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: Vanessa Caraveo (USA, chair), Gerry Maguire (Spina Bifida Hydrocephalus, Ireland, vice-chair), Stijn Calders (Spina Bifida & Hydrocephalus, Belgium), Chetan Shoraff (India), Jyoti Fernandes (Spina Bifida Foundation, Mumbai), Kevin O’Donnell (Spina Bifida Hydrocephalus, Scotland), Filipe Pereira (SBH Association, Portugal), Kerry Marshall (Australia), Su Xiao Vin (Spina Bifida and Hydrocephalus Association, Malaysia), Gard Sørseth (Association for Spina Bifida and Hydrocephalus, Norway), Ngozi Joy Onwuemene (Festus Fajemilo Foundation, Nigeria).

How to join the IF Working Group on Ageing

A call for interest will be announced at the IF Members Meeting and shared with all IF member organisations. Applications will be open until 31 March each year. Interested candidates must complete the official application form to be considered.  For more information, please contact us at [email protected].

Read more about the work of the IF Working Group on Ageing below.

Activities 2025

• Organised the IF Webinar ‘Living with Spina Bifida and Hydrocephalus: Our Lives, Our Choices’
  On the International Day of Older Persons, the IF Working Group on Ageing held a webinar advocating for the fundamental human right of personal autonomy for the global SBH community, allowing these individuals to shape their own futures and experience the positive impacts that come with it, such as empowerment and achieving independence. Vanessa Caraveo (Chairwoman of the IF Working Group on Ageing) moderated the event and welcomed IF’s international audience, who joined the special celebration. Speakers from both the IF Working Group on Ageing and IF International Youth Group SBH, which included Gerry Maguire (Vice-Chair of the IF Working Group on Ageing) and Su Xiao Vin (Spina Bifida and Hydrocephalus Association Malaysia), shared their inspiring stories and journeys to achieving independence. The event demonstrated the power of connection, shared experiences, and perseverance across generations of people living with SBH.
• Joined the World Spina Bifida and Hydrocephalus Day
  On 25 October, the WSBHD main conference webinar brought together advocates, professionals, and policymakers to reflect on progress and discuss practical steps to accelerate action from improving healthcare and accessibility to strengthening rights-based policies. Vanessa Caraveo (Chairwoman of the IF Working Group on Ageing) represented the IF Working Group on Ageing as a speaker at the World Spina Bifida and Hydrocephalus Day’s main webinar. Vanessa highlighted the need to accelerate action to address healthcare disparities that impact the health and well-being of the growing ageing SBH community. She shared a vision for the future to better support this community and addressed the importance of advocacy in bringing about positive change around the globe.
• Joined the IF Inclusive Employment Webinar
  As part of the World Spina Bifida and Hydrocephalus Awareness Month, IF hosted a webinar named ‘Inclusive Employment and Skills for Life’. The webinar brought together voices from the SBH community, as well as advocates and experts working on inclusive employment policies. Stijn Calders (Spina Bifida Hydrocephalus Belgium) assisted in organising this event, and Su Xiao Vin (Spina Bifida and Hydrocephalus Association Malaysia) was a speaker who shared about employment barriers and proposed strategies for meeting the needs of the SBH community when it comes to creating supportive environments in the workplace.
• Joined the International Women’s Day
  The IF organised the International Women’s Day ‘Accelerate Action’ webinar, where the theme focused on advancing accessibility, women’s empowerment, inclusive education, independent living, protection and safety during conflict and crisis, and gender equality. Su Xiao Vin (Spina Bifida and Hydrocephalus Association Malaysia) explored how to accelerate action on inclusive education and identified several key issues that need to be addressed to eliminate barriers women face in obtaining inclusive and accessible education on a global scale. Participants of the International Women’s Day Webinar emphasised that as a society, there is a need to accelerate action to ensure that no women are left behind.
• Joined the International Youth Day
  Vanessa Caraveo (Chairwoman of the IF Working Group on Ageing) and Su Xiao Vin (Spina Bifida and Hydrocephalus Association Malaysia) were speakers for the IF International Youth Group SBH webinar under the theme ‘Dreaming Beyond Barriers,’ which brought together young people with disabilities and youth activists from across the globe to share their dreams, discuss the challenges they encounter, and explore ways to advocate for a more inclusive future. Along with youth speakers, Vanessa and Xiao Vin shared their inspiring stories about how they were able to overcome challenges they faced as persons living with Spina Bifida. Through their personal stories, participants highlighted resilience, the importance of support networks, and the need for inclusive opportunities.
• Organised a Meet & Greet gathering: IF Working Group on Ageing & IF Youth Group with SBH
  IF established a way older generations with Spina Bifida and Hydrocephalus could mentor younger generations and offer helpful advice on living with these conditions. Thus, the Meet and Greet for both the IF Working Group on Ageing and IF International Youth Group SBH was organised for members of both groups to come together and share their lived experiences. It was a successful meeting for members of both groups, where topics ranging from personal life and employment to independence were discussed and advice was shared. Participants left with the understanding that people with SBH often face similar challenges, which is why opportunities to connect and learn from one another are so valuable.

Activities 2024

• Organised a Meet & Greet: Youth & Ageing with SBH
  Based on the needs of members, IF organised a ‘Meet and Greet’ 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.

• Joined the International Day of Older Persons
  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/

• Present at the 30th International Conference on Spina Bifida and Hydrocephalus
  Dr. Kevin O’Donnell (Spina Bifida Hydrocephalus Scotland) and Gerry Maguire (Spina Bifida and Hydrocephalus Ireland), members of the IF Working Group on Ageing, spoke in the webinar, emphasising the need to better understand the lived experiences of older individuals with SBH.

Activities 2023

• Organised the IF Webinar ‘Getting Older, Living Better: Best Practices for Ageing with Spina Bifida and Hydrocephalus’
  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 ‘Ageing with Spina Bifida and Hydrocephalus: An Overview of Best Practices Around the World’, 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.

• Joined the International Day of Older Persons
  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.

• Participated during the IF COSP16 Side Event ‘Reaching Out Together’
  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 ‘Reaching Out Together: Advancing Rights-Based Advocacy in Underserved Communities through Transnational Twinning’. At this side event, Kevin O’Donnell (Chair of the IF Working Group on Ageing with SBH) and Anđela Radovanović (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.

• Joined the WSBHD23 Conference Accessibility4All
  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 “Ageing With Spina Bifida and Hydrocephalus: An Overview of Best Practices Around the World”. 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.
  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 world’s 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 Kevin’s talk during the conference here.

• Participated during the WSBHD23 Side Event Europe
  As part of the WSBHD23 Side Event Europe themed ‘Current Status on Accessibility in Europe’, 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 Gerry’s talk during the side event here.

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 Ageing’s Chairman, Kevin O’Donnell, 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. To re-watch Kevin’s presentation during the conference, click here.
• IF Report “Ageing With Spina Bifida and Hydrocephalus: An Overview of Best Practices Around the World”.
  The IF Working Group on Ageing published its report “Ageing With Spina Bifida and Hydrocephalus: An Overview of Best Practices Around the World”. 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.
  Read the entire report here.

Projects 2021

• Webinar and Focus Group Discussions “Ageing with SBH”
  IF’s 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.

• The International Conference on Multidisciplinary Care for SBH
  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

• Raising Awareness during the International Day of Older Persons
  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!

• “Ageing Well with Spina Bifida and Hydrocephalus” WSBHD21 side-event
  On October 27th, the IF Working Group on Ageing with SBH held the “Ageing Well with Spina Bifida and Hydrocephalus” 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 Statement on Ageing with Spina Bifida and Hydrocephalus
  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.

• Online Awareness Raising Event – Challenges and Good Practice Supporting Older People with Disabilities
  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 Önnudóttir and was invited as a speaker.

• IF Report report “Ageing with Spina Bifida and Hydrocephalus – Finding from Online Focus Group Discussions”
  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 “Ageing with Spina Bifida and Hydrocephalus – Finding from Online Focus Group Discussions” report

Projects 2020

• 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.
  Watch the webinar on IF’s YouTube channel

• European Commission Public Consultation on the Roadmap for the Green Paper on Ageing.
  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

• 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.
  Find more information about the survey

• 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.
  Check out the slides with the initial findings

• 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.
  Read more about the IF submission