Title: 'Building an EHDI Program That is Responsive to the Needs of Families '
Track: 7 - Family Perspectives and Support
Keyword(s): family, support, system-building,
Learning Objectives:
  1. Understand the importance of family-professional parnterships to ensure the development of family-centered EHDI programs.
  2. Learn about the capacity and potential of family organizations to meet the mission of EHDI.
  3. Obtain examples of effective strategies that can be employed by state EHDI programs working in partnership with Title V and other partners.


Accomplishing the EHDI mission of ensuring families get connected to needed follow up, diagnostic, intervention, and support services requires partnerships with others to help families find the right “doors” for accessing what they need. EHDI programs can benefit from partnering with broader disability-related family resource entities such as Family Voices, Family–to–Family Health Information Centers, Parent Training and Information Centers, and Parent-to-Parent USA. State Title V CSHCN programs also play a critical role in systems building via supporting partnerships across these key organizations and state programs. In turn, EHDI programs are essential partners in such system-building efforts to ensure families get services that are responsive to their needs. To better understand the role these stakeholders play in serving families of children who are deaf or hard of hearing, results of a national survey administered to the aforementioned family organizations will be presented. The results shed light on the number of families who access these programs, the types of information they provide to families based on their requests, the challenges they face in supporting these families, and their relationship with their state EHDI program. To gain insights into successful systems-building strategies at the state level, Massachusett’s 15 year journey in building strong partnerships with families and ensuring that the EHDI program is responsive to family needs will be described. Specific strategies include providing support, education, networking, skill building and parent to parent matching. Massachusetts has responded to the changing ways in which families get and give information by developing an active Facebook page, creating digital stories and using a multimedia approach. In this session we will share information about a broad array of opportunities and engagement strategies that have strengthened and enhanced the Massachusetts EHDI program.
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Diane Behl - Primary Presenter,Co-Presenter
     Credentials: M.Ed.
      Diane Behl is a Senior Faculty member at the National Center for Hearing Assessment and Management. She facilitates telehealth learning communities and is a co-investigator for cost-effectiveness studies. She has expertise in evaluating the effectiveness of service coordination provided via Part C Early Intervention and Maternal and Child Health programs.

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.
Sarah Stone - Co-Presenter
MA Dept. of Public Health
     Credentials: BBA
      Sarah Stone, Program Coordinator, Massachusetts Early Hearing Detection and Intervention Program is dedicated to ensuring effective communication with families, birthing hospitals and audiological diagnostic centers. Ms. Stone has been instrumental in developing scripted messages and program materials that assist families and providers in understanding the EHDI goals and objectives. She has a background in public policy and business.

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Donene Feist - Co-Presenter
North Dakota Family Voices
     Credentials: family leader
     Other Affiliations: NCHAM Family Advisory Committee
      Donene Feist is the proud mother of three young adults; two of them have grown up with special health care needs and one who is deaf. She has been a licensed nurse for over thirty years, providing professional insight to health care systems. Her efforts have been recognized through many of the advisory roles and committees and she was given the 2000 Outstanding Young North Dakotan Award through the ND Jaycees, Outstanding Family Voices State Coordinator 1998, 2007 Certificate of Appreciation from MCHB for enhancing the data collection and analysis capacity of the Family to Family Health Information Centers and Family Voices, 2008 Robert Wood Johnson Community Health Leader, 2009 Data in Action Award by the Child and Adolescent Health Measurement Initiative and 2010 Certificate of Recognition were acknowledged by the ND MCH Leadership.

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