The Nexus of Medicine & Deafness:

Transcription

1 The Nexus of Medicine & Deafness: Report of Experience from a Deaf Pediatrician Working with Families in a Deaf Medical Home Robert C. Nutt, MD University of Rochester Medical Center (Rochester, NY) 15TH ANNUAL EHDI Meeting San Diego, California Town and Country Resort March 13-15, 2016 Track: Medical Home

2 Abstract Dr. Robert Nutt is a pediatrician (Rochester, New York) who cares for families in both a primary pediatrics clinic and a developmental-behavioral pediatrics specialty clinic. Dr. Nutt s lifelong experience with bilateral hearing loss has made him a role model for his patients with hearing loss and their families. Dr. Nutt s proficiency in spoken English and American Sign Language (ASL) allow him to connect in unique ways with families and children. Dr. Nutt will describe the differences between four permutations of parent-child dyads (Hearing/Deaf parents, Hearing/Deaf child). This session will provide unique insight into the complexities faced by parents and professionals providing primary care for families affected by hearing loss with an emphasis on interdisciplinary, childcentered decision making.

3 Objectives Understand the importance of role models for children who are Deaf/Hard of Hearing: My Story Describe four permutations of parent-child dyads Appreciate the complexities parents and professionals face when providing primary care for families affected by hearing loss with an emphasis on interdisciplinary, child-centered decision making.

4 Rochester, New York A demographics study released in 2012 by the National Technical Institute for the Deaf at Rochester Institute of Technology: Nearly 20,000 deaf and hard-of-hearing individuals younger than 65 live in the greater Rochester area Approximately 3.7 percent of the Rochester area's population of 1.1 million is deaf or hard of hearing, compared with 3.5 percent overall in the U.S.

5 My Ears, My Eyes, My Path from a stubborn toddler to a deaf physician

6 Though some of my adaptations are deliberate, planned and some are learned through trial and error, most have occurred by themselves, unconsciously, by reprogrammings and adaptations of which I know nothing. - Oliver Sacks, An Anthroplogist On Mars

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8 Adaptation Many people have expressed praise for what I have accomplished, I walk away thinking: How else would I have done it? For those of us who are up against tremendous adversity, adaptation is essential. One s ability to adapt determines their success sometimes the system itself needs to be changed in order to achieve a broader success.

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10 K 12 Dartmouth College Geisel School of Medicine (Dartmouth) National Center for Hearing and Speech Research at RIT NTID Laboratory Science & Technology Program Pediatric Residency General Pediatrics Fellowship Developmental-Behavioral Pediatrics Fellowship

11 How I See Things

12 3 Types of People

13 Identity

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15 Communication

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17 Communication Opportunities Creating a Communication Profile for Every Child

18 Language

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20 Socialization

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22 Visualize the child s life at different stages

23 Patient Centered Medical Home AAP 7 principles of a medical home: personal physician physician-directed medical practice whole-person orientation coordinated care quality and safety enhanced access appropriate payment IOM definition is care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions (IOM definition)

24 Parent Child Dyads

25 Hearing Parents Hearing Child Reynaldo (14 yo)

26 Deaf Parents Hearing Child Max & Mason (3y, 4y) Pabitra, Bishnu, Dinesh (17y, 12y, 9y) Christobelle (6y)

27 Hearing Parents Deaf Child

28 Deaf Parents Deaf Child River, 13 months Mevea, 16 months

29 Deaf +

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31 Understanding strengths and potential contributions opens door for unique, unprecedented ideas. Focusing on limitations only further restricts that person s potential. Identify Barriers Come up with Solutions. Be creative find a way, or make a way! Foster adaptation

32 General Recommendations Strengths and potential contributions open doors for unique ideas Focusing on limitations only further restricts that person s potential Identify Barriers Come up with Solutions Be creative find a way, or make a way! Foster adaptation

33 Recommendations for Teams See the Child FIRST, before all else Don t underestimate a children s drive for adaptation and success It s usually easier to start and go forward than to go back Encourage children and families not to give up on a given approach, balanced with a willingness to try new things Avoid holding children hostage to achieve desired outcomes Offer children every opportunity to gain skills that will enable them to reach their full developmental potential

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