Families with Deafness: Providing a Pediatric Medical Home

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 childs 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
(No Transcript)
21
MEDICAL CONSIDERATIONS
22
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

23
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

24
KIDS CLINIC FOR THE DEAF
25
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

26
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

27
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

28
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

29
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

30
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

31
(No Transcript)