1. Indianas Universal Newborn Hearing Screening Program Weilin Long, M.A., M.P.A. Indiana State Department of Health Newborn Screening Section

2. Some of the Key Players Who Are With Me Today: Charlene Graves, M.D., Medical Director of Indiana State Newborn Screening Programs Cindy Lawrence, M.A.T., Assistant Director of Indiana School for the Deaf Outreach Program Jane Metzger, M.Aud., Regional Consultant Molly Pope, M.A.T., Regional Consultant Coordinator Michelle Wagner-Escobar, M.A., Regional Consultant

3. History Professional sensibility/concerns Parent/consumer advocacy IPNs subcommittee - 1998 Public Law 91-1999 Advisory Committee appointed by the Governor – 1999-2000 Program preparation and full implementation – hospital screening - 2000

4. History Less than 20 hospitals with UNHS program in 1994 46 with UNHS in 1996 99 with UNHS in 2000 (94%) 102 with UNHS in 2001 (100%) 105 with UNHS in 2002 (100%) Including 2 midwife facilities

5. UNHS Law Legislatively mandated program … every infant shall be given a physiologic hearing screening examination at the earliest feasible time for the detection of hearing impairments IC 16-41-17-2 5/1999

6. Program Goals Physically screen all infants in Indiana prior to discharge from hospital; Perform diagnostic evaluation by three months of age; and Enroll in early intervention by six months of age

7. Identify Key Players ISDH First Steps Hospitals Primary care physicians Specialists/audiologists Public health nurses Parents/families

8. Technology Promote communication Encourage collaboration Adopt NBS follow-up models Outreach to local communities Learn from other states Develop tracking and follow-up data system

9. Regional Outreach Program Transit the program from hospital- centered screening program (1 st year) to community-based, culturally sensitive program. MCHB funded First Transition 8/2001

11. Regional Outreach Program Involve community/family Ensure technical assistance available to local communities Promote timely diagnostic evaluation and early intervention Refine Indianas UNHS through outreach activities

12. Centralized Follow-up System Full-time nurse consultant position Follow-up with hospital, PCP, PHN, parent. Not screening. Screening not completed. Unauthorized refusal. Lost of follow-ups. Transferred without screening Second TransitionRonnie Reuveny 3/2002

13. Current Status (January – December 2002) 100% hospitals/birthing institutions participated and reported 98% infants were screened 9.7% did not pass initial screenings 97.5% of those who did not pass initial screening received repeat screening 1.4% (1131) did not pass repeat screening 1709 referrals were made for not passed screenings - 967 to First Steps; 551 to PCPs; and 191 to specialists 422 referrals were made due to high risk factors – 422 to First Steps, 203 to PCP, and 73 to specialists

14. Current Status (January – December 2002) Out of 967 babies who did not pass hearing screening and were referred to First Steps, 922 have received follow-up services Age at AuthorizationAuthorized for Hearing Services 0-3 Month566 (61%) 4-6 Month186 (20%) 7-9 Month170 (18%)

15. ?…?…?…? What happened to those who did not pass hearing screening before they left the hospital? Did they receive adequate information about early intervention services? Were they informed of audiologic resource available in their area? What happened to those who chose not to use First Step early intervention services? Third Transition

16. Another Transition … Formed a Parent Focus Group - Develop a Parent Satisfaction Survey _ Evaluate program and identify needs and gaps Surveyed 320 licensed audiologists in Indiana - Identify audiologists available in Indiana - Outreach, educate and implement a udiologic assessment evaluation and report system 10/2002

18. Audiologic Evaluation and Report System Guidelines Report forms and instructions System by regions Tracking and follow-ups 1/2003

19. Audiologic Evaluation and Report System Encourage audiologists to provide information to the ISDH UNHS - history - degree and type of hearing loss - referral information Help to identify those who chose not to use First Steps early intervention services

20. Ensure Funding Increase state NBS fee to include budget for UNHS Rule change is in process 10/2002 -

21. Next Transition… Medical homes Early intervention to accessible schools

22. For More Information… Please visit our display booth THANK YOU!