What If Families Ran the EHDI System?

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 • Guidelines for screening, assessment, referrals • Variation in expertise of professionals • Screeners, Audiologists, ENTs, Early Interventionists • Variation in information provided • Comprehensive, accuracy, bias • Variation in resources available • Many - few: different settings, different philosophies, different services • Variation in Family Approach • Family-Centered; Professional-Centered

3. One Family’s Story: The Chows

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

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

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

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

8. Barriers to Follow Up • Limited economic resources (e.g., lack of insurance ) • Family responsibilities • Illness, childcare • Work responsibilities • Transportation • Quantity and availability of audiological assessments • Lack of understanding of importance • Language differences • Illiteracy • Poor communication • Poor relationships • 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 • Expertise in hearing loss • Culturally sensitive • Comprehensive services • Flexible • Collaborative • Parent-Parent Experiences • Deaf and Hard of Hearing Adults • Parent Support Groups

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

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

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

13. An EHDI Family’s 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)