1. Bringing the Medical Home…Home: A State Specific Model March 3, 2005 Carol Dorros, MD Margo Chiappinelli, AuD First Connections Training and Resource Project for Newborn Hearing Screening A RI Department of Education and RI Department of Health Collaboration. Supported in Act, Health Resource and Services Administration, Department of Health and Human Services part by project 1 H61 MC 00009 from the Maternal and Child Health program (Title V, Social Security Project funds managed by The Hearing Rehabilitation Foundation.)

2. Acknowledgements and Thanks Ellen Kurtzer-White, Au.D.* Project Director, First Connections Marianne Ahlgren, Ph.D, CCC-A Project Coordinator, First Connections Mary Catherine Hess, MA Administrator, RIHAP Betty Vohr, MD Medical Director, RIHAP American Academy of Pediatrics * deceased

3. Presentation Objectives Present Rhode Islands newly developed algorithm for medical home providers Present the process of its development Discuss gaps identified and opportunities/solutions for strengthening our EHDI system

4. Background Literature and the RI experience indicate that the EHDI system needs refinement to better respond to significant issues for families: The emotional response to diagnosis Availability and access to expert services Increased stress and delays in services when system is fragmented

5. Background AAP recommends a Medical Home for all children with special health care needs. (AAP position statement RE9902, 1999) A medical home is defined as an approach to providing health care services where care is: - accessible - family-centered - continuous - comprehensive - coordinated - compassionate - culturally competent

6. Background Joint Commission on Infant Hearing recommends a Medical Home for all children with hearing loss.(AAP position statement, SO 60016, 2002) Pediatricians and other primary care providers, working in partnership with parents and other health-care professionals, make up the infants medical home.

7. RI Medical Home Task Force for Children with Hearing Loss Goals: Identify strengths and barriers in the RI EHDI system Refine the system into one that is better informed, competent and linked. Develop a medical home model specifically for RIs infants with hearing loss.

8. Task Force Development Multidisciplinary team of stakeholders Met monthly Total of approximately 2 years Initial 1 ½ years examining current system -Identifying system strengths/barriers -Defining roles of professionals involved Algorithm development took 8 months

9. Task Force Participants Audiologists (community and hospital based) Members of the Deaf Community Early Intervention Administrators Family Guidance Providers Otolaryngologist Parents Pediatricians ( PCPs and hospital based) Rhode Island Hearing Assessment Program Admin. Rhode Island Dept. of Health Admin.

10. Working Towards a Solution… A State Specific Algorithm

11. Algorithm Goals Specifically designed for RI PCPs in order to enhance the effectiveness of the medical home and provide a more seamless experience for families. Physicians requested: One page document Defining flow of the RI EHDI system Defining roles/responsibilities of partners Local resource names and phone numbers

12. Algorithm Development Stakeholders met monthly for a period of about 8 months Revised the AAP/NCHAM algorithm to reflect the specific process and resources in RI Systematically discussed all language, information and process for inclusion, exclusion or modification Decisions all made by a consensus model

15. Birth

16. Screen RIHAP*( 401-277-3700) Identify a Medical Home for every infant PCP Informed Phone family to encourage them to follow through with rescreen Pass Missed Incomplete Did Not Pass RIHAP contacts family and schedules a rescreen 3 Hospital-based Inpatient Screening (OAE/AABR) Results sent to PCP At least 2 screening attempts recommended prior to discharge

17. Gap: Unclear language within algorithm Solutions: Clarified that screening results are sent to PCP rather than the medical home Changed Refer to Did not Pass to clarify meaning to target audience Missed Incomplete Did Not Pass RIHAP contacts family and schedules a rescreen Pass

18. Gap: Responsibilities/Roles unclear Solutions: Added header line with partners responsible for each stage of process For infants who do not pass the initial screen, the algorithm identifies who makes referral for re-screen RIHAP contacts family and schedules a re-screen. To support the medical home, developed PCP action point Phone family to encourage them to follow through with re-screen.

19. Ongoing Care of All Infants

20. Provides opportunity to remind PCPs about: Elements of comprehensive care related to hearing, vision, speech, language and overall development Monitoring for hearing loss that may occur out of the newborn period Risk indicators for late-onset hearing loss that require referral for audiologic monitoring

21. Before 1 Month

22. Birth Screen RIHAP*( 401-277-3700) Identify a Medical Home for every infant Before 1 Month Re-screen RIHAP Outpatient Screening (OAE/AABR*) Results sent to PCP PCP Informed Phone family to encourage them To follow through with rescreen Pass Did not pass RIHAP recommends diagnostic testing Home births Pass Missed Incomplete Did Not Pass RIHAP contacts family and schedules a rescreen PCP Informed Phone family to identify an audiologist and support need for follow-through

23. Gap: Unclear roles/responsibilities Solutions: For infants who do not pass the re- screen, the algorithm identifies who is responsible for next step RIHAP recommends diagnostic testing Added a PCP action point to support the medical home PCP phones family to identify an Audiologist and support the need for follow-through

24. Before 3 Months

25. Referred for Diagnostics Follow-up Every child with suspected hearing loss Every child identified with a permanent hearing loss Pediatric Audiologic Evaluation RIHAP can be contacted for a list of Pediatric Audiologists, 401-277-3700, Fax 401-276-7813 Otoscopic inspection Child & family history Middle ear function OAE* ABR* Frequency-specific tone bursts Air & bone conduction Audiologist counsels parents about results and recommendations Normal Hearing Loss PCP sets up an appointment with family to review the results, intervention benefits, and follow-up. Audiologist reports diagnosis to RIHAP (401-277-3700) Audiologist refers for early intervention and family support: Specific Early Intervention Program *** Family Guidance Program (401-222-4013) PCP initiates medical evaluation PCP refers to otolaryngologist For evaluation, to recommend treatment, and to provide clearance for amplification Partners in Care inform family (Audiologist, ENT, Family Guidance Program, others) about communication, amplification and cochlear implants Community Audiologist Hearing Loss Professionals and Organizations Results to PCP Results Sent to PCP Support follow-up, with Audiology, EI, and Family Guidance Program.

26. Pediatric Audiologic Evaluation Audiologist counsels parents about results and recommendations Hearing Loss PCP sets up an appointment with family to review the results, intervention benefits, and follow-up. Results to PCP Diagnosis: Hearing Loss Gap: Lack of family-centered communication Solution: Address emotional distress of family Emphasize hope, not necessarily technical information Allow the family to indicate how much information they can take in at the time of diagnosis Recognize that the family may need time to process information. Family-centered communication between audiologists & families promotes a more satisfying and successful interaction

27. Pediatric Audiologic Evaluation Audiologist counsels parents about results and recommendations Hearing Loss PCP sets up an appointment with family to review the results, intervention benefits, and follow-up. Results to PCP Diagnosis: Hearing Loss Gap: Meaningful Communication from Audiologist to PCP Reports from the audiologist to the PCP about diagnostic results provide an opportunity for team building and decreased fragmentation of care Solution: Communication to PCP should: Describe the degree, type of HL & implications for social and academic development Use non-technical language Specify interventions and services needed What audiologist has done What PCP needs to do

28. Diagnosis: Hearing Loss Gap: Unclear roles/ responsibility for PCP Solution: PCP Action Point PCP needs to be informed of plans and issues Allows PCP to support family & assist in facilitating follow-up Pediatric Audiologic Evaluation Audiologist counsels parents about results and recommendations Hearing Loss PCP sets up an appointment with family to review the results, intervention benefits, and follow-up. Results to PCP

29. Before 3 Months Referred for Diagnostics Follow-up Every child with suspected hearing loss Every child identified with a permanent hearing loss Pediatric Audiologic Evaluation RIHAP can be contacted for a list of Pediatric Audiologists, 401-277-3700, Fax 401-276-7813 Otoscopic inspection Child & family history Middle ear function OAE* ABR* Frequency-specific tone bursts Air & bone conduction Audiologist counsels parents about results and recommendations Normal Hearing Loss PCP sets up an appointment with family to review the results, intervention benefits, and follow-up. Audiologist reports diagnosis to RIHAP (401-277-3700) Audiologist refers for early intervention and family support: Specific Early Intervention Program *** Family Guidance Program (401-222-4013) PCP initiates medical evaluation PCP refers to otolaryngologist For evaluation, to recommend treatment, and to provide clearance for amplification Partners in Care inform family (Audiologist, ENT, Family Guidance Program, others) about communication, amplification and cochlear implants Community Audiologist Hearing Loss Professionals and Organizations Results to PCP Results Sent to PCP Support follow-up, with Audiology, EI, and Family Guidance Program.

30. Follow-up: Permanent HL Gap: Unclear roles and responsibilities Solutions: Identified responsible parties (titles and phone numbers) and expected actions Changed advise family to Partners in care inform family Developed PCP action point Audiologist reports diagnosis to RIHAP (401-277-3700) Audiologist refers for early intervention and family support: Specific Early Intervention Program *** Family Guidance Program (401-222-4013) PCP initiates medical evaluation PCP refers to otolaryngologist For evaluation, to recommend treatment, and to provide clearance for amplification Partners in Care inform family (Audiologist, ENT, Family Guidance Program, others) about communication, amplification and cochlear implants Results Sent to PCP Support follow-up, with Audiology, EI, and Family Guidance Program.

31. Follow-up: Permanent HL Gap: Lack of communication among partners Solution: PCP Action Point Only if PCP informed, can he/she support the family in their journey Ongoing communication among partners in care maximizes the opportunity to create the most effective MH Audiologist reports diagnosis to RIHAP Audiologist refers for early intervention and family support: PCP initiates medical evaluation PCP refers to otolaryngologist Partners in Care inform family Results Sent to PCP Support follow-up with Audiology, Early Intervention,and Family Guidance Program

32. Before 6 Months

33. Continued Follow-up Every child identified with a permanent hearing loss Audiologists/Early Intervention Programs/ Medical Specialists Continued enrollment in Early Intervention and Family Guidance Program Provide services until transition to school system at 3 years of age Medical Evaluations To determine etiology and identify related conditions Genetic Ophthalmologic (annually) Developmental pediatrics, neurology, cardiology, and nephrology (as needed) Pediatric Audiological Services Hearing Aid fitting and Monitoring Behavioral Audiometry (starting at age 6 months) Ongoing monitoring

34. RI Algorithm How are we using it? Distributed to all RI PCPs and partners in care To be included with all results sent to PCPs regarding: –Initial screen Did Not Pass –Infants identified at at birth with risk factors for late onset HL Educational programs for partners in care A phone survey through RIHAP will be ongoing to document questions or comments regarding the algorithm

35. Conclusions Developing a state specific algorithm is a very worthwhile exercise The process facilitates communication among partners in care Provides a succinct illustration of state specific EHDI system flow Defines roles of partners in the medical home Identifies gaps in the system Identifies opportunities for improvement

36. Special Thanks First Connections Training and Resource Project: Project Director Ellen Kurtzer-White, AuD Project Coordinator Marianne Ahlgren, PhD, CCC-A Principal Investigator Peter Simon, MD, MPH Other Medical Home for Hearing Loss in Children Task Force Members: Robert Burke, MD, MPH Memorial Hospital of RI Brian Duff, MD University Otolaryngology Deborah Garneau, MA Office of Families Raising Children with Special Needs Ellen Gurney, MD Providence Community Health Centers Mary Catherine Hess, MA RI Hearing Assessment Program Kerri Hicks Parent Mary Jane Johnson, MEd Family Guidance Program Jennifer LeComte, MA Family Guidance Program Deborah Lyons, MS, CCC-A RI Hospital Dept of Audiology Cheryl McDermott, MS, CCC-A RI Hearing Assessment Program Courtney ONeill, MS, CCC-A RI Hearing Assessment Program Betty Vohr, MD RI Hearing Assessment Program