OPEN CALL FOR PROPOSALS VP/2007/013
establishment of 3-year partnerships with Eu-level networks active in the field of the integration of disabled people
Proposal of the International Federation for Spina Bifida and Hydrocephalus
1.Introduction
Spina Bifida is one of a group of birth defects known as Neural Tube Defects (NTDs), which occurs within the first 25 days of pregnancy and affects 1 to 2 in every 1000 live births. In addition to an obvious gap in the skin covering the spine, the vertebrae and the nervous system are damaged, leading to some degree of paralysis. Most children and adults have problems with bowel and bladder control. Spina Bifida occurs as the result of lack of absorption of folic acid before and during the first weeks of the pregnancy: food quality can influence this, though other preventative measures may also be necessary. Spina Bifida cannot be cured, though medical interventions mean that many people with Spina Bifida now live into old age and have a good quality of life. However, long-term care is often necessary.
More than 85% of children with Spina Bifida also suffer from Hydrocephalus (‘water on the brain’) or develop this at a later stage. Cerebro-spinal fluid (CSF) is produced continuously inside each of the four spaces or ventricles inside the brain. CSF normally flows from one ventricle to the next, then out across the outside of the brain and down the spinal cord, where it is absorbed into the bloodstream and re-circulates. When the drainage pathways are blocked at any point, the fluid accumulates in the ventricles inside the brain, causing them to swell, resulting in compression of surrounding tissue. Drainage of the fluid with a device called a ‘shunt’ or a natural bypass (Endoscopic Third Ventricolostomy) is needed.
There are many other causes of Hydrocephalus besides obstruction of the normal CSF pathways caused by abnormal brain anatomy as is the case with Spina Bifida. Among others, it can also be the result of meningitis, tumours, cysts, trauma or intracranial bleeding which can occur during pregnancy or deliveryor more frequently following premature birth. Hydrocephalus can be treated surgically, but also requires long-term neurological follow-up and training.
Starting about 40 years ago, Spina Bifida and Hydrocephalus organisations and self-help groups were founded by people experiencing a real need. The organisations have a crucial role in collecting, generating and spreading knowledge and expertise on the condition and on the rights of the target group, as most of the people with Spina Bifida and Hydrocephalus need specialized care for life. Today, organizations of people with Spina Bifida and Hydrocephalus (and their caregivers) or self help groups are being founded in less developed parts of the world. Nowadays, applications for IF membership come primarily from Eastern-Europe and Latin-America.
The more chances people with Spina Bifida and Hydrocephalus get, the more self-confidence they develop, so that they are able to conquer most of their problems and to lead a meaningful life. On the social level, people with these impairments are getting ever better opportunities and concerted efforts are made to remove all barriers which impede a full participation in social life. Undoubtedly this is the result of a good co-operation between parents, physicians and self-help groups.
The International Federation for Spina Bifida and Hydrocephalus (IF) is a Brussels-based international network of national or regional organisations of persons with Spina Bifida and Hydrocephalus. The heart of the organisation is European with the majority of the members in Western Europe.
IF’s knowledge comes from its unique global network with contacts in more than 50 countries, and 33 member organisations in 29 different countries. 24 of IF’s members are from the European continent (including Russia and Turkey (73%)). 20 of IF’s members are from 17 EU-27 countries (60%). Only 3 of the members are national organisations of Central and Eastern-European countries (Estonia, Poland and Slovakia).[1]Members of IF could only become a member when their own mission is in line with the IF mission.
IF has also developed a close working relationship with dedicated professionals worldwide, considered the world experts in their area of expertise.
The IF Knowledge Network is the platform for discussions on ethics, prevention, food fortification, new developments in treatment and care, and ensures that people with Spina Bifida and/or Hydrocephalushave a voice at global level.
IF is the only international organisation OF people with a disability with a solidarity programme in the South.
2.Vision
The International Federation for Spina Bifida and Hydrocephalus (IF) states: “Knowledge is the key to a better life.” This has become a guiding principle over the years. Information is essential to make the right decisions and to deal adequately with a disease or an impairment. If somebody understands what is happening to him, he/she will get a better hold on his/her situation. Information is power, conduces to independency and emancipation, even if the information turns out to be negative.
Over the years, IFhas becomea Knowledge Network, and has the ambition to further expand it. Generating and disseminating knowledge on Spina Bifida and Hydrocephalus, making the position of the people with the impairments stronger. This will not be done by creating a strong center in Brussels, but by enhancing the linkages within the European network or Spina Bifida and Hydrocephalus organisations and devoted individuals, either people with the impairments or professionals.
IF is a Human Rights advocate on access of equal (life saving) treatment at birth and during the whole lifespan of persons with disabilities. Despite improving life expectancy and quality of life, more and more foetuses with Spina Bifida and Hydrocephalus are being aborted or their life is being terminated after birth, just because the child has a disability. This is a grave violation of Human Rights, which needs to be fought. Because IF values the dignity of life of a person with a disability, a lot of effort is put in the prevention of the impairments.
IF reckons that the role as network of organisations and devoted individuals and Human Rights advocate of a discriminated minority, even denied life, falls within the span of the Progress programme.
3.Mission
to improve the quality of life of people Spina Bifida and/or Hydrocephalus throughout the world and to decrease the prevalence of Spina Bifida and Hydrocephalus by primary prevention
Although the mission statement relates to people with Spina Bifida and Hydrocephalus, the focus involves a broader range of stakeholders. On primary prevention, it involves all women at childbearing age, as they need to be aware of the possibilities of reducing the risk of having a baby with Spina Bifida and Hydrocephalus (or, among others, a baby with anencephaly, a baby with cleft lip or hearth malformations).
Total holistic care, to improve the quality of life, starting at the birth of persons with Spina Bifida and Hydrocephalus has a positive effect on the care of all persons with chronic illnesses and disabilities. Organisations of Spina Bifida and Hydrocephalus have been the frontrunners for this multidisciplinary approach to care.
IF's goals are
To encourage the establishment of new groups and national organisations of people with Spina Bifida and Hydrocephalus; and the support of those groups and organisations
To encourage cooperation between organisations (both within IF and externally)
To influence the quality of service delivery to people with Spina Bifida and Hydrocephalusworld-wide
To facilitate and promote the exchange of knowledge, information and examples of good practice at an international level; work with international bodies (UN, WHO, UNICEF, Council of Europe, EU, EDF, IDC, international NGOs etc.)
To stimulate research on causes and treatment
To encourage primary prevention campaigns and influence (international) policies on primary prevention campaigns ensuring the dignity of the target group is not endangered.
To support people with Spina Bifida and Hydrocephalus in developing countries through projects of early detection, treatment and rehabilitation
To encourage international discussion on human rights, preventing discrimination againstpeople with Spina Bifida and Hydrocephalus (implementing UN Standard Rules, using the new UN convention on the rights of people with a disability as key advocacy document)
Improving the quality of life and primary prevention are the motivation for everything IF undertakes. This is the same for the IF member associations in the European countries The most important way to fulfil that mission is to spread knowledge and to encourage contact between parents and persons with Spina Bifida and/or Hydrocephalus.
The importance of contact is recognition, not feeling alone or isolated, learning from each other. Parents as well as persons with Spina Bifida and/or Hydrocephalus often mention how important these contacts are.
Knowledge is the first essential step towards minimising the effects of impairment. It ensures that people with Spina Bifida and/or Hydrocephalus are full partners in decision making and that carers, professionals and persons with Spina Bifida and/or Hydrocephalus all have access to the latest information.
IF serves the follow people:
The primary target group are persons with Spina Bifida and Hydrocephalus (the person at the end of the chain) and their relatives. However, IF targets them indirectly, via member organisations and linkages with other ENGOs.
IF, as umbrella organisation, has as target group its member organisations. Most members started there own organisation in their own country to respond to similar needs and the same mission. These national organisations took the initiative for cooperation at the European and international level and took action on educational and human rights matters. Gaining and spreading knowledge and information on the conditions and possible treatments are the most direct needs of the target group and here exchange of examples of best practise are shared. Most organisation cooperate already 30 years and advocate for the rights of their target group.
4.Values
IF, as an organisation OF people with disabilities, stands for equal rights and equal opportunities. It advocates for correct information and treatment. IF defends the right to be included in society, in education and employment. IF is a pluralistic organisationand takes all actions from a human right perspective.
More specifically, it has created momentum for four specific policy statements. These statements are the result of the debate IF started and stimulated within the network at the national and international level. All these statements are voted unanimously at the IF general meetings and form the legitimacy bases for all further actions.
Toulouse resolution
At the 12th International Conference for Spina Bifida and Hydrocephalus in Toulouse with the theme “The Right to be Different”, 270 people from 22 different countries - parents and adults with these impairments - came together to consider all elements involved in this theme. They stated very strongly what has become a guiding principle for this organisation:
People with Spina Bifida and Hydrocephalus live a full life with equal value to that of any other citizen;
Adults with Spina Bifidaand Hydrocephalus stated very clearly that their quality of life is not a reason for the termination of a pregnancy;
Parents and adults state that the impairment is not the burden. The burden is the constant struggle against inaccessible environments and inadequate systems, which should be their allies and should be supportive of them.
Policy Statement on the Right to Life(termination of pregnancy)[2]
The General Meeting of IF, consisting of IF members, agreed on this policy statement during the meeting of 28 June 2005 inMinneapolis, USA:
The existence of Spina Bifida and Hydrocephalus in a foetus is not a sufficient reason for termination. Parents must feel free to make a choice, after receiving counselling from trained professionals on the full range of issues relating to Spina Bifida and Hydrocephalus.
This policy statement was based upon the Toulouse resolution.
Policy Statement on the Right to Life(termination of life)
The General Meeting of IF agreed on a new statement on the active termination of life when the child has a disability. This was the result of the practice of terminating the life of 22 viable newborn babies in Groningen, not being prosecuted because they followed an agreed procedure. Research[3] has shown that the doctors promoting this termination of life did not use correct arguments (such as expected quality of life / unbearable pain).
All newborn children with Spina Bifida and Hydrocephalus have the right to live and to all treatments which can improve their quality of life or prevent further impairment. Active termination of life of newborn children with Spina Bifida and Hydrocephalus should not be permitted on the basis of their expected quality of life;
Spina Bifida and Hydrocephalus should never be an argument not to provide available life-saving and life-improving treatment;
Policy Statement on Prevention
IF is strongly opposed to any kind of discrimination. When a child is denied access to life because of its disability, that is a serious violation of Human Rights, the worst discrimination possible. Therefore, IF is a strong supporter of primary prevention. The same child is born then, without a disability.
IF’s general meeting decided in June 2005 that the best way forward is primary prevention by mandatory food fortification. Fortifying food with (at least) folic acid, and that in a mandatory way, is the best guarantee to decrease the prevalence of a whole population. Another strong argument in favour is that many pregnancies are unplanned, so that the overall folate level needs to be increased.
5.Goals and objectives
During the course of the next three years and the scope of this call for proposals, the International Federation for Spina Bifida and Hydrocephalus wants to focus on two main elements: IF as Knowledge Network and IF as Human Rights advocate.
Strategic goals of the International Federation for Spina Bifida and Hydrocephalus / Objectives / Actions / Means / Targets- The International Federation for Spina Bifida and Hydrocephalus is a Knowledge Network
IF secretariat
IF Board / Annual conference attended by 150 – 200 people, representing the target group and the representative organisations, engaging top-level speakers
IF initiates a working group European Development for its members: identification of target countries + proposal implementation actions / Membership officer
Members from key EU-countries (Portugal, United Kingdom, Netherlands, Norway, Germany, France)
IF Board / Clear and supported expansion strategy
IF organises thematic workshops / IF secretariat
IF Board
IF experts / Annual workshop on specific themes (capacity building, working with volunteers, organisational development, awareness raising at all governmental levels), targeting key people at all EU members
Organisational development of IF’s members / IF attracts new members / IF membership officer
IF secretariat
IF Board / At least one new member from an EU-27 country / EFTA / candidate countries / Western Balkans, every year (= official organisation, mission and vision in line with IF, applying and paying a membership fee)
IF enhances the capacity of existing and new members / IF secretariat
IF Board / One workshop per year on organisational development (with invited partners), targeted at new and young members
Training empowers people with Spina Bifida and Hydrocephalus and their caregivers / IF develops a counselling training package / Membership officer / The development of a comprehensive and dynamic counselling training package / toolbox
IF develops an Organisational Development training package / Membership officer
IF coordinator
IF board
/ The development of a comprehensive and dynamic capacity building training package / toolbox
Communication of IF actions and the actions of members and partner organisations (EDF / Handicap International / EU / …)
top-down / IF communicates via a monthly Newsflash in several languages on its actions and the actions of partners and institutions / IF secretariat / Monthly newsflash in English
Bi-monthly in Spanish, Dutch and Portugese
Increasing the recipients’ database
IF publishes several publications in 2008-2010 / IF secretariat
IF graphic volunteer / Annual reports
Training packages
Booklets
Brochures
Digital Knowledge Network informs people with Spina Bifida and Hydrocephalus and their relatives and disseminates knowledge on all aspects of Spina Bifida and Hydrocephalus. / The IF digital Knowledge Network ( is used to communicate and disseminate generated knowledge on its members[4]. / IF working group on Knowledge Network (already composed and working)
Subcontracted to limpid studios, consulted by Groep T, Leuven / Expansion of the Knowledge Network to topics of organisational development and human rights / prevention
Representation in international institutions to defend its constituency at international level
bottom-up / IF@EU (European Institutions) / IF secretariat / membership officer or policy officer depending on topic / IF members are informed and comment on EU policies
IF is recognised as a partner of international bodies
IF@EU, part II
IF builds and fosters relationships with European Commission and European Parliament / IF secretariat /
IF@EDF: Board membership of EDF / IF President / IF is elected as representative of ENGOs (outspoken profile)
IF@Council of Europe / IF secretariat / Participation as NGO with Participatory Status
IF@UN / IF secretariat / Good contacts with UN organisations and bodies as WHO, Unicef, ECOSOC
Management of IF / Secretariat: General management of the organisation / IF Coordinator / Reporting directly to board
Secretariat: Financial management / IF Coordinator / Bookkeeper Gert Van Bavel (QBUS)
Auditor Roger De Nul bvba
Secretariat: Human Resources management / IF coordinator / Development and implementation of total HRM for IF
Evaluation talks
Monitoring and evaluation of the activities / IF coordinator
Prof. Dr. Patrick Devlieger (KULeuven) / Development of comprehensive and flexible monitoring tool
IF works with volunteers / IF coordinator / IF as EVS hosting organisation, first cycle spring 20088
Governance of IF / IF holds its annual general meeting / IF secretariat
IF President
IF Board
IF members /
IF holds 2 to 3 Board meetings per year (but the Board works also via email and representation) / IF President
IF Coordinator
IF Board /
IF holds its Board committee meetings / IF Board / Ad-hoc
IF works closely with its members’ Liaison Officers / IF secretariat
Liaison Officers
IF Board / In-depth communication on strategic issues (dissemination / awareness raising / strategic development)
- The International Federation for Spina Bifida and Hydrocephalusis a Human Rights Advocate
HR officer / Follow-up in press
Follow-up of legislation
Right to life: termination of life / Resolution on the right to life (“active termination of life when the child has a disability”) / IF president
HR officer / Action in European Parliament
Dissemination to members to follow-up nationally
Workshop on Human Rights
Sensitization on the quality of life of a child with Spina Bifida and Hydrocephalus / IF network
IF secretariat
HR officer / Development leaflet to be used nationally
Design and distribution of an information brochure on Spina Bifida and Hydrocephalus / IF network
IF secretariat / Disseminate information brochure to national members
Information session at the European Parliament on the Groningen protocol / IF president
IF secretariat
MEPs / Information session at the European Parliament
Prevention / Path to Mandatory Food Fortification / FFI Working group Europe
IF secretariat / Active participation in FFI European actions
Sensitization of intake of Folic Acid Supplements / IF and its members / Search for funding and methodology for a European Campaign on the intake of folic acid
UN Convention / Article 32 / IF as part of IDDC
HI + IF / Participation to the IDDC meetings