Framing the front door: co-creating a home health care assessment of service need for children with disabilities

This paper details the co-creation of a home health assessment tool for children with disabilities in the context of state-level systems change from traditional Medicaid to Medicaid managed care. A community based, sequential, mixed methods design was used to co-develop the assessment. A process evaluation highlighted community members' experiences with Medicaid managed care. Community members identified issues related to appropriateness of items and loss of services and recommended a dual assessment process to address concerns. Results indicated that 72% of items functioned well. Community members felt that organizational policies and the accuracy of clinical information obtained during assessment processes led directly to loss of services. Co-creating the assessment with caregivers of children with disabilities led to a comprehensive, person-centered, and holistic tool. The process buttressed several concrete systems and policy actions to improve home health care for children with disabilities in Medicaid managed care.