Title: 'Hearing and Bloodspot parent refusals : A partner's approach in addressing and understanding the issue'
Track: 10 - Policy, Advocacy and Legislative Issues
Keyword(s): bloodspot, refusals, partners
Learning Objectives:
  1. describe parent perceptions and reasons listed for refusing newborn screening
  2. discuss the strategies used in collecting information from the parent to parent refusal survey
  3. identify the strategies incorporated among partners to address refusals


The Arizona Department of Health Services-Office of Newborn Screening identified 269 families with a child born between January 2011 and May 2012 that refused either a hearing(187) or bloodspot(71) or both screening(11), during the initial inpatient hospitalization. An additional 80 families were identified between January-May 2012 who refused a screening. These numbers represent an increasing trend in refusals that is of concern to the health department, providers and EHDI partners. Legislators, representatives from the American Academy of Pediatrics-Arizona Chapter, The EAR Foundation of Arizona and the contractors who provide newborn hearing screening wanted to understand parent perceptions, identify trends, assess differences among facilities, providers and communities and to target outreach/education efforts. These issues were addressed by conducting a parent to parent telephone survey, issuing newborn hearing screening vouchers and increase bedside education efforts. The results will be shared along with steps taken to address refusals.
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Sondi Aponte - POC,Primary Presenter,Author
Az Dept of Health Services
     Credentials: Office of Newborn Screening Quality Improvement, Education and Outreach Manager
      With 15 years’ experience in technology, program development, and training, Sondi Aponte is the Quality Improvement, Education and Outreach Manager with the Office of Newborn Screening (ONBS) program at the Arizona Department of Health Services. In that capacity, she develops quality assurance measures, monitors program outcomes, oversees hearing grants, and is the project lead on the CDC Data Integration grant. Program quality improvement responsibilities include data evaluation and analysis, report creation and overall data integrity. Partnership development and enhancement are crucial components of her job, representing the ONBS with The Az. Academy of Pediatrics, The Arizona Perinatal Trust and The EAR Foundation of Arizona (EFAz) among others.Sondi develops and implements training materials and educates clinical providers and families on newborn screening best practice.

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.
Melissa Selbst - Co-Presenter,Author
EAR Foundation of Arizona
     Credentials: Melissa Selbst, MPH, CHES Executive Director www.earfoundationaz.com
      Executive Director, 2006-present EAR Foundation of Arizona Staff and volunteer management, Fundraising, Community Relations, Board Management and Development Financial Management, Program Management Professional Education and Training Director of Program Services and Public Affairs, 1996 – 2006 March of Dimes Arizona Chapter, Phoenix, Arizona Program management and oversight for public health education, professional health education, advocacy and grants management for the Arizona Chapter.

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.
Lylis Olsen - Co-Presenter
EAR Foundation
     Credentials: MS, MPH
     Other Affiliations: AzEHDI Coordinator
      Lylis Olsen is the State EHDI Coordinator in Arizona. She is a pediatric audiologist with 25 years of experience. She also has a Master's in Public Health and has 21 years experience in state newborn hearing screening programs. She works for the EAR Foundation of Arizona and also manages the HEAR for Kids program.

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.
Shelby Willa - Co-Presenter
     Credentials: parent of a D & HH child AA-Radiology Technician
     Other Affiliations: Arizona Hands & Voices
      Shelby is a parent of a son who wears bi-lateral cochlear implants. Shelby has been a board member and parent participant of Arizona Hands & Voices since its inception. Shelby works for the EAR Foundation of Arizona as a Screening Coordinator for the BASICS program

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