Late-Onset Diagnosis A Mother's Experience

1. Trying to find the resources, coordinated care, information, and support when your child is diagnosed post-newborn Taunya Paxton, Mother Pleasant Grove, Utah Late-Onset DiagnosisA Mother's Experience

2. 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. Obligatory Faculty Disclosure Information

3. Overview • My son's Story • Potential for Improvement • Proposals

4. 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

6. 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?

7. 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.

9. After the Diagnosis:How 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.

10. 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

11. 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!”

12. 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?)

13. Proposals:Annual 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

14. 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

15. Questions?