Pre-conference: Workshop Independent Living for Youth with Spina Bifida and/or Hydrocephalus

Pre-conference Workshop

Trainer: Kamil Goungor, European Network on Independent Living

Background: Historically, the independent choice and control of persons with a disability have been rejected, with the belief that they are unable to live independently by themselves. They are commonly the last in society to have their needs met; to be supported to live independently with a satisfactory and equal quality of life compared with peers (of the same socioeconomic status) living without a disability. The lack of support available is limited to meeting basic needs of hygiene and nutrition, but miss providing possibilities to fully participate in the community and addressing personal preferences and needs. This has a negative impact on the emotional stamina and mental health of persons with a disability. Especially for youth with Spina Bifida and/or Hydrocephalus (SBH), this can be more challenging as they require specific support and guidance. Youth are facing the transition from adolescence to adulthood, and this milestone can be extremely difficult for some individuals. It is imperative that youth with SBH can plan for such transitions to enable them to take full control over their own life, leading to successful independent living.

Objectives: The target audience of the pre-conference is youth with disabilities. The objective of the pre-conference is to provide the youth community with more in depth knowledge of independent living, and create a platform for youth to discuss different aspects of independent living. By the end of the workshop, youth have more awareness on:

Moreover, in this pre-conference workshop youth will be inspired by examples of persons with disabilities who successfully live independently and advocate for their rights.

What does independent living for persons with disabilities mean? Why is it important? How to advocate for the rights to independent living?