Needs of children with neurodevelopmental disorders and medical complexity: Caregiver perspectives.

Background: Caregivers of children with neurodevelopmental disorders and medical complexities (NDD-MC) coordinate care across complex multisectoral systems. Often NDD-MC children have complex behaviors, however there is limited information on coordination needs for families.

Aim: The objective of this mixed methods study was to understand the needs of families with NDD-MC children.

Measure what matters: considerations for outcome measurement of care coordination for children with neurodevelopmental disabilities and medical complexity.

Introduction: Care Coordination (CC) is a significant intervention to enhance family's capacity in caring for children with neurodevelopmental disability and medical complexity (NDD-MC). CC assists with integration of medical and behavioral care and services, partnerships with medical and community-based supports, and access to medical, behavioral, and educational supports and services. Although there is some consensus on the principles that characterize optimal CC for children with NDD-MC, challenges remain in measuring and quantifying the impacts of CC related to these principles.

Care coordination of children with neurodevelopmental disabilities and medical complexity during the COVID-19 pandemic: Caregiver experiences.

Background: The COVID-19 pandemic and subsequent public health restrictions created significant challenges for children with neurodevelopmental disabilities with medical complexity and their caregivers including restrictions in care coordination for children and their families. Care coordination enhances families' skills in accessing and coordinating medical, education and disability care across sectors and systems.

Objective: This study examined the implications of pandemic restrictions on care coordination from caregiver perspectives.

Improving Care for Families and Children with Neurodevelopmental Disorders and Co-occurring Chronic Health Conditions Using a Care Coordination Intervention.

Objective: This clinical intervention study aimed to improve care integration and health service delivery for children with concurrent neurodevelopmental disorders and chronic health conditions. This population has significant unmet needs and disproportionate deficits in service delivery. A lack of coordination across child service sectors is a common barrier to successful treatment and support of children with neurodevelopmental disorders with complex medical needs.

Redesign of the autism spectrum screening and diagnostic process for children aged 12 to 36 months.

Diagnosing autism spectrum disorder (ASD) is challenging, resource-intense and time-consuming due to clinical and etiologic heterogeneity. With the rapid increase in prevalence of ASD, higher demand for diagnostic assessment often means long waitlists for families, and limited access to specialized intervention and support. In 2013, the Alberta Children's Hospital-Autism Spectrum Disorder Diagnostic Clinic (ACH-ASDC) experienced a significant waitlist in the 12 to 36 months' population.