State newborn-hearing program reports large referral and follow-up gap; advocates urge earlier vision/hearing screening
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Summary
EHDI officials told the committee that roughly 1,500 newborn referrals occur annually and about 300 infants are lost to follow-up; speakers called for better reporting, rural diagnostic access, and stronger early-identification links to Part C services.
BISMARCK — North Dakota—s Early Hearing Detection and Intervention (EHDI) program reported Feb. 19 that newborn hearing screenings continue to identify a substantial referral caseload each year but that follow-up and reporting gaps hinder diagnosis and early intervention.
Jerusha Olthoff, program director for North Dakota EHDI, said the program is federally funded (HRSA/CDC) and follows the 1-3-6 benchmarks — screen by 1 month, diagnostic confirmation by 3 months, and enrollment in early intervention by 6 months. She told the Human Services interim committee that the program typically records about 1,500 newborn referrals annually and a loss-to-follow-up/documentation cohort that hovers near 300 cases.
—We send outreach letters and make outreach calls, but inconsistent or delayed reporting from some birthing facilities and geographic barriers to pediatric diagnostic audiology mean we still have hundreds of families who do not complete recommended follow-up,— Olthoff said.
Dr. Lacey Long, project director for the North Dakota Dual Sensory Project at Minot State University, said the state—s census of children with combined hearing-and-vision loss remains small (41 children identified in the 2025 snapshot) and likely undercounts infants, with zero children registered in the 0–3 age band in the most recent count.
Committee members and presenters discussed multiple remedies: clearer reporting mandates and protocols, better coordination between EHDI and Part C/infant-development services, and expanded family navigation. Witnesses also flagged rural access problems: some families must travel two hours for pediatric diagnostic audiology.
The program—s CDC surveillance cooperative agreement is scheduled to end June 30, 2026; staff said grant continuity and state reporting improvements will be necessary to maintain system monitoring and reduce loss-to-follow-up.
What lawmakers asked for: Committee members requested EHDI reporting metrics and district-level breakdowns, and asked DHHS to work with Part C and Medicaid screening programs to tighten referral pathways.
Why it matters: Early identification of hearing and vision differences is central to language development and school readiness. Delays in diagnosis and enrollment in services can produce lasting educational deficits; witnesses said strengthening reporting and rural diagnostic access are practical, near-term policy levers.