WORKING GROUP ON AGEING WITH SBH

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://staging.ifglobal.org/events/international-day-of-older-persons-2024/

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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.

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.

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.

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.

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.

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.

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 “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 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 Önnudóttir 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 “Ageing with Spina Bifida and Hydrocephalus – Finding from Online Focus Group Discussions” report.

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.

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.

Read more about the IF submission