| ABSTRACT INFORMATION |
| Presenter Information: |
| Presenter 1: |
Name: Sally Hiner
Affiliation:
Sally Hiner BS,LSW; Senior Project Coordinator provides management and process leadership to the Region 4 Genetics Collaborative; facilitating collaboration across diverse stakeholder groups to develop and implement strategic plans that inform policy, practice, and services systems to improve outcomes for children and families. Through leadership of multiple work groups addressing a variety of issues, Sally has developed expertise in using technology to facilitate long-distance collaborative planning and implementation. Sally also is MPHI’s Director of Research Integrity, providing oversight and guidance to ensure institution-wide compliance with privacy and human subjects’ research protection; and management of MPHI’s Quality Assurance Office.
Over her career, Sally has provided mental health services to adolescents and their families; designed and developed cross-systems intervention and prevention service programs and systems change initiatives; staffed numerous collaborative projects; provided training and consultation in collaboration, self-evaluation, and outcomes based planning; and represented local communities on numerous state-level committees.
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| Presenter 2: |
Name: Molly Pope
Affiliation:
Molly Pope is the Lead Regional Consultant for the Indiana EHDI program at the Indiana State Department of Health. In this role she oversees the activities of the other regional consultants and supports the State EHDI Coordinator in other activities that are important for the program’s progress. The Regional Consultants provide technical assistance and consultation to hospitals and families in their region of the state. Molly is also a clinical pediatric audiologist for James Whitcomb Riley Hospital for Children and is an Adjunct Clinical Instructor for the Purdue University AuD program.
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| Presenter 3: |
Name: Ravi Shah
Affiliation:
Ravi Shah is the Follow-Through Coordinator for the Wisconsin EHDI program, Wisconsin Sound Beginnings. Wisconsin's tracking system allows easy access to hearing results for all children that have a metabolic screen. Those that don't receive a hearing evaluation along with the metabolic screen becomes the primary target for follow-up efforts by the Wisconsin Sound Beginnings team.
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| Presenter 4: |
Name: Reena Kothari
Affiliation:
Reena Kothari, MA, is an audiologist and an Infant Hearing Program consultant at the Ohio Department of Health in the Bureau of Early Intervention Services. Her primary role is to ensure compliance with state legislation for hearing screening of newborns in all birthing hospitals, and to provide oversight state funded grants for children with HL 0-3. Reena is a member of several advocacy committees and also writes state and federal grants and has presented on EHDI statewide and EHDI 08. As a Public Health Audiology Consultant, she has been able to enrich her clinical experience in a variety of ways and has developed public awareness materials for the general public, as well as, for professionals. Additionally, Reena has formed contacts with other statewide EHDI programs. Reena is currently in a doctorate program for audiology at the Pennsylvania College of Optometry (Audiology) and will complete her doctorate in fall of 2009.
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| Author Information: |
| Author 1: |
Name: Sally Hiner
Affiliation: MPHI
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| Author 2: |
Name: Molly Pope
Affiliation: Indiana State Department of Health
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| Author 3: |
Name: Ravi Shah
Affiliation: State of Wisconsin, Department of Health Services
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| Author 4: |
Name: Reena Kothari
Affiliation: The Ohio Department of Health, Bureau for Early Intervention Services
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| Abstract Information: |
| Title: |
Creating a Multi-State Collaborative to Address EHDI Issues |
| Primary Track: |
5-Follow-up, Tracking, and Data Management
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| Keyword(s): |
Regional Genetics Collaborative; Heritable Disorders; Follow-up; Referral; Genetic Disorders |
Abstract: |
The Region 4 Genetics Collaborative, (one of seven regional collaboratives in the United States supported by the Department of Health and Human Services, Health Resource Services Administration, Maternal and Child Health Bureau, Genetic Services Branch), coordinates activities to strengthen collaboration among stakeholders in order to enhance state and regional capacity for assuring that individuals with heritable disorders have access to quality care and appropriate genetic expertise in the context of a medical home. To realize this goal, several regional work groups have been formed to focus on particular issues.
The goal of the Follow-up work group is to develop and distribute best practice follow-up protocols and practice models for population-based identification of children with heritable disorders.
To accomplish this, a follow-up work group has been formed which has changing stakeholder membership determined by the target population to be impacted. Currently, key EHDI representatives from the seven Region 4 states (Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, Wisconsin) participate in this follow-up work group and work together to:
•Develop follow-up protocols and practices for providing information to primary care providers and families at the time of identification (positive screen or reports);
• Improve communication practices between those identifying children with a heritable disorder and the primary care physician; and
• Share follow-up protocols with Region 4 partners, other Regional Collaboratives and national audiences.
This presentation will discuss the goals of the Region 4 Genetics Collaborative and the process implemented with the EHDI Follow-up work group to address those goals. Progress and products of the EHDI Follow-up work group to-date will be shared. |
| Presentation(s): |
Not Available
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| Handouts: |
Not Available
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