Report
Opening
In the chair: Wolfgang Angermann, EBU President.
I. Welcomes
The President formally opened the 10th Annual General Assembly of the EBU, and noted that 36 out of the EBU’s 44 national members were represented. He thanked the hosts, RNIB.
Welcoming speeches were made by:
§ Arnt Holte: President, World Blind Union (WBU)
§ Rodolfo Cattani: Secretary, European Disability Forum (EDF)
§ Betty Leotsakou: (modif.) President International Council for Education of People with Visual Impairment (ICEVI Europe)
§ Lord Colin Low: Vice President, RNIB.
II. Roll Call
Mokrane Boussaid, Executive Director of the EBU, read the list of 44 national members. All were represented, with the exceptions of Armenia, Azerbaijan, Bosnia‑Herzegovina, Georgia, Greece, Kazakhstan, Macedonia and Ukraine.
III. Report by Credentials Committee
Maria Kyriacou, (modif.) Chair of the committee, gave the following breakdown of the delegates and votes:
36 accredited delegations were represented by 84 delegates; there were therefore 86 eligible voters, including the two individuals present in their capacity as Board members. Of these delegates, 35 were woman and 51 were men. 45 were blind; 33 were partially sighted; three were sighted; one was deaf‑blind; and for four delegates, no details were available regarding their vision. Of the 20 member countries that had sent more than one delegate to the General Assembly, 16 were entirely gender‑balanced, one had sent more male than female delegates, and three had sent only female delegates. A total of 226 votes could be cast, 216 to be cast by the representatives of the member countries present and one to be cast by each of the 10 Board members present.
IV. Approval of Programmes
The programme had been circulated previously. The President noted that, as Alberto Durán had been unable to attend the General Assembly, Patricia Sanz Cameo,ONCE Vice-President, would be attending in his place. Subject to this change, the General Assembly gave unanimous approval to adoption of the programme.
V. Appointment of Resolutions Committee
Mokrane Boussaid informed the General Assembly that the following had been appointed by the Board during its June meeting: Kevin Carey (UK), Marie-Renée Hector (France), Elvira Kivi (Sweden), Jessica Schroeder (Germany), and Stanislav Sokol (Slovakia), with Hans Kaltwasser serving as Secretary.
Mokrane Boussaid added that attendees would remain able to table draft resolutions until 18.00 that day. The composition of the Resolutions Committee was approved unanimously by the General Assembly.
Although it had been intended that scrutineers would be announced at this stage, the President noted that too few applications had yet been received. Board members had been asked to put forward further proposals by the time of the morning’s first coffee break.
VI. Obituaries
Julien Aimi (France): President, French Federation of the Blind and Visually Impaired, 1998-2008; former EBU treasurer; Honorary Life Member of EBU – do. 15 April 2012.
Eric Staff (Sweden):Swedish Association of the Visually Impaired, 2005-07 – do. 3 March 2013.
Arvo Karvinen (Finland), General Secretary of the Finnish Federation of the Visually Impaired; Honorary Life Member of EBU – do. 6 October 2013.
Helen Aareskjold (Norway) – Norwegian Association of the Blind and Partially Sighted; EBU Rights Commission – do. November 2013.
Elsa Momrag Hogan (Norway) – EBU Women’s Committee – do. January 2014
Dr Claude Chambet (France) – President, APAM; President, CFPSAA – do. 5 February 2014.
Alan Suttie (United Kingdom) – EBU Elderly Network; EBU Partially Sighted Network – do. 7 February 2014.
Sir Duncan Watson (United Kingdom), Chairman, RNIB, 1975-90; President, WBU, 1998-92 – do. 21 April 2015.
The President paid tribute to the work of these distinguished gentlemen and ladies, and a moment’s silence was observed in their memory.
VII. Keynotes - Making Sense of a Turbulent World: Politics and Inclusion in the 21st Century
1. Presentation by Patricia Sanz Cameo
a. Context
Patricia Sanz Cameo, ONCE, stated that ONCE would continue to demonstrate a firm commitment to the work of EBU: it believed that there needed to be solidarity between ONCE and its European colleagues. Europe was going through one of the most difficult periods in its history, economically and socially, and this was having a clear impact on the rights of people who were blind or partially sighted. However, progress had been made, such as with the Marrakesh Treaty, which Spain would almost certainly be the first country to ratify. Europe could not allow the achievements that it had made in the area of inclusive education and in other areas to be undone, and it was incumbent upon the leaders of organisations present to lead their organisations through these difficult times.
As a result of the financial crisis, social protection systems were being withdrawn from disabled people. Organisations that advocated for the rights of the blind and partially sighted would need to build bridges with other organisations, such as those advocating for the rights of those with other disabilities, social organisations, businesses and local authorities. The ongoing refugee crisis was a particular challenge, not just in identifying of how many refugees with vision impairment were currently in Europe but also in achieving the aims set out in Article 31 of the UN Convention on the Rights of Disabled People.
b. Statistical information
Enrolment levels were low for blind and partially sighted people, and drop‑out levels were especially high, with 21.8% of people with disabilities in Europe withdrawing from school compared to 10.8% of those who did not have disabilities. These challenges in accessing education contributed to the fact that only 47.9% of people with disabilities in Europe were employed, as opposed to 71.5% of people without disabilities. Work intensity for blind and partially sighted people was also very low, and people who were blind and partially sighted had around a 20% chance of falling into poverty, compared to 14.5% among the rest of the population. Although these statistics were for disabled people in general, Patricia Sanz Cameo stated that there was no reason to suppose that the statistics for blind and partially sighted people specifically would be better. To change this situation, EBU and the organisations represented would need to collaborate with a range of other organisations.
c. Future work
Organisations that advocated for the rights of blind and partially sighted people in Europe would firstly need to concentrate on securing full implementation of the fundamental rights of those they represented. Seven European countries had not yet ratified the UN Convention on the Rights of People with Disabilities, and ratification of the Marrakesh Treaty also needed to be a priority. Access to environments was the second area that would need attention: technology had now enabled full accessibility to workplaces and social and family settings, and those present would need to fight to make sure that EU and neighbouring markets applied accessibility principles in all of the products and services that were available in these countries. They should push for approval of the European Accessibility Act and the Web Accessibility Directive.
ONCE called on those represented to recognise that the employability of blind and partially sighted people needed to be enhanced: quota systems and tax breaks were not producing the necessary results, and in some European countries, compliance with these systems was just over 20% in the private sector and 50% in the public sector. Advocacy organisations would need to act as mediators for people who were blind and partially sighted; they would also need to combat discrimination and the barriers that prevented blind and partially sighted people from participating fully in politics, employment, sport and many others areas.
In the area of international cooperation, the EU should work with the EBU, WBU and ICEVI to make sure that international development programmes were inclusive of persons with visual impairment. Patricia Sanz Cameo noted that one in 10 blind children in the world did not attend school. EBU could not do everything in this regard, but should lend its efforts. Advocacy organisations would need to promote a social and solidarity‑based economy, which was compatible with making profits, and EBU could well act as a leader in this field. Capacity‑building within the movement was vital, and other areas would also require the attention of EBU. Patricia Sanz Cameo concluded by stating that EBU could count on ONCE’s support in its future work.
2. Presentation by Kevin Carey
a. Significant challenges
Kevin Carey, Chairman, RNIB, informed attendees that the principal problem areas included an increase in the incidence of childhood blindness through better birth survival, but also because of an increase in poverty exacerbated by welfare cuts and, to an extent, immigration. There was a paradigm shift in the employment market, with jobs moving from the public sector and large corporates to the private sector and SMEs. Increased automation and the emergence of a global market in skills was another issue for blind and partially sighted people, as was the increase in the number of older blind people as a result of longevity. Decreases in public sector expenditure were also a challenge.
b. Goals
Organisations such as those represented would need to determine a rational like-for-like cost for the goods and services they provided. They should rank reach over elite services; simplicity over complexity; customer preference over producer preference; and compare the cost of advocacy with the costs and benefits of problem-solving. Most European organisations for the blind had been established to provide education for a ‘blind intellectual elite’, but demographic trends indicated that these organisations would need to change their spending priorities, which they could not do if they did not know how much things cost. Although mainstreaming in education should be the default position, most countries had not come to terms with this. The lack of early vocational education put unrealistic pressure on transition services, particularly for teenagers with multiple disabilities.
c. Employment
The central problem for blind and visually disabled people was employment; the strategy of employment placement had been relatively unsuccessful, even during the economic boom of the early‑ and mid‑2000s. Now, in almost all European countries, the size of the public sector was decreasing and would continue to decrease, and nations’ capacity to borrow was running out. There was a corresponding increase in the power of global corporations, but these corporations would not be based in Europe because of the continent’s comparatively over‑regulated labour market and financial sector. Rather, Europe would be the home of sales officers for companies based elsewhere.
Innovation would continue to command the highest return on investment, and Europe did not have a credible innovation strategy, due to over‑regulation and inconsistent immigration and skills policies. The continent would be dependent on SMEs, which would be wary of employing people with visual impairments. Automation was removing millions of jobs from the market, and simultaneously, the market for labour was becoming increasingly global in spite of defensive immigration policies. As such, relying on quotas and job placements was no longer a reliable strategy; it would be helpful to compare the cost of a job placement with the cost of providing a jobseeker with capital to invest in an SME, for instance. Blind and partially‑sighted people would need to adjust to the increasing trend towards ‘portfolio’ employment, incorporating a number of part‑time roles. Existing education and rehabilitation services did not equip blind and partially sighted people for this kind of fluid employment, and improperly esteemed academic over social skills.
d. Changing demographics
The most obvious issue arising in the area of social services was demographic; increased longevity meant vastly increasing numbers of blind people, and the only possible solution was volunteering. Some newly‑blind older people might require professional counselling or other intensive support, but most suffered from loneliness and required a large number of smaller services, which could be provided by friends, neighbours and volunteers. The existence of multiple cultures and languages within European nations would also increase the unit cost of services.
The year would be remembered as the point at which the mass migration of people exceeded Europe’s capability to deal with it. Europe could not have the benefits of globalisation without the costs. It would need to be generally accepted that people should exercise power over the organisations that existed for their benefit, rather than perpetuating a power dynamic of ‘benefactor and beneficiary’. Unless the organisations represented adopted a rational approach to the demographics of blindness, organisations would continue to be run for, and by, the ‘blindness elite’. There was a great need for regional and global cooperation, and the EBU was as necessary now as it had ever been, but it needed to be honest, rational and forensic in its activities. In the next three days, the EBU would need to determine whether it was capable of living up to the challenge.
VIII. First Report of Nominations Committee
Branislav Mamojka (Slovakia) informed the General Assembly that too few nominations had been received for the positions that were open. No nomination had yet been received for the Chairman of the Nominations Committee, and three nominations were needed for the positions of ordinary committee members. He invited interested parties to submit their nominations for these positions by 18.00 that day.
The following individuals had been nominated for the position of President: Wolfgang Angermann (Germany) and Fazilet Hadi (United Kingdom).
The following individuals had been nominated for the position of Second Vice President: Barbara Martín Muñoz (Spain) and Vaclav Polasek (Czech Republic).
EBU Business
In the chair: Alexander Neumyvakin, First Vice President, EBU.
I. Announcement of Scrutineers
The following scrutineers were announced: Julie Bertholon (France), Ann Blokland (Netherlands), Javier Guemes (Spain), Judith Jones (United Kingdom), Heike Janke (Germany) and Romain Ferretti (EBU Office).
II. Board Report
1. Composition
The President stated that, to meet the requirements of the EBU Constitution, the General Assembly had adopted a strategic plan for 2011 to 2014 and agreed on a list of topics to be addressed. This had been sent to the newly elected Board for consideration. The 13 nominations to the Board had been in line with the provisions of Article 5, Section 1.2 of the EBU Constitution, and had been uncontested.
Two individuals had resigned from their offices without being replaced: [Tomaso Daniele?], Second Vice President, and Peter Osborne, ordinary Board member.
The Board had had two observers: Rodolfo Cattani (Italy), Chair of the Liaison Commission, and Fazilet Hadi, RNIB Managing Director – Engagement.
From among the Board members, the Finance and Fundraising Committee and Constitution Committee had been re‑established, and the General Assembly Organising Committee had restarted its work. A special working group on strategic planning had been established, comprised of members of the Board.
2. Work of the Board
a. Resolutions
The Constitution Committee had discussed the proposals for amendments to the EBU Constitution that had been referred to the Board by the General Assembly. The results of these discussions had been referred to the Board for approval. Additional proposals had been taken into account, and a concluding draft of the Board’s proposals had been distributed for comments. Regarding Resolution 2011.4, ‘Opening EBU Leadership’, the Constitution Committee had felt that given the ongoing lack of nominations for EBU functions and the lack of finances to meet the expenses associated with membership of the Board, there was no realistic basis for this amendment. The Constitution Committee had recommended restarting this discussion if the situation were to change.
b. Number of meetings
During the period, the Board had held 12 face-to-face meetings and five virtual ones.
In January 2013, the Board had approved a company agreement with the staff of its central office to set clear rules regarding the working conditions of EBU staff. There had been a change of offices, and EBU staff had had to adjust to two changes in their office assistants.
c. Structure
Following the debate at the General Assembly and the respective resolution, the Board had adjusted its structure of commissions, steering groups and networks as follows: the Commissions on Access to Information and on Technology were merged into a single Access to Information and Technology Commission; the Commission on Mobility and Access to Transport had been renamed the Commission on Road Safety and Access to Transport; responsibility for the issue of mobility had been transferred to the Commission on Rehabilitation, Vocational Training and Employment. It had also been decided to terminate the diversity steering groups, with networks to be established for each diversity area, and the remit of the Development Commission had been extended to include capacity building in Central and Eastern European countries.
d. Diversity
As an insufficient number of nominations had been received, the possibility of meeting the EBU’s equality and diversity targets had been reduced. As such, over the period, of 118 functions within EBU, 71% had been occupied by men and 29% had been occupied by women. Of the 93 individuals who had made the status of their vision known, 59 had been blind and 21 had been partially sighted, while four had been deaf‑blind and five had been sighted.
e. Membership
Membership of the EBU was stable; however, in early 2014, the Latvian Society of the Blind had decided to discontinue its membership for financial reasons, and also during 2014, the Belgian Confederation of the Blind and Partially Sighted had been dissolved. The President welcomed the new Belgian national member organisation, Ligue Braille. The Portuguese Blind Union had been created in December 2014. The Centre for the Blind in Israel had applied to the Board for full membership of EBU; this issue had been referred to the Constitution Committee, which had advised the Board to not accept this application to avoid establishing a precedent for non‑European national organisations becoming members. The Centre for the Blind in Israel had therefore been referred to the existing agreement on cooperation that existed between it and EBU.
f. Work of the EBU
Throughout the working period, EBU had produced further action sheets, and had organised an online webinar on improving media relations; had published EU updates and features, including one on public procurement, had won a campaign on public procurement within the European Parliament and had kept its Facebook page updated with information. It had published position papers and responses to public consultations, and had done a large amount of work on the ‘Blind Date’ event hosted in Brussels. The EBU had also published its Access Denied report.
Other work carried out by EBU during this period included progressing its legislative database; tackling the barriers that blind and partially sighted people faced in accessing cultural venues and activities; reviewing the difficulties that blind and partially-sighted people faced in training to qualify as physiotherapists; supporting the Liaison Commission in its lobbying activities regarding the sound level of motor vehicles; lobbying for accessible and standardised payment terminals; surveying EBU member countries regarding such topics as the population of people with additional disabilities and good practice in their countries; pursuing increased collaboration with the European Deaf‑Blind Union; and funding projects through the African Union of the Blind Solidarity Trust Fund.
EBU had also produced a brochure recommending minimum standards and recommendations for low vision services in Europe; creating a network of blind and partially sighted women to serve as a pool of experts that could be drawn upon when delivering projects; presented a paper at the ICEVI Europe conference in Istanbul regarding the importance of early childhood intervention; helped organise a youth seminar with the German Federation of the Blind and Partially Sighted; organised three focus groups in Ireland, Austria and France in association with the European Guide Dog Federation and Age Platform Europe to examine the issues faced by elderly blind and partially sighted people; and had achieved a number of other successes.
g. Dissolution of commissions
The Board had resolved to recommend the dissolution of all existing commissions, and the establishment of expert-based consortiums led by interested international members that would deal with limited‑scope projects, within the framework of the Board’s strategic plan. All EU‑related activity had been pursued via the Liaison Commission, which had held annual face‑to‑face meetings in Greece, Portugal and Italy, with seminars on diverse topics.
h. Ongoing campaigns
EBU’s outstanding campaigns included the Right to Read campaign, pursuing ratification of the Treaty of Marrakesh. There had been reluctance within the EU to ratify this treaty, with ongoing debate about whether the EU had sole or joint responsibility. 21 member states had declared willingness to admit the exclusive competence of the EU, but seven states, including Germany and Italy, were blocking ratification. EBU had been continuously lobbying via specially‑organised events held in the European Parliament. A campaign was also ongoing regarding the accessibility of public sector service websites, and EBU continued to lobby to include mobile apps in the proposed directive on this topic. Work continued on the silent vehicles campaign, and some improvement in the text of the draft report had been secured. Collaboration with the European Disability Forum (EDF) continued, and a memorandum of understanding had been agreed with ICEVI Europe, which would be signed as part of the General Assembly.
i. Presentation of the Arne Husveg Award
The President had presented the EBU Arne Husveg award to Lord Colin Low (United Kingdom), for his outstanding lifelong commitment to the EBU.
j. Financial reforms
Due to the economic crisis, a considerable number of the EBU’s national members had suffered from budget cuts, which had resulted in a reduction in voluntary contributions to the operating costs of the EBU’s office by national members, and in a decreasing willingness to pay the annual membership fee. As such, the Board had devised a new financial structure, with the goal of securing more funds to be able to maintain and develop the work of EBU.
III. Treasurer’s Report
1. Overview
Vincent Michel, Treasurer, EBU, informed the General Assembly that the report would cover the years 2011 to 2015, excluding the first three quarters of 2011 and the final quarter of 2015. The report would present a summary of EBU’s economic results over the course of the past four years, as well as reflections on these figures and recommendations on how the EBU could improve its financial position.
The EBU was financially stable, although the results of the current fiscal exercise had not yet been taken into consideration. Membership payments were relatively stable, although lower than they had been at the beginning of the period, as some countries, including the United Kingdom, had not paid for all of their undertakings. Expenses were stable, although there had been more fluctuation in the area of expenditure, and salaries were also stable, demonstrating prudent management and rigorous salary policy within EBU. There had been a decrease in the level of private donations received by EBU, which would have a significant effect on the level of income received by the organisation during the 2015 fiscal year.
2. Proposed Alterations to EBU Funding
Although the EBU’s finances were stable and would continue to be for the next two or three years, there was still cause for concern about the figures. Two‑thirds of EBU’s resources were drawn from EU projects funded by the European Commission, and owing to the current crisis, this source of resources might be put at risk. As such, the Board strongly recommended to the General Assembly that it adopted its recommendations regarding changes to the EBU’s financing.
Up until the present time, members’ contributions made up less than 30% of the EBU’s total annual budget, divided into a relatively low compulsory fee and a voluntary contribution. Owing to the uncertainty that this model engendered, the Board had decided to recommend that these two income streams be combined into a single compulsory payment, which would vary between member countries dependent on the GDP of the country and the size of the member organisation. It was believed that doing so would enable the EBU to secure the future viability of its activities.
The Board had also resolved to launch a fundraising campaign, with the goal of strengthening the EBU’s capital base. The organisation’s permanent staff did exemplary work, but this team had only been able to have a limited impact, owing to the small size of the team and the fact that the EBU did not have the financial capacity that would enable it to lead on strategically crucial issues. Vincent Michel stated that the EBU was not trying to ‘hoard money’; rather, it needed to have the financial means to promote the rights of blind and partially sighted people, strengthen its staff, and engage in essential studies and campaigns.
The proposed membership fee structure was outlined as follows:
§ Group 1 (€16,000): Denmark, Finland, France, Germany, Italy, Norway, Netherlands, Spain, Sweden, Switzerland, and the UK.
§ Group 2 (€7,000): Austria, Belgium, Iceland, Ireland, Luxembourg, and Russia.
§ Group 3 (€2,500): Croatia, Cyprus, Czech Republic, Estonia, Greece, Hungary, Lithuania, Malta, Poland, Portugal, Slovakia, and Slovenia.
§ Group 4 (€1,000): Albania, Armenia, Azerbaijan, Belarus, Bosnia, Bulgaria, Georgia, Kazakhstan, Macedonia, Moldova, Montenegro, Romania, Serbia, Turkey, and Ukraine.
After discussions with a number of member organisations, derogations had been agreed for the following countries in the following sums: Austria (€2,500), Czech Republic (€1,500), Estonia (€1,250), Finland (modif. €13,200), Germany (modif. €13,250), Hungary (modif. €1,500), Iceland (€2,200), Ireland (€3,000), Moldova (€600), Serbia (€600), and Slovakia (€1,500).
IV. Presentation of Draft Strategic Plan
1. Background
Fazilet Hadi, RNIB Managing Director – Engagement, stated that the Board had given a lot of consideration to its proposed strategy. Discussions had begun in September 2014, and the resulting draft had been shared outside of the Board in March 2015. Comments on this draft had been received from several countries, and the strategy had consequently been amended. The version that had since been circulated was the second draft, which the Board believed had taken into account the comments that had been made. An implementation framework had also been circulated in June 2015.
2. Context
The situation was difficult for blind and partially‑sighted people in all of the countries of Europe, including in the areas of education, employment, and the loneliness faced by visually‑impaired older people. In the present European political context, it was much harder to ensure the passage of good regulations and laws; governments did not want to make new laws, and the EU had become very difficult to work with. There was no country that was not experiencing financial difficulties, with both individual blind and partially sighted people and the organisations that represented them fighting for funding. In addition, these organisations had been set up many years ago, and were not always relevant to the current situation.
3. Aspirations
Everyone in attendance at the General Assembly was there because they cared about the situations of blind and partially sighted people. The vision of these organisations remained the same: that blind and partially sighted people in Europe should receive the support they needed; enjoy self‑determination; be fully integrated citizens, and live in a Europe that signed up to the UN Convention on the Rights of Persons with Disabilities. The Board had considered what the EBU could achieve at European and national levels, and the first goal that it had set itself was to advocate for the needs of blind and partially sighted people. They could ensure that their voice, speaking on behalf of blind and partially sighted people across Europe, was clearly heard; that the EBU had the right evidence, and made the right representations to the EU, other European bodies, businesses and global authorities.
The EBU also needed to ensure that it was knowledgeable and had the right research available. Presently, there was a lack of good data; this needed to be acquired, and best practice needed to be shared across 44 countries, which was an area in which the EBU had historically been strong. Thirdly, organisations advocating for the rights of blind and partially sighted people would need to support each other to be stronger in their own countries, and build capacity.
4. Values
The values of the EBU would include self‑determination, which was very important, as well as diversity. The EBU would need to bear in mind the differing needs of blind and partially sighted people according to their gender, their ethnic origin, their sexual orientation, and any other disabilities that they had. It would need to work in partnership with organisations, and respect and meet the needs of blind and partially sighted people, bearing in mind that these were different groups with some different needs.
5. Strategic Priorities
The EBU had three strategic priorities: to improve the lives of blind and partially sighted people; to strengthen national organisations; and to improve communication and networking. Regarding the former, blind and partially sighted people experienced challenges in every aspect of their lives; however, the Board had felt strongly that discrete goals would need to be set, as ‘if we tried to do everything, we would succeed in nothing’. They had needed to be realistic, and prioritise.
Five fundamental areas of work had been identified. The first was that of children and young people, and work in this area would be pursued in partnership with ICEVI. The three sub‑areas of focus had been agreed as access to curriculum materials, Braille literacy, and habilitation. The second fundamental area had been that of rehabilitation, low vision, and compensatory benefits: when someone lost their sight, they needed to be given the skills and confidence that would allow them to live with this sight loss. Low vision services would be crucial for a lot of people, and the extra costs that would accrue made compensatory benefits a necessity.
The third area was employment, an area in which the position of blind and partially sighted was worsening. The EBU would focus on supporting blind and partially sighted people to both get a job, and progress within their career once they had secured a job. The fourth area was access to information, goods and services, to be pursued via advocacy for a European Accessibility Act and in other ways, and the fifth was access to the environment, in which the EBU would concentrate on making public space accessible, promoting audio announcements on buses and trains, and ensuring that silent cars were not a danger to blind and partially sighted pedestrians.
The EBU would aim to strengthen its member organisations, building on the results of the EBU at 30 survey. In particular, it would support organisations that were experiencing funding challenges, by sharing best practice and knowledge regarding sources of funding, and bolster organisations’ digital capabilities, as well as their digital networks and knowledge‑sharing capabilities.
6. Conclusions
Ultimately, although the strategy was a good framework, it would not mean anything unless it could be implemented. The Board had reviewed the activities of the EBU, and had determined that rather than have Commissions with general briefs, the EBU should have tightly‑defined project groups with clearer delivery plans, outcomes and timescales. It was intended that each year, the Board would identify projects that the member organisations regarded as important and determine an organisation that would act as leader. This lead organisation would prepare a plan and consult widely with the EBU’s membership, while remaining responsible for delivery. Equality and diversity issues would need to be integrated into these projects, as well.
They also felt strongly that equality and diversity issues had to be integrated into these projects. It was not enough to have a project that did not consider gender, multiple disability, learning disability, etc. The Board had proposed a number of projects. If they wanted to feed in views about key projects that should be worked on at European level, they should speak up at the workshops, and the new Board would take this into account when determining the finalised list of projects for 2016. Fazilet Hadi concluded by stating that to be successful in this strategy, the Board would require the support, creativity and energy of the EBU’s member organisations.
V. Voting
The President invited members of the General Assembly to make known any objections they had to the Board Report that he had presented. There were none, and the Board Report was unanimously accepted.
Regarding the Treasurer’s Report, (modif.) Thorkild Olesen (Denmark) stated that he did not believe that there had yet been enough discussion of the proposed fee structure. Vincent Michel replied that the decisions that he had presented had been based on discussions that had taken place within the Board, which had been communicated to national members. Few national members had disagreed with the proposed fee structure, although Denmark had been an exception. The intention of the proposal had been to ensure that the EBU had a sustainable financial footing going forwards; it was now for the General Assembly to decide whether or not they agreed with the proposal.
The President stated that two separate issues were under consideration: whether the Treasurer had given an appropriate report under the constitution, and whether the General Assembly agreed with the proposed fee structure. He asked the General Assembly to vote on the question of whether the Treasurer’s Report had been delivered properly. The Assembly unanimously agreed that it had been.
The President invited members of the General Assembly with reservations about the proposed fee structure to make their comments at this point, before a vote took place.
(modif.) Thorkild Olesen stated that, although he recognised the need for economic stability within the EBU, a large number of the EBU’s member organisations were struggling to raise funds themselves. He believed that it was both ill‑advised to mandate payment in this way, and wrong in principle to combine the voluntary and mandatory elements of the fees; rather, he would propose that the voluntary contribution be increased.
Geert Joosten (Netherlands) stated that he did not object to combining the two elements of the fees, but he did not believe that the parameters used to determine the fees had been the right ones. The GDPs of the countries in Groups 1 and 2 were very similar, but the fee levied for organisations within Group 1 was significantly higher. Although he had requested an explanation of this in the past, none had been received. Vincent Michel replied that the groups had been decided on as a result of discussions within the Board and the Finance Commission; the starting point had been the nation’s GDP, but grouping had also been affected by the size of each country’s organisation.
Alexander Neumyvakin (Russia) noted that the General Assembly retained the right to instruct the Board to review as soon as possible – which could be within a quarter – the groupings that had been proposed. He added that the EBU would not be able to pursue its activities without a steady revenue stream.
Håkan Thomsson (Sweden) stated that the new fee structure was acceptable from his perspective, but transparency regarding how this money was spent was vital.
The President invited members of the General Assembly to vote on whether it accepted the proposed fee structure. The General Assembly voted via voice vote, and the proposed fee structure was agreed by a vote of 20 to 11, with four members abstaining or not present. The proposed fee structure was therefore agreed by absolute majority vote of the representatives present.
VI. Workshops
1. Group A
Fazilet Hadi informed those present that they would have the opportunity to discuss the proposed strategy, what was important within it, and how it should be implemented.
Mokrane Boussaid invited Fazilet Hadi to elaborate on how national members would lead projects, and how unexpected developments that occurred once the strategic plan and projects had been agreed would be taken on board. Fazilet Hadi replied that it was intended that the Board might decide that it wanted to develop rehabilitation standards for Europe, to be implemented by each country. A country with a good track record on the topic of rehabilitation would volunteer to lead this project; this country would invite other national members to join, and create a plan to complete this project within 12 months, with regular reports to the Board as to their progress. Timescales could be adjusted in the event of unexpected developments.
Håkan Thomsson stated that this appeared to be a good way of working, and the strategic plan was promising. It was much better to work on projects in this way than via the Commissions, which were difficult to convene and did not have enough resources. It would be vital for the countries that led these projects to be given the resources that they needed.
[Mokrane Boussaid?] stated that he also agreed with the ‘projects’ concept, particularly as this would not divert the attention of the EBU itself from its other responsibilities. However, one caveat was that projects were not always good for organisations, particularly if they ended up doing too many of them: they became used to earning their incomes from projects, rather than in other ways, and could spend too much time on projects rather than, for instance, advocacy.
Malgorzata Pacholec (Poland) stated that her organisation had had very good experiences with projects, but it was difficult for an organisation to base its work only on them. Money was not available for all projects, so sometimes organisations’ agendas were shaped by what funding was available.
[Marjakaisa Matthíasson?] (Iceland) stated that she liked the idea of doing projects; it was a good and efficient way to use the structure that EBU had. However, she asked whether it was not possible that smaller countries and organisations would be excluded from leading projects because of their size. Fazilet Hadi replied that she did not think that this would be a problem. Leading a project did not mean doing all of the work for it; rather, it meant bringing together different parties, coordinating them and facilitating their work. Iceland, for instance, might bring together a mixture of countries and share tasks while retaining responsibility for the overall plans. Even if smaller countries felt they could not take on responsibilities like these, Fazilet Hadi still wanted to see them represented in project groups, as the perspective of smaller organisations needed to be represented.
A Norwegian delegate noted that, in his country, it was often not possible to acquire funds for international projects. This was likely the case elsewhere, and might lead to difficulties in national organisations funding projects; the EU would not be able to fund everything. Fazilet Hadi replied that the strategy envisioned that some projects might attract EU or external funding, but the EBU had been primarily hoping that its own membership would contribute expertise and knowledge.
A delegate from Slovakia agreed that leading international projects was difficult for small countries, although these projects were often useful. The money that his organisation received from the Slovakian government was often earmarked for specific work streams, as well, and could not be diverted for projects such as these. To make this work, smaller national organisations would need more help.
Fazilet Hadi asked what challenges attendees believed the EBU might face. Neven Milivojevic (Sweden) replied that the use of the word ‘project’ might be misleading: what was actually being discussed was a new way of working, with limited timetables. There were areas in which the EBU could do more to support member countries, both small and large; in addition, a number of EU programmes supported cooperative projects between three or more countries.
Malgorzata Pacholec stated that the projects should be carried out collaboratively, involving small and large organisations; they should support each other, and exchange experience and practice. It might also be the case that well‑funded organisations could apply for project funding on the European level, and invite smaller organisations to work together.
Fazilet Hadi explained that the Board envisioned beginning with 10 projects, most of which would last for a year but some of which might run longer. She invited attendees to list topics that were priorities for them, and the following points of view were expressed:
Niklas Mattsson (Sweden) stated that education for blind and partially sighted people would be his central priority, particularly encouraging young people to continue with higher education.
[Egan Rasmussen?] (Norway) stated that he would like to see a rehabilitation standard for all of Europe, which would require EU legislation that the EBU would need to agitate for.
Marjakaisa Matthíasson stated that she would like a project to take place dealing with the accessibility of websites for blind and partially sighted people belonging to smaller language groups. She would also like to research the employment situation as it applied to women between the ages of 18 and 67.
Anita Svenningsson (Sweden) stated that she agreed with the importance of emphasising digital accessibility. Improving the situation of blind and partially sighted elderly people should also be an area of focus, and she would like to see more done in the area of Braille literacy.
Malgorzata Pacholec stated that EBU member organisations ought to work together to create a standard dealing with access to public space.
Jakob Rosin (Estonia) stated that he would also support work being done in the area of digital accessibility for smaller language groups. He would also want to raise awareness regarding regional media for the blind with broadcasters and producers.
Minna Kejonen (Finland) stated that she would like to see clear standards set in the area of accessibility, and how to facilitate independence for blind people.
Sándor Nagy (Hungary) stated that, in discussions about accessibility, special consideration needed to be given to the accessibility of public traffic.
Angelina Pimpinella (Italy) stated that she would be interested to know what the EBU was intending to do in the future with respect to deaf‑blind specific issues. Over the last four years, a lot of activity had taken place; she had coordinated the first EBU deaf‑blind women’s forum, and a number of suggestions had come from this that she would like to see implemented. She would also propose carrying out a larger study regarding discrimination against deaf‑blind women.
Tomaz Wraber (Slovenia) stated that there was no shortage of ideas; the problem was having the money to put them into effect. The EBU’s timing was also potentially too restrictive: problems such as rehabilitation and literacy were both wide‑ranging and basic, and they could not be solved in the course of one year. The funding necessary to put the findings of a project into effect would also be needed.
2. Group B
Unn Ljoner Hagen (Norway) invited those present to consider both the 10 priorities set by the Board, and how the strategic plan would work.
Ann Jönnson (Sweden) stated that over a year ago, the Board had begun its work of identify important areas and themes to focus on in the coming years. They had agreed they needed fewer areas in the strategic plan than had been in the previous plan. She asked delegates whether the strategic plan gave an accurate picture of the challenges facing the EBU, or whether anything significant had been missed; whether they had any ideas regarding the projects that the EBU could engage in. She would not recommend extended discussion of precisely how the plan would be implemented, but rather, for delegates to propose the ideas they had.
Des Kenny (Ireland) noted that Kevin Carey had talked about looking to the future, and bearing in mind the diversity of sight loss, particularly low vision. However, the strategic plan still appeared to focus on the needs of totally blind people, rather than low vision, and especially low‑vision elderly people. He would like to see more focus on this. Unn Ljoner Hagan replied that this was a good point: the changing demographics in Europe made this a particularly acute issue.
One delegate stated that she would want the EBU to take into consideration the final comments made by the UNCRPD to the Board. One of these had been to officially recommend Braille as a language of the European Union and within individual member states. This was an important issue among people with visual impairment.
John Heilbrunn (Denmark) stated that these observations could be taken into account. However, a number of EBU national members did not belong to member states of the EU, so focusing too much on these might divide the EBU, although they were helpful. Additionally, young people as well as elderly people faced challenges as a result of low vision, including isolation and struggling with their education. Unn Ljoner Hagan stated that the way to put John Heilbrunn’s recommendations into practice would be to run separate projects for young people and elderly people, focusing on diversity.
Tony Aston (United Kingdom) commented that the technologies that existed needed to be available to blind and partially-sighted people; it was particularly important for these people to be able to access up‑to‑date information regarding public transport, via their smartphones. The EBU should encourage the providers of this equipment to follow Apple’s example in making it possible for blind and partially‑sighted people to access this information in an appropriate format, and also ensure that these people had the knowledge and training to make use of the information.
Marie-Renée Hector (France) stated that having worked as a teacher, partially‑sighted people with very low sight were sometimes not taught Braille. When they reached their mid‑teens, they had been stymied in their studies because they found it too difficult to read. She believed that early learning of Braille should be emphasised by the EBU. Ann Jönnson stated that she agreed; as a person with very low vision herself, learning Braille had been very useful to him.
Birgitta Blokland noted that the Board had proposed that EBU national members should lead these projects. She asked what thought the Board had given to ensure that diversity was being taken into account under this new model; the networks that had been put in place previously had enabled the creation of diverse project groups. The Low Vision Network was concerned that there would not be the right amount of communication between the Board and the networks of experts in future. Unn Ljoner Hagan replied that this was important, but the EBU would have to be practical. There were technical challenges: communication via Twitter, for instance, was limited in the amount of content it could contain. The new Board would take this into consideration.
Birgitta Blokland added that a decision would need to be made when the projects were launched about exactly what would be within their scopes. In the past, the success of projects had been heavily dependent on who was included in the network of the project manager, so partnership with diverse groups was very important. Loneliness was a theme that the EBU should particularly concentrate on.
A representative from the Netherlands commented that at a previous advocacy event, one topic that had been highlighted had been the accessibility of devices such as washing machines and smartphones. The EBU should undertake a project designed to encourage manufacturers to make their devices more accessible. Elaine[?] (Ireland) added that ovens were a particular issue for a lot of blind and partially sighted people; they were becoming increasingly inaccessible. There also needed to be further consideration of how the needs of people who had been blind their entire lives and those of people who went blind later in life differed, and for increased precision when discussing blind and partially sighted people as a group.
David Adams (United Kingdom) stated that guide dogs should be included in consideration of accessibility issues; they allowed blind and partially sighted people to participate much more actively in society, but if a person was denied access to a place or service because they had a guide dog, they were being discriminated against and potentially isolated further. The EBU had not included guide dogs anywhere in the General Assembly’s agenda; he would like to see this emphasised more.
Tony Aston stated that there was not much within the strategy document that specifically addressed the needs of visually impaired refugees. Hopefully, there should not be many of these, but there would undoubtedly be some, and these people would need very specialised support. National and local organisations would need to be provided with the tools to help these people, and the governments that were attempting to deal with the issue of refugees would need assistance, as well. The EBU was probably the only European organisation that had the reach and capability to help these people, but it would need to give this significant thought, and establish a planning group to deal with it. Ann Jönnson replied that a resolution had been tabled regarding this topic. This issue had only arisen relatively recently, but she believed that this would be an important task for the EBU going forwards.
María Jesús Varela Mendéz (Spain) stated that the EBU ought to do more work on improving the digital literacy of blind and partially sighted people. Elderly people who lost their sight would need help in accessing services that, in a lot of cases, were only available via the internet.
Des Kenny stated, regarding objective 2, as leaders in their organisations, it was incumbent on them to find its own resources and identify for themselves how to organise training and development. It should not be phrased in the way that it had been phased in the strategy.
Vokin Perić (Croatia) stated that visually impaired people’s accessibility to culture was something that the EBU would also need to bear in mind; not just as consumers, but also as active participants and producers. Better support should be offered to blind and partially sighted artists.
John Heilbrunn noted that one of the values in the Strategic Plan was to support blind and partially sighted people in developing countries. He had been hoping to emphasise this in the past, but this work had not taken place to the extent that he would have wanted; he would encourage the new Board to focus on this.
3. Group C
Maria Kyriacou (Cyprus) stated that they should discuss three main points: firstly, the strategic plan presented by Fazilet Hadi; secondly, the 10 priority projects outlined by the Board; and thirdly, the methods of implementation proposed for the new working period. The contributions of the delegates would be very important; they would be submitted to the new Board. The Strategic Plan consisted of seven sections, including the EBU’s vision and its areas of priority. For each priority, a set of objectives and expected outcomes had been listed. She invited feedback from the delegates on this.
Christian Hugentobler (Switzerland) noted that Braille did not appear in the EBU’s list of strategic priorities. This was important to all blind people; it was the foundation of their education. Maria Kyriacou replied that the first objective, dealing with children and collaboration with ICEVI Europe, did include Braille literacy, but it was possible that the Board could be advised to broaden the scope of Braille education. Christian Hugentobler stated that it ought to be explicitly included in objective 4, as well.
A delegate stated that objective 3 should be rephrased. Although it was an important objective, it would be vital to have exact statistics stating how many blind and partially sighted people were employed. It should state also that the EBU would also campaign for Eurostat to produce reports regarding people with disabilities and their employment situation within Europe.
A delegate noted that in 2009, the International Traffic Medicine Conference had taken place in The Hague. It had been submitted at this conference that, in the future, visually impaired people would be able to drive cars in the Netherlands by using bioptics. Since then, a lot of visually impaired people in the Netherlands had learned to drive; they had not met the standards of visual acuity on their own, but had been allowed to use bioptics to do so. This had been a productive initiative; the same had taken place within Belgium. He believed the EBU should campaign for this kind of enlargement of blind and partially sighted people’s freedoms; he also noted that it had been said at this conference that, in 2019, the technology would be available to enable self‑driving cars. Google had announced that its cars would be available in time for 2019, and he would ask the EBU to advocate for the acceptance of these across Europe, with visually impaired people permitted to drive these independently.
Maria Kyriacou invited the delegates to discuss the Board’s 10 priority projects. A delegate stated that the seventh project could also include self‑driving cars.
Another delegate asked how the new project groups would be comprised. Projects also needed to have defined outputs; regarding the first, making the lives of visually impaired people better in Europe, it was not clear how the success of this goal would be measured. Maria Kyriacou stated that they would carry out specific projects with an accountable outcome, specific objectives and a timeframe. Calls would go out for national members to volunteer to act as lead; this person would then need to create a network, recruit members, finalise the objectives and the timeframe of the project, and set its scope. It was her understanding that each area included specific projects, such as the identification of good examples of Braille teaching, but how this would be done would be decided by the working group in question.
Jessica Schroeder (Germany) noted that one target indicator had been listed as studying certain areas; for instance, employment or compensatory allowances for low‑vision people. This would be a good project for 2016, but the Strategic Plan did not make clear what would result from this work. The indicators might not be strong enough to make it clear how a particular outcome would be achieved. Maria Kyriacou noted that the Board intended, when projects were submitted, for these to contain recommendations arising out of the work that had taken place. Jessica Schroeder added that there ought to be a stronger monitoring mechanism; although Board links had been appointed for the different projects, this had not always been enough in the past. The burden on individual countries and organisations might be too much without this additional support.
Andreas Bethke (Germany) stated that the EBU would need to look at the EU’s own agenda when determining what projects to pursue, and the agendas of other organisations. He also believed that there was not enough emphasis on the needs of low‑vision people within the proposed projects. Maria Kyriacou noted that the ninth proposed project dealt with this, empowering people via the VISAL workshop programme. The Low Vision Network had also produced some toolkits to help with this work. Jessica Schroeder stated that the German Federation of the Blind and Partially Sighted would want to see an emphasis on elderly people who began losing their sight in their old age, and who did not necessarily lose their sight but remained in a situation of low or very low vision. Counselling services in the various European countries would need to be made available.
Rose‑Marie Lüthi Kreibich (Switzerland) stated that a project was presently ongoing with the University of Zurich to identify how elderly people with low vision with no existing contact with blind and visually impaired people’s organisations could be helped. A project on how Braille could be better taught was also ongoing. She asked whether countries would be asked what projects they presently had ongoing. Maria Kyriacou replied that this would be very important. It could be included in the identification of examples of good practice, but the Board would also take it into account when determining who should lead a project.
Maria Kyriacou invited the delegates to discuss the implementation of these priorities.
Christian Hugentobler asked how the EBU would make sure that there was follow‑up on these projects. Not all of these projects might be completed by the end of 2019. Maria Kyriacou replied that the Board would need to take into consideration the recommendations made by the project leaders at the end of each project; it would be their responsibility to make sure that follow‑up took place, and this would be made clear to the new Board.
A delegate asked how funding for these projects would be secured. Maria Kyriacou stated that some commissions and networks had, in the past, needed to submit budget proposals for specific projects. The new Board would need to look into this, and make this as clear as possible to national members. She added that it was generally a particular person within an organisation who led a project; one of her concerns was whether information about this project would be available to all people working for that organisation. It had been proposed to maintain networks for the purpose of recruiting for these projects.
Markus Wolf (Austria) stated that the initiative was a good one; the system that had been in place previously had also been good, but what was now proposed might make the work of the EBU more flexible. However, he was concerned that this might also slow down the work of the EBU, as a broad group could not be brought together very quickly. The EBU would probably need to maintain databases of people with various types of expertise, in order that when problems arose, they could be addressed quickly. Andreas Bethke commented that they tried to work this way in Germany, with a list of external experts who could be consulted. This was a good way of working, but the EBU would need to maintain its knowledge of what expertise existed.
VII. Reports from Workshops
1. Report from Group A
Fazilet Hadi informed the General Assembly that her group had focused on projects and how the new structure would work. There had been broad support for moving towards projects with more specific goals and delivery plans. However, there had been some concerns as well: the use of the word ‘project’ might be too bureaucratic, rigid one‑year timeframes might be too restrictive, smaller countries might be excluded from leading projects or unable to do so, and external funding might not always be available to facilitate these projects.
Asked to list their priorities, members of Group A had named Braille literacy, higher education, rehabilitation standards for Europe, and digital accessibility for minority languages in Europe, as well as discrimination against deaf‑blind women and assessing women’s employment prospects. Other priorities mentioned had been raising broadcasters’ awareness of audio description options, and increasing the accessibility of public spaces.
2. Report from Group B
Romain Ferretti informed the Assembly that Group B’s discussions had focused on five key topics that EBU could work on in the forthcoming years. These had been diversity, particularly in relation to low vision and the elderly; accessibility, particularly in the context of technology and providing appropriate materials; international solidarity, both for refugees and for EBU’s poorer members; Braille, and encouraging early learning of it; and culture, with EBU encouraging members to support blind and partially‑sighted artists.
3. Report from Group C
Maria Kyriacou stated that her group had focused on activities and objectives, and concerns regarding the work that was to be done. It had been agreed that Braille should be promoted, as should special products for the visually impaired; better employment statistics should be acquired, in close collaboration with Eurostat. The EBU should maintain a list of experts who could lead projects; it should also emphasise the issues of silent cars and everyday adaptation for those with low vision.
VIII. Amending the EBU Constitution
1. Preamble
The President noted that the relevant provisions in Article 8, Sections 1.1 to 1.3 of the EBU’s Constitution, had all been fulfilled by the proposed amendments in front of the General Assembly.
The General Assembly would be asked to vote on proposals put forward by the Board, as well as on the constitutional amendments put forward by Sweden and Iceland. These had been referred to the Board for further discussion and had been discussed by the Constitutional Committee.
Article 8, section 1.4 of the EBU’s constitution stated that a motion proposing an amendment had to be passed by a two‑thirds majority of those present and voting at the General Assembly’s meeting. Abstentions would be ignored.
2. Voting
a. Amendment 1
The first amendment concerned a proposed rewording of Article 5 of the EBU’s Constitution. At present, the Board consisted of the officers and eight Board members; the proposed amendment read:
‘The Board shall consist of the President, a first and second Vice President, a Secretary General, a Treasurer, and up to eight members’.
The reason for this proposed amendment was that the Board had lost members during its last term of office, and sometimes did not have enough nominations to proceed with its work. The President invited questions from the General Assembly.
Rudolf Volejník (Czech Republic) asked whether, if the vote were to be passed, the changes to the composition to the Board would take place immediately, or only after the 10th General Assembly of the EBU had been closed. The President replied that, as per Article 8, Section 1.5 of the Constitution, the General Assembly decided when an amendment would become operational. It was the Board’s proposal that the amendment should come into effect immediately after voting took place, in order that the following election to the Board could take place under the new rules.
The President asked members of the General Assembly to vote on this amendment, and it was passed unanimously.
b. Amendment 2
The President explained that the second proposed amendment was related to the first. During the previous term of office, one or more Board members had resigned or had had to abdicate their function. At present, replacements were voted on via a complex postal ballot system, which was difficult to put into effect. The proposed amendment read as follows:
‘If, during a work period, an officer’s position becomes vacant, the Board shall fill the vacant seat by appointing one of the ordinary Board members in office. In doing so, special consideration shall be given to improve the gender balance amongst the Board’s officers.’
The President asked members of the General Assembly to vote on this amendment, and it was passed unanimously.
c. Amendment 3
The third amendment, regarding Article 8, Section 2.1, was concerned with setting out sanctions regarding unjust non‑payment of the annual contribution to EBU. The proposed wording was as follows:
‘The membership contribution for any financial year shall be determined by the General Assembly based on objective criteria set by the Board and on contractual agreements between the organisation and its national members. It will be payable by no later than 30 June in that year.
‘If in any financial year a national member fails to pay its membership contribution, it shall explain the reason for non‑payment and propose the measures that will enable payment to be made as soon as possible.
‘If it appears to the Board at its meeting immediately before the opening of a General Assembly that a national member is in arrears with its contributions and that it has failed to provide satisfactory explanations for non-payment, the Board may deprive that national delegation of one or more of its votes at the General Assembly.
‘If it appears that a national member is persistently in arrears with its membership contributions, and if the explanations for non‑payment are not credible or have led to no improvement, the Board may at any time deprive that member of its national member status. The Board’s decision shall come into effect immediately after, but will have to be confirmed by the GA, based on a report by the Treasurer explaining the Board’s decision.’
The President asked members of the General Assembly to vote on this amendment, and it was passed unanimously.
d. Amendment 4
The Constitution Committee had discussed in detail the amendments put forward by Iceland and Sweden, and the Board had attempted to find a solution that preserved the amendments’ intent while retaining readability and consistency and avoiding repetition. Many of the amendments concerned the replacement of the word ‘people’ in the constitution with ‘women and men, girls and boys’. The Board’s proposal was that a pre‑clause should be entered into the EBU’s constitution, reading as follows:
‘In this constitution, “blind and partially sighted people” refers to blind and partially sighted people of different genders and of all ages.’
The President asked members of the General Assembly to vote on this amendment, and it was passed unanimously.
e. Amendment 5
The President stated that, by having passed this clause, the General Assembly had made a number of sections within other proposed amendments unnecessary, including the one that was to be voted on next. This amendment, which was to Article 2, Section 1.2, also contained the following proposed change, which the Board recommended adoption of:
‘To promote the advancement of blind and partially sighted people, including those with additional disabilities, with the goal of achieving their equal rights as citizens and full participation in society; if necessary, by special legal or administrative measures.’
The President asked members of the General Assembly to vote on this amendment, and it was passed unanimously.
f. Amendment 6
The next amendment to be considered by the General Assembly had proposed the following change to article 2, section 1.5: to remove the words ‘strive for’ from the sentence ‘strive for equal representation and participation of…’, and insert the word ‘ensure’ in its place. However, the Board did not recommend adopting this amendment, due to the difficulty that this would present.
The President asked members of the General Assembly to vote on retaining the existing wording of Article 2, Section 1.5, and this motion was passed unanimously.
g. Amendment 7
The Board recommended adoption of the next proposed amendment, which would also amend Article 2, Section 1.5, to read as follows:
‘To strive for equal representation and participation of gender, age and blind/partially sighted/low vision persons in its activities and in the selection by national members of delegations to the General Assembly, in elections to the Board, in committees, and in appointments to commissions, committees, and working groups.’
The President asked members of the General Assembly to vote on this amendment, and it was passed unanimously.
h. Amendment 8
The Board recommended adoption of the following proposed amendment to Article 2, Section 1.7:
‘To seek to achieve equalisation of opportunities for all women and all men with disabilities, especially men and women who are partially sighted, in all areas of life.’
The President asked members of the General Assembly to vote on this amendment, and it was passed unanimously.
i. Amendment 9
An amendment to Article 6, regarding equality and diversity in the composition of commissions, committees and working groups, had proposed a preamble to this article, which read:
‘All commissions, committees and working groups shall be composed on the basis of balanced representation of gender, age and blind/partially sighted persons when appointing members to commissions, committees and working groups.’
The Board proposed alternative wording, which read as follows:
‘The Board shall compose commissions, committees and working groups based on the expertise of nominees, and bearing in mind the need for balanced representation of gender, age, degree of sight loss, and geographical origin.’
The President asked members of the General Assembly to vote on the amendment as modified by the Board, and this was passed unanimously.
j. Amendment 10
The next amendment dealt with the Nominations Committee, and had read:
‘In order to ensure a sustainable Board with a balanced representation of age, gender, blind/partially sighted and geographical origin, the Nominations Committee may seek candidates, and thereafter contact member organisations to confirm their support.’
The Board agreed with the motivation underlying this proposed amendment, but recommended its own wording, which observed the sovereignty of national members:
‘If it appears to the Nominations Committee that there will not be enough nominations to fill the seats available in a way that ensures balanced representation in terms of gender, age, blind/partially sighted and geographical origin, it may, on its own initiative, propose potential candidates for nomination by the national member in the countries where they reside. The decision to nominate shall ultimately rest with the national member concerned.’
The President asked members of the General Assembly to vote on the amendment as modified by the Board, and this was passed unanimously.
k. Other Amendments
A number of proposals had been made by Sweden and Iceland to repeat in this section statements that had already been made in Article 4, concerning the Nominations Committee. The Constitution Committee had felt that the EBU should avoid repetition in its Constitution as much as possible, and the Board had rejected all of these proposed amendments.
The President asked members of the General Assembly to vote on whether these amendments should be adopted. It was unanimously agreed that they should not be.
Sight Loss Prevention and Treatment
In the Chair: Ann Jönsson, EBU Board Member.
I. Sight Loss and its Prevention on the Public Health Agenda
Richard Wormold, Consultant, Moorfields Eye Hospital, stated that he had spent his entire career in the field of public health and epidemiology. The healthcare sector needed to know how many people experienced sight loss, because they needed to plan services and identify whether new interventions were making a difference. It was not yet possible to say whether age‑related macular degeneration incidence was increasing, or whether the increased number of cases presenting was a result of the aging population. Prevalence and incidence were different metrics; to get useful information, it was necessary to examine closely controlled cohorts. This was particularly true in the case of conditions such as sight loss, in which a decision needed to be made as to when exactly a sufferer had lost their sight. The WHO had a definition, but not one that was widely used; it was very important to have clear definitions.
A paper had been published in May of 2014, looking at data from 1990 to 2010, which Richard Wormold had played a part in drafting. This had identified that between 1990 and 2010, there had been a halving of the number of blind people in Europe and highly developed countries, and the prevalence of moderate to severe visual impairment had decreased from 17% to 12.6%. The main cause of visual impairment had been macular degeneration, which was strongly related to increasing life expectancy. However, the data that this study had been based on had contained significant gaps: it had drawn on four national studies carried out in Western Europe over the period, and about 10 local surveys; the data from Eastern Europe and Central Europe had been contained within only two surveys.
Richard Wormold and some of his colleagues had constructed a model for the UK using a slightly different data set, including people in care homes and those with intellectual disability, who were generally left out of cross‑sectional sight loss surveys. This indicated that the number of visually impaired people in the UK would rise by 60% by 2031, but this, too, was based on incomplete data and data from other countries. It was vital that more good‑quality data should be collected.
The other source of information that epidemiologists were able to draw on was registers of people with sight loss, particularly Scandinavian registers. This allowed analysts to count up the number of people requesting certification or support, and get information about why this had happened. This data had been used to convince the UK government that it should be publishing information regarding sight loss from three preventable causes, namely age‑related macular degeneration, glaucoma, and diabetic retinopathy. These rates had now been included in the Public Health Framework; publication of this information should be expanded across Europe, and the EBU could do a lot to encourage this.
A graphical display regarding sight loss broken down by regions was available on the internet; the average was 50 cases of sight loss presenting per 100,000 people each year, but this figure was extremely variable, with the highest regional figure 75 per 100,000 and the lowest five per 100,000. In Manchester, since 2010, the reported rate of sight loss had increased from five per 100,000 to 50, but this did not indicate that sight loss itself had increased; rather, it indicated that better data was available. Similarly, in Camden, where Moorfields Eye Hospital was based, the rate of sight loss was steadily decreasing, but it was not clear why this was.
Richard Wormold concluded by stating that, in 1981, Larry Brilliant had conducted a national survey on sight loss in Nepal. Such a study had never taken place in Europe, although one was planned for the UK; doing this on a Europe‑wide basis would be a valuable initiative to pursue.
II. Artificial Vision beyond Retina Implants
Christina Fasser, President, Retina International, explained that Retina International was an umbrella organisation, bringing together 33 member organisations and 10 other interested groups. These represented more than 1.3 million individuals and family members in total, and invested more than $30 million annually in research, to find a way to treat untreatable, inheritable and common retinal degenerative diseases.
Artificial vision was the focus of a lot of press attention, but the technology was not yet as advanced as it had the potential to be. Artificial vision via retina chips had emerged as a potential technology about 20 years ago; this had been the first treatment for RP approved by the FDA and EDA. Research had begun in Germany, where ophthalmologists had said that artificial vision was an attainable goal, at a time when artificial hearing had been coming onto the market. Germany and the United States had invested heavily in this technology, and two potential approaches had evolved.
The first was an epiretinal chip: a camera receiving input, which was transferred into a signal by a computer chip. The second was the subretinal retina chip, which had about 1,500 pixels and sat where the photoreceptors had sat before they had degenerated. This produced vision that was similar to very low vision, enabling the recipient to see shadows, areas of high contrast, and reflective surfaces. At present, this was mainly a mobility aid; it did not restore vision in the manner that many people had hoped for, but Christina Fasser noted that the technology was still in an embryonic stage, and that even the limited vision that it allowed for was still far better than having no sight. Artificial hearing had been at the same stage of development 20 years ago. Allowing for face recognition was a realistic possibility, and scientists were working towards this at the moment.
There were currently two other options for artificial vision that did not involve retinal chips, the first of which was optogenetics. In cases of retinitis pigmentosa, the ganglion cells were still intact, and with melanopsin, these ganglion cells could be made light‑sensitive. However, these cells were much slower than photoreceptors and required a lot of light intensity. In combination with other products, such as Google Glass, this treatment could potentially work very well; it was particularly promising, in that vision would not need to be focused on a fixed point. This might help people with glaucoma, but it required an intact optic nerve.
The other potential treatment was via stem cells, which could replace degenerated cells, but these were difficult to deal with, as stem cells could become any kind of cell. ‘Teaching’ them to become only photoreceptors and integrating these into a retina was very challenging, and a lot of research remained to be done. The clinical trials that had taken place thus far had been promising in the sense that no harm had resulted from them, but very little improvement in the test subjects’ vision had resulted, although little improvement had been anticipated at this stage. Research continued, particularly in Japan.
There were indicators that severe visual impairment due to age‑related macular degeneration was decreasing in the United Kingdom, Denmark and Germany; this was because anti‑VEGF treatment was available in these countries. Retina International was concerned about the disparity across Europe in access to treatment for eye diseases, particularly blinding and severely impairing diseases, and about the potential for not just age‑related macular degeneration but also poverty‑related blindness. Christina Fasser encouraged the EBU to bear this in mind in their future work, and to help Retina International in theirs.
III. Sleep-Wake Disorder
Marlene Dressman, Vanda Pharmaceuticals, stated that she would speak on the subject of non‑24‑hour sleep‑wake disorder (non‑24), which was a Circadian rhythm disorder in which individuals’ internal body clocks were not aligned with the 24‑hour environment. The main symptoms of this were that people experienced difficulty in falling asleep, staying asleep and waking up when they intended to, and also struggled to avoid falling asleep in the middle of the day. This condition predominantly affected people with no light perception, or those who were blind; several studies suggested that most people with blindness suffered from non‑24.
Those who lived with non‑24 found that it affected their relationships with their families; one individual who was both blind and suffered from non‑24 had said that they had found their non‑24 was more of an obstacle to their normal functioning than their blindness was. Non-24 could occur at any age, from birth to old age, and occurred in both men and women. People tended to start experiencing non‑24 symptoms when they lost their light perception, and as many as 70% of totally blind adults suffered from non‑24, although sighted and partially sighted people could also suffer from this condition. Although it was possible that a blind person complaining of problems sleeping might suffer from insomnia or sleep apnoea, non‑24 should be foremost in a diagnostician’s mind when encountering such a patient.
Circadian rhythms were roughly 24-hour cycles of processes, related to the 24‑hour light‑dark cycle, which occurred in plants, animals and humans. Experiments that had taken place in France during the 1940s and 1960s had demonstrated that people deprived of light and time cues tended to delay their Circadian rhythms by approximately half an hour per day, to the point at which their biological rhythms became inverted. When these people had returned to an environment in which there was light, their cycles had returned to 24‑hour Circadian rhythms. These experiments had indicated that the internal body clocks of most humans were longer than 24 hours, and that light was necessary to regulate these.
The ‘master body clock’ was located in the suprachiasmatic nucleus (SCN), which sat on top of a bundle of nerves that came directly from the retina and was therefore able to receive signals from the eye about the light‑dark cycle. If these signals were unable to be received properly, this might lead to a Circadian rhythm disorder. As non‑24 was a cyclical condition, sufferers’ sleeping patterns would be aligned with the 24‑hour clock at certain times, and at other times would be completely out of alignment with it. This led to patients experiencing difficulties in making plans, as they were not able to predict how they would be feeling at any particular time. Non‑24 caused its sufferers distress, and impaired their social and occupational functioning.
Across the 28 EU countries, approximately 110,000 people suffered from non‑24. Vanda Pharmaceuticals, at present, was engaging in clinical studies with paediatric populations. There was currently no medicine available for children with non‑24; however, Vanda Pharmaceuticals would begin in 2016 to investigate a treatment that had received approval from the FDA and EDA, aiming to identify the appropriate dose and whether this medicine worked. Marlene Dressman invited those among the representatives who might be interested in enrolling their children in this pilot to contact her organisation, via [email protected] or www.non-24registry.com.
Opening
I. Second and Last Report of the Nominations Committee
Branislav Mamojka informed the Committee that two nominations had been received for Chair of the Nominations Committee: Sigrun Bessadotttir (Finland) and John Heilbrunn (Denmark).
Two nominations had been received for the position of ordinary member of the Nominations Committee: Rodolfo Cattani and Christian Hugentobler. These nominees were automatically elected.
Each delegation would need to appoint a leader to communicate with scrutineers. The ordinary members of the Board would be Mario Barbuto (Italy), Emin Demirci (Turkey), Bozidar Denda (Montenegro), Ann Jonsson (Sweden), Ana Sofia Antunes (Portugal), and Sinan Tafaj (Albania). As per the amendment passed the previous day, it was not necessary that the Board should have eight members.
Although two other individuals had been nominated for the position of ordinary member of the Nominations Committee, these nominations had been received too late in the day to be accepted.
Accessibility
In the chair: María Jesús Varela Mendéz, Chairwoman, EBU Commission on Access to Informatio