International Federation for Spina Bifida and Hydrocephalus, in consultation with the members and experts, made a submission to the UN Committee on the Rights of the Child in view of its ongoing work to draft a General Comment on the Rights of Adolescents. In its submission, IF focused on the rights of adolescents with spina bifida and hydrocephalus during the sensitive stage of transition from childhood to adulthood. The submission covers the need for a multidisciplinary approach to transition, which includes high level of appropriate healthcare services, social and educational support as well as the importance of informal peer support. These elements are essential for fostering the young person's growing maturity and preparing her or him for an independent life in the community and the responsible self-management of health needs for the best attainable standard of health.
IF’s research and a questionnaire targeting adolescent members of its national member organisations distilled three essential elements that contribute to the realisation of human rights of adolescents with SBH:
- Apply a multidisciplinary approach to transition to adulthood, which includes medical, psychosocial, vocational and social aspects of the young person’s life;
- Ensure smooth transfer of care from paediatric to adult specialised health services;
- Focus on cultivating independence of adolescents with disabilities to empower and prepare them for adulthood.