Author: Donald B. Bailey, Jr.; Kathleen Hebbler; Anita Scarborough; Donna Spiker; Sangeeta Mallik
Source: Pediatrics, Volume 113 (4), April 2004, pages 887-896
The purpose of this study was to examine families? first experiences with the early intervention system, with the goal of better understanding the pediatrician?s role in referral and access to services. Similar research has been conducted, but was focused regionally, or was population specific. No longitudinal research has been conducted to track families? experiences beginning with entry into the early intervention system, and following them throughout. This study used a nationally representative sample (20 states and 93 counties were represented), and looked at families? perceptions of their experience(s) with their child?s eligibility determination, interactions with medical and other professionals, and how active a role they played in obtaining early intervention services. The 2974 families who participated for this article had entered into the early intervention system within the prior sixteen weeks, were from across the country, and were interviewed by telephone over a period of about forty minutes, answering seven questions which addressed the study?s focus; this sample included 60% male children, was ethnically diverse, and provides baseline data which can be used later for a longitudinal study of early intervention. All the families had children with or at risk for a disability, and all of the children were recently enrolled in their state?s early intervention program, as required by Part C of the Individuals With Disabilities Education Act (IDEA).
Findings indicated an average time of 5.2 months from initial concern to a child?s formal enrollment in the early intervention system. The time was significantly longer for children with developmental delay(s), as opposed to an established diagnosis. Approximately 75% of the families interviewed reported that identifying and enrolling in the early intervention system required little to no effort on their part, although it was the parents of children with developmental delays who reported more difficulty. Also noteworthy is the fact that minority families and/or families with less formal education or limited financial resources were more likely to report having a negative experience accessing the early intervention system. Overall, families perceived services as being individualized, and perceived themselves as playing an active decision-making role.
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