Developing a network for measuring and addressing disability-related extra costs

残疾人经常需要支付与残疾有关的额外费用，例如康复、个人援助或额外的保健或交通费用。这些成本可能是巨大的，并增加了残疾人及其家庭陷入贫困的风险。反过来，未得到满足的支出可能导致功能、社会参与、福祉恶化，并最终导致贫困。解决额外费用问题是履行《残疾人权利公约》和全球首脑会议承诺的核心，包括促进残疾人的充分和有效参与，确保残疾人的经济、社会和文化权利。研究人员和决策者越来越有兴趣衡量额外成本，并确定在政策和规划中覆盖这些成本的战略，特别是在社会保护方面。然而，最近的一项系统综述强调，尽管该领域的研究迅速增加，但在常用方法中衡量和解释额外成本的最佳实践方面缺乏共识。因此，生成的估计通常是不可比较的，并且对设计选择非常敏感。更新的方法，特别是所需商品和服务方法，需要开发，包括残疾人的投入，以便广泛使用。还需要提供指导，以解释各种方法的额外费用估算，并确定解决办法，以改善获得所需商品和服务的机会，同时尽量减少自付支出。因此，这项建议将建立一个衡量和处理与残疾有关的额外费用的网络。它将开发一个工具包，为收集和分析三种常用方法（商品和服务、所需商品和服务、生活水平）的额外成本数据提供最佳做法和分步指导。这些最佳做法将通过建立共识和参与性共同发展得到通报。该网络还将编写一份政策简报，其中载有通过社会保护和其他政策支付额外费用的共同制定的战略建议，并将编写一份关于额外费用的期刊版，其中载有关于工具包和建议的摘要文章。网络的产出将广泛分发给其他学术界、各国政府、项目厅、非政府组织和国际组织（例如世界银行、劳工组织、联合国机构、卫生组织）。该网络将由六名核心成员和一个积极的咨询小组组成。核心成员和咨询小组包括残疾人、研究人员、门诊代表、政策制定者和在这一领域工作的从业人员。该网络将采用跨学科方法，由来自公共卫生、经济学、社会学、社会政策和法律背景的研究人员组成。该网络的成员分布在广泛的国家（例如，英国、美国、哥伦比亚、秘鲁、格鲁吉亚、印度尼西亚、南非），并具有在多种情况下从不同角度（例如，研究、政策、规划、宣传）从事残疾、额外费用和社会保护工作的经验。他们将通过在线和面对面的会议和讲习班，以公平的伙伴关系开展工作，以制定拟议的产出，并加强当前和未来在这一主题上的合作。

People with disabilities frequently incur disability-related extra costs, such as for rehabilitation, personal assistance or additional healthcare or transportation. These costs can be significant, and heighten the risk of poverty amongst people with disabilities and their households. In turn, unmet expenses can lead to worsening functioning, social participation, well-being and ultimately poverty. Addressing extra costs is central to the fulfilment of the UNCRPD and the commitments of the Global Summit, including promoting full and effective participation and ensuring the economic, social and cultural rights of people with disabilities. There is growing interest from researchers and policymakers in measuring extra costs and identifying strategies to cover them in policies and programmes, particularly social protection. However, a recent systematic review highlighted that there is a lack of consensus on best practices for measuring and interpreting extra costs across frequently used methodologies despite the rapid proliferation of studies this area. As such, estimates generated are often not comparable and are highly sensitive to design choices. Newer methods, particularly the Goods and Services Required approach require development, including input from people with disabilities, for widespread use. Guidance is also needed for interpreting extra costs estimates across methodologies and identifying solutions to improving access to required goods and services while minimising out-of-pocket spending. Consequently, this proposal will establish a network for measuring and addressing disability-related extra costs. It will develop a toolkit that provides best practices and step-by-step guidance for collecting and analysing data on extra costs across three commonly used methods (Goods and Services, Goods and Services Required, Standard of Living). These best practices will be informed through consensus-building and participatory co-development. The network will also produce a policy brief with co-developed recommendations for strategies to cover extra costs through social protection and other policies and an edited journal edition on extra costs with summary articles on the toolkit and recommendations. The outputs of the network will be disseminated widely to other academics, national governments, OPDs, NGOs and international organisations (e.g., World Bank, ILO, UN agencies, WHO). The network will be comprised of six core members and an active advisory group. The core members and advisory group include people with disabilities, researchers, OPD representatives, policymakers and practitioners working in this field. The network will have a cross-disciplinary approach, with researchers from public health, economics, sociology, social policy and law backgrounds. Members of the network are based in a wide range of countries (e.g., UK, US, Colombia, Peru, Georgia, Indonesia, South Africa) and have experience working on disability, extra costs and social protection in multiple contexts and from different perspectives (e.g., research, policy, programmatic, advocacy). They will work in equitable partnership through online and in-person meetings and workshops to develop the proposed outputs and strengthen current and future collaborations on this topic.