A Medical Home A Medical Home for Children with Hearing Lossfor Children with Hearing Loss

Julia L. Hecht, M.D.,Julia L. Hecht, M.D.,

Deaf Access ProgramDeaf Access Program

Albuquerque, New MexicoAlbuquerque, New Mexico

The Medical Home ModelThe Medical Home Model

• Accessible

• Continuous

• Comprehensive

• Coordinated

• Family-centered

• Compassionate

• Culturally competent

Linking EHDI to the Linking EHDI to the Medical HomeMedical Home

Physician is key– 8 visits between birth and 18 months– Assess NBHS status – Negotiate the system– Help families with grief and acceptance

Life after DeafLife after Deaf

• Focus on language access and development– Eye contact– Facial expressions and gestures– Sign language– Spoken language

Comprehensive CareComprehensive 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

Physician as Safety NetPhysician 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

Developing a VisionDeveloping 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.

Tremendous PotentialTremendous Potential

A “Typical” Deaf FamilyA “Typical” Deaf Family

Cultural CompetenceCultural Competence

• Sociocultural model of deafness

• Recognize the value of learning ASL

• Emphasize communication, not necessarily speech

Family-centered CareFamily-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

Linking EHDI to the Linking EHDI to the Medical Home Using Medical Home Using

TelehealthTelehealth

GoalsGoals• 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

AABR #1

AABR #2

Dx ABR

No Hearing

Loss

Refer

Refer

coordinator

coordinator

Family with deaf child

PCP

CONSULTANT

VIA

TELEHEALTH

UNIVERSAL NEWBORN HEARING SCREENING

TELEHEALTH CONNECTIONS

FAMILY WITHEI PCP

FAMILY WITHPCP

DEAFNESS CONSULTANT

MD

OTHERFAMILY

FAMILY WITHEI

PCP SCHOOL

FAMILY WITH DEAF CHILD

RELATIONSHIPS ENHANCED BY TELEHEALTH

OTHERFAMILY

OTHERFAMILY

STEP HI -- EARLY INTERVENTION

PCP

COORDINATED TELEHEALTH CONNECTION

SCHOOL

ENT

AUDIOLOGY

GENETICS

JuanJuan• 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