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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.) 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 Presentation Objectives • Present Rhode Island’s newly developed algorithm for medical home providers • Present the process of its development • Discuss gaps identified and opportunities/solutions for strengthening our EHDI system 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 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 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 infant’s “medical home.” 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 RI’s infants with hearing loss. 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 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. Working Towards a Solution… A State Specific Algorithm 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 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 Birth Birth Screen RIHAP*(401-277-3700) Identify a Medical Home for every infant Hospital-based Inpatient Screening (OAE/AABR) Results sent to PCP At least 2 screening attempts recommended prior to discharge Pass Missed Incomplete Did Not Pass RIHAP contacts family and schedules a rescreen PCP Informed Phone family to encourage them to follow through with rescreen 3 Gap: Unclear language within algorithm Hospital-based Inpatient Screening (OAE/AABR) Results sent to PCP At least 2 screening attempts recommended prior to discharge Pass Missed Incomplete Did Not Pass RIHAP contacts family and schedules a rescreen 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 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. Ongoing Care of All Infants Ongoing Care of All Infants 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 Before 1 Month Birth Before 1 Month Screen Re-screen RIHAP*(401-277-3700) RIHAP Identify a Medical Home for every infant Hospital-based Inpatient Screening ( OAE/AABR ) Results sent to PCP Outpatient Screening (OAE/AABR*) At least 2 screening attempts recommended prior to discharge Home births Results sent to PCP Missed Incomplete Did not pass Did Not Pass Pass RIHAP contacts family and schedules a rescreen PCP Informed Phone family to encourage them To follow through with rescreen Pass RIHAP recommends diagnostic testing PCP Informed Phone family to identify an audiologist and support need for follow-through Gap: Unclear roles/responsibilities Solutions: • For infants who do not pass the rescreen, 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 Before 3 Months Before 3 Months Referred for Diagnostics Every child with suspected hearing loss Community Audiologist Pediatric Audiologic Evaluation RIHAP can be contacted for a list of Pediatric Audiologists, 401-277-3700, Fax 401-276-7813 Follow-up Every child identified with a permanent hearing loss Hearing Loss Professionals and Organizations Audiologist reports diagnosis to RIHAP (401-277-3700) Child & family history Audiologist refers for early intervention and family support: Specific Early Intervention Program *** Family Guidance Program (401-222-4013) Middle ear function PCP initiates medical evaluation Otoscopic inspection OAE* ABR* Frequency-specific tone bursts Air & bone conduction Audiologist counsels parents about results and recommendations 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 to PCP Normal Hearing Hearing Loss PCP sets up an appointment with family to review the results, intervention benefits, and follow-up. Results Sent to PCP Support follow-up, with Audiology, EI, and Family Guidance Program. Diagnosis: Hearing Loss Gap: Lack of family-centered communication Family-centered communication between audiologists & families promotes a more satisfying and successful interaction Solution: Pediatric Audiologic Evaluation Audiologist counsels parents about results and recommendations Results to PCP Hearing Loss • 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. PCP sets up an appointment with family to review the results, intervention benefits, and follow-up. 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: Pediatric Audiologic Evaluation Audiologist counsels parents about results and recommendations Results to PCP 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 Hearing Loss PCP sets up an appointment with family to review the results, intervention benefits, and follow-up. What audiologist has done What PCP needs to do Diagnosis: Hearing Loss Gap: Unclear roles/ responsibility for PCP Pediatric Audiologic Evaluation Audiologist counsels parents about results and recommendations Results to PCP Hearing Loss PCP sets up an appointment with family to review the results, intervention benefits, and follow-up. Solution: PCP Action Point • PCP needs to be informed of plans and issues • Allows PCP to support family & assist in facilitating follow-up Before 3 Months Referred for Diagnostics Every child with suspected hearing loss Community Audiologist Pediatric Audiologic Evaluation RIHAP can be contacted for a list of Pediatric Audiologists, 401-277-3700, Fax 401-276-7813 Follow-up Every child identified with a permanent hearing loss Hearing Loss Professionals and Organizations Audiologist reports diagnosis to RIHAP (401-277-3700) Child & family history Audiologist refers for early intervention and family support: Specific Early Intervention Program *** Family Guidance Program (401-222-4013) Middle ear function PCP initiates medical evaluation Otoscopic inspection OAE* ABR* Frequency-specific tone bursts Air & bone conduction Audiologist counsels parents about results and recommendations 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 to PCP Normal Hearing Hearing Loss PCP sets up an appointment with family to review the results, intervention benefits, and follow-up. Results Sent to PCP Support follow-up, with Audiology, EI, and Family Guidance Program. Follow-up: Permanent HL Gap: Unclear roles and responsibilities Audiologist reports diagnosis to RIHAP (401-277-3700) Solutions: Audiologist refers for early intervention and family support: Specific Early Intervention Program *** Family Guidance Program (401-222-4013) • Identified responsible parties (titles and phone numbers) and expected actions 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. • Changed “advise family” to “Partners in care inform family” • Developed PCP action point Follow-up: Permanent HL Gap: Lack of communication among partners 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 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 Before 6 Months Before 6 Months 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 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 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 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 O’Neill, MS, CCC-A RI Hearing Assessment Program Betty Vohr, MD RI Hearing Assessment Program