A National Technical Assistance System for EHDI Programs

Number of Hospitals Doing Universal Newborn Hearing Screening

3 3 11 26 60 120243

462

712

934

1384

0

200

400

600

800

1000

1200

1400

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Status of Universal Newborn Hearing Screeningin the United States

.

.Percentage of Births

Screened

90%+

21 - 50%1 - 20%

3

51 - 90%

Tremendous Progress During the Last Decade

• Less than 30 hospitals with UNHS in 1993; compared with almost 1400 in May of 2000

• 2 million babies are screened every year prior to discharge

• 33 states have passed newborn hearing screening legislation

• The federal government is providing financial support to encourage expansion

The Other Side of the Coin . . . .

• 2,800 hospitals are not yet screening for hearing loss

• 2 million babies are NOT screened every year prior to discharge

• Many states which have passed legislation have not yet implemented it completely

• Only 9 states (accounting for 7% of the births) have implemented reasonable state-wide programs

Status of EHDI Programs in the United States

• Universal Newborn Hearing Screening

• Effective Tracking and Follow-up as a part of the Public Health System

• Appropriate and Timely Diagnosis of the Hearing Loss

• Prompt Enrollment in Appropriate Early Intervention

• A Medical Home for all Newborns

• Culturally Competent Family Support

• Elimination of geographic and financial barriers to service access

Efforts by the Federal Government toPromote Early Identification of Hearing Loss

• Federal funding for research and program development

• NIH Consensus Development Conference in 1993

• Consortium for Universal Newborn Hearing Screening funded in 1993

• Marion Downs National Center for Infant Hearing Established in 1996

• National EHDI Technical Assistance System Established in 2000

Goal of the National EHDI Technical Assistance System

• Every child born with a hearing loss will be identified before 3 months of age and provided with timely and appropriate early intervention before 6 months of age

• Every family of an infant with hearing loss will receive culturally competent family support as desired

• All newborns will have a medical home

• State will have tracking and data management systems which are linked to appropriate public health information systems

National EHDI Technical Assistance System

• EHDI Network members located in each of ten geographic regions

Region I(38% currently bornin UNHS hospitals)

Antonia MaxonB

Region IV(46% currently bornin UNHS hospitals)

Faye McCollister

Region III(49% currently bornin UNHS hospitals)

Sean Kastetter

Region VI(38% currently born in UNHS hospitals)

Karen DittyPatti Martin

Region VII(33% currently bornin UNHS hospitals)

Les Schmeltz

Region IX(23% currently bornin UNHS hospitals)

Randi WinstonYusnita Weirather

Region II(16% currently bornin UNHS hospitals)

Beth Prieve

Region V(26% currently bornin UNHS hospitals)

Karen Munoz

Region X(21% currently bornin UNHS hospitals)

Curt Whitcomb

Region VIII(91% currently bornin UNHS hospitals)

Terry Foust

National EHDI Assistance Network

-

VIII

IX

VII

VI

V

IV

III

II

I

X

Guam, American Samoa,Marshall Islands, Palau,

No. Mariana Islands,Fed. Micronesia

Puerto RicoVirgin Islands

= indicates the locations of MCHB Regional Offices

Examples of Network Activities

• Training of Trainers Workshop (October 2000)

• Individualized TA with state EHDI programs

• NEC*TAS Webcast for Part C Programs

• MCHB Grant Assistance Workshop May 2001

• Regional workshops on Diagnostic ABR (planned for Oct 2001)

Regional Workshops on Audiological Diagnosis

• First year will focus on diagnostic ABR (subsequent years on behavioral techniques and hearing aid fitting)

• Online materials for mastery learning prior to workshops

• Hands-on small group workshop

• Supervised practicum in local area following workshop

National EHDI Technical Assistance System (continued)

• EHDI Network members located in each of the MCHB regions

• Information dissemination and training

Support for Program Implementation

• Step-by-step Implementation Guide

• Distributed by MCHB to all birthing facilities in the US

• Down load from the web at www.infanthearing.org

• Linked to examples of materials from existing programs

Contents of Implementation Guide

• Enlisting support

• Determining a protocol

• Dealing with procedural issues

• Communicating with parents, physicians, etc.

• Training screeners

• Keeping referral rates low

• Managing data and follow-up

• Financing the program

• Reporting

• Completing diagnostics

• Coordinating with state systems

Sound Ideas Newsletter

• Published Quarterly

• Topical articles, suggestions for program improvement

• Upcoming events

• Available online or mailed

National EHDI Technical Assistance System (continued)

• EHDI Network members located in each of the MCHB regions

• Information dissemination and training

• Web site (www.infanthearing.org)

National EHDI Technical Assistance System (continued)

• EHDI Network members located in each of the MCHB regions

• Information dissemination and training

• Web site (www.infanthearing.org)

• Collaboration with other groups and agencies

National EHDI Technical Assistance System (continued)

• Groups actively promoting and assisting with EHDI activities– AG Bell, NCHH, ASHA, AAA, JCIH, AAP, ASDC

• Relevant groups whose main focus is elsewhere– MCHB Regional Staff, SKI-HI, NEC*TAS, Early Head

Start, 0-3, Family Voices, NCCC, KidsNET, STC, AMCHP, AHEC

Collaboration with Other Groups and Agencies