AG 2014 SPINABIFIDA 9231 120025 January 2017 // Citizens with disabilities continue experiencing inequalities and barriers in enjoying their right to health both home and abroad. This was the key worrying finding of the research IF undertook in 2016 and presented today at the European Parliament: "Right to health: reality of persons with Spina Bifida and Hydrocephalus", and "Impact of cross-border healthcare on persons with disabilities and chronic conditions". Human rights of persons with disabilities and chronic conditions are routinely violated as they struggle to access appropriate and affordable disability-specific as well as general healthcare in their community. Lack of multidisciplinary care for people with complex disabilities, such as spina bifida and hydrocephalus, limited coverage of mobility devices and continence aids, as well as waiting times have been named as the most serious barriers experienced by surveyed Europeans. Only close to 29% of respondents were satisfied with the care they received.

While the European Union has taken steps to facilitate access to cross-border healthcare for all patients, the impact of the EU legislation on patients with disabilities and chronic conditions has been extremely limited. An overwhelming 77% of respondents have never heard of the European cross-border healthcare Directive, and only a fraction of those who were of the possibility to travel abroad to seek treatment did so. Financial burden of medical tourism, lack of information as well as a language barrier have all been invoked as reasons for not seeking care in another EU Member State.

The IF research corroborates the 2015 Concluding Observations of the UN Committee on the Rights of Persons with Disabilities that voiced its concern about the lack of EU-level measures to ban discrimination against persons with disabilities in access to health and the failure of the EU to measure and analyse the impact of its cross-border healthcare legislation on patients with disabilities.

In light of the research findings, IF urges more targeted attention of the European and national decision-makers to the right to health of persons with disabilities, including through:

  • Intelligent long-term investment in seamless multidisciplinary care for persons with disabilities
  • Training of medical community in the human rights - based approach to health of persons with disabilities
  • Efficient collaboration between Member States, including the development of European Reference Networks, in order to facilitate access to health for persons with complex disabilities and chronic conditions
  • Conscientious monitoring of impact of Directive 2011/24/EU on patients with disabilities and chronic conditions
  • Accessible information campaigns on the right to health of persons with disabilities, designed and run with active involvement of representative organisations of persons with disabilities and patient groups.
  • Improvement of information dissemination about cross-border healthcare by the National Contact Points in cooperation with patients organisations
  • Coverage of assistive devices including continence management aids for persons with spina bifida
  • Reimbursement of additional costs incurred by persons with disabilities when accessing cross border healthcare in order to avoid discrimination

Agenda of the event "Healthcare for persons with disabilities: home and abroad"

Photos from the event

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