Author: Anita M. Farel, DrPH; Robert E, Meyer, PhD; Margaret Hicken, MPH; Larry Edmonds, MSPH
Source: Infants and Young Children, Volume 16(2), April-June 2003, pages 99-105
This article describes the results of a survey conducted to identify programs that are using, or planning to use, their birth defects registry systems as a way of identifying and referring children and their families for early intervention services. An eighteen question survey was administered electronically to the state birth defects registry contact in fifty states, plus the District of Columbia, and Puerto Rico. The authors were interested in gauging the level of interest in, and experience with, the development of this type of referral system, within state birth defects registry programs. Thus, the survey asked states whether they had, or were in the process of developing, a birth defect registry program. It also asked whether and how they were using, or considering using, that program to identify and refer children for early intervention services. In an effort to contrast what states are doing, the authors also developed case studies for four states (Colorado, Virginia, New Jersey, and Maryland), using information already in existence. North Carolina has a birth defects registry, but it is not currently used as an early intervention referral source. However, this article cites parent feedback from a 2001 survey (Farel, Meyer, & Hicken) showing the majority of respondent families supporting the use of the state?s registry for early intervention referrals.
All surveys were completed, with thirty-three of the fifty-two citing operational birth defects registry programs. Of those thirty-three, thirteen use their registry to identify and refer children and families for services in some way, and five of the thirteen have even enacted legislation requiring this dual use. All thirteen have other identification and referral mechanisms in place, as well. Six states with registries have no plans to use them for identification and referral, primarily because they view it as duplication of systems already in place. Other reasons for not using the registry to identify and refer families included the view that it is not the registry?s intended use, it is not mandated, there are insufficient resources to support it, and it poses confidentiality issues. Fifteen of the nineteen states without birth defects registries are in various phases of planning or implementing a program that will include identification and referral, and the other four have no plans to develop a birth defects registry.
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