1. Pennsylvania Department of Health Out-of-Hospital Birth Newborn Hearing Initiative Pennsylvania Department of Health Out-of-Hospital Birth Newborn Hearing Screening Initiative National EHDI Conference Washington, D.C. February 2 -3, 2006 Arthur A. Florio, DOH EHDI Program Administrator Patti Matlock, R.N., DOH Nursing Services Consultant Lynn Shay, R.N., BSHS, CPM

2. Presenter Disclosure Information In the past 12 months, we 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 our presentation. This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA or will be discussing unapproved or “off-label” uses of pharmaceuticals or devices.

3. Pennsylvania Facts Population 12,406,292 Population 12,406,292 44,817 square miles 44,817 square miles 67 Counties and 2,567 municipalities 67 Counties and 2,567 municipalities 48 of 67 counties are rural 48 of 67 counties are rural 1/3 of the population lives 1/3 of the population lives in a rural area in a rural area

4.   1999 – began demonstration program in 26 birthing hospitals   IHEARR Act passed in November of 2001   Statewide program implemented July 1, 2002   Universal EHDI in all 125 birthing hospitals   ~ 142,000 hospital births per year   Approx. 3,400 out-of-hospital births per year Pennsylvania’s Early Hearing Detection & Intervention Program

5. 2004 Hospital Hearing Screenings

6. Why undertake a special effort to screen Out-of-Hospital Births? IHEARR Act specifically mentions the need to screen out-of-hospital births within 30 days. HRSA UNHSI grant has a requirement to assure broadest possible representation of culturally distinct groups in programs sponsored by MCHB. Pennsylvania has historically concentrated cultural communities where out-of-hospital birthing is preferred. These communities have continued to grow.

7. Out-of-Hospital (OOH) Births Pennsylvania had a total of 3,390 out-of- hospital births in 2003. Pennsylvania had a total of 3,390 out-of- hospital births in 2003. 1,066 OOH births (32%) occurred at Freestanding Birthing Centers (FBCs); 120 FBC births were to out-of-state residents. 1,066 OOH births (32%) occurred at Freestanding Birthing Centers (FBCs); 120 FBC births were to out-of-state residents. 2,324 OOH births (68%) occurred in residences, midwives’ homes or other locations (the majority were home births). 2,324 OOH births (68%) occurred in residences, midwives’ homes or other locations (the majority were home births).

8. Geographic Concentrations 5 of the 15 FBCs accounted for 64% of the 1066 births that took place in FBCs during 2003. 5 of the 15 FBCs accounted for 64% of the 1066 births that took place in FBCs during 2003. 5 counties accounted for 62% of all OOH births in the residence, physician’s office & other location category (i.e., places other than FBCs). 5 counties accounted for 62% of all OOH births in the residence, physician’s office & other location category (i.e., places other than FBCs).

9. 2003 OOH Births – Top 20 Counties of Occurrence (all types included) 1,000 + Erie Crawford 43 Warren 112 McKean Potter Tioga Bradford Susquehanna Wayne Lackawanna Wyoming Luzerne Sullivan Lycoming Columbia Pike Monroe Carbon Northumberland Schuylkill Dauphin Delaware 78 Lancaster 1047 Berks 215 Lehigh Bucks Philadelphia 88 Lebanon 38 Montour Northampton Montgomery 187 Chester 124 York 38 Snyder Adams Perry Cumberland 86 Union 211 Franklin 99 Centre 33 Blair Bedford Somerset Cambria Indiana 120 Westmoreland Clinton Cameron Elk Forest Venango Butler Armstrong Jefferson Mercer 97 Lawrence Beaver Allegheny 135 Washington Greene Mifflin 104 Fulton Huntingdon Clearfield Clarion Fayette 100 - 200 50 – 100 40 - 80 Juniata -- 162

10. 2003 OOH Births – Areas of Concentration Red – Areas with concentrated home births (townships/boroughs with at least 5 and as many as 104 home births – residence of mother) Red – Areas with concentrated home births (townships/boroughs with at least 5 and as many as 104 home births – residence of mother) Colored Dots with surrounding shading – Locations of FBCs and the twps./boroughs where mothers who gave birth in those FBCs reside. Colored Dots with surrounding shading – Locations of FBCs and the twps./boroughs where mothers who gave birth in those FBCs reside.

11. MIDWIVES DOING OOH BIRTHS  Certified Nurse Midwife (CNM)  Certified Professional Midwife (CPM)  Direct Entry Midwife (DEM)  Traditional Midwife Some RNs and midwife apprentices also do newborn hearing screening for OOH births.

12. Overcoming Barriers in Getting OOH Birth Hearing Screening Started... Lack of interest among midwives Lack of interest among midwives Midwives not convinced of its importance – viewed hearing screening as an additional unnecessary procedure Midwives not convinced of its importance – viewed hearing screening as an additional unnecessary procedure Patients not interested Patients not interested Hospitals hesitant to allow hands-on in-service training for midwives doing OOH births Hospitals hesitant to allow hands-on in-service training for midwives doing OOH births

13. Getting Started... Contact midwives in the counties with the largest concentrations of OOH births Contact midwives in the counties with the largest concentrations of OOH births Contact DOH district office community health nurses Contact DOH district office community health nurses Finding midwives interested in performing newborn hearing screening Finding midwives interested in performing newborn hearing screening FBCs are a good venue for hands-on training FBCs are a good venue for hands-on training

14. Establishing OOH Birth Screening Networks... Traveling Midwife Networks Traveling Midwife Networks Freestanding Birthing Facilities Freestanding Birthing Facilities

15. How Machines are Purchased Advisory Committee helped formulate equipment specifications Advisory Committee helped formulate equipment specifications Bid Procurement -- bid specification is issued and vendors submit bids Bid Procurement -- bid specification is issued and vendors submit bids The lowest bid that meets all requirements of the bid specification gets the sale The lowest bid that meets all requirements of the bid specification gets the sale

16. Bid Specification Highlights... Must be Portable Must be Portable Auditory Brainstem Response (ABR) Auditory Brainstem Response (ABR) Battery-powered (5-hour operating capability on charge) Battery-powered (5-hour operating capability on charge) Pass/Not-pass result indication Pass/Not-pass result indication Consumables for 500 screenings/unit Consumables for 500 screenings/unit 3-year service agreement & warranty 3-year service agreement & warranty Vendor Training Vendor Training

17. Communication is Important Mailing reports and information Mailing reports and information Faxes and e-mail Faxes and e-mail Telephones and cell phones Telephones and cell phones

18. CURRENT PLACEMENT OF PORTABLE ABR SCREENING UNITS Pennsylvania’s EHDI program has purchased 15 portable ABR units Pennsylvania’s EHDI program has purchased 15 portable ABR units The units are currently deployed at the above locations The units are currently deployed at the above locations Upcoming prospective placement at Pittsburgh FBC Upcoming prospective placement at Pittsburgh FBC Another bid purchase is in process for 5 additional units Another bid purchase is in process for 5 additional units

19. Preparing for Hearing Screening Quiet environment Make sure infant is tired and fed Identify and prepare sensor sites Connect Sensors Fit ear-tip on the probe Prepare the machine View results and record results

20. Maintaining the Networks 15 portable ABR screening units in use 15 portable ABR screening units in use 6 traveling midwives share 3 machines 6 traveling midwives share 3 machines 12 units are at FBCs 12 units are at FBCs Maintaining equipment Maintaining equipment - 5 machines need yearly replacement cables - 5 machines need yearly replacement cables - knowledge of warranties - knowledge of warranties Budgeting for and ordering supplies Budgeting for and ordering supplies

22. Reports OOH Birth Filter Paper

23. Success of Program Diagnosed 2 newborn infants with hearing loss Diagnosed 2 newborn infants with hearing loss Both infants have amplification Both infants have amplification Awareness among the Lancaster County about hearing screening and the outcome Awareness among the Lancaster County about hearing screening and the outcome More interest among the midwives in screening More interest among the midwives in screening

24. Challenges Fluctuating birthing volumes Fluctuating birthing volumes Generating interest among clientele Generating interest among clientele Equipment recalls Equipment recalls Cooperation among midwives sharing screening units Cooperation among midwives sharing screening units Submission of data and referrals Submission of data and referrals

25. Goals for 2006 Purchase 5 ABR hearing machines Purchase 5 ABR hearing machines Screen 50-60% of OOH births Screen 50-60% of OOH births Provide educational updates for midwives Provide educational updates for midwives Initiate feedback newsletter for midwifes Initiate feedback newsletter for midwifes

26. Serving special sub-groups of the population in Pennsylvania The Plain People The Plain People Agrarian communities Agrarian communities Rural residents Rural residents Complementary healthcare seekers Complementary healthcare seekers

27. Barriers to screening in subgroups

28. The Old Order Amish and Mennonites  Cost of test and subsequent treatment  Transportation and access

29. The Old Order Amish and Mennonites  Educational level  Reliance on non-allopathic healthcare  Community belief systems  Routine preventive care devalued  Technology  Avoid being unique  Advice from grandparents  Government aid

30. Other Plain Groups, Farmers, Rural Dwellers and Complementary healthcare groups  Cost  Transportation  Ease of accessibility  Distrust of government programs  Distrust of allopathic healthcare/technology

31. Removing the Barriers Personal relationship with the provider Personal relationship with the provider Patient education Patient education Free testing Free testing Portable process Portable process Incorporation into routine care Incorporation into routine care Viewing hearing screening as a standard of care Viewing hearing screening as a standard of care Relating early treatment to adult productivity Relating early treatment to adult productivity

32. Cultural Competence: The chameleon effect Home visits “Hitching posts” Personal relationship The teachable moment Informing multiple generations

33. Net results for outreach screening services: Decreasing disparity in healthcare services to population sub-groups (Healthy People 2010 goal) Decreasing disparity in healthcare services to population sub-groups (Healthy People 2010 goal) Increased screening to children at risk Increased screening to children at risk Increased awareness of importance of prevention, screening and early intervention among often marginalized groups Increased awareness of importance of prevention, screening and early intervention among often marginalized groups

34. Screening and Intervention Linked Screening followed by intervention in all subgroups Screening followed by intervention in all subgroups Intervention amenable Intervention amenable

35. Summary and Lessons Learned Research is Key Research is Key Identify and Overcome Barriers Identify and Overcome Barriers Recognize Cultural Diversities Recognize Cultural Diversities Program Requires Investment of Staff Time and Effort Program Requires Investment of Staff Time and Effort Develop Relationships Based on Trust Develop Relationships Based on Trust Communications Communications