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在崎岖道路上前行:呼吁加强对发育障碍和神经行为障碍儿童护理的可及性、公平性和包容性。

Navigating the broken road: A call to strengthen access, equity, and inclusivity in the care of children with developmental disabilities and neurobehavioral disorders.

作者信息

Jawed Aysha, Peck Christine

机构信息

Johns Hopkins Children's Center, Department of Pediatric and OB/GYN Social Work, Baltimore, MD, USA.

出版信息

Health Promot Perspect. 2022 Dec 31;12(4):345-349. doi: 10.34172/hpp.2022.44. eCollection 2022.

Abstract

There is a significant scarcity of resources to achieve behavioral stabilization among children and adolescents with moderate to severe developmental disabilities and neurobehavioral disorders. In total, there are currently 76 inpatient pediatric neurobehavioral programs to support these patients across the United States. Many states do not currently have programs of this nature. Across existing programs, there are substantial waiting lists. In addition, non-public school, intensive day program, in-home and additional outpatient services are not reaching these patients fast enough which further exacerbate the sequalae of suboptimal outcomes and future quality of life implications for these patients. In addition, disparities remain in how the chronicity of developmental disabilities and neurobehavioral disorders are addressed within our healthcare system. It is crucial to categorize this constellation of specialized conditions as chronic illnesses which warrant continued care and treatment, similar in nature to lifelong medical conditions. Further time and priority are warranted in increasing accessibility, equity, and inclusivity in our U.S. healthcare system to optimize a range of health and developmental outcomes for these patients. Future work in this domain could also contribute towards the larger goal of the World Health Organization, Healthy People 2030, and the Sustainable Development Goals of the United Nations in securing delivery of healthcare services that are inclusive, equitable and accessible for individuals with disabilities.

摘要

在患有中度至重度发育障碍和神经行为障碍的儿童和青少年中,用于实现行为稳定的资源严重匮乏。在美国,目前共有76个住院儿童神经行为项目来支持这些患者。许多州目前没有此类项目。在现有的项目中,有大量的等候名单。此外,非公立学校、强化日间项目、家庭服务和其他门诊服务未能足够快地惠及这些患者,这进一步加剧了这些患者不良后果的后遗症以及对其未来生活质量的影响。此外,在我们的医疗系统中,对于发育障碍和神经行为障碍的慢性病处理方式仍存在差异。将这一系列特殊情况归类为需要持续护理和治疗的慢性病至关重要,这与终身医疗状况本质相似。在美国医疗系统中,进一步投入时间和优先资源以提高可及性、公平性和包容性,从而优化这些患者的一系列健康和发育成果是很有必要的。该领域的未来工作也有助于实现世界卫生组织“健康人民2030”的更大目标以及联合国可持续发展目标中确保为残疾人提供包容、公平和可及的医疗服务。

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