1. THE MARYLAND EARLY HEARING DETECTION AND INTERVENTION PROGRAM
 ”Maryland EHDI Program Update”
MAY 16, 2013
Tanya D. Green, M.S., CCC-A
Program Chief, Maryland Infant Hearing Program
Maryland Department of Health and Mental Hygiene
Prevention and Health Promotion Administration
Office for Genetics and People with Special Health Care Needs

2. MISSION AND VISION of the Prevention and Health Promotion Administration
The mission of the Prevention and Health Promotion Administration is to protect, promote and improve the health and well-being of all Marylanders and their families through provision of public health leadership and through community-based public health efforts in partnership with local health departments, providers, community based organizations, and public and private sector agencies, giving special attention to at-risk and vulnerable populations.
VISION
The Prevention and Health Promotion Administration envisions a future in which all Marylanders and their families enjoy optimal health and well-being.

3. The Infant Hearing Program (IHP) is part of The Office for Genetics and People with Special Health Care Needs (OGPSHCN)
Donna X. Harris
Director of OGPSHCN
Debbie Badawi, M.D.
Medical Director

4. MISSION OF OGPSHCN
The mission of the Office for Genetics and People with Special Health Care Needs (OGPSHCN) is to assure a comprehensive, coordinated system of care that meets the needs of Maryland’s children and youth with special health care needs and their families and is community-based, family-centered and culturally competent.

5. Vision of OGPSHCN
The vision of the Office for Genetics and People with Special Health Care Needs is to become a nationally recognized leader in developing the unique potential of each Maryland child and young person served through its comprehensive, fully integrated and consumer-friendly system of care.

6. Current OGPSHCN Organizational Structure
Infant and Children Follow Up Services:
Sickle Cell Disease
Children’s Medical Services
Infant Hearing
Newborn Screening Follow Up
Birth Defects and Reporting Information System
Critical Congenital Heart Disease (CCHD) Screening
Infrastructure and Systems Development
Systems of Care
Medical Homes
Youth Transition
Grants Administration
Family Resource Coordination 6

7. Mission of The Maryland Infant Hearing Program
To promote the best communication outcomes for infants with hearing loss by creating and maintaining systems of care that identify these infants and ensure their referral to appropriate intervention services at the earliest possible age.

8. The problems of deafness are deeper and more complex if not more important then those of blindness. Deafness is a much worse misfortune for it means the loss of the most vital stimulus – the sound of the voice that brings language, sets thoughts astir, and keeps us in the intellectual company of man. Blindness separates us from things but deafness separates us from people. Helen Keller

9. MD EHDI PROGRAM OVERVIEW

10. Why Universal Newborn Hearing Screening
1 to 3 babies per 1,000 will be born with a permanent hearing loss each year in the United States.
Approximately 1 in 1,000 newborns is born profoundly deaf.
2-3 out of 1,000 babies are born with partial hearing loss.
According to the Hearing Loss Association of America, approximately “30 school children per 1,000 have a hearing loss.”

11. 1-3-6 Principle
Goals of EHDI (Early Hearing Detection and Intervention) endorsed by the JCIH, AAA, ASHA and the AAP
Hearing Screening by 1 month of age
Hearing identification by 3 months of
age
Intervention by 6 months of age
Children with hearing loss who do not receive intervention services by 6 months of age are at greater risk for delays in speech and language development.

12. Legislation

13. Federal Legislation
1999 NY Rep. Jim Walsh introduced the “Newborn and Infant Screening and Intervention Act”
Create the EHDI program within the U.S. Department of Health and Human Services
Currently 45 states have legal mandates
EHDI programs in all 50 states

14. Maryland Legislation
July, 2000 SB 624, Health-General Article, Sec , Annotated Code of Maryland, Universal Newborn Hearing Screening
All newborns to undergo hearing screening before discharge
Insurances required to cover cost of screening and one diagnostic evaluation

15. Anticipated Updates to the UNBHS Legislation
The proposed legislative changes to Md. HEALTH-GENERAL Code Ann. §§ will be:
update procedures to allow flexibility with respect to changing standards of care
update what is now considered to be archaic language
require audiologists to report hearing screening and diagnostic evaluation results to the program
establish reporting procedures for out of hospital births
include a representative from the Governor’s Office of the Deaf and Hard of Hearing as part of the advisory council membership
revise the minimum number of times that the advisory council is required to meet per year
rename the program and advisory council as the Maryland Early Hearing Detection and Intervention Program and the Maryland Early Hearing Detection and Intervention Advisory Council, respectively.

16. Program Methods

17. Infant Hearing Program Methods
Level 1 = Birth Screen – results provided to program
Level 2 = follow-up of infants who failed or missed the birth screen and no screen or repeat screen has been received by 6 weeks of age; Level 2 follow up is conducted by the Infant Hearing Program Follow-Up Coordinators
Level 3 = infants who have had at least 2 hearing screenings without a pass result and are therefore in need of a diagnostic evaluation; Level 3 follow-up is conducted by the Program Audiologist
Contacts are made by phone/fax/letter to inform/remind parents and PCPs that a screening or diagnostic evaluation needs to be completed
3 attempts to contact at Level 2 and 3, then LTF/LTD (Lost to follow-up/lost to documentation)

18. Level 1 Tracking and Surveillance (birth screen)
Goal: to complete birth screen prior to hospital discharge, or no later than 1 month of age
Families, Hospitals, pediatricians
Hearing screen at birth, before hospital discharge or no later than 1 month
Infant Hearing Program

19. Level 2 Tracking and Surveillance (Post Discharge Screening)
Goal: follow up of infants who missed or did not pass the birth screen
Follow up coordinators encourage families of infants who missed the birth screen to schedule an appointment for the screen
Follow up coordinators encourage families of infants that fail screening to schedule diagnostic hearing evaluation….threshold ABR (clicks, tone bursts, bone conduction), immittance (high frequency tympanometry) and reflexes
Helps facilitate referral from Primary Care Physicians to the audiologist

20. Level 3 Tracking and Surveillance (Diagnostic)
Follow up of infants who did not pass a screening and have been referred for a complete audiogical evaluation
Audiologist reviews diagnostic evaluation reports
(Report results are entered into the MD Infant Hearing Program data system)
Ensures appropriate testing is received
Encourages re-evaluation if necessary
Assists in facilitating referral into early intervention
Risk factor (for later onset, progressive hearing loss) monitoring

21. Written results should always be provided to the family.
MD EDHI Infant Hearing Screening Path
Full Hearing Evaluation
(Age dependent on risk factor)
Yes
DHMH Letter
Pass
Risk factor? No
Follow up as needed
NICU
If no pass, entry into early intervention by 6 months of age
ABR Screening
Diagnostic Hearing Evaluation by an audiologist no later than 3 months of age
Did Not Pass
Referral to Audiologist
DHMH Contact
Complete Diagnostic Hearing Evaluation by an audiologist no later than 20 months of age (dependent on risk factor)
Yes
DHMH Letter
Pass
Risk factor? No
Follow up as needed
Hearing Screening
Well
Baby
Did Not Pass
Outpatient Screen
Pass
Complete Diagnostic Hearing Evaluation by an audiologist no later than 3 months as age
Did Not Pass
Referral to Audiologist
DHMH Contact
Written results should always be provided to the family.
If no pass, entry into early intervention by 6 months of age

22. Risk Factors for Later Onset and Progressive Hearing Loss

23. Incidence of hearing loss at birth is estimated to be 1-3 per 1000
Incidence of hearing loss at school age is estimated to be over 6 per 1000
Parents and care providers need to understand the need for continuous monitoring

24. Some Risk Factors for Later Onset, Progressive Hearing Loss
Caregiver concern regarding hearing, speech, language, or developmental delay
Family history of permanent childhood hearing loss.
Neonatal intensive care of >5 days, or any of the following regardless of length of stay: ECMO, assisted ventilation, exposure to ototoxic medications (gentamycin and tobramycin) or loop diuretics (furosemide/lasix), and hyperbilirubinemia requiring exchange transfusion.
Administration of ototoxic medications
Craniofacial anomalies
Physical findings, such as white forelock, associated with a syndrome known to include a sensorineural or permanent conductive hearing loss.

25. Risk Factors, continued
Syndromes associated with hearing loss or progressive or late-onset hearing loss, such as neurofibromatosis, osteopetrosis, and Usher syndrome. Other frequently identified syndromes include Waardenburg, Alport, Pendred, Jervell and Lange-Nielson, BOR (brachio-oto-renal), Goldenhar, CHARGE association, Pierre Robin, Sticklers, Trisomy 21, and choanal atresia._
Neurodegenerative disorders, such as Hunter syndrome, or sensory motor neuropathies, such as Friedreich ataxia and Charcot-Marie-Tooth syndrome
Culture-positive postnatal infections associated with sensorineural hearing loss, including confirmed bacterial and viral (especially herpes viruses and varicella) meningitis
Head trauma, especially basal skull/temporal bone fracture requiring hospitalization.
Chemotherapy

27. Reporting Screening and Diagnostic Test Results to MD EHDI

28. MD EHDI reporting Starting June, 2008
Hearing screening results entered into online data management system : eSP
Birthing hospitals receive eSP™ training

30. 30

31. MDEHDI.com eSP User access through secure user name and password
Real-time access to results
Provider access throughout the cascade of care
Improved capability to track and follow up
Powerful data base – improved statistical analysis capabilities

32. Statistics

42. MD EHDI Database Users

43. If only it were that easy…
Phone calls, faxes, letters!
Parents and physicians who have not yet followed up
Families’ “not at this address”, phone number “has been disconnected and is no longer in service”

44. Challenges

45. Challenges Catch the infants who miss the
initial screening (1% of the birth population)
Babies who miss the initial
screening are 4 times more likely to not
have follow up testing as compared to
those who had but did not pass the
inpatient screening.

46. Challenges
Foster better relationships with the audiology and physician communities and increase outreach to parents.
Better relationships can lead to
improved lost to documentation
rates.
Much of Maryland’s Lost to
Follow-up population is really
only Lost to Documentation.

47. What We Would Like From All Birth Hospitals
Report all births to DHMH Infant Hearing Program
Screen all newborns
Report hearing screening results to DHMH Infant Hearing Program
Report all risk factors for later onset, progressive hearing loss
Communicate results to parents in culturally competent fashion in written and verbal format
Forward results to the Primary Care Physician
Have a referral mechanism established for babies that refer and are missed

48. What We Would Like to Happen With the Results
Results entered into the MD Infant Hearing online data system
Hospitals to provide written and verbal results to families, but letters sent to all new parents from DHMH if baby referred or missed.
Babies that are missed or do not pass are contacted by Infant Hearing staff

49. Increasing Collaboration with Community Partners…
Outreach to parents through parent to parent mentoring program and educational materials
Encourage parents and professionals to participate in the EHDI Process
Increase participation in Medical Home Models and Out of Hospital Birthing Centers
Attend Bi-Monthly Hearing Advisory Council Meetings/Meetings are open to the public
Encourage continual submission of screening and evaluation results to the State
Increase collaboration with all stakeholders

50. Maryland AAP EHDI Chapter Champion – Susan Panny, M.D.
MD EHDI Partnerships
Parent Connections Mentor Program, through the Parents Place of Maryland
Maryland AAP EHDI Chapter Champion – Susan Panny, M.D.

51. Funding Sources: Centers for Disease Control and Prevention (CDC)
Health Resources and Services Administration (HRSA)

52. CDC Award
Funding from the CDC has been used to establish, maintain and enhance the program’s EHDI data system.
Currently in progress: Connecting the MD EHDI data system to the state’s HIE (Health Information Exchange) to allow for auto-population of data between the 2 systems and reducing the data entry burden for staff
Within the next 3 years: MSDE EI to MD EHDI data system connection; Development of an Early Hearing Care Plan which will allow transfer of hearing health information and follow up recommendations to providers who are connected to the state’s HIE; Development of an auto-update feature for patient records which will reduce the manual data entry burden even further by importing accurate birth defect data from the hospital labor and delivery summary into the MD EHDI data system

53. HRSA
Funding from the HRSA award is being used to reduce loss to follow up/loss to documentation (LTF/LTD). Efforts to reduce LTF/LTD are aimed at addressing the barriers of access to services, compliance with data reporting, and coordination of care between providers and agencies. Outreach and education for families and providers, along with collaborative efforts among state agencies are being used to ensure follow-up services are accessible, completed and reported in a timely manner.
Infant Hearing Follow up Coordinators
Parent Connections
NICHQ (National Initiative for Children’s Healthcare Quality) Learning Collaborative
Outreach to birthing centers and midwives
Outreach to encourage audiologists to report hearing screen and evaluation results to the program

54. Additional Information: EHDI-PALS online database (www. ehdipals
Additional Information: EHDI-PALS online database ( Pediatric Audiology Links to Services – web-based link to information, resources and services for children with hearing loss including an audiology facility locator. The Hearing Advisory Council meets bi-monthly on the 3rd Thursday, beginning in January. Meetings are open to the public and are held at 12:30 pm at the Hearing and Speech Agency in Baltimore.

55. Maryland Infant Hearing Program
Tanya D Green, Program Chief
Erin Filippone, Program Audiologist
Theresa Thompson, Follow-up Coordinator
Leah Washington, Follow-up Coordinator

56. This presentation will be made available on the MD EHDI website.
Thank you!!
This presentation will be made available on the MD EHDI website.