The Parliament of Navarra has hosted this Monday an institutional event of adherence to the International Day of Spina Bifida, organized together with ANPHEB, with the purpose of giving visibility to the reality of the affected individuals and their families, addressing their demands and reaffirming the commitment of the Chamber to their autonomy and full social inclusion.
The president of the Parliament, Unai Hualde, has highlighted the relevance of the work carried out by the Navarra Association of Spina Bifida and Hydrocephalus (ANPHEB), emphasizing their "ongoing work, their ability to accompany families and their advocacy work," and stressing that the voice of social entities constitutes a "fundamental and indispensable tool to guide and design public policies."
During his speech, Hualde has insisted that health and inclusion "are rights, not privileges," which is why he has called to overcome mere statements of intent through the allocation of resources, adequate planning, and effective coordination among professionals that "prevents families from bearing the burden of managing services alone." Likewise, he has defended a comprehensive approach to health that combines "adequate and continuous medical care throughout all life stages with the improvement of living conditions and the autonomy of those affected."
Hualde has also referred to the current regulatory framework in the Foral Community, recalling the Foral Law 31/2022 on the care of people with disabilities, and has focused on a future challenge: ensuring the quality of life and well-being of people with spina bifida and hydrocephalus as they age.
The president of the Chamber has concluded his speech by thanking "the perseverance of ANPHEB to eliminate barriers and its constant contribution to the permanent improvement of public services in Navarra." "Let us continue moving forward together towards a healthier, more accessible, and inclusive Navarra, where no one sees their future limited by barriers that, as a society, we have the obligation to eliminate. In this sense, it is important to listen, once again, to the assessment of the moment and the demands of ANPHEB," he concluded.
Next, the president of ANPHEB, Gotzone Mariñelarena, has denounced "the progressive loss of quality of life of the collective" and has demanded immediate measures that ensure effective personal autonomy, as well as the review of non-contributory pensions.
"Do not confuse our resistance with well-being," warned Mariñelarena, who highlighted "the enormous invisible effort that it takes to sustain daily work activity while health deteriorates."
In this line, although she has acknowledged the progress represented by early retirement at 56, she has warned about "the void and lack of protection for those whose health declines much before reaching that contributory age," questioning "who is responsible for the life that is being lost while reaching the legal age."
The president of ANPHEB has focused her demands on the need to ensure economic resources and timely support for affected individuals. "Autonomy is not doing everything alone; it is being able to decide about your life, and that is impossible if support does not arrive or if non-contributory pensions force a choice between paying for electricity or personal assistance," she stated, describing it as "injustice" that the extra costs associated with disability continue to fall on families. Therefore, she has called for institutional equity to "eliminate the steps" represented by "insufficient income" and the aid that "arrives late."
Mariñelarena concluded by inviting citizens to join the activities of the awareness campaign promoted by ANPHEB on the occasion of World Spina Bifida Day, which includes theatrical performances, information tables, and a campaign of hanging hangers in the villavesas of Pamplona with the slogan "Spina Bifida: a chronic illness with a lot of life ahead," with the aim of fostering greater social understanding.
As a symbolic gesture of support, the Parliament of Navarra will illuminate its facade in yellow during the evening-night of Sunday, the 25th.