Connecting EHDI with the Medical Home

1. Connecting EHDI with the Medical Home Susan Wiley, M.D.

2. Early Hearing Detection and Intervention • Finding children with congenital hearing loss and providing appropriate interventions and services to maximize potential • Has different forms in different states • Challenges may vary from state to state • Involves many people and many systems

3. Medical Home • A medical home … is an approach to providing health care services in a high-quality and cost-effective manner. Primary care providers, families, and allied health care professionals act as partners in a medical home to identify and access all the medical and non-medical services needed to help children and their families achieve their maximum potential. Condensed and slightly modified from 2000 AAP Participant Training Manual on Medical Home Initiatives for Children with Special Needs

4. Medical Home for deaf/hoh children includes: Family Early Intervention services Technology vendors Family advocates Educational systems Family support/networking Deaf community State Department of Health Local community resources (transportation, recreational activities, adequate number of interpreting services, religious institutions, daycare, transition to adulthood)

5. Medical Home for deaf/hoh children ENT Speech pathologists Ophthalmologist Audiologists Geneticist Aural Rehabilitation Primary Care Provider Other specialists Insurance/funding sources Hospitals Mental health services Interpreters Social services Please add in those services, people, systems that I have missed.

6. Tips for communicating with M.D.’s • Setting up a lunchtime meeting with a physician group and their staff can be a good forum for sharing information. • Give PLENTY of advance notice. • Have families “cc” you on all medical reports. • Phone calls to appropriate staff, physician with good times to reach you.. • Consider using e mail.

7. Tips for communicating with M.D.’s • Be concise with what information you are giving and ask specific questions. • Maintain confidentiality and obtain release of information signatures. • Invite physicians to speak at parent groups, continuing education programs for service providers.

8. Tips for communicating with EDHI co-ordinators • Fill out forms completely and accurately, with appropriate information and diagnoses. • Respond expediently when notified of children who need referred. • Regionalize tracking and intervention services. • Electronic tracking systems, if available. • Tack on to existing systems.

9. Common misperceptions • Once I refer to the ENT, my job is complete. • You can’t teach an old dog new tricks. • One physician’s attitude equates with other physicians’ attitudes. • The services children receive are appropriate. • Physicians don’t want to hear from other providers.

10. Pilot Data • Open ended survey given to 22 families of children aged 6-12 who attended a camp. • Received 11 back

11. Demographics • Ages 3-13 years • Sex 9 girls, 4 boys • Average age of diagnosis 29 mos. • Range of ages at diagnosis birth-6 yrs. • Education level of parents all hs or above • SES most $20-40K • cochlear implants 5 children

12. Time between concern and diagnosis • Ranged 0 months to 3 1/2 years • Average 9.5 months

13. Communication Modes Used • Oral 8 children • aural training 4 children • SEE 4 children • total communication 6 children • ASL 2 children

14. Ways doctors communicate with child • use parent to interpret 4 • talk regularly 7 • write back and forth 0 • use an interpreter 0 • use total communication 1

15. Families view of pediatrician’s role • 6 families say no role for their pediatrician in regards to their child’s hearing loss • The other answers included: • to diagnose and treat, refer to specialist for particular problem • to monitor condition, prescribe medication, refer • to be patient and cooperative with child • keep everything organized with child’s healthcare • assess and diagnose growth, development, illness, family, school issues, health with problems or refer when necessary. Our doctor is not familiar with hearing loss, but interested in information

16. Role of ENT • spot infections earlier (i.e. implants) • requirement for BCMH • medical attention for ears, throat, when PMD refers • tests hearing yearly, fits for hearing aids • annual ear checks (audiologist answers questions) • doesn’t need ENT • monitor condition, advise with treatment (child with Usher’s) • diagnose and treat what PMD can’t, maintain log of audiograms • evaluate for PE tubes q 6 mos. • See as needed, helpful at diagnosis, surgery for implant, or information, got the confidence we needed

17. Information families want • Information has been piecemeal and contradictory • Balanced information about deafness and related family, social, educational issues • Where to go and what to to get child communicating as soon as possible • Any new research • Pamphlet of information on hearing impairment, school options, different kinds of help • Cause of hearing loss (2 families) • All resources available

18. Information families want • An audiotape simulating their child’s hearing loss • Explanation on the type of hearing loss • Type of devices and programs available • Signing classes (2 families) • All view regarding deafness (ASL, SEE, oral) with the decision up to the family.