Report workshop Ireland07.V.2009

With the support of the European Commission’s programme Progress IF organised workshop with the aim to empower its European members.

Participants to the workshop were:

Names / organisation / Country
1 / Mr. Rafael Reoyo / ACAEBH / Spain
2 / Mr. Jon Burke / ASBAH Liaison / UK
3 / Ms. Eli Skattebu / Norwegian association for SBH / Norway
4 / Mrs. Anli Emine Nurdan / Turkish Association / Turkey
5 / Mr. Anli Bülent / Turkish Association / Turkey
6 / Ms. Adriana Tontsch / ARSBH / Romania
7 / Mrs. Terézia Drdulová / Slovenská spoločnost’ pre SpBH / Slovakia
8 / Mr. Van den Berge Hugo / VSH Belgium / Belgium
9 / Mr. Teije Dijk / BOSK / The Nederlands
10 / Mrs. Eva Toft / RBU / Sweden
11 / Mrs. Irena Majeticova / Czech SBH / Czech Republic
12 / Mrs. Zdenka Spacilova / Czech SBH / Czech Republic
13 / Ms. Ksenia Grozdova / Estonian MMC and HC Society / Estonia
14 / Ms. Ivana Trbojevic / Serbian SBH / Serbia
15 / Mr. Pierre Mertens / IF President / Belgium
16 / Mr. Lieven Bauwens / IF Coordinator / Belgium
17 / Mrs. Renée Jopp / IF Communications / The Nederlands
18 / Mr. Filipe Pereira / ASBIHP / Portugal
19 / Mr. George Kennedy / SBHI / Ireland
20 / Mrs. Thelma Cloake / SBHI / Ireland
21 / Mr. Fiach McDouagh / SBHI / Ireland
22 / Mr. Peter Landy / SBHI / Ireland
23 / Ms. Ann (Wala Brennan?) / SBHI / Ireland

23 participants / 14 countries / 11 women – 12 men / 6 people SB/H

The expectations of the participants where:

-Inspiration on how to move forward with the national organisation; new ways to run the organisation (2) (c)

-Building an international / EU voice; looking for international cooperation (3)

-To share activities and experiences (a)

-How to include people with Spina Bifida and Hydrocephalus in the organisation (1)

-To receive feedback on the own organisation

-To meet colleagues

-Learn to know the others (b)

-How to make the move to a professional organisation

-Creating a common discourse

The numbers (1)(2)(3) is the order of priority before the workshop, the letters (a)(b)(c) is the content-related evaluation afterwards (not related to the evaluation at the end of the workshop)

The workshop was facilitated by Pierre Mertens and Lieven Bauwens.

Agenda

Session 1: Introduction
Session objectives:
-Understanding each other and each other’s working environment.
-Presentation of the own organization, the main activities and challenges
-Sharing ideas and vision on the workshop.
Session 2: working with volunteers
Session objectives:
-Sharing methods to improve working with volunteers.
Session 3: strategy development and priorities
Session objectives:
-Explaining different strategy theorems and apply them
-Go beyond the blabla to some practical and usable good practices
Session 4: my reality
Session objectives:
-Apply shared information to the own organization
-Use available consultants and colleagues on issues that bother your organization.
Session 5: hot issue: prevention by fortifying staple foods with folic acid
Session objectives:
-What is it about and why is it important for us? Presentation of the Advocacy Package
-Ireland's Food Safety Authority's opinion
-IF's response
For the Food Safety Authority: Professor John Scott
Evaluation of the workshop

Report of the sessions

The participants were asked to present their association with their mission, goals and activities.

The method of SWOT analyses[1] was explained and during the presentations of the member associations, their respectiveSWOT analyses were filed in on a flipchart (see different charts – to be completed – see annex 1).

Key concerns mentioned in the expectations where discussed according the activities presented by the members.

These where:

-Working with volunteers

  • Some organisations depend too much on a too small number of volunteers who are over demanded and overloaded with tasks. Some organisations have encountered changing roles for volunteers after professionalization of the organisation.
  • On the selection of volunteers:
  • Look with specific tasks and functions needed in the organisation
  • Look for persons according this function
  • Do not overload new volunteers with all work that has to be done in the organisation
  • Do not hesitate to select your volunteers according their talent and field of interest.
  • Do not look for tasks for volunteers but look for the right volunteer for a specific task.
  • On the remuneration of volunteers:
  • Volunteers have to have be paid, not with a salary but with other rewarding like
  • Appreciation
  • Meaningful work
  • Task according their field interest and expertise
  • Training where needed to fulfil their function
  • Pleasant working atmosphere with good colleagues and working conditions
  • A fair compensation for the cost related to their function and tasks.
  • Possibilities to grow in the organisation and eventually to reach promotion

-Adult participation within the organisations

  • The starting point was the perception of adults with the condition that they were not appreciated in their capacity of leaders in organisation that are created as parent organisations.
  • First perception was that this differs from association to association. Several associations are presided by persons with Spina Bifida and Hydrocephalus
  • Adults with the condition have specific needs to function in a board. They need more time, longer breaks, accessible environment and some coaching or assistance. If this is not provided they will not be able to function in their full capacity.
  • The Norwegian association has given the example in their organisation
  • Involving people with Spina Bifida and Hydrocephalus in the governing bodies of the organisation is ‘political choice
  • Active participation of persons with the condition needs to be made possible, i.e. it needs investment
  • The adults are teamed up with a second, more experienced person in order to facilitate participation
  • Statutes could oblige a minimum of adults with the condition in their board to ensure their voice if listened at. The adults in the international world have presented a resolution at the GM of IF in Minneapolis, USA in 2005, which IF is following
  • Transport to meetings should be facilitated and refunded
  • If the person with the condition need a coach or assistant could be a help to full fill his tasks.
  • The cooperation between parents and adults with the condition can be positive and enrich both

-On financial stability

  • the organisations are mostly mission driven organisation and have difficulties to make priorities in their goals and tasks. The financial stability needed for the further development of the organisation is often at the end of the agenda. Making the organisation financial and structural stable should be the first goal, because it will create the condition to achieve the mission and it will prevent burnout of volunteers and staff.
  • Sufficient human and financial resources should be invested in the development of the own organisation.
  • Volunteers and (if possible) paid staff should actively look for new funds and budget lines
  • Funding can be achieved through private sponsoring, service clubs, governmental and European funds, membership fees, direct mailing, selling goods etc.. a good plan to achieve this funding is needed. Capacity to apply for funds, implement programmes and deliver the necessary donor reports should be available.

-Attract new and young parents

  • Due primary prevention but also due prenatal selection less children with Spina Bifida and Hydrocephalus are born, so less new parents are coming in
  • the traditional activities of some organisations are not attractive for young parents
  • new parents ‘consume’ the organisations and do not feel they are needed to make the organisation going on
  • Some suggested possible solutions are:
  • Separate activities for young parents like thee and coffee mornings
  • Actively approach the target group that is not member, maybe ask them why they have not become a member (sending a questionnaire, making telephone calls)
  • Questioning members that are not renewing their membership
  • Differentiation of the activities
  • address young parents for specific tasks according their capacities

-Creating a European discourse

  • Some association would like to have more guidelines in how a SB&H association should function. An European policy would be welcomed by them to solve internal discussions within their organisation
  • IF produced guidelines for starting a SB&H association. These guidelines should be actualised. It was felt that this should be guidelines but not mandatory rules as long the member countries are underwriting the IF statutory rules.
  • Guidelines on adult participation in IF and it’s members are agreed on by the IF General meeting.

-Working with paid staff

  • More and more associations are working with paid staff to support the mission and to achieve the goals. Some organisations are providing direct services to their membersand are funded for this by their government. These services are often executed by professional paid staff. Other organisations refuse to do service delivery and focus more on activities and advocacy. They use their staff for applications, fundraising and administration and development of their own organisation. Some organisations feel that staff start live their own life and that they are taking over leadership of the organisation.
  • Leadership and the direction of the organisation should stay by the people with the condition and their families
  • clear goals and correct reporting can assure that leadership stays at the right level
  • training to work with staff can be of help
  • members who have in their profession life leadership over staff can be of help to empower the board in working with staff

Evaluation

Evaluation forms participants

“Workshop on capacity-building for IF members, Ballinasloe, Ireland - 7 May 2009
Respondents: / 13
Qsn/Scale & # answers: / 1 / 2 / 3 / 4 / 5 / Weighed average
1. Did the event match your needs? / 3 / 6 / 4 / 0 / 0 / 9 / 24 / 20 / 4,08
2. Did you gain relevant knowledge … / 4 / 8 / 0 / 0 / 0 / 16 / 40 / 4,67
3. Will you be able to apply such knowledge … / 4 / 9 / 0 / 0 / 12 / 36 / 0 / 3,69
4. What is your overall assessment … / 1 / 1 / 4 / 7 / 0 / 2 / 3 / 16 / 35 / 4,31

Debriefing

-There is clearly an expressed need for training and exchange in order to develop the national and regional organisations. However, topics tend to have a broad range, and time is needed for diagnosis and development of ideas.

-The group was large and diverse, which has advantages but also disadvantages. The size and composition of the group needs to be specified in the workshop’s objectives.

-We need to investigate smaller groups and a regional approach.

Report Pierre Mertens and Lieven Bauwens

10 May 2009

[1] In short: Strengths (internal positive) are used, Weaknesses (internal negative) are improved to seize Opportunities (external positive) and avoid Threats (external negative).