1. The Impact of the Lack of Early Intervention for Infants with Hearing Loss Donna C. Maselli, RN, MPH Connecticut Department of Public Health Hartford, CT

2. Faculty Disclosure Information In the past 12 months, I have not had a significant financial interest or other relationship with the manufacturer(s) of the product(s) or provider(s) of the service(s) that will be discussed in my presentation. This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA.

3. Newborn Hearing Screening History in CT Legislation to screen high risk infants since 1985 –Primarily NICU babies Well babies were not routinely screened –Half the children with PCHL do not exhibit risk factors (NCHAM, 2002) 1994 Strong lobbying began to implement Universal Newborn Hearing Screening (UNHS) –CT Newborn Hearing Screening Task Force formed

4. CT Legislation 19a-59 amendment in part reads…. Institutions providing childbirth services shall, no later than July 1, 2000, include a UNHS program as part of its standard of care. –Initial legislation was for July 1, 1999 Source: Connecticut State Statutes

5. Purpose of UNHS To provide early hearing detection & intervention (EHDI) to infants, in an attempt to minimize speech and language delays –EHDI and treatment before 6 months of age facilitate a childs healthy development consistent with age and cognitive ability

6. Program Goals Hearing screening at birth, before discharge Diagnostic testing within 2 months of initial screen Referral to Early Intervention (Birth-to-Three) by 4 months

7. Screening Methods First screen – May be Otoacoustic emissions (OAE) or Automatic Brainstem Response (ABR)

8. Second Screening Second Screen –Repeated before discharge if infant does not pass the first screen –ABR screen 1/06 ABR screening for all NICU infants

9. 2004 STATISTICS Total Screened 97% Passed 1st Screening 91.21% Passed 2 nd Screening 6.37% Referred for Diagnostic Testing 1.35% (n=324) Received Diagnostic Testing 84% Lost to Follow-up 16% Hearing Loss 0.14% (n=60)

10. Types of Hearing Loss Identified 2004 BilateralUnilateral Conductive9%21% Sensorineural54%37% Undetermined36%47%

11. Diagnostic Testing Centers DPH Identified Centers for Follow-up Testing –Used CT UNHS Task Force Best Practice Standards –Surveyed all CT licensed audiologists –Identified 16 Diagnostic Testing Centers Mechanism to report to DPH Referral to E.I.

12. Best Practice Recommendations for Diagnostic Hearing Testing of Infants CT Newborn Hearing Screening Task Force Auditory Brainstem Response [ABR (a.k.a BAERS, BAER)] –Threshold measurement with frequency specific tone bursts –Threshold measurement with bone conduction ABR –Sedation in a medical facility where the child can be appropriately monitored Immittance Testing –Tympanometry with high frequency probe tone greater than 1000 Hz –Acoustic reflex testing

13. Best Practice Standards cont… Completed by 2 months of age Conducted by a pediatric audiologist A battery of tests based on –Screening results –Medical history –Risk factors Include an otological evaluation –May be conducted at different facility and time

14. Best Practice Standards cont… Otoacoustic Emissions (OAE) –Transient evoked or distortion product Behavioral Audiometry –May be useful in addition to the above Reporting of results to DPH Refer to Birth-to-Three

15. Degree of Hearing loss Mild 26-40 dB HL Moderate 41-60 dB HL Severe 61-80 dB HL Profound 80+

16. AGE AT DIAGNOSIS (in months) National Goal = 3 months YEARAGE in MONTHS 20001.69 2001 3.07 20021.74 2003 0.85 2004 2.29 2005 2.92

17. AGE AT Referral to B23 (in months) National Goal = 6 months YEARCT AGE At Referral 20002.13 20013.48 20022.64 20033.23 20043.83 20054.68

18. Early Intervention Services in CT Mandated reporting (CT General Statutes Sec. 17a-248d) –Report within 2 days of identifying child –Suspected or at risk of having developmental delay Infants referred through Child Development Infoline

19. CT Early Intervention Eligibility Birth-to-Three Eligibility –40db or greater, bilateral hearing loss –Exclusions! –www.birth23.org 27 states that have language in their legislation that includes either unilateral, mild or "any" hearing loss

20. Why is early intervention important for children with mild or unilateral hearing loss?

21. Mild Hearing Loss Will miss 25-40% of what is said & 50% in noisy situation May not hear consonants such as /s/, /f/, /th/, /p/, /h/, /g/, /ch/, /sh/, /z/, /v/ Cannot hear plurals or contractions Unable to learn incidental learning common sense 37% with slight-mild hearing loss fail a grade, typically 1st (Bess et. AL. 1998)

22. Unilateral Hearing Loss Difficulty hearing speech if speaking from behind or with background noise Difficulty localizing speech 35% fail one or more grades, typically 1 st 27% ages 1-3 present with language delay

23. Attempts to Change CT Birth-to-Three Eligibility To include unilateral and bilateral with any degree Multi level support –DPH, DSS, UNHS Task Force, Dx Centers Birth-to-Three Medical Advisory meeting –Show us the data that says these kids would benefit from E.I.

24. The Impact of the Lack of Early Intervention for Infants with Hearing Loss MD/MPH Student Internship at DPH (Summer 2005) Purpose of the Study –Assess speech/language developmental outcomes of children with hearing loss who did not receive Birth-to-Three services Hypothesis –Children with hearing loss who did not receive E.I. services will show evidence of delayed speech/language by ages 3, 4 or 5 years

25. Methodology Selection Criteria –Used UNHS data –Infants born between 7/1/00 - 12/31/03 Now 2-5 years old 80% of the childs ability to learn speech, language and related cognitive skills is established by 36 months (White, 2000) –Bilateral with mild in at least one ear –Unilateral, moderate to profound hearing loss

26. Methodology 94 Records met criteria –Letters sent to families –Requested parental consent to review audiology records –22 consents received Records reviewed for: –Parental concern –An assessment of speech/language –Referral for speech evaluation –Referral to B23

27. Results 77.3 % Recommended ENT consultation 59% No documented audiology visit after ENT 68.2% No documented audiology visit after age 2 90.9% Status of speech/language development unknown 9.1% Had documented delay

28. Conclusion Unable to ascertain if lack of early intervention is associated with speech/language delays due to: Lack of Audiology visit after ENT referral (59%) Lack of reference to speech/language in audiology record (90.9%) Lack of documented follow-up after age 2 (68.2%) –The absence of visits after age 2 may be due to PCP conducts the screenings in the office Family moved from the region The child is not receiving any care Audiological assessments are being performed by the ENT

29. So What Do We Do? ENTs –Presented findings at annual ENT Association meeting Decrease numbers of undetermined type Encourage collaboration between diagnosing audiologist, PCP and ENT Implemented ENT Reporting to DPH

30. So What Do We Do? Audiologists –Presented findings at Hearing Screening Symposium –Addressed need for speech/language assessment along with audiological testing –Revised reporting form to collect name of ENT –Encouraged better medical home collaboration

31. So What Do We Do? Families –Can contact study families to assess follow-up Ascertain if parental concern Confirm audiological follow-up –Implementing Listen & Learn Program Q 6 mo. Follow-up for infants not eligible for E.I. Speech/language assessment Parental education Hearing evaluation

33. Donna C. Maselli, RN, MPH Amy Mirizzi, MPH