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International Federation for Spina Bifida and Hydrocephalus

IF

The mission of the International Federation for Spina Bifida and Hydrocephalus (IF) is to improve the quality of life of people with spina bifida and hydrocephalus (SBH) and their families and to reduce the prevalence of neural tube defects and Hydrocephalus by primary prevention, by raising awareness and through political advocacy, research, community building, and human rights education.

Lobbying Activity

Response to European Disability Card

9 Jan 2023

The International Federation for Spina Bifida and Hydrocephalus (IF) welcomes the initiative of a European Disability Card. Addressing the barriers which persons with disabilities encounter when exercising the right to freedom of movement is vital. Without it, persons with disabilities, including persons with spina bifida and/or hydrocephalus (SBH), will not be able to enjoy equal rights and opportunities within the EU. In order for this initiative to have its intended impact it must be made binding with strong instruments for monitoring and implementation. Not only will making the EU Disability Card binding advance the rights of persons with disabilities. It will also ensure harmonisation within the EU. If the initiative remains voluntary, persons with disabilities are likely to encounter additional difficulties and complexities when travelling from one EU Member State to another. For instance, due to uncertainties as to whether the EU Disability Card or the EU parking card for people with disabilities are valid in the Member State to which they are travelling. A complexity that other EU citizens do not have to cope with when utilising their freedom of movement. In addition, without a legally binding instrument, the impact of the EU Disability Card will be lessened, as without the guarantee that the card will be accepted on the same terms in every Member State fewer people will see a benefit to applying for the card. IF would like to caution against merging the EU Disability Card and the EU Parking Card completely. Options could be explored where both cards can be made binding and implemented in a harmonised way, for example, making the application and/or online access to both cards function in the same way and on the same platform. However, there are significant concerns with merging the two cards and how that would work in practice and the potential unintended consequences. There is a risk that by merging the two cards the condition to accessing the EU Disability Card will be tied to whether the person is entitled to a EU parking card for people with disabilities. Not all persons with disabilities are able to drive, have or make use of a car, and/or may not make use of or be entitled to a EU parking card for people with disabilities as the nature of their disability does not necessitate it. For example, persons with intellectual or neurological comorbidities associated with hydrocephalus such as seizures. It is also important to keep in mind that if the scope of the EU Disability Card is too narrow then it will fail in achieving its objective. If certain services, such as social services, are permanently excluded from the EU Disability Card then it will have limited effect on enabling the freedom of movement for persons with disabilities. It must be acknowledged that without access to support services persons with disabilities are unable to utilise their right to live, work and study across the EU. The EU Disability Card can be used to facilitate the process and/or bridge the gap between leaving the social support system in one Member State and being entered into the support system in another Member State. IF would also like to call on the European Commission to ensure that the creation and implementation of the EU Disability Card will not be the final initiative to address the barriers to freedom of movement for persons with disabilities in the EU. That continual investigation and monitoring of barriers that persons with disabilities face when utilising their right to live, work and study in other EU Member States be launched and this challenge be approached as a multifaceted issue.
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Response to Evaluation of patient rights in cross-border healthcare

10 Feb 2021

Spina Bifida and Hydrocephalus (SBH) are complex health conditions which develop during the first four weeks of pregnancy as a result of the neural tube and spine not developing correctly. The International Federation for Spina Bifida and Hydrocephalus (IF) has represented people with SBH and their families since 1979. With global coverage, IF’s mission is to improve the quality of life of people with SBH and their families, and to reduce the incidence of neural tube defects and hydrocephalus. To achieve this goal IF has been an active advocate on European health, social and disability rights policies, including on cross-border healthcare and the European Reference Networks (ERN). IF welcomes the roadmap for the evaluation and fitness check of Directive 2011/24. In particular, it is encouraging that the importance of including the perspective of patients and their representative organisations is acknowledged. As a patient representative for individuals with Spina Bifida and Hydrocephalus and an active member within the ERN-ITHACA network, IF welcomes the assessment of the ERNs. IF would like to highlight the importance of strengthening the networks as they are an essential component to facilitate access to healthcare and improve the quality of healthcare for persons with complex disabilities and chronic conditions such as SBH. It is vital that consultations with patients and persons with disabilities and their representative organisations are accessible, take a rights based approach and be fully incorporated into the conclusions of the evaluation so their views can help inform future EU actions on this topic. In 2016 IF published a report titled ‘impact of cross-border healthcare on persons with disabilities and chronic conditions’. The report identifies several points for improvement which are still relevant today. The full report is attached to this consultation response and IFs recommendations can be found on page 17. The report indicates that there is cause for concern regarding knowledge and understanding among patients of their rights under Directive 2011/24 as well as difficulties in receiving reimbursements or additional costs which are not reimbursed at all. The experiences of individuals who have used or attempted to use cross border healthcare services under Directive 2011/24 must not disappear among more technical and legal evaluations of the directive. The unique perspective of patients will be vital in order to address all three core questions listed by the Commission on page 2 of the roadmap. In particular, the views of patients is indispensable when addressing the first core question on whether the Directive is relevant for meeting patient needs. These include for example, accessing mental health services, multidisciplinary care, sexual health services and reimbursements for assistive technologies and other additional costs. IF would also like to highlight the need to assess Directive 2011/24 from the perspective of disability rights. In particular in context of the third core question identified by the Commission in page 2 of the roadmap. The EU has a duty to mainstream the UNCRPD in all its activities. It is therefore important to reflect and evaluate whether Directive 2011/24 is fully in line with the UNCRPD and identify whether persons with disabilities encounter challenges when utilising their right to cross-border healthcare services. Including barriers such as accessibility of information, discrimination, stigma, reimbursement of assistive devices and additional costs. Involving persons with disabilities and their representative organisations and mainstreaming the principles of the UNCRPD (in particular art 25) is crucial. IF is happy to take part in the evaluation of Directive 2011/24 and urges the European Commission to consider the comments submitted by IF in this consultation as well as the attached IF report.
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Response to Green Paper on Ageing

14 Dec 2020

Spina Bifida and Hydrocephalus (SBH) are complex health conditions which develop during the first four weeks of pregnancy as a result of the neural tube and spine not developing correctly. The International Federation for Spina Bifida and Hydrocephalus (IF) has represented people with SBH and their families since 1979. With global coverage, IF’s mission is to improve the quality of life of people with SBH and their families, and to reduce the incidence of neural tube defects and hydrocephalus. Europe is currently going through a demographic transition as the ageing population continues to make up a larger proportion of our society. Individuals with SBH are, thankfully, witnessing the same transition. Improvements in medical science and advancement of technology has led to a significant increase in the life expectancy of babies born today with SBH. With current research suggesting that 75% of newborns with SBH will reach adulthood. This is a welcomed development but nevertheless presents individuals with SBH, their families and the communities which they live in with a challenge to take into consideration the additional needs of individuals experiencing ageing with SBH. How to safeguard their independence and wellbeing and ensure that they have access to the services which they require is an important issue for IF and it’s ageing members. IF welcomes the roadmap for the Green Paper on Ageing. In particular the importance of looking beyond the purely economic side of demographic change and the emphasis on health care, long-term care and the need for adequate pensions. However, IF considers it to be vitally important that the Green Paper on Ageing takes into account the needs of individuals who experience accelerated ageing due to SBH or other conditions. The difference in how individuals with SBH experience ageing can have a tremendous impact on their quality of life and mental health, access to adequate pensions, health care, rehabilitation, employment and so much more. The topic of ageing for individuals with SBH is of high importance for IF. The federation facilitates activities together with the Working Group on Ageing with Spina Bifida and Hydrocephalus and in 2020 IF published a report on Ageing with SBH which outlines the results of those activities. The report includes recommendations for European social policy and in the context of the European Commission’s Roadmap for the Green Paper on Ageing, IF would like to highlight the following recommendations: • Identify areas of best practice for transitional model of care for (older) people with neurological conditions such as SBH; • Produce a detailed atlas of variation that collate maps with a narrative to identify and address unwarranted transitional care variation and support improvement in outcome across Europe; • Advocate for a person-centred provision of services that include coordinated and integrated health and social care input; • Consider introduction of legislation to enshrine the right for employment and meaningful occupation of those experiencing accelerated ageing; You can read more about this in IF report “Ageing with spina bifida and hydrocephalus”
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Response to Union of Equality: European Disability Rights Strategy

12 Nov 2020

The primary mission of the International Federation for Spina Bifida and Hydrocephalus (IF) is the promotion and protection of the human rights of individuals with spina bifida and hydrocephalus (SBH). IF represents over 70 SBH associations across the world, including member associations from 23 EU Member States. In collaboration with civic society in the public and private sector and together with important stakeholders IF works to build inclusive communities and raise awareness of SBH. With the goal of reducing the prevalence of SBH in the world through primary prevention, advancing the rights of persons with disabilities and improving management and care for individuals with SBH and their families. IF welcomes the EU Commission roadmap for the Strategy on the Rights of Persons with Disabilities. In particular, IF is glad to see that the right to health and healthcare without discrimination on the basis of disability (as per article 25 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD)) is recognised. The COVID-19 pandemic has demonstrated that the right to health for persons with disabilities is not guaranteed across the EU. The European Disability Rights Strategy must address this discrepancy both in the context of COVID-19 and crisis management (as per article 11 of the UNCRPD) as well as addressing pre-existing gaps and discrimination in healthcare provisions. This must include investigating whether EU Member States “Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;” (Article 25(a) UNCRPD). In addition, access to health services needed specifically for the disability (Article 25(b) UNCRPD) is an essential enabler of full societal inclusion for individuals with SBH. IF would like to highlight the important role of primary and secondary prevention, access to multidisciplinary care and maternity care in achieving the full implementation of art 25(b) of the UNCRPD and support sustainable development within and outside the EU. IF welcomes the emphasis on independent living in the roadmap and would like to emphasise that it is important to take a life-long approach to independent living. IF members have reported that threats to independent living may start when SBH is detected in utero or shortly after birth, with healthcare professionals, support staff or other persons encouraging the family to institutionalise the child. Supporting families with children with disabilities is crucial to advance deinstitutionalisation within and outside the EU. Access to education, employment and multidisciplinary healthcare and support services plays a vital role in enabling independent living throughout the lifetime of individuals with SBH. Furthermore, ageing must be considered from the perspective of disability, including the higher risk of unemployment and poverty, the need for early retirement and as well as continued access to community based services. Lastly, as demonstrated by the examples above, mainstreaming disability rights as laid out in the UNCRPD in all EU actions and policies is essential. Disability is not an isolated policy concern, inclusion of persons with disabilities and full implementation of the UNCRPD requires action across all policy areas. This includes external actions, it is essential that the EU continues to support the implementation of the UNCRPD within and outside the EU. To foster access to disability-specific healthcare services as well as access to general healthcare services, support primary and secondary prevention of disability including spina bifida and hydrocephalus, protect the rights of persons with disabilities, support inclusion and community based care. EU funds must never be used for the segregation of persons with disabilities. For further input see attached.
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Response to European Child Guarantee

6 Oct 2020

The International Federation for Spina Bifida and Hydrocephalus (IF) welcomes the European Commission’s roadmap on Basic services for children in need, in particular that it acknowledges the vulnerability of children with disabilities and children living in institutions. However, IF would like to emphasise some additional and specific challenges that children with disabilities face when accessing basic services. IF's respone and recommendations can be found in the attached file.
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