a health policy and health services researcher.
Deja Barber is a cerebral palsy self-advocate from Raleigh. She was diagnosed with the condition at age 2 and since, participates in sports, which earned her the North Carolina’s Ms. Wheelchair in 2017.
Stacey Dusing is an associate professor and director of pediatric research in the Division of Biokinesiology and Physical Therapy at the University of Southern California where she also serves as the Sykes Family Chair of Pediatric Physical Therapy, Health and Development. She also directs the university’s Motor Development Laboratory.
“The issue of child disability is a multisectoral issue…it cross cuts from health, education, to family support, to social services, to justice and all other areas as well. How do we connect those areas together? And that’s something we’re working close on with WHO (the World Health Organization) and other agencies to make sure there is a seamless transition between sectors.”
“How important that early engagement is going to be in terms of changing the curve of the future. Personally, it’s important to look at what we can do as health providers, or what we can do as family members, but let me take an attempt here to change that equation. It really needs to be what society needs to do to ensure that an environment is hospitable for everyone, despite or [regardless] of ability.”
“We don’t want to go in and fix children with disabilities to make them normal. That is absolutely not what we want to do. The ultimate goal for children with disabilities is to have full participation in everyday life – to be in school, to be playing with friends, to be included in their families.”
“Until now, much autism research has been conducted with white upper middle-income families who live in North America and Europe, and this is problematic for many reasons…it only provides a fragment of the story of autism. Autism exists across race, age, socioeconomic status and nationality.”
Danai Kasambira Fannin:
“Some of our standardized assessments do penalize culturally and linguistically diverse students, resulting in many of them inaccurately qualifying for special education services; this is not the whole story… We need to be more surgical in our research design so we look at specific classifications and that culturally and linguistically diverse children do not end up under identified as autistic.”
On the need for comprehensive testing for hearing loss:
“There’s a lot of overlap between hearing loss and some of those other neurodevelopmental disorders… It’s estimated approximately 40 percent of children with sensorineural hearing loss also have an additional disability.”
“For these children, access to a multidisciplinary team is really critical in order to provide family-centered care that’s going to help address all the children’s needs.”
On ensuring equal access to early identification and intervention:
“If you’re a provider, if you’re an educator, a speech therapist, going around your community, sometimes [Cejas and her team] do free hearing screenings and consultations around schools. It’s really connecting these hearing healthcare providers with other lower income communities, making sure we’re available and accessible ourselves.”
“Hopefully, this is a starting point for those attending this webinar to go out to their communities, talk to other countries, and if we all do our part, that’s where we can make the biggest impact.”
On why discussions of cerebral palsy should include the person living with the disability:
“Focus shouldn’t always be on medical. Focus on an inclusive childhood. Please let them know they have a disability. Can they explain what they need an what they have to a total group of strangers if they had to? Because as I reached adulthood, that becomes, ‘What am I going to do with my life, and know how to adapt to it. And this is why it goes back to childhood so when they go into interviews, they know what their challenges are.”
“It’s all about having a supportive system for a person with CP (cerebral palsy).”
“Include the person or the child right from the beginning of the conversation. Let them actualize and learn about the impairments they might have.”
Summing Up the Need for Early Intervention Strategies
“Intervention matters when it starts. Waiting until a child is two years of age to start intervention is not going to help them in the long term. We have to thin a little bit about how this compares to the adult literature.”
“If your grandmother had a stroke and someone said, ‘We’re going to wait two years to start intervention,' that would be considered criminal.”