New York State Department of Health

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 ConferenceMarch 1-3, 1993 • All newborns should be screened for hearing loss (not just high risk). • 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: • New York City • Upstate • Long Island • TEOAE + ABR • Tested 69,766 newborns (97% of births)

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

6. NYS Demonstration ProjectFollow-up

7. NYS Demonstration ProjectFollow-Up Improvement with Time

8. NYS Demonstration ProjectPrevalence of Hearing Loss • Overall 1.96 / 1000 • Adjusted 2.80 / 1000 • NICU 8.00 / 1000 • WBN 0.90 / 1000

9. NYS Demonstration Project COST $30 per infant screened

10. Newborn Hearing Screening in New York • 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 • Incorporate consensus medical guidelines • most cost effective methods for detecting HL as early as possible • Program shall provide for follow-up

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

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

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

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

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

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

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

19. Parent Notification/Education • 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

21. Early Hearing Detection and Intervention 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 • Effective tracking and follow-up • Appropriate and timely diagnosis of the hearing loss • Prompt enrollment in appropriate early intervention • A medical home for all newborns • Culturally competent family support • Elimination of barriers to service access

23. Healthy People 2010 • 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.

24. EHDI Timeline • Before One Month of Age • Outpatient re-screening for all failed or missed screenings • 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 AgeIf Hearing Loss is Confirmed • Early intervention services • Parental information and choices about amplification and communication options • Before Six Months of Age • Continue early intervention • Additional consultation as needed

26. Newborn Hearing Screening in New York • 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 • 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 • Aggregate data • Due 90 days after the close of the quarter

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

30. Date Reporting: Data Dictionary • 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 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

32. Data Reporting: Data Dictionary • 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 • 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 • 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

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

39. Early Intervention Guidance Memorandum 2003-03 • 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 • After an infant fails two hearing screenings • 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 • 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 • 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... • Family Support • Technology Decisions • Communication Choices

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

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

46. New York StateDepartment of Health Thank you