Late-Onset Diagnosis A Mother's Experience

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Late-Onset DiagnosisA Mother's Experience

• Trying to find the resources, coordinated care,
  information, and support when your child is
  diagnosed post-newborn
• Taunya Paxton, Mother
• Pleasant Grove, Utah

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Obligatory Faculty Disclosure Information

• In the past 12 months, I have not had a
  significant financial interest or other
  relationship with the manufacturer(s) of the
  product(s) or provider(s) of the service(s) that
  will be discussed in my presentation.
• This presentation will not include discussion of
  pharmaceuticals or devices that have not been
  approved by the FDA.

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Overview

• My son's Story
• Potential for Improvement
• Proposals

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My Son's Story

• Triggers
• Chance diagnosed at almost 3 yrs
• Best guess deaf since 13 months
• All professionals involved were surprised
• ENT  He's just a late talker 
• Had some language about 10 intelligible words
• Babbled a lot, like what you'd expect from a
  younger child

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At the Diagnosis (ABR)

• Audiologist gives diagnosis and summarizes
  options.
• I asked lots of questions, but it wasn't clear
  who should have the answers.
• Audiologist? ENT? PCP?

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After the Diagnosis(Un)Coordinated Care

• PIP We don't want to help he's almost 3
• ENT We got the impression of Now that he's
  been diagnosed as deaf, I'm out of the picture.
• Audiologist Did what was in his scope to do.
• Nobody explained what a hearing-aid-dispenser
  was Is it like a Coke machine? Can I buy that
  at WalMart?
• PCP Assumed ENT was taking ownership, and
  therefore did little as far as Chance's deafness.

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After the DiagnosisHow we got help

• Audiologist 'Choices in Deafness', genetic
  testing, approachable
• Found out about deaf pre-school (USDB) through
  AGBell parent representative (internet search)
• We self-referred to USDB no doctor mentioned
  them
• Otherwise would have gone to common disabilities
  preschool with Down's, Autistic, etc
• Once we were self-referred to USDB, they were
  incredibly helpful (loaner aids, etc)
• Local school didn't want to help.

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The Money Pit

• Doctors Are you on Medicaid? No? Oh, I'm
  sorry! Good luck
• Insurance calls deafness 'cosmetic' and 'an
  education issue'
• Took out loan for hearing aids
• So much discrepancy in price of hearing aids
• Black Market of information

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Potential For Improvement

• Information packet from audiologist at time of
  diagnosis
• Where am I going and how do I get there?
• Before age 3, PIP is the Gatekeeper.
• Confusion about who should be the GateKeeper
  after age 3.
• Chance's world went silent the diagnosis just
  sent us on a free trip to Pluto.
• Professionals deal with this everyday. For
  parents, this is our very first exposure to it.
  We're not in Kansas anymore, Toto!

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Proposals Information Packet Contents

• Options in deafness sign vs oral vs cued vs mix
• Refer to State School for the Deaf
• List of support groups different lists for
  different approaches (oral vs sign)
• List and role of all players Audiologist, ENT,
  PCP, Hearing-Aid Dispenser, etc.
• Yellow Brick Road list
• What impact does this have on sibling care
• ie, should siblings be tested more frequently,
  etc., and by whom (PCP or audiologist?)

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ProposalsAnnual Hearing Test

• Annual Hearing Test until age 4 or 5?
• 45 and 30 seconds once a year (according to a
  couple of audiologists)
• many hospitals provide this test free of charge
  one day a month
• Every day of undiagnosed deafness affects the
  ability of these children to learn

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So Where Are We Now?

• Chance is doing great
• In special oral-deaf school
• Parents are active in his education, USDB issues,
  AGBell
• Failed in getting insurance to cover hearing aids
• Parents in race against time to get cochlear
  implant so Chance can access higher frequencies

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Questions?