Parent becomes child's sole navigator through fragmented support systems

For many parents, navigating the complex web of services for a child with specific needs transforms them into reluctant project managers, carrying the burden of coordination across disparate agencies. The author, Azibaolanari Okungbowa, describes this exhausting journey, where each professional, a teacher, social worker, speech therapist, or school nurse, holds only a fragment of the child's story. "Each agency holds its own fragment of my child’s story. None of them holds the whole. And so, I become the one who carries it," she writes, highlighting the immense personal toll.

Initially, parents like Okungbowa arrive at meetings armed with extensive documentation, but years of this fragmented system lead them to internalize all necessary information. They become walking filing cabinets, meticulously tracking schedules, histories, and specific needs across different settings. This role is not chosen but learned out of necessity, as the system fails to provide a cohesive overview. The author expresses a deep longing for a system where professionals collectively hold the child's picture, allowing parents to simply be parents, not conduits of information.

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Each agency holds its own fragment of my child’s story. None of them holds the whole. And so, I become the one who carries it.

Okungbowa's research, involving 50 families and professionals in Scotland, corroborates this experience. An anonymous survey revealed that 97 percent of parent and carer respondents reported difficulty navigating support systems. Furthermore, a staggering 87 percent stated they frequently or always had to repeat the same information to multiple professionals. This redundancy not only wastes valuable time but also creates frustration and a sense of being unheard within the system.

To address this systemic issue, the "Coherence Navigation Framework" is proposed. This framework suggests a structural shift by implementing three key elements: shared navigation, where a designated individual with actual coordination authority holds the overall map of the child's journey; visible navigation, ensuring transparency so families can track agreements and next steps; and a named point person who remains consistent across agency changes and funding shifts. These changes aim to fundamentally alter the experience for families, moving away from the current model where parents bear the overwhelming responsibility of piecing together their child's care.

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97 percent reported difficulty navigating support systems, and 87 percent said they repeated the same information to multiple professionals often or all the time.