EACD Impact of Austerity Survey

EACD Impact of Austerity Survey

Minutes of Steering Committee meeting 29.09.2016

In attendance: Giovanni Cioni (Chair, EACD), Karen Horridge (NC for UK and Chair of BACD), Enrico Castelli (NC for Italy), Alain Chatelin (EACD GMC Parent Representative), Lourdes Macias (NC for Spain), Arnab Seal (Secretary EACD)

Apologies: Oleh Kachmar (NC Ukraine and Webmaster for EACD Education Website)

Minutes based on agenda items discussed

1. Confirm membership and commitment to the project. Clarify time commitment, roles and responsibilities: The members confirmed the importance of the work and their commitment to the project. It was recognised that the role of the SC would be to provide strategic direction for the work, advise on selection of the individual/group to execute the work, advise on methodology/analysis and provide direction on dissemination of the results for maximum benefit for disabled children & families.

2. Nominate a lead for the Steering Group: AS nominated KH to Chair the group based on the excellent work she had done on the topic for the BACD. KH agreed to accept the position provided all other members of the SC accepted (OK, LM and AC were not present at this time) (Action AS to confirm acceptance of nomination by other SC embers)

3. Agree the strategy for the work: The discussion at the last GMC meeting (which Giovanni has sent below) outlines the strategy which was discussed. The SC agreed that the primary purpose of the work was to highlight the impact on children, families and services across different states in Europe and use the work for political lobbying and for scientific publications. The work would need a strong scientific basis and would also need to be presented in various formats for wide media publicity. The work would need to involve surveying professionals, professional groups, parents, disabled children and parent groups. The EACD NCs will need to be involved and utilised for the work. Existent data collected from NCs by AS can provide additional information. THE SC recognised that each country has its own system and in some cases there are multiple systems within a single country. Understanding the basics of each system would be necessary for data interpretation. The SC also recognised the importance of having patient stories and qualitative data to highlight the true impact on the lives of children across Europe.

Action: KH will produce a briefing paper for the SC and for the individual/group who would be employed to execute the project.

Action: KH will produce a draft questionnaire for the purpose of the study. She will incorporate parts of the questionnaire from the proposal (circulated by GC) as relevant.

4. Agree timeframe for completion: The SC agreed that the work would need to be completed within 6 months i.e. mid-March 2017) and would be ready to present at the EACD Annual Conference in May 2017 at Amsterdam. GC will liaise with local organisers re having a dedicated session to present and discuss the works. (Action GC)

5. Discuss whether we invite other individuals/groups to execute the project (the current outline Giovanni has attached is from a sociologist from Italy). It was agreed that the group would explore the possibility of other groups/individuals who may be interested in the project and be able to deliver within the proposed timeline (Action KH and AS)

6. Finances: EACD GMC has agreed to fund the project (within reason) as EACD recognised the importance of the work.

7. Next meeting: KH will inform SC re time of next meeting. Likely to be between 2 to 4 weeks.