A Medical Home for Children with Hearing Loss

1. A Medical Home for Children with Hearing Loss Julia L. Hecht, M.D., Deaf Access Program Albuquerque, New Mexico

2. The Medical Home Model • Accessible • Continuous • Comprehensive • Coordinated • Family-centered • Compassionate • Culturally competent

3. Linking EHDI to the Medical Home Physician is key • 8 visits between birth and 18 months • Assess NBHS status • Negotiate the system • Help families with grief and acceptance

4. Life after Deaf • Focus on language access and development • Eye contact • Facial expressions and gestures • Sign language • Spoken language

5. Comprehensive Care • Referrals for infants / children who are newly-diagnosed with hearing loss • Audiologist • Hearing Aid Provider • Early Intervention / StepHi • Appropriate School placement • Other families • Deaf adult role models • Medical Specialists: Genetics / Dysmorphology, ENT, Ophthalmology, Others as needed

6. Physician as Safety Net • Coordination of services • Parent satisfaction with services / advocacy • Are parents lost in the politics of deafness? • Risk for additional health problems including developmental delays • Ongoing evaluation of language development • Impact on the family

7. Developing a Vision Encounters with a community of deaf adults are important for understanding the “deaf world” and the tremendous potential that babies with hearing loss possess.

8. Tremendous Potential

9. A “Typical” Deaf Family

10. Cultural Competence • Sociocultural model of deafness • Recognize the value of learning ASL • Emphasize communication, not necessarily speech

11. Family-centered Care • Recognize the range of options for intervention for hearing loss • Reinforce development of the “whole child” • Support family through the grief and acceptance process throughout the child’s lifetime • Support family choices and encourage openness to change

12. Linking EHDI to the Medical Home Using Telehealth

13. Goals • Support families of child who “refers” through the NBHS process • Support the primary physician in developing a medical home for the child with hearing loss • Educate physicians about the components of a medical home for deaf • Link physician with community resources • Enhance relationships between members of the multidisciplinary team

14. UNIVERSAL NEWBORN HEARING SCREENING AABR#1 Refer coordinator AABR#2 No Hearing Loss Refer coordinator Dx ABR Family with deaf child VIA CONSULTANT PCP TELEHEALTH

15. TELEHEALTH CONNECTIONS FAMILY WITH EI PCP FAMILY WITH PCP DEAFNESS CONSULTANT MD OTHER FAMILY FAMILY WITH EI SCHOOL PCP

16. RELATIONSHIPS ENHANCED BY TELEHEALTH ENT GENETICS FAMILY WITH DEAF CHILD OTHER FAMILY AUDIOLOGY OTHER FAMILY PCP SCHOOL STEP HI -- EARLY INTERVENTION COORDINATED TELEHEALTH CONNECTION

17. Juan • Spanish speaking family • Diagnosed early • Deaf sister • In “total communication” preschool • Behavorial problems, tantrums • Referred to medical home • Revealed sister has progressive visual impairment • Family education • Usher syndrome • Behavior and family dynamic / communication • Preparation for future vision loss