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 which currently consists of the following IF member representatives: Kevin OâDonnell, Chair of the Working Group on Ageing with SBH (Spina Bifida Hydrocephalus Scotland), Gerry Maguire (Spina Bifida and Hydrocephalus Ireland), Mario Sel (Vlaamse Vereniging voor Spina Bifida en Hydrocephalus vzw), Teije Dijk (Spina Bifida en Hydrocephalus Nederland), Eva Toft (Spin- Off), Jon Bateman (Individual member from Canada), and Chetan Shoraff (Spina Bifida Foundation India), Burhan Elli (Turkiye Spina Bifida DerneÄi), Jessica Schreiber (Individual member from New Zealand) and Jyoti Fernandes (Spina Bifida Foundation India).
How to join the IF Working Group on Ageing
Are you someone with Spina Bifida and/or Hydrocephalus and interested in working for the ageing SBH community? Then please contact us at [email protected].Â
Read more about the work of the IF Working Group on Ageing below.
Activities 2024
Based on the needs of members, IF organised a âMeet and Greetâ meeting in May 2024 as part of the ongoing webinar series on Mental Health & Urological Management. This meeting aimed to facilitate a collaborative discussion between members of the IF International Youth Group SBH and the IF Working Group on Ageing with SBH, where there was the opportunity to share insights and perspectives on mental health and urological management. Furthermore, two upcoming webinars designed specifically for the youth and ageing groups later in the year were discussed.
On the International Day of Older Persons, the IF Working Group on Ageing with SBH seized the opportunity to shed light on the unique experiences of ageing with SBH. They aimed to raise awareness on the barriers that older individuals with SBH may encounter and, most importantly, the urgent need to dismantle these barriers. To mark this day, a toolkit for the IF International Day of Older Persons was developed. This toolkit was a valuable resource designed to spread awareness and guide your social media engagement. This involved sharing personal stories through videos or short narratives, disseminating the toolkit across social media platforms, and utilising specially designed IF frames to amplify key messages or convey individual insights. See also: https://ifglobal.org/events/international-day-of-older-persons-2024/
Coming soon.
Activities 2023
In 2023, the IF Working Group on Ageing with SBH organised a webinar following a report published in the previous year. This webinar aimed to provide a platform for the ageing SBH community to share insights, discuss the findings of the report âAgeing with Spina Bifida and Hydrocephalus: An Overview of Best Practices Around the Worldâ, and engage in meaningful conversations about the unique needs and opportunities for the ageing SBH community. It was intended to bring together individuals with SBH and their caregivers and foster a collaborative environment to catalyse actionable efforts that enhance the quality of life for individuals ageing with SBH. The webinar was divided into two sessions. The first session was dedicated to sharing best practice examples of different countries with respect to the population ageing with SBH, including examples from Malaysia, Belgium, and South Africa. The second session allowed participants to separate into smaller virtual rooms, giving them the opportunity to voice their opinions on ageing with SBH. Read more about the webinar here.Â
On the International Day of Older Persons, the IF Working Group on Ageing with SBH seized the opportunity to shed light on the unique experiences of ageing with SBH. They aimed to raise awareness on the barriers that older individuals with SBH may encounter and, most importantly, the urgent need to dismantle these barriers. To mark this day, a toolkit for the IF International Day of Older Persons was developed. This toolkit was a valuable resource designed to spread awareness and guide your social media engagement. This involved sharing personal stories through videos or short narratives, disseminating the toolkit across social media platforms, and utilising specially designed IF frames to amplify key messages or convey individual insights. As part of this day, the IF Working Group on Ageing with SBH organised a webinar on Best Practices. Read more about this awareness day here.Â
On June 16, 2023, IF hosted a significant side event during 16th Conference of States Parties to the Convention on Rights of Persons with Disabilities (COSP16) titled âReaching Out Together: Advancing Rights-Based Advocacy in Underserved Communities through Transnational Twinningâ. At this side event, Kevin OâDonnell (Chair of the IF Working Group on Ageing with SBH) and AnÄela RadovanoviÄ (IF member Montenegro) actively engaged in a session focusing on the inclusion of people with disabilities in national dialogues. Their discussion centred on addressing misconceptions and stigmas related to the ageing SBH community, and highlighting resources and support for healthcare, independence, and social inclusion. Rewatch their talk here.Â
In his compelling presentation, Kevin gave a brief overview of the IF Working Group on Ageing with SBH. This working group gathers individuals with Spina Bifida and Hydrocephalus and organises monthly meetings to discuss their activities. One of these activities included their recently published report âAgeing With Spina Bifida and Hydrocephalus: An Overview of Best Practices Around the Worldâ. This report delves into the practices, strategies, and approaches adopted on a country level to support individuals with SBH as they navigate the challenges associated with the ageing process.Â
This report led to the organisation of a webinar on October 1st, in commemoration of the International Day of Older Persons, as well as the worldâs Spina Bifida and Hydrocephalus awareness month. This webinar was a great opportunity to get an overview of different needs regarding accessibility and to explore different solutions together. Upon reflection on the webinar, Kevin expressed his delight in learning about the specific needs and desires of the ageing SBH community. The clear focus on addressing distinct challenges within the ageing population sets a promising course for the future initiatives of the IF Working Group on Ageing with SBH. Rewatch Kevinâs talk during the conference here.Â
As part of the WSBHD23 Side Event Europe themed âCurrent Status on Accessibility in Europeâ, member of the ageing group Gerry Maguire highlighted challenges in Ireland with regards to public transport and buildings. In Ireland wheelchair users who are travelling are required to give advance notice. Further, public buildings have yet to be fully adapted for wheelchair users. Gerry passionately advocated for making public transport the norm for persons with disabilities, emphasising the ongoing fight for universal accessibility. Rewatch Gerryâs talk during the side event here.Â
Projects 2022:
The 29th International Conference on Spina Bifida and Hydrocephalus – Diverse Needs, Same Rights.
On September 5th IF held its 29th International Conference on Spina Bifida and Hydrocephalus. IF Working Group on Ageingâs Chairman, Kevin OâDonnell, highlighted the latest activity of the group. In particular, Kevin shared some of the results of a survey developed by the group, which were followed up with a number of interviews with various SBH associations on the best practices around the world to address challenges faced by the ageing SBH community. Several recommendations were also provided. Â
To re-watch Kevinâs presentation during the conference, click here.
IF Report âAgeing With Spina Bifida and Hydrocephalus: An Overview of Best Practices Around the Worldâ.
The IF Working Group on Ageing published its report âAgeing With Spina Bifida and Hydrocephalus: An Overview of Best Practices Around the Worldâ. Having described the problems associated with ageing with SBH in previous reports, the IF Working Group on Ageing turned its attention to solutions. It was decided to interview IF Member Associations to identify best practices with respect to the needs and support for ageing with SBH from IF Member Associations, so that these could be explored and shared. Therefore, the study within this report aimed to gain deeper insights into what is happening on a country level, what are needs from older individuals with SBH and identify best practices by IF Member Associations around the world to support their ageing SBH community.
Read the full executive summary to the report here.Â
Read the entire report here.
Projects 2021:
IFâs key objective is to improve our understanding of the lived experiences of older persons with SBH. Therefore, IF has emphasised the importance of raising awareness for ageing with SBH. On June 23rd, the Working Group on Ageing organised the Webinar and Focus Group Discussions “Ageing with SBH”. This webinar also included focus group discussions to gain greater insights into the perceived needs of individuals with SBH with respect to ageing.
IF Working Group on Ageing’s Chairman, Kevin O’Donnell, shared the results of the Focus Group Discussions organised earlier this year.
Not only did he emphasise on the link between the physical & mental health, the challenges that adults with SBH are facing as they grow older such as decline of their physical & mental health, isolation, anxiety about the future, stigma, etc. but also the importance of multidisciplinary healthcare for adults.
The constant tiredness of explaining their story to different specialists and pointing out the lack of communication between healthcare providers.
If you want to learn more about the conference and the speech of IF Working Group on Aging’s chairman, Kevin O’Donnell, click here
On October 1, the world and the members of the IF Working Group on Ageing with SBH celebrated the International Day of Older Persons.
On this day, IF took this opportunity to raise awareness on ageing with Spina Bifida and Hydrocephalus, the barriers older persons with SBH can face and the need for lifting these barriers.
To celebrate that day, the IF Working Group on Ageing with SBH shared the International Day of Older Persons toolkit  and challenged members to take part and share their key messages.
Check IF Social Media out for more!
On October 27th, the IF Working Group on Ageing with SBH held the âAgeing Well with Spina Bifida and Hydrocephalusâ to celebrate the World Spina Bifida and Hydrocephalus Day 2021 (WSBHD21). This side event of the WSBHD was an occasion for individuals to speak up about their experiences and to share their personal testimonies without any taboo. Participants could ask personal questions to the speakers and even share their own experiences, concerns and advice.
See more information about the side-event here.
IF has published a statement on ageing with Spina Bifida and Hydrocephalus (SBH).
Improvements in treatment and care means that there is a growing population of older people with SBH. The IF Working Group on Ageing with Spina Bifida and Hydrocephalus has been exploring the needs and challenges faced by individuals with lived experiences of ageing with SBH.
In this statement IF and the IF Working Group on Ageing outlines its recommendations to advance and safeguard the rights of individuals experiencing ageing with SBH, to support the development of appropriate services such as multidisciplinary care and person-centred social care.
See more information about the statement here.
To download the statement please click here.
On December 10th, EPR Online Awareness Raising Event took place online. This event is organised together with EPR members AFID (Portugal), AURA Fundacio (Spain), E.G.N.Y.A. (Greece), Fundacion INTRAS (Spain) and Panagia Elousa (Greece). EPR members shared their challenges and good practices focused on ageing of persons with disabilities.
IF and IF Working Group on Ageing with SBH was represented by IF Policy Officer, Hildur ĂnnudĂłttir and was invited as a speaker.
To gain greater insights into the perceived needs of individuals with SBH with respect to ageing, the IF Working Group on Ageing organised, during June 2021, online focus group discussions with interested IF members across the world in which the outcomes were gathered in this report. Discussions from the focus groups reflect the importance of ageing with a specific attention for mental and physical health. Members emphasised on several ageing related challenges.
Download the âAgeing with Spina Bifida and Hydrocephalus â Finding from Online Focus Group Discussionsâ report
Projects 2020:
On October 1, the United Nations International Day of Older Persons, IF launches its Report âAgeing with Spina Bifida and Hydrocephalus â A descriptive analysisâ 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.
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.
Watch the webinar on IF’s YouTube channel
In December 2020 the European Commission published a roadmap for the Green Paper on Ageing. IF responded to the public consultation of the roadmap. Basing its recommendations on the work done by the IF Working Group on Ageing with SBH.
Addressing the evolving demographic changes has been a political priority for past years for European policy makers. However, these developments are not unique to Europe and as global political actors begin to address the needs of an ageing society it is imperative that the rights and unique needs of individuals with SBH are taken into consideration.
You can read the IF response to the Roadmap for the Green Paper on Ageing here.
Projects 2019:
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 âAgeing with SBHâ 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.
Find more information about the survey
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.
Check out the slides with the initial findings
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.
