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

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.