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Families with Deafness: Providing a Pediatric Medical Home

Families with Deafness: Providing a Pediatric Medical Home. Rachel St. John, MD, CMHC Director: Kids Clinic for the Deaf, Georgetown University Hospital Visiting Professor: Gallaudet University, Dept. of Counseling. General Background. Incidence of congenital hearing loss is

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Families with Deafness: Providing a Pediatric Medical Home

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  1. Families with Deafness: Providing a PediatricMedical Home Rachel St. John, MD, CMHC Director: Kids Clinic for the Deaf, Georgetown University Hospital Visiting Professor: Gallaudet University, Dept. of Counseling

  2. General Background • Incidence of congenital hearing loss is 0.5-3/1000 live births • 90% of deaf children born to hearing parents • 90% of deaf parents have hearing children

  3. Why a Medical Home? • Large cultural communities tend to congregate in urban areas, especially if residential school/university in area * Washington DC metropolitan area deaf residents estimated in “hundreds of thousands”

  4. Why a Medical Home? • Legal Mandates: -Americans with Disabilities Act (1990) -DHHS Office for Civil rights policy statement regarding Low English Proficiency patients (2000) • Parents are primary historians for young children – good communication and cultural awareness critical

  5. Why a Medical Home? • Parents often seek advice from health professionals related to areas outside medical arena – familiarity with community resources can be very helpful

  6. Areas of Decision-Making • LANGUAGE • HEARING AMPLIFICATION • CULTURE & PSYCHOSOCIAL • MEDICAL CONSIDERATIONS

  7. LANGUAGE

  8. Communication/Education Modes • SIGNED (ASL, SEE) • ORAL (cued speech, speech) • TOTAL COMMUNICATION • BI-BI (No single “best-fit” answer – each family has unique set of circumstances)

  9. HEARING AMPLIFICATION

  10. Behind-The-Ear Aids

  11. BAHA(Bone-Anchored Hearing Aid) • Conductive hearing loss • Previous surgery or malformation prevents use of conventional aid • Screw implanted in mastoid bone connects to external processor

  12. Cochlear Implant

  13. Cochlear Implant

  14. FM SYSTEM

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

  16. CULTURE & PSYCHOSOCIAL

  17. FACTORS • Access to Resources • Presence of Deaf community • Parental expectation

  18. Family Milieu • Deaf-of-Hearing: *may have guilt, grief, sense of loss *potential unrealistic expectation/denial *variable accessibility to resources -geographic isolation -SES -education

  19. Family Milieu • Deaf-of-Deaf: *may be thrilled!! *multi-generational: strong cultural heritage *exposed to intact first language from birth – reduces sense of urgency for educational decision making

  20. MEDICAL CONSIDERATIONS

  21. Medical Considerations • Initial considerations: *PMH: TORCH (CMV), anoxia, ECMO, ototoxic drugs, hyperbili, etc. *PE: dysmorphism, auricular or preauricular distortion • Genetics referral *based on FH *connexin 26 • Audiology referral *report to state *sedated BAER *recommendations for amplification and follow-up

  22. Medical Considerations (cont) • Coordinating Subspecialists *syndrome-related deafness often requires multiple subspecialist care • Specific Medical Considerations *often require increased ENT services *preventative care for cochlear implant patients

  23. KIDS CLINIC FOR THE DEAF

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

  25. KCD – The Medical Home CONSULTATION (often deaf children of hearing parents): *language choices *E.I. Part C state coordinators *audiology support *school options *appropriate psychoeducational testing resources

  26. KCD – The Medical Home SPECIFIC MEDICAL CARE SITUATIONS: -cochlear implants: appropriate vaccines, coordinating with audiology/ENT, monitoring language milestones -syndromic deafness: coordinating subspecialty care -normal development awareness for bilingual/trilingual households

  27. KCD – The Medical Home EDUCATION: -Community workshops -Involvement at local deaf-education schools (i.e. Back-To-School night) -Grand Rounds lectures at area hospitals -Involvement of medical students and residents fluent in ASL in clinical and educational activities

  28. KCD – The Medical Home RESOURCE COLLABORATION: -Baby Watch™: continuity of care -Georgetown Patient and Physician Advocacy department: interpreter services for hospital -Gallaudet Interpreting Service – medical interpreter -National Association of the Deaf -Center for Families in Transition

  29. REFERENCES • Acclaim Clipart : www.acclaimclipart.com • East Melbourne Hearing Research Group: http://www.medoto.unimelb.edu.au/index.htm • Faulconbridge and Bowdler, Hearing Aids: http://www.orl-baohns.org/public/hearingaids.htm • Gallaudet University: www.gallaudet.edu • “Genetics Evaluation Guidelines for the Etiologic Diagnosis of Congenital Hearing Loss”: ACMG statement, vol 4, no 3, May/June 2002 • “What Is A Cochlear Implant”: http://www.glanclwyd.demon.co.uk/audiology/cochinf.htm

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