RIGHT TO HEALTH OF CHILDREN AND WITH CEREBRAL INJURY IN SPAIN
The no injury Foundation has presented a report on the RIGHT TO HEALTH OF CHILDREN AND WITH CEREBRAL INJURY IN SPAIN to the United Nations Human Rights Council in the framework of the Universal Periodic Review (UPR) to which the State will be subjected in early 2020, which highlights the lack of sufficient health coverage in children with brain injury.
In Spain children with acquired (DCA) or congenital (mostly PCI) brain injury are not entitled to the health and welfare care they need. Spain fails to recognize the rights of children with brain injury due to a lack of legislation, as well as a lack of implementation of the necessary human and material resources that allow the entire paediatric population, regardless of their place of residence, to have access to early care, post-early care, transdisciplinary neurorehabilitation units, paediatric palliative care units and home care for critical patients.
The Foundation Without Harm (FSD) has submitted a report on the RIGHT TO HEALTH OF CHILDREN AND BRAIN INJURY IN SPAIN before the United Nations Human Rights Council in the framework of the Universal Periodic Review (UPR) that the State will undergo in early 2020, which highlights the lack of health coverage of children with brain injury.
https://www.fundacionsindano.com/wp-content/uploads/2019/11/Informe-EPU-Fundacion-SD-ingles.pdfMadrid, 24 July 2019
The Fundación Sin daño (FSD) presented the report “THE RIGHT TO HEALTH OF CHILDREN WITH CEREBRAL INJURY AND RELATED DISEASES” to the Office of the United Nations High Commissioner for Human Rights on 18 July as part of the Universal Periodic Review that Spain will undergo at the beginning of 2020.
According to data from the Federation of Brain Injury in Spain (FEDACE) the incidence of acquired brain injury in children is 191/100,000, with an even higher prevalence. In addition, the number of people with Cerebral Palsy (congenital brain injury) in Spain is 120,000. Cerebral Palsy being the most common cause of disability in children.
Points- axes- of the report
I. Pharmaceutical Copayment
The current model of pharmaceutical copayment of pharmaceutical products should be changed to expand the group or groups that currently do not have access to free health care, with a view to guaranteeing their human right to health.
The pharmaceuticals and medical devices co-payment exemption should include at least the following groups: 1) persons with disabilities not otherwise exempted; 2) persons with an income of any kind not exceeding a minimum threshold to be determined on the basis of poverty risk indicators; 3) persons with chronic diseases, with particular reference to minors, including rare diseases, degenerative diseases and oncological pathologies; 4) persons in other exceptional circumstances that deserve individualised recognition of the exemption benefit.
Minors and adults with acquired or congenital brain injury. Right to cognitive and behavioural rehabilitation
Cognitive and behavioral rehabilitation of people – both minors and adults – with brain injury should be included in the National Health System’s common service portfolio.
In order to adequately care for people with brain injury, the cognitive and behavioral rehabilitation included in the portfolio of common services of the National Health System should explicitly define the professionals and therapists needed in the field of neuropsychology and clinical psychology.
III. Right to health of minors with brain injury. Pediatric neurorehabilitation units
In order to guarantee comprehensive care for children with brain injury and related diseases, regardless of the autonomous region in which they reside, child neurorehabilitation units should be created to serve the entire National territory. These pediatric neurorehabilitation units must provide careto all minors with functional sequelae, both physical and cognitive and behavioural, derived from neurological diseases or injuries, whether of congenital or acquired origin. Pediatric neurorehabilitation units must be equipped with the necessary material resources and a transdisciplinary team consisting of at least a neuropediatrician, rehabilitation physician, physiotherapist, speech therapist, occupational therapist and neuropsychologist or clinical psychologist.
IV – Early care
There are currently significant differences between autonomous communities in terms of early care and availability of resources. For this reason, a law should be passed at the national level to guarantee access to universal, free, integrated and comprehensive early care.
Transition to Adult Units
Transitional consultations should be created in all paediatric services of public hospitals to ensure an adequate therapeutic relationship with the different adult specialties with special attention to the transition from oncological, neurological and serious mental health disorders.
VIII. Eating Disorder Units
Resources for eating disorders should be expanded to ensure easier access to both outpatient and inpatient benefits.
IX. Rare and neurodegenerative diseases
Research on rare diseases, neurodegenerative diseases and orphan drugs should be encouraged, financial resources increased and research coordinated.
A protocol for action should be drawn up, in coordination with all the public administrations involved, to facilitate a comprehensive assessment of the socio-health needs of people affected by a rare disease and their families.
X. School nursing
It is essential to extend the presence of specialised health professionals in all educational centres, who work in a coordinated manner with primary and hospital care, in order to attend not only to the health needs of students with disabilities, but also to those with chronic and permanent ailments or who require continuous health care over time.
Social policies must be designed to take comprehensive care of the health of dependent persons with disabilities and the health and quality of life of their carers, in order to avoid reducing an increasingly social problem to the family and individual level.