Oleh Kachmar (OK) Co-opted Member and Education Website Webmaster. Phillipe Toulet (PT) Member Local Scientific Committee in Paris

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1 Present MINUTES FROM THE EUROPEAN ACADEMY OF CHILDHOOD DISABILTY GENERAL MANAGEMENT COMMITTEE MID TERM MEETING IN PARIS ON 8 AND 9 TH DECEMBER 2017 HELD AT THE IBIS, LA VILLETTE, PARIS Giovanni Cioni (GC) Chair Arnab Seal (AS) Secretary Therese Millar (TM) Treasurer Jennifer Carroll (JC) Ex Treasurer Bernard Dan (BD) Co-opted Member, Chief Editor DMCN Elegast Monbaliu (EM) Member Elisabet Bousquet (EB) Member Lorna Wales (LW) Member and Newsletter Editor Jules Becher (JB) President Amsterdam Meeting 2017 Nana Tatishvili (NT) President Tbilisi, Georgia Meeting 2018 Sylvain Brochard (SB) President Paris Meeting, 2019 Alain Chatelain (AC) Co-opted Member and Parent Representative Apologies received Oleh Kachmar (OK) Co-opted Member and Education Website Webmaster Other people who attended the meeting at various times Phillipe Toulet (PT) Member Local Scientific Committee in Paris Previous Minutes The Minutes from the GMC Meeting held in Amsterdam on 27 th May 2017 were read and accepted without any modification. All matters arising appear in the minutes. Chairman s Report GC welcomed the GMC, in particular the new members EB and EM. GC outlined his vision for the second term comprising of 3 key areas: the first being to develop a global perspective as part of the ongoing work with the International Alliance (IAACD). the second area of focus would be to develop communication strategy to enable the voice of the EACD to be heard and emerge as a significant third sector. He cited the Austerity Survey conducted by the EACD as being an example. the third area of focus would be to concentrate on a training and development of clinical recommendations across Europe. This would be separate to and in addition to the liaison work with the International Alliance. Secretary s Report Page 1 of 11

2 AS reported that currently there were 751 members. The numbers were likely to remain stable until the time of the Tbilisi meeting. AS reported that there are 11 countries in Europe without a national coordinator. His initial discussions with the Slovak and Czech candidates had not progressed further. AS will follow this up. NT reported that she had links with Ala Gert a Paediatric Neurologist in Russia who potentially could help with developing a National Coordinator role. AS pointed out that the secretary post would come up for election in Tbilisi and that this needed to be advertised. There was discussion regarding this possibility of an existent GMC member applying for the post which would allow better continuity. The Scientific Committee Chair Post was also vacant and this would need to be appointed by the GMC as soon as possible. The Scientific Committee Chair would be the main link for the teams for the 2019 meeting onwards. BD would remain involved in advising the teams as needed. AS informed that to date the EACD had not been able appoint an administrator as had been agreed by the AGM. JC reported that one person close to the Treasurer Team was willing to undertake this role on an as and when basis. This would be accessed by the EACD Team for the next year to explore how it worked. AC wanted to explore whether the EACD would be adversely impacted by the Brexit process. He wanted to explore whether the EACD could have a base within the EU following the UK s exit in Action Points AS will liaise with the Slovak and Czech representatives NT will link with Ala Gert regarding the possibility of a Russian National Coordinator. EACD Executive Team will use the Administrator based in Cardiff. Access will be through TM. AC will explore whether the EACD main base can be moved to Europe. Treasurer s Report TM provided a detailed Income and Expenditure Report which is attached. The EACD had a surplus of 26, in September The current balance 205,874. The EACD is also hosting funds for IAACD of 32, There was discussion regarding the possibility of having insurance for the GMC Executives and those who were signatory to the bank accounts. Page 2 of 11

3 TM will explore the possibility of insurance underwriting the bank signatories and provide a recommendation at the next meeting. Paris Meeting 2019 The GMC had visited the La Cité des Sciences, La Villette prior to the start of the GMC Meeting. The site was considered suitable, with appropriate space and number of rooms available and with good disability access. SB and the local Scientific Committee presented the draft programme with the theme Innovation for Participation. BD is providing input the local Scientific Committee. The Scientific Programme will have four parallel sessions with various ideas for innovation. There are planned partnerships with ESPN, ESMAC, ESPRM, IEEE, SCPE, AACPDM, Australian ACPDM, IAACD. The local organisers were advised to reduce the number of keynote speaker and sponsored speakers from their current projection of 20 as the usual number of keynote speakers is between 6 and 8. Disabled young people and families/parents of disabled children would be actively involved in the programme. The Gala Dinner options were presented. Boat cruise with dinner would cost around 115 plus transport and SB mentioned that he had informally received support for this idea. However, there are cheaper options available as well. It will be up to the local organising committee to make the decision. The dates of the meeting agreed were Thursday 23 rd May Saturday midday 25 th May The preconference instruction of courses would be on Wednesday 22 nd May The GMC meeting would take place on Wednesday 22 nd May The meeting will be held jointly with the French Physiotherapy Society who will not have a separate meeting that year. This would allow much greater local participation. There would translation available in the main auditorium for the keynotes. The same venue could be used for the parallel sessions which may be of interest to the French Physiotherapy Association so that the translation facilities would be available for those sessions. The local Organising Committee has signed the EACD Contract for hosting the meeting. Proposed conference attendance fees and financial calculations presented. Venue cost, food cost and conference organisation, company costs would be significant. Advice was provided from the GMC regarding all the issues. Page 3 of 11

4 AS to send the minimum data set requirements for participation to SB. AC to explore sessions involving parents, families and young disabled people both from France but also from other parts of the EU. The GMC would consider additional bursaries to support their participation Meeting in Amsterdam JB presented the accounts from the Amsterdam Meeting. It was hugely successful and participant feedback was extremely positive The Conference made a profit so the EACD loan has been returned. In addition, half the profit will be transferred to the EACD account and this would be just over 14,000. Membership fees obtained on registration would also transferred to the EACD account and this is just over 23, Tbilisi, Georgia Conference NT informed the GMC that the 331 abstracts had been received in total including instructional courses, mini symposia, posters and oral presentations. These were being assessed under guidance from the Scientific Committee. Details of the Scientific Programme were presented. Further work would need to take place and BD will work closely with NT and the local organising committee to produce the final programme. The Welcome to the Conference will be at the Presidential Palace. Gala dinner options were also discussed. The local Organising Committee will decide on which option they would like to go for. The GPEC Training Programme would run in parallel on two days of the conference but avoiding the plenary sessions. The participants would be selected by the local team. The local team would decide the amount that would be paid by participants for the training programme and the IAACD will subsidise some of that registration fee. NT, BD and AS will discuss details of the training programme further. BD, GC and AS will discuss the Scientific Programme in more detail the NT to finalise it. OK will need to provide the DNN code for the conference app. NT, BD and AS will discuss the training programme arrangements in detail. Page 4 of 11

5 Future Meetings AS reported that there had been 3 initial expressions of interest for the 2020 meeting. There was a bid from Spain to hold the meeting in Barcelona with the theme Networking Knowledge Into. The proposed dates are between Wednesday 26 th - Saturday 29 th May 2020 or between 2 nd -5 th June The proposed venue would be National Institute of Physical Education of Catalonia (INEFC). Financial projections were provided along with the potential organising company details and the local organising committee details. A bid has been received from Italy to hold the meeting at Brescia at the Aula Magna. The bid has been presented by Elisa Maria Fazzi. They could only host the conference after 10 th June 2020 due to the availability restrictions of the conference venue. A proposal bid was received from Belgium to host the conference at Bruges. EM reported that the PCO convention office in Bruges had encouraged the local team to prepare a bid for 2021 to host the meeting towards the end of May All 3 proposal bids were deemed suitable and also three teams would be encouraged to put in a bid at the AGM in Tbilisi. There was discussion regarding member voting to support the bids. It was agreed that the proposal bids along with an optional video supporting the bid would be circulated to all members with the request to electronically vote between the 3. It is envisaged that EACD Administrator can be used for the task. In addition, there would be a vote at the AGM avoiding duplication of members who have already voted. The two-vote numbers would be counted up to declare the winner. AS will communication with the three teams and encourage them to submit their proposal bids to the AGM AS to request the teams to provide their presentation along with a short video which then can be put up on the EACD site and circulated it to members with a hyperlink requesting them to vote. AS will advise the three teams to avoid the first week of June as this will clash with the EPNS meeting. Conference App JB presented the argument for the EACD acquiring the Apple Conference app for the EACD. It has been used by the Amsterdam Conference Team and is being currently used by the Georgian team. The cost for producing the app by the company which has helped with the Amsterdam and the Georgian Apps is 3,000. In addition, each Page 5 of 11

6 year the local organising committee would have to spend 9,500 to modify the app to make it suitable for their purpose. The EACD considered the information but felt that this was an expensive option and that there wasn t enough information to support the EACD acquiring the app at present. Family Task Force AC presented ideas for the participation for families and young people in the EACD meetings and at the conference. AC suggested that EACD involve local parents in the presentation of the suggested programme at the GMC Mid-Point Meeting held in the host city 18 months prior to the conference. AC proposed that there should be Parent and Young Person Co-Production as a specific topic in all the EACD Meetings. AC suggested that the EACD should be actively involved in providing good quality information and guidelines for parents, carers and young disabled people. He envisaged the EACD having a collating role and adapting the information to the local context. AC suggested that the recent survey conducted by the EACD on the barriers and facilitators for inclusion should look at the gaps identified and further work should be done to understand the areas where the gaps are the biggest. Significant discussion took place regarding how the EACD could optimise partnership with parents and young people with disabilities. NT and BD will look at the possibility of incorporating sessions on Parent and Young Person Co-Production for the Tbilisi meeting. However, the time frame is short for Tbilisi, but this should be possible at the Paris meeting in AC and SB to look at coordinating this session. EACD would be happy to provide parent bursaries to assist with participation. The information from the Austerity survey would be available after publication and then further work on this would be possible. This would need to be discussed further at the time when the information became available. AS pointed out that the IAACD GPEC Group was involved in developing a knowledge hub which would be providing a range of information including those targeted towards parents, carers and young people. Any EACD effort to do this separately would be a duplication. However, local adaptation in different languages should be encouraged and would be possible. The information produced would also be hosted on the EACD Education site. Page 6 of 11

7 IAACD Update GC provided an update regarding the progress with the IAACD. The constitution was signed in Montreal in September 2017 and it has been registered in the State of Wisconsin, USA. A bank account is in the process of being set up. Three Subcommittees are active including the Membership Subcommittee, Global Professional Education Committee and the Best Practice Committee. The Best Practice Committee is currently being reconstituted and it is envisaged that they will be involved in evaluating available evidence and also looking at areas where best practice recommendations need to be developed. AS requested the GMC to consider nomination of Oleh Kachmar as the third member of the GPEC as OK would have the requisite IT skills to lead on a GPEC sub group involved providing advice for web connectivity. The GMC passed this unanimously. AS provided an update on the GPEC activities. The IAACD website and the Knowledge Hub is currently being developed in partnership with CanChild and IAACD has agreed to provide funding for this. A pilot training programme is planned for Georgia. The initial programme will run parallel to the EACD conference in May The GPEC Committee has formed subcommittees including the Review and Adjudication Subcommittee headed by Jenny Carroll, Curating Subcommittee headed by Peter Rosenbaum, the Web Connectivity Subcommittee headed on Oleh Kachmar and the Programme Development and Evaluation Subcommittee headed by Bernadette Killick. AS to write to OK inviting him to take up his position on the GPEC and the Subcommittee. Austerity Survey Update Karen Horridge has submitted a paper to DMCN. A major revision has been suggested. Resubmission is planned in the near future. The survey has been accepted for a plenary session at the RCPCH Annual Meeting in the UK. The survey has been submitted for a poster presentation at the BPNA. Once the survey is published regional and national data will be made available to the different countries for further publications. There is EACD support to try and have a supplementary issue in the DMCN if the paper is accepted for publication. The EACD will support media coverage at the launch of the survey once it is published. Page 7 of 11

8 MacKeith Press BD informed the group that all DMCN abstracts are now being translated into Spanish and Portuguese and is available on the Wiley website. There is a possibility of it also being available in Mexican in the near future. BD presented an example of a newsletter from ACPDM where member publications are highlighted. This could be adopted by the EACD once the administrator role is fully functional. BD pointed out that the editorials and commentaries from the DMCN are free from the publication date and all articles are free after 12 months. The EACD website does not mention the reduced rate available for members for DMCN subscription. AS will liaise with the Webmaster regarding this. AS to liaise with Webmaster to include the DMCN subscription information. Scientific Committee BD informed that the Scientific Committee is helping with the review of abstracts. BD suggested that there is a separate forum in the Annual Meetings entitled Exploratory Submission: Formative Review. This would be for unsuccessful submissions where a team of experts would be able to provide guidance regarding how the submissions can be improved. EB proposed incubator session for research. EB has been encouraged to bring forward a proposal to the next conference. The GMC has considered the possible care of the Scientific Committee and currently has proposed Christopher Newman from Switzerland to consider this role. Further Scientific Committee Members would be chosen. Marjolijn Ketelaar would be considered a suitable Scientific Committee Member. Action EB to bring forward a proposal regarding an incubator session to the next GMC meeting. BD to incorporate the Exploratory submission: formative review sessions from Tbilisi. EU Relations BD reported that there weren t significant contacts with the EU since the last GMC Meeting. Page 8 of 11

9 BD reported that he is in the process of developing links with EU subgroups and the STOA. It is anticipated that the EACD will be the expert contact for the EU and will be invited as needed. SB and AC will try and acquire patronage of the EU for the Paris Meeting Liaison with EPNS GC reported that he had received contact from Lieven Lagae from EPNS to strengthen the collaboration between the EACD and EPNS. There would need to be better links and the possibility of organising joint courses between the organisations. GC also reported that the EPNS journal EJPN have offered that one of the Board Members of the EACD to be an Associate Editor of EJPN and for one paper per issue to be peer reviewed by the EACD Board Member. The GMC considered the proposal. BD provided his personal opinion as a GMC member. He thought this would be beneficial for the EACD and then left the meeting as there would be a potential conflict of interest in his role as Chief Editor for the DMCN. The GMC considered the proposal and recognised the possibility of promoting Neurodevelopmental Paediatrics to the audience of the European Journal of Paediatric Neurology which is primarily Paediatric Neurologists. The GMC were in agreement of GC exploring the liaison further and also to enquire regarding what the expectations of EPNS were from the EACD. The GMC also advised GC to contact Ann-Marie Halligan from MacKeith Press to inform her of the GMC decision to explore this further as MacKeith Press were our existing partners and sister organisation and to assure them that there would be no conflict of interest on the part of the EACD. If the initial explorations were successful, then the proposal would need to be brought to the AGM for ratification. GC to have further dialogue with EPNS regarding possible collaboration and what the implications would be. GC will inform and discuss with Ann-Marie Halligan from MacKeith Press the current proposal and their EACD GMC s decision to explore this further. The EACD will reassure MacKeith Press that DMCN will remain the journal for the EACD and MacKeith press will remain our primary partner. GC will do this prior to further discussions with EPNS. GC will bring forward any proposal developed to the AGM. Newsletter LW reported that there was confusion regarding what was a newsletter and what was a news item as every circulation was labelled a newsletter. It would be helpful to have separate news items for individual new item circulations. AS will explore whether the existent website has the functionality to do this and if not will request our Webmaster to make the necessary changes. Page 9 of 11

10 The EACD is now using Twitter. It was agreed to add the Twitter handle on the front page of the EACD website. It was agreed that there would need to be Twitter feeds for the sessions in Tbilisi. All the activities of EACD were to be Tweeted and to gain attraction it would need professional expertise. AS will explore whether news items can be individually new items can be individually circulated instead of as a newsletter. OK to add a Twitter handle on the front page of EACD. NT and LW will to liaise to arrange Twitter feeds for the sessions in Tbilisi. LW will bring forward a proposal to the next GMC for employing professional staff to increase the publicity for the EACD. Communication Strategy GC was keen for the EACD to have a much wider communication strategy and be recognised as a voice for children and young people with disabilities and their families. LW and EB agreed to form a sub-committee within the EACD GMC to look at development of a communication strategy. They would bring forward a proposal to the next GMC. The EACD Statement on non-substantiated treatments poor evidence base JC, JB and Guro Andersen were tasked with producing a draft statement but they had not been able to make progress with this. Action JB and JC will bring forward a proposal to the next GMC meeting in Tbilisi and for future care consideration by the AGM. Support for Invited Lecturers Currently the EACD have lectures sponsored by the LFM and MacKeith Press. GC has explored further funding by the Mariani Foundation who will consider the proposal. Page 10 of 11

11 JC has discussed the proposal with Chris Jones from Cerebra who did not express an interest in supporting any lecture however they were interested in the work being done by the Global Professional Education Committee and JC will explore the possibility of a Skype meeting between JC, AS and Chris Jones. GC had written to the Helene Elsass Foundation but had not received a reply. Further discussion revealed that the Helene Elsass Foundation will only support projects within Denmark therefore would not be appropriate for the EACD. Other matters GC proposed that the EACD should have a separate Education Programme different to that being developed by the IAACD. These could include the following:- Courses running alongside meetings. Summer/winter two-day courses targeting specific topics. Placements and fellowships for 3-6 months. Supporting National Meetings. Promoting webinars. Action Education subgroup including GC, EM, TM and JB will bring forward will bring forward a proposal to the next GMC meeting. Date and time of next meeting Monday 28 th May 2018 at the Hualing Hotel, Tbilisi, starting at 8am. Potential dates for the next mix-term meeting in Poznan were discussed and the possibility of 30 th November and 1 st December 2018 were agreed. It was further discussed as to whether the mid-term meeting could be over a 24 hour period rather than two half days. After due consideration it was agreed to retain the two half-day format to allow people the option of spending one night only for the purpose of the meeting. Action AS will liaise with Magda Chroscinska regarding the possible dates for the next midterm meeting. The meeting was closed at 1pm on 9 th December 2018 with thanks provided to our participants. Dr Arnab K Seal AKS/JE 31 January 2018 Page 11 of 11

13 th Global Conference

13 th Global Conference - 2016 Submission Guidelines for Prospective Hosts INTERNATIONAL FEDERATION ON AGEING (IFA) 351 CHRISTIE STREET, TORONTO, ONTARIO, M6G 3C3 CANADA TELEPHONE: +1 416 342-1655 - FAX: