How coordination without ownership creates a multilevel governance gap in ALS health and long-term care systems

Engineering notes

Key topics: autonomous driving. See the paper for implementation details and experimental results.

Chinese explanation / 中文解读

中文解读待补充：本站会优先为端到端自动驾驶、BEV感知、3D目标检测、轨迹预测、路径规划、LiDAR感知等高价值论文补充中文说明。

Original abstract

Amyotrophic lateral sclerosis (ALS) sits at an uncomfortable junction in the governance of health and long-term care. It is rare enough to escape the institutional attention reserved for high-prevalence conditions, yet complex enough that generic disability or palliative frameworks struggle to cover its full care pathway. This article argues that ALS governance is best characterised as coordination without ownership: a condition in which international, EU, national, and subnational actors produce overlapping normative frameworks, none of which carries a clear mandate, budget line, or accountability mechanism for the disease as a whole. ALS is treated here as an illustrative case of a dynamic likely to recur wherever low prevalence, cross-sectoral care demands, and weak advocacy infrastructure coincide, and not as proof that such gaps are unique to it. Drawing on international, EU and Spanish institutional and legal documents, and using Spain (including its 2024 legislation and 2025-26 regulatory follow-up) as a national case that makes the mechanism visible rather than as a template for direct replication, the article identifies where fragmentation between health and social care administration leaves rights formally recognised but practically under-delivered, and what that might mean for other countries with decentralised or multilevel care systems.

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