The Pittsburgh Hearing Institute has received a $1,500,000 grant from the Edith L. Trees Charitable Trust to advance hearing health care for individuals with intellectual and developmental disabilities. The grant will disseminate $500,000 per year for three years.
Children and adults with intellectual and developmental disabilities (IDD) bear a disproportionate and largely preventable burden of hearing loss. Among individuals with Down syndrome, the most common IDD syndrome, up to 75% experience some degree of hearing loss, and more than half have recurrent ear infections. Unique anatomical features — including narrow ear canals prone to cerumen accumulation, small middle-ear spaces, and Eustachian tube dysfunction resulting from palate muscle differences can result in permanent hearing loss by adulthood if left unmanaged.
Yet this population is consistently among the most underserved in American healthcare. Hearing loss compounds the communication, learning, and social challenges that already define life with IDD, and the consequences of untreated or undertreated hearing loss in this population are severe: delayed language development, impaired cognitive growth, social isolation, reduced independence, and diminished quality of life across the entire lifespan.
The Pittsburgh Hearing Institute is uniquely positioned to change this. The newly established, 22,000-square-foot center co-locating world-class hearing scientists, clinician-researchers, and community-facing clinical programs is building one of the nation’s first truly integrated hearing health centers with an explicit mission to serve those most often left behind.
The grant will fund a comprehensive, patient-centered hearing health program for individuals with IDD. The program integrates navigated clinical care, a lifespan audiology platform, mobile community outreach, a community partner panel led by individuals with IDD and their caregivers, and a translational research program that directs the Pittsburgh Hearing Institute’s existing, actively funded science toward IDD — the population most in need and least represented in current research.
This program is co-led by Peter Santa Maria, MD, PhD, Vice Chair of Clinical and Translational Research and Division Chief of Otology, Neurotology and Skull Base Surgery at the University of Pittsburgh Department of Otolaryngology, and Catherine V. Palmer, PhD, Chair of the Department of Communication Science and Disorders at the University of Pittsburgh and Director of Audiology and Hearing Aids at UPMC and UPMC Children’s Hospital.
“We are excited to have the opportunity to work directly with individuals with intellectual disabilities and their supporters to develop pathways to hearing care that will positively impact access,” Dr. Palmer said.