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First Annual National EHDI Meeting Panel on Operating Effective Screening Programs South Carolina Jane Lukshis, MN, RN Nurse Consultant- DHEC Division of Children with Special Health Care Needs Count Their Fingers Count Their Toes Test Their Hearing Because Babies Can’t Tell Us If They Can’t Hear Background-1996 Conducted a needs assessment specific to SC and results were consistent with national findings: Hospitals were only screening newborns with risk indicators (2 hospitals were screening all newborns) Average age of identification was 2 ½ to 3 years of age Limited number of audiologists providing services to infants identified with a hearing loss January – July, 1997 Established statewide Advisory Council DHEC- serve as Lead Agency SC Perinatal Association Audiologists SC Department of Education Early Intervention Programs Title V and Part C Programs SC School for the Deaf and Blind January – July, 1997 (cont.) Established statewide Advisory Council Governor’s Office Speech-Language Pathologists Neonatologists Otolaryngologists Pediatricians AG Bell Bureau of Health Licensing- DHEC South Carolina Medical Association January – July, 1997 (cont.) Established statewide Advisory Council DHHS- Medicaid program USC Schools of Public Health & Medicine SC Academy of Audiologists SC Association of the Deaf SC Hospital Association SC State Office of Rural Health Nursery staff Parents of children with hearing loss January – July, 1997 (cont.) Created 4 subcommittees from the Advisory Council Tracking and Data Management- responsible for developing hospital screening and audiology evaluation forms; and tracking methods Funding- responsible for exploring payment/reimbursement options for in-patient screens and audiologic follow-up January – July, 1997 (cont.) Created 4 subcommittees from the Advisory Council Education- responsible for developing public awareness and educational materials Early Intervention- responsible for assessing SC’s capacity to provide services for infants identified with a hearing loss August 1997- December 1999: Implemented Pilot Project 8 hospitals volunteered to participate (represented 24% of annual births statewide) ABR or AABR technology used for in-patient screens Hospital screening and audiology evaluation forms sent to DHEC for tracking purposes Level I Level II Level III Data analysis of pilot Revisions in the hospital protocols, introduction of an electronic data monitoring and tracking system, and referrals to Family Support Services resulted in a 99.9% capture rate, referral rate <4%, and 6% lost to follow-up. January 2000-June 2001 Developed a work plan to implement statewide early hearing detection and intervention Intensified our collaborative efforts with SC Hospital Association Arranged for NATUS and Pediatrix, Inc. to provide technical assistance Met with representatives from all 48 birthing centers and conducted a “readiness” assessment January 2000-June 2001 (cont.) Outlined which hospitals on a monthly basis we would bring on board Funded legislation was passed in June, 2000 mandating that newborn hearing screening prior to hospital discharge be conducted in hospitals with at least 100 births annually beginning July, 2001 January 2000-June 2001 (cont.) Contracted with a consulting firm to develop an Internet based data entry and tracking system Developed First Sound brochure (available in English and Spanish) Completed statewide implementation in May, 2001 Data analysis 1/00-6/01 Benchmarks AAP and JCIH recommendations First Sound Capture Rate 95% 98% Audiology follow up 95% Referral Rate < 4% 2.1% False positive rate < 3% 1.9% HL identified by 3 months of age “strive for 100%” <3 months= 65% 3-6 months= 27% > 6 months = 8% Early intervention by 6 months “strive for 100%” 60% known to Part C 90% of those enrolled within 6 months of confirmed HL 80% with audiology f/u 20% without audiology f/u Infants with confirmed hearing loss: n= 84 (67.9%) No risk factors Risk factors (32.1%) Confirmed HL with risk factors 10 Ototoxic meds 8 Low APGAR/asphyxia LBW 6 Cong. infection Craniofacial anom. 4 Mechanical vent. Genetic syn. 2 Family hx Hyperbilirubinemia 0 Laterality of confirmed hearing loss (27.7%) Unilateral Bilateral (72.3%) Right Ear versus Left Ear (all confirmed hearing loss) (30.4%) Right Ear Left Ear (69.6%) Types of hearing loss (all confirmed hearing loss) (24.1%) Conductive SN Mixed (53.0%) (10.8%) (3.6%) (8.4%) AN Not reported Degrees of hearing loss( all confirmed hearing loss) (28.4%) Slight Mild (7.4%) (22.2%) Moderate Mod. sev. Severe Profound (14.8%) (4.9%) (11.1%) (11.1%) Not reported Unilateral- types of hearing loss (22.7%) Conductive SN (54.5%) AN Not reported (18.2%) (4.5%) Unilateral- degrees of hearing loss (27.3%) Slight (4.5%) (13.6%) Mild Moderate (4.5%) Mod. sev. Severe Profound Not reported (18.2%) (22.7%) (9.1%) Bilateral- types of hearing loss (25.0%) Conductive SN Mixed (53.3%) (8.3%) AN Not reported (3.3%) (10.0%) Bilateral- degrees of hearing loss (31.0%) Slight Mild Moderate (3.4%) (29.3%) Mod. sev. Severe (10.3%) Profound Not reported (12.1%) (6.9%) (6.9%) July 2001 to present Funded legislation effective July, 2001 All 48 birthing centers are screening newborns prior to discharge and submitting data electronically to DHEC Statewide implementation of Internet based application in progress, to include access and entry by hospitals, audiologists and PCP July 2001 to present Completed a statewide PR campaign in December, 2001 which included PSAs and bill boards Full time Program Manager, Program Coordinator and Data Manager Continue to provide trainings, in-services and oversight for hospitals and audiologists Strengthened our links with other programs to ensure follow up activities occur from hospital screening through early intervention