Birth to Three Years:  Protecting Parents’ Privacy while Ensuring Continuity of Care


By Candace Lindow-Davies, MN H&V

Parents are well aware of the dramatic impact Newborn Hearing Screening has had on the lives of our children who are deaf and hard of hearing.  When a child is identified early and the family receives timely and quality early intervention and information on language development, that child is poised to achieve his/her full potential.  Exactly the news parents want to hear.  However, if an Early Hearing Detection and Intervention (EHDI) system is unable to effectively usher a child from identification to Early Intervention (EI), or if no quality assurance measures are in place to assess the effectiveness of a newborn screening program and EI, the benefits to the child are lost.

In addition to prompt identification of hearing loss and quality intervention services, parents also value the fundamental right to have their child and family’s health and educational information protected.  However, the thought that privacy laws could actually hinder a state’s EHDI program from ensuring that a child receives appropriate services is unnerving. Growing concern that EHDI programs may find themselves challenged by privacy laws, National Center for Hearing Assessment and Management (NCHAM) convened a workgroup last month to address the perceived barriers that confidentiality laws can pose.

Most parents are familiar with HIPAA (Health Insurance Portability and Accountability Act).  After all, how many hundreds of times have we been given a disclosure statement to sign?  FERPA (Federal Education Rights and Privacy Act) is a law that most parents often do not even think about, but rather, assume is in place.  This law ensures that our child’s private information is protected while in the educational system. Both HIPAA and FERPA, as well as Part C Confidentiality under IDEA, are all vitally important laws for families and children and are instrumental in making sure parents agree about who will be given their confidential information and why. However, these laws have posed challenges to state EHDI programs, especially in obtaining information back from Early Intervention about long-term follow-up data that can be critical in determining the impact of a newborn hearing screening program.

In response to these concerns, two steps were taken.  First, at the request of the Maternal and Child Health Bureau, NCHAM surveyed EHDI programs to determine their perception of the limitations of privacy laws.  In January, after compiling the results, NCHAM invited six EHDI programs, several parent organization representatives; and a medical home representative to a forum to discuss the survey data. The six state teams also shared successful strategies they have used. The desired outcome of the workgroup was to create recommendations for state EHDI programs regarding how they can team with other health and education agencies within HIPAA/FERPA/Part C guidelines.  Todd Houston and Diane Behl will present these recommendations at the 2008 National EHDI Conference on Tuesday, February 26th during Topical Session 7.  Following the conference, NCHAM will provide states with recommendations and examples of state Memorandums of Understanding, legislation and consent forms. Included will be identification of points in the system when privacy laws are engaged, what typically happens to gain parent consent, what is legally required to abide by federal law, and what would be considered best practices in keeping parents informed and educated about the process.  This information will prove to be extremely helpful to EHDI programs, other partnering state agencies, as well as parent organizations like state Hands & Voices chapters.

Most importantly, NCHAM’s attention to confidentiality concerns assures parents that they will be informed throughout the identification and early intervention process while ensuring that our kids get access to the quality services they deserve.   ~

For updates on this topic, please visit

Copyright 2014 Hands & Voices   ::   Privacy Policy   ::   Credits