Iker, a nine-year-old boy who was born with cerebral palsy, has returned today to the Congress of Deputies. It already did so in 2017 to deliver 350,000 signatures that requested a law so that the National Health System incorporate early care, the set of specialized therapies that children with neurodevelopmental problems need.
Sessions with physical therapists, speech therapists, occupational therapists, psychologists and doctors are vital for children to learn something as basic as walking, sitting, talking, swallowing, toilet training or picking up a pencil. The brain never has as much plasticity as up to the age of three, so the early detection is vital. Also the treatment, which improves (and a lot) the sequelae. However, early care -which depends on the autonomies- makes water in Spain. In many territories, there are waiting lists that take years, a lost time for many families.
Unavailable to discouragement, Iker and his parents have returned today to the Congress to deliver another 100,000 signatures calling for universal and quality early care. The child’s family has come to Parliament accompanied by several members of PATDI, Platform for Early Care and Children’s Rights with Functional Diversity. Among them, Raquel Sastre, mother of Emma, a girl with autism spectrum disorder, caused by Phelan McDermid syndrome. Professional comedian and collaborator of scientific outreach programs such as ‘Órbita Laika’ (La 2), Sastre is the author of Risas al punto de sal, a sincere, useful, and fun guide aimed at parents of children with some type of disability. Iker and Emma are not unique cases. According to PATDI figures, one in ten boys and girls in Spain need early care.
“It’s fundamental that he government prioritize this topic and push it decisively. We have asked all parliamentary groups to promote initiatives for this. We consider essential the inclusion of early care within the portfolio of common services of the National Health System. That is the way in which the right to protection of the health of boys and girls would be guaranteed ”, reads the PATDI statement.
Every case is a world. There are milder disorders and there are more serious ones, such as autism, cerebral palsy, delayed intelligence and emotional immaturity. The families of affected children denounce an infernal bureaucracy and long and opaque waiting lists to access public treatments. On many occasions, fathers and mothers pay out of their own pocket for the therapies their children need, either because the center is arranged or because they go for private treatment. And that’s if they can afford it.
“We want to make the problem visible, collect signatures, talk to all political parties and fight for the rights of our children,” he explains. Oscar Hernández, who founded PATDI-Madrid at the end of 2017 and who today met with Citizens and More Country.
That there is no delay in the treatments is fundamental because time runs against the boy and the girl. As the brain matures, it becomes less permeable to early care treatments. The first failure of the system is that primary care centers (the outpatient clinics where the usual check-ups are carried out) do not always have the necessary resources for an early detection of the problem. When there is a diagnosis, you have to go quickly to therapies.
Furthermore, the pandemic has not helped to improve the outlook. Rather the complete opposite. “So far in 2021 the cases diagnosed as developmental alterations related to the functions of interaction-communication and receptive-expressive language have increased,” he explains. Adelaida Echevarría, coordinator of the early care service in Cantabria.
Eddie is an Australian news reporter with over 9 years in the industry and has published on Forbes and tech crunch.