Title: '“Bridging the Information Gap between HIPAA and FERPA through a Parent Consent Form”'
Track: 4 - Early Intervention
Keyword(s): Part C, Data Sharing, Parent Consent Form, HIPAA, FERPA
Learning Objectives:
  1. Identify Challenges & Barriers related to EHDI being able to capture Part C enrollment information
  2. Strategize on how to reach an agreement to exchange patient identified EHDI information to meet the 1-3-6 goals
  3. Develop consent form for exchanging data while meeting HIPAA and FERPA requirements


Gathering Part C enrollment information is an important final step in the EHDI 1-3-6 process. In Arizona, it has been a challenge to have timely access to early intervention referral date and Initial IFSP date information. Arizona EHDI and the Arizona Early Intervention Program (Part C) do not reside within the same program in our state and are not able to share confidential information due to HIPAA and FERPA regulations without parental consent. In Arizona, EHDI follow up Coordinators provide follow up from the initial refer on a hearing screening up until a baby is enrolled in Early Intervention. Identifying Part C enrollment information has been a challenge due to the differences in HIPAA and FERPA requirements. Not being able to identify EI enrollment early, allows for the possibility of children falling through the cracks and not receiving timely referral and enrollment in EI services. In addition, it has become a cumbersome process at the end of the year to reconcile this information. To address this, the AZEHDI and the Arizona Early Intervention Program has together, created a simple parent consent form that meets both the legal requirements of HIPAA and FERPA, is simple to use and allows for “real time” collection of EI enrollment data. Early efforts include having the part C program asking every parent of a child born in 2013 and 2014, with a permanent, bilateral hearing loss and enrolled in EI, to sign the consent at their next meeting and fax it to AZEHDI. In addition, this form will be a part of every initial IFSP going forward. The impact moving forward will allow the AZEHDI follow up team to have access to “real time” part C enrollment information. In turn, they can quickly identify a child whose part C referral might not have been made.
Presentation: Poster_FranAltmaier_1668.pdf


Handouts: Handout_1668FranAltmaier.pdf
CART: CART Transcription is not Available
Fran Altmaier - Primary Presenter,POC
Arizona Department Health Services
     Credentials: BSW
      Fran is the Case Management Coordinator at the Arizona Department of Health Services, Office of Newborn Screening. She provides administrative oversight to the follow up teams for both hearing and bloodspot. Prior to becoming the Coordinator in November 2014, Fran spent the prior 2 1/2 years as the High Risk Coordinator/Project Specialist. She provided follow up to all newborns who spent >5 days in a NICU and did not pass their newborn hearing screen as well as completing CQI projects related to reducing LTFU. Fran has a Bachelor of Social Work degree. Before joining the Newborn Screening Program nearly 3 years ago, Fran spent 18 years as a social worker in the early intervention field.

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.
Gidget Carle - Co-Presenter
Arizona Department of Health Services
     Credentials: BSN
      Ms. Carle joined the Newborn Hearing Screening follow up team in September 2012. She has more than 19 years in medical clinical settings. Ms. Carle is the team leader for the hearing screening program and oversee activities performed by hearing Follow up Specialists for well babies. She monitors progress made based on the EHDI 1-3-6 goals. Ms. Carle is responsible for establishing protocols, policies and procedures for effective follow-up.

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.
Sondi Aponte - Co-Presenter
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.