COSP16 Side Event Reaching out Together: Advancing rights based advocacy in underserved communities through transnational twinning between national organisations of persons with disabilities

The 16th Session of the Conference of States Parties to the CRPD

A core principle of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) is that persons with disabilities should be consulted on matters related to them and to the implementation of the convention. In order for that to be achieved all communities need to have empowered and informed disability rights advocates and representative organisations of persons with disabilities to engage in the policy making processes. From having a say in the design and implementation of local health and support services to providing input to international discussions and initiatives relevant to the rights of persons with disabilities. The UNCRPD needs strong and diverse representation from all communities, in particular underrepresented groups of persons with disabilities including members of underserved communities.

Representative organisations of persons with disabilities in underserved communities face many challenges when it comes to advocacy for the implementation of the UNCRPD on the local, national, regional and international level. There are strong socio-economic links with the prevalence of Spina Bifida and Hydrocephalus (SBH). With low-income countries and communities experiencing significantly higher prevalence of SBH. Consequently, the very communities who struggle the most with underserved needs and underrepresentation in advocacy are also the ones with highest prevalence of SBH.

National associations for Spina Bifida and Hydrocephalus (SBH) have intimate understanding of the challenges faced by grassroot volunteer based advocacy groups. The International Federation for Spina Bifida and Hydrocephalus (IF) implements numerous capacity building projects for its members. To empower SBH advocates around the world to further their disability rights advocacy on the local, national, regional and international level. Including twinning activities between national SBH associations to enable support and exchanges of experiences and lessons learned between advocates and organisations on the national level.

Description of the event:
With diverse speakers the event will explore the role of transnational twinning in building capacity of national SBH associations and their members. With a focus on how this form of capacity building facilitates exchanges of lessons learnt between national associations and their individual members. Strengthening their participation, across different demographics, in policy making processes on all levels. The event will also discuss how these experiences have contributed to advancing rights based advocacy on high priority issues for the global SBH community. Crucially, the event will explore how the experiences of these initiatives can inform capacity building for underrepresented groups of persons with disabilities globally.

Objectives:
● To raise awareness of how capacity building initiatives for persons with disabilities and their representative organisations are essential to the effective implementation of the UNCRPD on all levels.
● To understand how these initiatives are effective in enabling underrepresented groups of persons with disabilities to take part in rights based advocacy.
● To understand the challenges faced by representative organisations of persons with disabilities and grassroot advocates in underserved communities.
● How the SBH experience with capacity building for underserved communities can inspire and inform actions to enable underrepresented groups of persons with disabilities to take part in the advocacy for the rights of persons with disabilities in accordance with the UNCRPD.