1. What If Families Ran the EHDI System? 2005 EHDI Conference Atlanta, GA Marilyn Sass-Lehrer, Ph.D., Beth Benedict, Ph.D., Barbara Raimondo. J.D.

2. Current Status of EHDI Variation among and within states Variation among and within states –Guidelines for screening, assessment, referrals Variation in expertise of professionals Variation in expertise of professionals –Screeners, Audiologists, ENTs, Early Interventionists Variation in information provided Variation in information provided –Comprehensive, accuracy, bias Variation in resources available Variation in resources available –Many - few: different settings, different philosophies, different services Variation in Family Approach Variation in Family Approach –Family-Centered; Professional-Centered

3. One Familys Story: The Chows

4. What Research Tells us Watkins, Pittman, & Walden, 1999 Watkins, Pittman, & Walden, 1999 Luterman Kurtzer White, 1999 Luterman Kurtzer White, 1999 Folsom, Widen, Vohr et al. 2000 Folsom, Widen, Vohr et al. 2000 Isaacson, 2000 Isaacson, 2000 Sjobald, Harrison, Roush & McWilliam, 2001 Sjobald, Harrison, Roush & McWilliam, 2001 Robinshaw and Evans, 1999; 2000; 2001 Robinshaw and Evans, 1999; 2000; 2001 Young & Andrews, 2001 Young & Andrews, 2001 Roush & Harrison, 2002 Roush & Harrison, 2002 Meadow-Orlans, Mertens, Sass-Lehrer, 2003 Meadow-Orlans, Mertens, Sass-Lehrer, 2003 Sass-Lehrer, Croyle, Wainscott & Spencer, 2004 Sass-Lehrer, Croyle, Wainscott & Spencer, 2004 Hintermair, 2000; 2004 Hintermair, 2000; 2004 NCHAM, 2003-4 NCHAM, 2003-4 DesGeorges, 2003 DesGeorges, 2003 Gravel & McCaughey, 2004 Gravel & McCaughey, 2004 Kovarsky, Kurtzer-White & Maxwell, 2004 Kovarsky, Kurtzer-White & Maxwell, 2004 Young & Tattersall, JDSDE In press Young & Tattersall, JDSDE In press

5. What Families Want and Need Learning from Families The Screening Process The Screening Process Confirmation of Hearing Loss Confirmation of Hearing Loss Early Intervention Services Early Intervention Services Other Health Care Professionals Other Health Care Professionals How to Interact with Families How to Interact with Families How to Encourage and Support Families How to Encourage and Support Families How to Talk about Communication and Technology How to Talk about Communication and Technology Collaboration with Other Agencies Collaboration with Other Agencies

6. The Screening Process Convenience of Screening Convenience of Screening –Hospital, birthing center, pediatricians office Knowledgeable Screener Knowledgeable Screener –Sensitive, patient, encouraging –Clear recommendation Clear Information Clear Information –in print, video, online Follow up Support Follow up Support –Rescreen appointment –Transportation, other support –Financial support Collaboration with Pediatrician Collaboration with Pediatrician Welcomes later contact Welcomes later contact

7. Evaluation and Confirmation of Hearing Loss Timely and accessible Timely and accessible Expertise Expertise Knowledgeable Knowledgeable Honest - Unbiased Honest - Unbiased Sensitive Sensitive Hopeful Hopeful Good communicator Good communicator Time – patience Time – patience Resources & Support Resources & Support Connections Connections –Families –Other agencies Information sources –Health Care Providers

8. Barriers to Follow Up Limited economic resources (e.g., lack of insurance ) Limited economic resources (e.g., lack of insurance ) Family responsibilities Family responsibilities –Illness, childcare Work responsibilities Work responsibilities Transportation Transportation Quantity and availability of audiological assessments Quantity and availability of audiological assessments Lack of understanding of importance Lack of understanding of importance Language differences Language differences Illiteracy Illiteracy Poor communication Poor communication Poor relationships Poor relationships Lack of cultural sensitivity Lack of cultural sensitivity –Folsom, Widen, Vohr et al., 2000; Isaacson, 2000; NCHAM, 2003; Sass- Lehrer, 2004; Young & Andrews, 2001; Young & Tattersall, in press.

9. Referral and Early Intervention Services Family-Centered – Relationship- Based Family-Centered – Relationship- Based Expertise in hearing loss Expertise in hearing loss Culturally sensitive Culturally sensitive Comprehensive services Comprehensive services Flexible Flexible Collaborative Collaborative Parent-Parent Experiences Parent-Parent Experiences Deaf and Hard of Hearing Adults Deaf and Hard of Hearing Adults Parent Support Groups Parent Support Groups

10. What Can We Do? Audiologists Audiologists Health Care Specialists Health Care Specialists Developmental Specialists Developmental Specialists Families Families Deaf Community Deaf Community Educators Educators Administrators Administrators Researchers Researchers Others? Others?

11. What is Needed to Improve System System-wide standards and guidelines of quality System-wide standards and guidelines of quality On-going training of personnel On-going training of personnel –Up to date information –Accurate Information (comprehensive & balanced) –Sensitivity Families in key positions Families in key positions Early intervention that is family-centered, interdisciplinary, comprehensive, includes deaf adults, culturally responsive, developmentally appropriate, assessment-based Early intervention that is family-centered, interdisciplinary, comprehensive, includes deaf adults, culturally responsive, developmentally appropriate, assessment-based Focus on language and communication development Focus on language and communication development

12. Centers of Expertise Providing comprehensive services Providing comprehensive services Family-Centered Family-Centered Family Support Family Support Collaboration with Medical and Educational Collaboration with Medical and Educational Clear communication Clear communication Encourage active family participation Encourage active family participation Information and Resources Information and Resources Roush et al., Roush et al.,

13. An EHDI Familys Dream

14. Listen to Families It is imperative for professionals who are creating systems for Early Hearing Detection to understand and learn from parents experiences in order to improve the process –Janet DesGeorges (2003)