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

残疾人经常产生与残疾有关的额外费用，例如康复、个人援助或额外的医疗保健或交通费用。这些成本可能是巨大的，并增加了残疾人及其家庭的贫困风险。反过来，未支付的费用可能导致功能、社会参与、福祉和最终贫困的恶化。解决额外费用对于履行《儿童权利公约》和全球首脑会议的承诺至关重要，包括促进充分和有效的参与以及确保残疾人的经济、社会和文化权利。研究人员和政策制定者越来越有兴趣衡量额外成本，并确定在政策和方案中涵盖这些成本的战略，特别是社会保护。然而，最近的一次系统审查强调，尽管这一领域的研究迅速增多，但在衡量和解释经常使用的方法的额外费用的最佳做法方面缺乏共识。因此，产生的估计常常是不可比较的，并且对设计选择高度敏感。较新的方法，特别是需要商品和服务的方法，需要发展，包括残疾人的投入，以便广泛使用。还需要指导，以解释跨方法的额外成本估计，并确定解决方案，以改善获得所需商品和服务的机会，同时最大限度地减少自付支出。因此，这项提议将建立一个衡量和解决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(货物和服务、所需货物和服务、生活标准)的额外费用数据提供最佳做法和逐步指导。将通过建立共识和参与性共同发展来了解这些最佳做法。该网络还将制作一份政策简报，其中包括共同制定的关于通过社会保护和其他政策支付额外费用的战略建议，以及一份关于额外费用的编辑期刊版，其中载有关于工具包和建议的摘要文章。该网络的成果将广泛传播给其他学者、各国政府、OPD、非政府组织和国际组织(如世界银行、劳工组织、联合国机构、世卫组织)。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。该网络将采取跨学科的方法，研究人员来自公共卫生、经济学、社会学、社会政策和法律背景。该网络的成员分布在广泛的国家(如英国、美国、哥伦比亚、秘鲁、格鲁吉亚、印度尼西亚、南非)，并在多个背景下从不同角度(如研究、政策、方案、宣传)处理残疾、额外费用和社会保护方面的工作经验。他们将通过在线和面对面的会议和讲习班平等地合作，制定拟议的产出，并加强目前和今后在这一专题上的合作。

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.