Deaf and Hard of Hearing Clinic provides care, support for families
Ben Middelkamp May 21, 2021
Since 2018, the Deaf and Hard of Hearing Clinic, located at Riley Hospital for Children at IU Health, has tried to simplify that struggle for families. The multidisciplinary clinic provides medical, social and educational care to children—all in one spot for one afternoon each month.
Experts in otolaryngology, audiology, speech-language, medical genetics, pediatric psychology, developmental pediatrics, education, and a parent advocate—from Indiana University School of Medicine, IU Health and multiple state organizations—meet once a month with children who are deaf or hard of hearing, addressing the necessary care and support services for each patient and their families.
May is Better Hearing and Speech Month. According to the American Academy of Audiology, hearing loss affects one in eight people over the age of 12 in the United States—approximately 37.5 million Americans. For children who are deaf or hard of hearing, early intervention at a young age is imperative so they can start down the path to better development of speech, language and social skills.
“With a developing child, both with early diagnosis and the potential overlap of hearing loss with other issues, the clinic really helps families to get to multiple providers at a single time that really reduces a lot of stress,” said Charles Yates, MD, associate professor in the Department of Otolaryngology—Head and Neck Surgery at IU School of Medicine.
Yates serves as co-director of the clinic with Lindsey Shine, AuD, CCC-A, diagnostic and hearing aid audiologist at IU Health. The clinic was first created in February 2018 under the direction of Ryan Mitchell, MD, PhD, who spent four years as a pediatric otolaryngologist and assistant professor of otolaryngology—head and neck surgery at IU School of Medicine until moving to Rocky Mountain Children’s Hospital in Denver, Colorado, this past February.
The afternoon clinic begins and ends with a meeting of the providers and consultants on how to best coordinate care for the children visiting. Each clinic typically averages about four or five children who are referred to Riley from across Indiana.
Shine said most children who are deaf or hard of hearing also have developmental and social deficits, so creating a space for specialists of different disciplines gives the patient a well-rounded experience. It also allows providers to start services sooner for children with early diagnoses of hearing loss, Yates said, potentially better preparing the child for more success as they age.
“The feedback we get from families is that while it can feel overwhelming to take in all the information presented through the clinic that day, they feel very grateful for a single appointment to address the multifaceted needs of their child or children,” Shine said. “It’s beneficial for us as providers when we can convey similar messages to the families in different ways and really drive home how we can all help achieve the best outcomes for these kids.”
The multidisciplinary aspect of the clinic not only benefits kids and families, but it allows clinicians to learn more about each other’s disciplines, Yates said.
Yates said he’s appreciated learning more about how genetics relates to hearing loss through the work of Theodore Wilson, MD, assistant professor of clinical medical and molecular genetics, and also about motor and social development progression in children who are deaf or hard of hearing from Jordan Huskins, MD, assistant professor of clinical pediatrics.
William Kronenberger, PhD, professor of psychiatry, serves as the pediatric psychologist in the Deaf and Hard of Hearing Clinic. He’s been involved in the clinic since day one in 2018 and brings an extensive background in executive functioning and cognitive science. He’s also been researching cochlear implant outcomes in children at the DeVault Otologic Research Laboratory, part of the Department of Otolaryngology, for close to two decades.
While it may appear to some that deafness and hard of hearing is mostly an ear issue, Kronenberger brings a perspective to the ear’s intrinsic connection to the brain. Many children who are deaf or hard of hearing, he said, manage it well, but others need help socially and cognitively.
Kronenberger brings his years of research into neurocognitive functioning, family functioning and psychosocial adjustment and applies it to the work being done at the clinic. Specifically, he uses the Learning, Executive, and Attention Functioning scale (LEAF), which he developed in a research study—and is now used internationally—when he meets with children at the clinic.
“The way we know how to measure things and how to intervene is that we do research to better understand how kids with deafness and hearing loss adjust,” Kronenberger said.
Of the nearly 130 children who have received care at the clinic over the past three years, most have been below the age of 10. Some of the families of these children might be figuring next steps for schooling or have a child with a cochlear implant or individualized education plan at their school, and they’re in need of more resources and ongoing care for their children.
Families connect with an education consultant from the Center for Deaf and Hard of Hearing Education and a family support representative with Indiana Hands & Voices.
Mariana Barquet, Guide By Your Side and ASTra program coordinator for Indiana Hands & Voices, provides parent-to-parent support, helping families navigate the clinic process before the clinic and the day of. She learns about their home dynamics, uncovering any barriers they may have and empowers them to make the best decision for their child.
“Family involvement is crucial for the purpose of a child receiving any sort of medical treatment or any type of intervention,” Barquet said. “We want to make sure the family feels welcome at the clinic. We want to make sure the family feels supported and valued from their perspective.”
Barquet, who has a 9-year-old deaf child, said she wishes the clinic would’ve existed years ago, saying that it would’ve saved a lot of time if she had access to a comprehensive clinic like the one offered at Riley for her son. It typically takes families about two years to meet with several specialists to work with a child who’s deaf or hard of hearing, Barquet said.“This is a valuable resource for parents in Indiana,” Barquet said. “Just to see this happening, it makes me so happy because I know how it looks when that doesn’t happen. The outcomes can be from day to night.”