1. Finding solutions to Lost to Follow-up on a state level 2005 National EHDI Conference Atlanta, Georgia Anne M. Jarrett, MA- CCCA Follow-up Consultant Michigan Department of Community Health/ Early Hearing Detection and Intervention Program

2. What documentation do we need? Need documentation on…… All Birth Certificates All Hearing Screens All Referral Outcomes rescreen or DX all Missed, Incomplete, BI and U fails All Hearing Losses (complete DX) All intervention services All intervention outcomes …..if not all lost to follow-up

3. 3 Lost to Follow-up statuses No Test vs. Refuse vs. No Contact Lost to FU is defined by capability of whoever defining (provider) 1# Not able to be tested still in NICU ………outside EHDI time frame Other medical issues taking priority……..outside EHDI time frame Died 2# Family refuses (after x# of attempts) Refuse (flat out refusal) No reply scheduling (family or physician) No shows 3# Ca not contact with available resources Wrong phone: no phone, disconnected, misinformation Wrong address: no address, moved no forwarding, misinformation Wrong physician No secondary contact (family or physician) HIPAA preventing obtaining further follow-up tracking information

4. Follow-up Pieces Multi Source Providers Birth Screen Rescreen DX EI Medical Home And Family State Other Registries Community Agencies

5. How many reasons for lost to FU? More importantly: How do you solve? Provider – 2 slides, 10+ reasons Family – 2 slides, 20+ reasons Medical Home – 2 slides, 10+ reasons Community – 1 slide, 10+ reasons State – 2 slides, 20+ reasons Many reasons but how do you solve? Slides 7-15

6. Breakdown (Providers) Did not give out verbal and written instructions (cultural and literacy) No continuity to referral providers Referrals not made Referral provider has no knowledge of need for referral service No capacity for providing FU management No Discharge planer, No follow-up consultant, No consulting audiologists No designated referral site Refer site is not a one stop shopping for rescreen and Dx

7. Breakdown (Providers) Protocols are not followed or developed Where referred, appts made, printed verbal information to families Full contact information not obtained Poor Accessibility Location – easy to find flexibility of appointment times Referral but outside of system (ENT, public health)

8. Breakdown (Family) Family didnt remember - didnt think appt was important Did not know who to contact Literacy or cultural breakdown Family does not want to be found Other medical needs – hearing lower priority Other family needs – hearing lower priority (Conflicts with family/work/moving): daycare, back to work Not priority at all for family – not important 5 th child and family feels unnecessary Know other infants that failed and everything fine and too much hassle No medical home (not assigned yet) Waiting for referral No financial means – knowledge of where to go for help

9. Breakdown (Family) Housing problems Phone Services – paying bills No transportation Adoption, foster-care Migrant, homeless, non-US/state citizen Postpartum depression Hassle of completing appts (multi-appointments) New living situation: married (new name changes), domestic violence, adolescent pregnancy, maternal death

10. Breakdown (Medical Home) Communicating with wrong medical home – no updated information given back Attending verses follow-up Referral outside the system (ENT) or provide service Not aware of reporting needs Late referral (natural sleep of child, repeat testing) Not part of standard baby well check Not aware of need (never received results or feedback no show) Not sure where to get the screening information No time to get the information back

11. Breakdown (Medical Home) Will not refer, medically unnecessary Dont know where to refer Feel that others are taking care of hearing issues Not a high priority Too busy to understand the national and state system/guidelines

12. Breakdown (Community) Not part of standard program questions WIC, MSS/ISS, Public Health Clinics, Adoption Agencies, Domestic Violence Shelters, Foster Care Culture awareness (Arab Chaldean Council, Native American Tribes, Migrant Clinics) If screening, not aware to reporting needs Not aware of EHDI program and system

13. Breakdown (State) No integration from database (poor collection from other databases) Vital Records (birth, death, adoption) Not integrated to tap into other health services family using Immunizations, Lead testing, Maternal Support, WIC No resources to help providers Directories Materials/Literature Tracking paths Helping Counties get organized not just providers FERPA issues, no release of information No sharing agreements

14. Breakdown (State) Not providing enough community development activities Prenatal Make known everyones capacity, special issues, and needs from others Help providers develop best practice protocols Community awareness and ability to encourage Feedback on system Professional Organizations: Physician groups (Chapter Champion), Nurses, ENT, Audiologists, Hospital Administrators, Early Interventionists Other Programs: WIC, MSS/ISS, Public Health Clinics, Adoption Agencies, Domestic Violence Shelters, Foster Care Culture awareness (Arab Chaldean Council, Native American Tribes, Migrant Clinics)

15. How do you calculate lost to FU? Make a difference in reporting state data and progress births, screens, outcomes, DX HL, EI services exclude vs include 1# Not able to be tested 2# Family refuses 3# Cannot contact When are reports run (monthly calendar or DOB) Does the number reflect the state effort?, state population?

16. Data Collection (not just results but referrals) Reporting: All results timely, accurate and complete results birth, screen, outcome, intervention Testing Result Did testing occur If not why, what was done to attempt to test Capacity of testing Referral Status What was said/given to parents What connections were made Appt made, where, when Capacity of ensuring FU

17. Background on Michigan Data Births – ~130,000 (8 th largest birthing state) Screening 92% (~120,000) Missed & Incomplete (8%, ~10,000) Referred (2.7%, ~3,500) (total referred 13,600) Outcomes/Diagnostic reported (17% missed, 65% referred) (~3,900 reported back) Hearing Loss reported ~200 (Part B 250y) EI Referral = 100% Documentation back from EI ~55%

18. Michigans Strategy Database development and integration Collection from multi-source providers Action trees with timeouts and letter generation Letter available by e-mailing jarretta@michigan.govjarretta@michigan.gov Letters always being revised based on needs Provide Web access Child health Integration – (MCIR) Integration Vital Records and Metabolic Birth Defects, CSHCS,

20. www.michigan.gov/ehdi Reporting forms: Obtain on Web Page (not Metabolic and EBC) See other MI presentation Fri 2-3 Room C Secondary Contact: Obtain on Web Page Directories: Obtain on Web Page Guidelines: Obtain on Web Page Community Development See other MI presentation (Friday 9-10 Room D) Excellent collection of articles on Follow-Through related to Early Identification www.nlm.nih.gov/pubs/cbm/hearing_early_id.html

21. CONTACT: Yasmina Bouraoui, MPH, Program Coordinator 517/335-9398 bouraouiy@michigan.govbouraouiy@michigan.gov Follow-Up Consultant Anne Jarrett, MA, CCC-A 517/335-8878 jarretta@michigan.gov Community Development Consultant Debby Behringer, RN, MSN 517/335-8875 behringerd@michigan.gov Audiology Consultant Lorie Lang, MA, CCC-A 517/335-9125 langlo@michigan.gov Parent Consultant Amy Lester, BA 517/335-8273 lestera@michigan.gov Data Maintenance Consultant Erin Estrada, BA 517/335-8916 estradae@michigan.gov Data Analyst Consultant Paul Kramer, BA 517/335-9720 kramerpa@michigan.gov General Office Assistance Ebone Thomas 517/335-8955 thomase@michigan.gov 517/335-8884, TTY 517/335-8246, FAX 517-335-8036