families with deafness: providing a pediatric medical home rachel st. john, md, cmhc director: kids...

Families with Deafness: Families with Deafness: Providing a PediatricProviding a Pediatric

Medical HomeMedical Home

Rachel St. John, MD, CMHCRachel St. John, MD, CMHC

Director: Kids Clinic for the Deaf, Georgetown University Director: Kids Clinic for the Deaf, Georgetown University HospitalHospital

Visiting Professor: Gallaudet University, Dept. of Visiting Professor: Gallaudet University, Dept. of CounselingCounseling

General BackgroundGeneral Background

Incidence of congenital hearing loss is Incidence of congenital hearing loss is

0.5-3/1000 live births0.5-3/1000 live births

90% of deaf children born to hearing 90% of deaf children born to hearing parentsparents

90% of deaf parents have hearing children90% of deaf parents have hearing children

Why a Medical Home?Why a Medical Home?

Large cultural communities tend to Large cultural communities tend to congregate in urban areas, especiallycongregate in urban areas, especially

if residential school/university in areaif residential school/university in area

* Washington DC metropolitan area deaf * Washington DC metropolitan area deaf residents estimated in “hundreds of residents estimated in “hundreds of thousands”thousands”


Legal Mandates:Legal Mandates:

-Americans with Disabilities Act (1990)-Americans with Disabilities Act (1990)

-DHHS Office for Civil rights policy -DHHS Office for Civil rights policy

statement regarding Low English statement regarding Low English

Proficiency patients (2000)Proficiency patients (2000)

Parents are primary historians for young Parents are primary historians for young children – good communication and children – good communication and cultural awareness criticalcultural awareness critical


Parents often seek advice from health Parents often seek advice from health professionals related to areas outside professionals related to areas outside medical arena – familiarity with community medical arena – familiarity with community resources can be very helpfulresources can be very helpful

Areas of Decision-MakingAreas of Decision-Making

LANGUAGELANGUAGE

HEARING AMPLIFICATIONHEARING AMPLIFICATION

CULTURE & PSYCHOSOCIALCULTURE & PSYCHOSOCIAL

MEDICAL CONSIDERATIONSMEDICAL CONSIDERATIONS

LANGUAGELANGUAGE

Communication/Education ModesCommunication/Education Modes

SIGNED (ASL, SEE)SIGNED (ASL, SEE)

ORAL (cued speech, speech)ORAL (cued speech, speech)

TOTAL COMMUNICATIONTOTAL COMMUNICATION

BI-BIBI-BI

(No single “best-fit” answer – each family (No single “best-fit” answer – each family has unique set of circumstances)has unique set of circumstances)

Behind-The-Ear AidsBehind-The-Ear Aids

BAHABAHA(Bone-Anchored Hearing Aid)(Bone-Anchored Hearing Aid)

Conductive hearing Conductive hearing lossloss

Previous surgery or Previous surgery or malformation malformation prevents use of prevents use of conventional aidconventional aid

Screw implanted in Screw implanted in mastoid bone mastoid bone connects to external connects to external processorprocessor

Cochlear ImplantCochlear Implant

FM SYSTEMFM SYSTEM


Again, no single “best-fit” option - Again, no single “best-fit” option - educated choices best made by evaluating educated choices best made by evaluating child’s form of deafness, family context, child’s form of deafness, family context, and social environmentand social environment

CULTURE & CULTURE & PSYCHOSOCIALPSYCHOSOCIAL

FACTORSFACTORS

Access to ResourcesAccess to Resources

Presence of Deaf communityPresence of Deaf community

Parental expectationParental expectation

Family MilieuFamily MilieuDeaf-of-Hearing:Deaf-of-Hearing:

*may have guilt, grief, sense of loss*may have guilt, grief, sense of loss

*potential unrealistic expectation/denial*potential unrealistic expectation/denial

*variable accessibility to resources*variable accessibility to resources

-geographic isolation-geographic isolation

-SES-SES

-education-education

Family MilieuFamily MilieuDeaf-of-Deaf:Deaf-of-Deaf:

*may be thrilled!!*may be thrilled!! *multi-generational: strong cultural*multi-generational: strong cultural heritageheritage *exposed to intact first language from*exposed to intact first language from birth – reduces sense of urgency forbirth – reduces sense of urgency for educational decision makingeducational decision making

MEDICAL CONSIDERATIONSMEDICAL CONSIDERATIONS

Medical ConsiderationsMedical ConsiderationsInitial considerations:Initial considerations: *PMH: TORCH *PMH: TORCH (CMV),(CMV), anoxia, ECMO, ototoxic anoxia, ECMO, ototoxic

drugs, hyperbili, etc.drugs, hyperbili, etc. *PE: dysmorphism, auricular or preauricular*PE: dysmorphism, auricular or preauricular distortiondistortion

Genetics referralGenetics referral *based on FH*based on FH *connexin 26*connexin 26

Audiology referralAudiology referral *report to state*report to state *sedated BAER*sedated BAER *recommendations for amplification*recommendations for amplification and follow-upand follow-up

Medical Considerations (cont)Medical Considerations (cont)

Coordinating SubspecialistsCoordinating Subspecialists

*syndrome-related deafness often requires multiple*syndrome-related deafness often requires multiple

subspecialist caresubspecialist care

Specific Medical ConsiderationsSpecific Medical Considerations

*often require increased ENT services*often require increased ENT services

*preventative care for cochlear implant patients*preventative care for cochlear implant patients

KIDS CLINIC FOR THE DEAFKIDS CLINIC FOR THE DEAF

KCD – The Medical HomeKCD – The Medical Home

ENVIRONMENTENVIRONMENT::

-pediatrician fluent in ASL: direct rapport-pediatrician fluent in ASL: direct rapport with families, preserves confidentialitywith families, preserves confidentiality -medical interpreter present for non--medical interpreter present for non- physician encounters (billing, check-in,physician encounters (billing, check-in, nursing screening)nursing screening) -dedicated TTY line-dedicated TTY line -staff exposure to Deaf culture via workshops-staff exposure to Deaf culture via workshops -HIPAA-compliant email communication system -HIPAA-compliant email communication system for non-medical issuesfor non-medical issues


CONSULTATIONCONSULTATION (often deaf children of (often deaf children of hearing parents): hearing parents):

*language choices*language choices

*E.I. Part C state coordinators*E.I. Part C state coordinators

*audiology support*audiology support

*school options*school options

*appropriate psychoeducational testing*appropriate psychoeducational testing

resources resources


SPECIFIC MEDICAL CARE SITUATIONSSPECIFIC MEDICAL CARE SITUATIONS:: -cochlear implants: appropriate vaccines,-cochlear implants: appropriate vaccines, coordinating with audiology/ENT,coordinating with audiology/ENT, monitoring language milestonesmonitoring language milestones -syndromic deafness: coordinating-syndromic deafness: coordinating subspecialty caresubspecialty care -normal development awareness for-normal development awareness for bilingual/trilingual householdsbilingual/trilingual households


EDUCATIONEDUCATION::

-Community workshops-Community workshops

-Involvement at local deaf-education -Involvement at local deaf-education

schools (i.e. Back-To-School night)schools (i.e. Back-To-School night)

-Grand Rounds lectures at area hospitals-Grand Rounds lectures at area hospitals

-Involvement of medical students and-Involvement of medical students and

residents fluent in ASL in clinicalresidents fluent in ASL in clinical

and educational activitiesand educational activities


RESOURCE COLLABORATIONRESOURCE COLLABORATION::

-Baby Watch-Baby Watch™™: continuity of care: continuity of care

-Georgetown Patient and Physician -Georgetown Patient and Physician

Advocacy department: interpreter Advocacy department: interpreter

services for hospitalservices for hospital

-Gallaudet Interpreting Service – medical-Gallaudet Interpreting Service – medical

interpreterinterpreter

-National Association of the Deaf-National Association of the Deaf

-Center for Families in Transition-Center for Families in Transition

REFERENCESREFERENCES

Acclaim Clipart : Acclaim Clipart : www.acclaimclipart.comwww.acclaimclipart.com

East Melbourne Hearing Research Group: East Melbourne Hearing Research Group: http://www.medoto.unimelb.edu.au/index.htmhttp://www.medoto.unimelb.edu.au/index.htm

Faulconbridge and Bowdler, Hearing Aids:Faulconbridge and Bowdler, Hearing Aids:

http://www.orl-baohns.org/public/hearingaids.htmhttp://www.orl-baohns.org/public/hearingaids.htm

Gallaudet University: Gallaudet University: www.gallaudet.eduwww.gallaudet.edu

““Genetics Evaluation Guidelines for the Etiologic Genetics Evaluation Guidelines for the Etiologic Diagnosis of CongenitalDiagnosis of Congenital

Hearing Loss”: ACMG statement, vol 4, no 3, Hearing Loss”: ACMG statement, vol 4, no 3, May/June 2002May/June 2002

““What Is A Cochlear Implant”: What Is A Cochlear Implant”: http://www.glanclwyd.demon.co.uk/audiology/cochinf.htmhttp://www.glanclwyd.demon.co.uk/audiology/cochinf.htm

families with deafness: providing a pediatric medical home rachel st. john, md, cmhc director: kids...

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