We asked panelists to describe what navigating the health care system was like for families of children with special health care needs. One panelist said it was like "putting a square peg in a round hole." The health care system is not intuitive for them. There are no direct paths or guides to help them navigate it. The health care system was not created for these families and rarely adapts to meet their needs. It's often inward-facing, meaning it's designed to meet the needs of the system itself and not the needs of patients navigating through it. It can leave parents feeling deeply disempowered, especially those without the financial means to pay for better access to the health care system. West Virginia does not have enough pediatric health care providers in the state to meet the needs of its children. This is especially true for children with special health care needs, like many with developmental disabilities. The shortage and uneven distribution of both primary and specialty care providers result in gaps in health care for residents where pockets of rural and underserved populations reside.
Including All Kids | Project Report 2021
Policy Roundtable: Themes
On October 21, Think Kids sponsored a policy roundtable with parents, health care providers, policymakers, and community stakeholders for a conversation about the challenges to accessing comprehensive health care for kids with developmental disabilities here in West Virginia and potential policy solutions to improving these systems. Here are some prevailing themes:
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