Abstract

Purpose The purpose of this study was to investigate the rates of referral to and receipt of acute and long-term services and identify factors that could impact these rates for children who experienced an acquired brain injury (ABI) during early childhood who are now in elementary and middle school. Method This was a retrospective chart review and prospective phone survey of 29 caregivers of children with ABIs. Results Acutely, two thirds of this sample received hospital-based rehabilitation services, but only 44.8% of families reported receiving ABI-specific education or a referral to educational or rehabilitation services at the time of discharge. At an average of 8.5 years postinjury, children in this sample were largely reported to be performing positively in school. While special education rates did not change significantly over time, 20.7% of the sample reported having unmet educational needs. Additionally, service receipt decreased over time. Various injury and educational factors influenced rates of long-term special education and service receipt. Conclusions This study contributes to the emerging literature focusing on long-term outcomes of children with ABI. The results reinforce that children who experience an ABI in early childhood are unlikely to receive ABI-specific education or referrals to educational and rehabilitation services during their acute-care stay and, in the chronic stages of recovery, present with educational and therapy needs that can go unmet. To improve long-term service access for children who experience an early ABI, pathways need to be established within the acute-care setting for education and referrals that connect the child and family to treatment within early intervention and educational systems. Maintaining these pathways long term, particularly for potential social-behavioral and cognitive-communication concerns, could increase access to appropriate services and, thus, decrease unmet needs for children with ABI.

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