Vision loss, dementia, and motor and speech declines all impact the educational experience of individuals with Batten disease and can adversely impact effective learning. There are as yet limited data to support evidence-based approaches to meeting the educational needs of affected individuals. This paper provides an overview of recent work to evaluate and address educational issues with a life-long perspective relevant to individuals with juvenile-onset neuronal ceroid lipofuscinosis (JNCL) and the professionals that provide them with educational support. In particular, several main activities of the recently completed ‘JNCL and Education’ project are summarised, including a survey of parents, educational professionals and social/health workers, development of a formative assessment tool to identify and respond to an individual student's strengths and needs in the learning environment, and proposed strategies for prolonging literacy and language skills. A key concept that should be emphasised in the educational plan for students with JNCL is that of ‘proactive’ and ‘hastened’ learning, that is, providing an early emphasis on adaptive skills that will be required in the later stages of disease progression when new learning will be more difficult to achieve. An additional key concept is participation in real-life activities to maintain skills and quality of life, particularly in the later stages of disease progression.

视力丧失、痴呆、运动和语言能力下降都会影响巴顿病患者的教育体验，并对有效学习产生不利影响。支持以证据为基础的方法来满足受影响个人的教育需求的数据仍然有限。本文概述了最近的工作，从终身角度评估和解决与青少年发病神经元蜡样脂褐质沉积症 (JNCL) 和为他们提供教育支持的专业人员相关的教育问题。特别是，总结了最近完成的“JNCL 和教育”项目的几项主要活动，包括对家长、教育专业人员和社会/卫生工作者的调查，开发形成性评估工具来识别和回应个别学生” 在学习环境中的优势和需求，并提出了延长识字和语言技能的策略。在 JNCL 学生的教育计划中应该强调的一个关键概念是“主动”和“加速”学习，即早期强调适应技能，这在疾病进展的后期阶段是新的学习会更难实现。另一个关键概念是参与现实生活中的活动以保持技能和生活质量，尤其是在疾病进展的后期阶段。在疾病进展的后期阶段，当新的学习更难以实现时，早期强调适应性技能。另一个关键概念是参与现实生活中的活动以保持技能和生活质量，尤其是在疾病进展的后期阶段。在疾病进展的后期阶段，当新的学习更难以实现时，早期强调适应性技能。另一个关键概念是参与现实生活中的活动以保持技能和生活质量，尤其是在疾病进展的后期阶段。