About the Working Group on Ageing with Spina Bifida and Hydrocephalus
In the past years, our members have emphasised the importance of raising awareness about ageing with spina bifida and hydrocephalus (SBH). Due to improved treatment and care, many children born with SBH have grown up, become adults, and are reaching their senior years. At the same time, we know very little about ageing with SBH and its impact on physiology, mental abilities and independence. There is a need to improve our understanding of the lived experience of older persons with SBH, which is why it has become a key objective for our organisation.
Therefore, IF has created the Working Group on Ageing with SBH, supported by IF Information Officer Renée Jopp, which currently consists of the following IF member representatives:
- Cato Lie, Chair of the Working Group and IF Board member (Norway)
- Kristin Zeiner-Henriksen (Norway)
- Mario Sel (Belgium)
- Teije Dijk (the Netherlands)
- Filipe Pereira (Portugal)
- Sharon Levy (Scotland)
- Eva Toft (Sweden)
- Andrée Biltgen (Luxembourg)
In 2019, our member in Portugal was represented by Liliana Sintra, and our member in Ireland by Frank Larkin.
- IF Report “Ageing with Spina and Hydrocephalus – a descriptive analysis”
On October 1, the United Nations International Day of Older Persons, IF launches its Report “Ageing with Spina Bifida and Hydrocephalus – A descriptive analysis” to highlight the rights and needs of adults with spina bifida and hydrocephalus (SBH). The report includes a set of recommendations to work towards preventing or minimising the ill effects of ageing and to help improve the quality of life of people ageing with SBH.
- Webinar on preliminary findings Survey on Ageing with SBH
As part of the first ever online IF European Workshop, due to the COVID-19 pandemic, a presentation was held to give more detailed information on the first results of the survey that was held in 2019 and which provided feedback from 650 respondents.
- Survey on Ageing with SBH
During its kick-off meeting in March, the Working Group members decided that a survey was the best way to learn more about the current situation and needs of people ageing with SBH. At the IF Workshop in Belgrade in May, the members met in person for the first time and finalised the survey questions. IF launched the survey “Ageing with SBH” in June.
The survey was aimed at people who self-identify as ageing with SBH, from the age of 35 and beyond. While this age limit was set for practical reasons, we want to point out that persons with SBH can be at risk of premature or accelerated ageing, and can already experience the effects at an earlier age.
The survey was translated into English, Dutch/Flemish, French, German, Italian, Norwegian, Portuguese, Romanian, Slovak, Spanish, Swedish and Turkish. The responses will contribute to an exploratory European study on this topic.
In addition, the Working Group members and invited IF members contributed with national reports to share country specific information on ageing with SBH and the role of their associations.
- Initial survey findings
An overwhelming number of people participated in the survey. We received nearly 650 completed forms, from 26 European countries. As the survey closed on 30 September, the full analysis will take place in 2020. Using the survey software, initial findings were presented during the IF EU Workshop in Ghent, in October.
- UN questionnaire on the rights of older persons with disabilities
In 2019, the United Nations Special Rapporteur on the Rights of Persons with Disabilities, Ms. Catalina Devandas-Aguilar, called for input on a report she was preparing on the rights of older persons with disabilities. With the support of the members of the Working Group, IF sent in a response to the UN questionnaire.