1. New York State Department of Health Outcomes of New York’s Newborn Hearing Screening Program Lynn Spivak, Ph.D., CCC-A Connie Donohue, M.A., CCC-A

2. NIH Consensus Conference March 1-3, 1993 All newborns should be screened for hearing loss (not just high risk). All newborns should be screened for hearing loss (not just high risk). Recommended method: Recommended method: –2 Stage Screen consisting of OAE & ABR

3. New York State Demonstration Project 1995 – 1998 Purpose: Determine the feasibility and cost effectiveness of NBHS in NY State.

4. NYS Demonstration Project 7 Hospitals from different regions: 7 Hospitals from different regions: –New York City –Upstate –Long Island TEOAE + ABR TEOAE + ABR Tested 69,766 newborns (97% of births) Tested 69,766 newborns (97% of births)

5. The Learning Curve: Refer Rates (Fails & Misses)

6. NYS Demonstration Project Follow-up NICUWBNTOTAL % Fails Returned 80%70%72% % Missed Returned34%27%31%

7. NYS Demonstration Project Follow-Up Improvement with Time

8. NYS Demonstration Project Prevalence of Hearing Loss Overall 1.96 / 1000 Overall 1.96 / 1000 Adjusted2.80 / 1000 Adjusted2.80 / 1000 NICU8.00 / 1000 NICU8.00 / 1000 WBN0.90 / 1000 WBN0.90 / 1000

9. NYS Demonstration Project COST $30 per infant screened

10. Newborn Hearing Screening in New York Review of Statute Review of Statute –Chapter 585 of the Laws of 1999 –Requires the commissioner of health to establish a program to screen newborn infants for hearing problems

11. UNHS: NYS Legislation The commissioner shall--establish a program to screen newborn infants for hearing problems The commissioner shall--establish a program to screen newborn infants for hearing problems Incorporate consensus medical guidelines Incorporate consensus medical guidelines –most cost effective methods for detecting HL as early as possible Program shall provide for follow-up Program shall provide for follow-up

12. UNHS: NYS Legislation Program shall provide for reimbursement of health care providers performing screening Program shall provide for reimbursement of health care providers performing screening Hospitals must administer program or provide a referral for outpatient screening Hospitals must administer program or provide a referral for outpatient screening

13. UNHS: Ad Hoc Advisory Committee 2 Pediatricians 2 Pediatricians 2 Audiologists 2 Audiologists 2 Lawyers 2 Lawyers –representing hospital organizations 2 Parents 2 Parents 1 Rep from Rural Hospitals 1 Rep from Rural Hospitals 1 State Insurance Department Rep 1 State Insurance Department Rep Representatives from DOH Representatives from DOH

14. UNHS: NYS Legislation Regulations adopted—August 22, 2001 Regulations adopted—August 22, 2001 Regulations went into effect October 20 th, 2001 Regulations went into effect October 20 th, 2001

15. Required Program Components Conduct inpatient screening Conduct inpatient screening Communication of results to parents Communication of results to parents Conduct follow-up screen or referral Conduct follow-up screen or referral –fails –misses Referral of infants suspected of having hearing loss to the Early Intervention Program (EIP) Referral of infants suspected of having hearing loss to the Early Intervention Program (EIP)

16. Required Components (2) Designate program manager Designate program manager Provide supervision & training of screeners Provide supervision & training of screeners Maintain & calibrate equipment Maintain & calibrate equipment Provide adequate space for screening Provide adequate space for screening Report aggregate data to DOH Report aggregate data to DOH Establish QA protocols Establish QA protocols

17. Equipment Fully automated Fully automated No clinical decision making required No clinical decision making required –ALGO –Echocheck

18. Documentation Inpatient screening results Inpatient screening results Outpatient screening results known to facility Outpatient screening results known to facility Referrals to EIP Referrals to EIP Issuance of prescription for infants who fail or were missed Issuance of prescription for infants who fail or were missed

19. Parent Notification/Education Brochures supplied by DOH Brochures supplied by DOH »Information for Parents »Your Baby Passed »Your Baby Needs Another Screening »How to Get Your Baby’s Hearing Screened –Communication milestones –Signs of hearing loss Inform parents of screen results before discharge Inform parents of screen results before discharge

21. Early Hearing Detection and Intervention Programs Early Hearing Detection and Intervention (EHDI) Programs Early Hearing Detection and Intervention (EHDI) Programs  Newborn hearing screening is one component of EHDI Programs  American Academy of Pediatrics Task Force

22. Components of EHDI Programs in the US Universal newborn hearing screening Universal newborn hearing screening Effective tracking and follow-up Effective tracking and follow-up Appropriate and timely diagnosis of the hearing loss Appropriate and timely diagnosis of the hearing loss Prompt enrollment in appropriate early intervention Prompt enrollment in appropriate early intervention A medical home for all newborns A medical home for all newborns Culturally competent family support Culturally competent family support Elimination of barriers to service access Elimination of barriers to service access

23. Healthy People 2010 Objective 28-11: Objective 28-11: Increase the proportion of newborns who are screened for hearing loss by age 1 month, have audiologic evaluation by age 3 months, and are enrolled in appropriate intervention services by age 6 months. Increase the proportion of newborns who are screened for hearing loss by age 1 month, have audiologic evaluation by age 3 months, and are enrolled in appropriate intervention services by age 6 months.

24. EHDI Timeline Before One Month of Age Before One Month of Age –Outpatient re-screening for all failed or missed screenings Before Three Months of Age: Before Three Months of Age: –Referral of infants that do not pass an initial (inpatient) screening and an outpatient re- screening to the Early Intervention Program –Audiological evaluation

25. EHDI Timeline (2) Before Three Months of Age If Hearing Loss is Confirmed Before Three Months of Age If Hearing Loss is Confirmed –Early intervention services –Parental information and choices about amplification and communication options Before Six Months of Age Before Six Months of Age –Continue early intervention –Additional consultation as needed

26. Newborn Hearing Screening in New York Highlights of program development Highlights of program development –Funding in 2002 Governor’s budget –Guidance memorandum –Ongoing technical assistance –Screening rates

27. Hospital Newborn Hearing Screening Programs Options for administering programs Options for administering programs –Screen infants prior to discharge and conduct outpatient re-screens for infants who refer –Screen infants prior to discharge and refer infants who do not pass to a different facility for outpatient re-screen –Refer all infants for hearing screening after discharge (facilities with 400 or fewer births per year)

28. Newborn Hearing Screening Data Reporting Requirements All maternity hospitals and birthing centers submit quarterly reports to the Department of Health All maternity hospitals and birthing centers submit quarterly reports to the Department of Health –Aggregate data –Due 90 days after the close of the quarter

29. Data Reporting: Data Points Number of inpatient screens conducted Number of inpatient screens conducted »(pass, fail) Number of missed inpatient screens Number of missed inpatient screens Number of outpatient screens conducted Number of outpatient screens conducted »(pass, fail) Number of refusals Number of refusals

30. Date Reporting: Data Dictionary Inpatient Initial Screening Final Result Inpatient Initial Screening Final Result »Passed: Number of infants who passed on first screen or following subsequent screening prior to discharge »Failed – Unilateral: Number of infants who did not pass the hearing screening in one ear prior to discharge »Failed – Bilateral: Number of infants who did not pass the hearing screening in both ears prior to discharge »Refused: Number of infants for whom the guardian declined inpatient screening

31. Data Reporting: Data Points (2) Number of referrals for outpatient screening Number of referrals for outpatient screening Number of results returned to the facility by other providers conducting outpatient screens Number of results returned to the facility by other providers conducting outpatient screens –(pass, fail) Number of at-risk infants referred to the Early Intervention Program for follow-up Number of at-risk infants referred to the Early Intervention Program for follow-up

32. Data Reporting: Data Dictionary Number of Newborns Receiving Outpatient Hearing Screenings for Births in Reporting Period Number of Newborns Receiving Outpatient Hearing Screenings for Births in Reporting Period »Referred: Missed Initial: Applicable to infants issued prescriptions for outpatient newborn hearing screening due to being missed during inpatient stay »Referred: Failed Initial: Applicable to infants who were issued prescriptions for newborn hearing screening due to failing initial inpatient screening

33. Data Reporting: Data Points (3) Number of Newborns for Reporting Period with a Failed Initial Screen and No Re- screening Results Returned to the Facility Number of Newborns for Reporting Period with a Failed Initial Screen and No Re- screening Results Returned to the Facility –Fewer than 75 days post discharge –75 days or greater post discharge »Referred to early intervention »Not referred to early intervention due to parental objection »Lost to follow-up

34. Newborn Hearing Screening Progress in New York Babies screened for hearing loss prior to hospital discharge –October – December 2001: 85% –January – December 2002: 96.44% –January – December 2003: 98.6%* *based on newborn hearing screening data

35. Newborn Hearing Screening Progress in New York 2003 Statistics 2003 Statistics –Number of babies screened: 230,139 –Refer rate: 4.2% –Percentage of babies receiving a re-screen: 73.2% –Percentage of babies with suspected hearing loss: 0.51% –Referrals to early intervention: 308

36. Children With a Diagnosis Upon Referral to the EIP

37. Children Referred to EI with a Diagnosis of Hearing Loss

39. Early Intervention Guidance Memorandum 2003-03 Newborn Hearing Screening Newborn Hearing Screening –General information –Role of maternity hospitals –Role of the Early Intervention Program »Referral process »Procedural aspects »Early intervention services

40. Referral to Early Intervention Following newborn hearing screening Following newborn hearing screening 1. After an infant fails two hearing screenings 2. When an infant fails initial hearing screening and does not receive a follow-up screening within 75 days after discharge

41. Referral to Early Intervention Children are referred to the Early Intervention Official in their county of residence Children are referred to the Early Intervention Official in their county of residence –Primary referral sources must refer children under age three with suspected or confirmed developmental delay or disability to the Early Intervention Official unless the parent objects

42. Early Intervention Part C of IDEA is an important resource for infants with hearing loss and their families Part C of IDEA is an important resource for infants with hearing loss and their families –Audiology services are included in Early Intervention Program regulations (10 NYCRR Section 69-4.1(k)(2)(iii)(a-f))

43. Considerations for Early Intervention For children with hearing loss and their families... For children with hearing loss and their families... –Family Support –Technology Decisions –Communication Choices

44. Other Resources National Center for Hearing Assessment and Management (NCHAM) National Center for Hearing Assessment and Management (NCHAM) –Web site: www.infanthearing.org www.infanthearing.org American Speech-Language-Hearing Association (ASHA) American Speech-Language-Hearing Association (ASHA) –Web site: www.asha.org www.asha.org New York State Department of Health New York State Department of Health –Web site: http://www.health.state.ny.us http://www.health.state.ny.us »Family & Community Health, Infants & Children, Early Intervention Early Intervention

45. Good work, but I think we might need just a little more detail right here. Implementing Effective Screening Programs Then a miracle occurs out Start

46. Thank you New York State Department of Health