1. Opening Session: Collaboration is Key! Kathryn Piziali Nichol, MD, FAAP American Academy of Pediatrics February 18, 2004

2. Introduction to the AAP – An Overview Founded in 1930 Founded in 1930 Mission: To attain optimal physical, mental and social health and well-being for all infants, children, adolescents and young adults. To this purpose, the AAP and its members dedicate their efforts and resources. Mission: To attain optimal physical, mental and social health and well-being for all infants, children, adolescents and young adults. To this purpose, the AAP and its members dedicate their efforts and resources.

3. Introduction to the AAP – An Overview Membership: 57,000 members in the United States, Canada and Latin America Membership: 57,000 members in the United States, Canada and Latin America The main efforts of the AAP are advocacy for children and childrens issues and educational offerings for pediatricians and other pediatric health care providers The main efforts of the AAP are advocacy for children and childrens issues and educational offerings for pediatricians and other pediatric health care providers

4. AAP Involvement in EHDI Issues EHDI Issues Center Stage – Lou Cooper, MD, 2002 EHDI Issues Center Stage – Lou Cooper, MD, 2002 EHDI Issues – Overseen by Task Force on Improving the Effectiveness of Newborn Hearing Screening, Diagnosis and Intervention and implemented by Chapter Champions EHDI Issues – Overseen by Task Force on Improving the Effectiveness of Newborn Hearing Screening, Diagnosis and Intervention and implemented by Chapter Champions

5. AAP Involvement in EHDI Issues AAP just one part of the larger efforts that have been ongoing related to EHDI in the past decade. AAP just one part of the larger efforts that have been ongoing related to EHDI in the past decade. And, delighted to be collaborating with such committee organizations, agencies, and individuals on behalf of children identified with hearing loss. And, delighted to be collaborating with such committee organizations, agencies, and individuals on behalf of children identified with hearing loss. Progress could not have been as successful if any one group worked on this issue alone. Progress could not have been as successful if any one group worked on this issue alone.

6. AAP Involvement in National EHDI Conference 2002: 32 Chapter Champions attended the national EHDI Conference in Vienna, VA 2002: 32 Chapter Champions attended the national EHDI Conference in Vienna, VA 2003: 37 Chapter Champions attended the national EHDI Conference in Atlanta, GA 2003: 37 Chapter Champions attended the national EHDI Conference in Atlanta, GA 2004: 40 Chapter Champions in attendance at this conference 2004: 40 Chapter Champions in attendance at this conference Currently a network of 60 Chapter Champions is in existence representing all but one state Currently a network of 60 Chapter Champions is in existence representing all but one state

7. Three Years of Progress and Successes In 2000, 32 states had passed legislation for universal newborn hearing screening In 2000, 32 states had passed legislation for universal newborn hearing screening In 2004, 37 states have legislation on universal newborn hearing screening In 2004, 37 states have legislation on universal newborn hearing screening

8. Three Years of Progress and Successes 85% - 90% of infants are being screened in hospitals at birth today as compared with approximately 44% being screening in 2000. 85% - 90% of infants are being screened in hospitals at birth today as compared with approximately 44% being screening in 2000. Less precise numbers about the number of hospitals doing universal newborn hearing screening are available, however, in 2002 nearly 2,500 hospitals were conducting screening on a regular basis, as compared with about 1,800 hospitals conducting screening in 2000. Less precise numbers about the number of hospitals doing universal newborn hearing screening are available, however, in 2002 nearly 2,500 hospitals were conducting screening on a regular basis, as compared with about 1,800 hospitals conducting screening in 2000.

9. Three Years of Progress and Successes In January 2000, less than 40% of infants were being screened prior to discharge, as compared with almost 85% of newborns being screened for hearing prior to discharge in January 2002. In January 2000, less than 40% of infants were being screened prior to discharge, as compared with almost 85% of newborns being screened for hearing prior to discharge in January 2002. Data on the percentage of children lost to follow up after the initial hearing screening is sparse and somewhat unreliable. This is an area that needs prioritization going forward. Data on the percentage of children lost to follow up after the initial hearing screening is sparse and somewhat unreliable. This is an area that needs prioritization going forward.

10. AAP Progress Over Past Three Years Active and influential Task Force leadership Active and influential Task Force leadership Development and dissemination of more than 50,000 copies of the algorithm on EHDI guidelines for medical home providers Development and dissemination of more than 50,000 copies of the algorithm on EHDI guidelines for medical home providers Development of patient chart companion piece underway Development of patient chart companion piece underway Established network of 60 Chapter Champions across the U.S. Established network of 60 Chapter Champions across the U.S.

11. AAP Progress Over Past Three Years Comprehensive legislative packet on universal newborn hearing screening (and beyond!) Comprehensive legislative packet on universal newborn hearing screening (and beyond!) Integration of EHDI issues, concepts and guidelines into Continuing Medical Education programming Integration of EHDI issues, concepts and guidelines into Continuing Medical Education programming CME Teleconference Series on EHDI for pediatric primary care providers CME Teleconference Series on EHDI for pediatric primary care providers Mini-grant programs for Chapter Champions Mini-grant programs for Chapter Champions

12. AAP Progress Over Past Three Years Visiting Professorship/lectureship opportunities at the state level Visiting Professorship/lectureship opportunities at the state level Integration of EHDI issues and activities into the medical home initiative at national and state levels Integration of EHDI issues and activities into the medical home initiative at national and state levels Collaboration with national and state-based organizations, agencies, and policymakers Collaboration with national and state-based organizations, agencies, and policymakers

13. Summary Multidisciplinary collaboration has been key! Multidisciplinary collaboration has been key! Moving beyond screening to effective and efficient tracking, follow up, and early intervention is imperative. In some states, approximately 50% of infants who refer from inpatient screening are lost to follow-up. Moving beyond screening to effective and efficient tracking, follow up, and early intervention is imperative. In some states, approximately 50% of infants who refer from inpatient screening are lost to follow-up. Physicians can serve as the medical home for infants and young children in coordination of care for follow-up, diagnostic evaluations and other services. Physicians can serve as the medical home for infants and young children in coordination of care for follow-up, diagnostic evaluations and other services.

14. Summary Were not done yet…. Were not done yet…. Thank you! Thank you!