Our involvement
Lumos is supporting the initiative in various ways.
You can read about Why Lumos supports the Better Health, Better Lives Initiative in our September 2010 Better Health, Better Lives newsletter.
History of our involvement
In partnership with WHO Europe, Lumos co-hosted a consultation session for leading European non-governmental organisations on the draft Declaration in London in December 2009.
A commitment was expressed between WHO Europe and NGO delegates to a partnership in supporting Member States to realise the Declaration’s 10 priorities. Lumos was asked, by the NGOs present and WHO Europe, to continue coordinating NGO efforts in this regard.
Lumos attended the consultation session on the draft Declaration for Member State Representatives in Belgrade in March 2010. Lumos was invited to attend this meeting as an NGO representative and we aimed to ensure the opinions expressed during the consultation session with NGOs in December 2009 were echoed, where appropriate, in Belgrade.
Lumos has funded and coordinated the production of an Easy Read Version of the Declaration and an A1 poster highlighting the 10 Priorities.
Lumos has also coordinated the production of four of the Priority Papers to accompany the Declaration. These papers are written in collaboration with various authors and were launched in Bucharest alongside the Declaration.
In the capacity of NGO coordination, Lumos maintains regular communication on the initiative with relevant organisations active in the field. We collated comments on drafts of the Declaration for consideration by WHO Europe and produced information sharing newsletters on the Better Health, Better Lives initiative.
Involvement of Self-Advocates
The true and meaningful involvement of self-advocates has been a goal of Lumos throughout our involvement with the BHBL initiative. As said best by Shaun Webster, a self-advocate with CHANGE, “We are serious about what we do. We want to change the world, and we want to do it now”. For more information about Shaun and to read an interview with him, please see his click here.
Lumos has facilitated the involvement of self-advocates at each stage of the initiative:
- For the London consultation meeting in December 2009, Lumos developed accessible meeting materials and planned sessions which allowed for small group interaction, participatory activities and longer break times. Inclusion Europe accessibility red, yellow and green communication cards were also used.
- The greatest participation of self-advocates occurred at the WHO high level conference in Bucharest. Lumos funded the participation of six self-advocates (3 from the UK, 1 from Croatia and two young adults from Romania). On the first day, Jane Anthony from Lumos co-facilitated a parallel session for self-advocates with Shaun Webster, from CHANGE. This session gave self-advocates a chance to share their views in an empowering and accessible environment. Jane also facilitated a panel session for self-advocates during the main conference the following day. (picture of panel session?). This panel session allowed self-advocates to feedback from their parallel session and insured their voices were heard by all delegates in attendance. Both sessions were received very well and have been largely credited as one of the real successes of the conference by self-advocates, conference delegates and WHO representatives alike. In the words of Gary Butler, one of the self-advocates in attendance, “I feel very proud for being here. This is the best conference I have been to in a long time because I was included and understand what is going on”.
- Self-advocates have also been involved in creating the Easy Read publications and poster. Inspired Services assisted in the design of the EasyRead version of the Declaration and consulted occurred with their ‘Making it Easier’ group. Lumos has produced the accessible poster in partnership with CHANGE, whose staff with learning disabilities were involved in every stage of the poster design process.
In this video Senada Halilčević – self advocate and steering and drafting group member for the WHO Declaration – tells the story of growing up in an institution in her own words. Other independent self advocates share their experiences of community life in videos which can be viewed here.
Words into Action
Lumos is committed to ensuring the Declaration is translated from words into concrete action. We intend to use the Declaration as an additional tool for assisting our current work in Lumos’ country programmes and are currently exploring additional opportunities to ensure its implementation in countries across Europe.
