Almost a year and a half ago, Estíbaliz Martín took his daughter Érika to an Early Care Center (CAT) in the province of Alicante to receive speech therapy, occupational therapy and physiotherapy sessions. There were three sessions of 45 minutes, two days a week. The four-year-old needs them because she has genetic epileptic encephalopathy. The disease, rare and lifelong, is characterized by recurrent epileptic seizures and a delay in development, for which it requires stimulation and treatment by professionals. Now, two years later, he sees the quality of her treatment in jeopardy because her weekly therapy sessions have been reduced, a case very similar to that reported by some Valencian families who have children with developmental disorders.
The General Directorate of Functional Diversity and Mental Health of the Valencian Community published a new instruction in July of last year to reduce waiting lists and improve the early care service in the face of “the progressive increase in demand” in recent years. To do this, he intended to rationalize the interventions and establish a single session of 45 minutes a week for children who entered the system from that moment on. Families like Estíbaliz’s, who already have a place, denounce that the number of therapy sessions for their children have also been cut. In Spain, those in charge of managing early care —which includes a set of free interventions for children from zero to six years of age who present a developmental disorder to improve their quality of life— are the autonomous communities, because there is no law Statewide.
For Érika, going to a shopping center, a parade of kings, taking a shower or brushing her teeth are very complicated experiences. She has a hard time due to her sensory disorder. “These things do not disappear, you have to work on them. Every minute of inattention counts and is very important for these children, ”explains her mother. From the Ministry of Equality and Inclusive Policies, in charge of instruction, they explain that the change in the number of sessions only applies to new users of the centers, and in no case can it be assigned to children who already had the sessions set previously. “The reductions that have been made depend on the criteria of the professionals in the centers,” says Elena Albert, general director of Functional Diversity. “It is important to act as soon as possible, and guarantee at least one session for all the children who need it, but never take it away from those who already have it,” she adds.
Juan Francisco’s son is four years old and has grade one autism. At his CAT he received two weekly sessions, one of early stimulation and another of speech therapy, thanks to which he learned to speak. “Before he was three years old, he didn’t say anything,” recalls his father. A week after the new instruction came into effect, the speech therapy session was withdrawn. “The boy took a huge leap in his ability to communicate when he started. Now it is much more difficult for him to pronounce”, says Juan. “Waiting lists will be reduced, but the service is becoming more widespread, and that worsens his health,” says Estíbaliz. In 2015, the department dealt with 1,476 cases. In 2022, there were 3,651, according to department data.
The underlying problem is the saturation of the system. The entry of new users to the CAT can prevent professionals from attending the same hours to the children who were already there. “Precisely for this reason we have expanded the resource, and if we did not see the need to do so, it would now be more saturated,” explains Albert. According to data from the Ministry, since 2015 30 centers have been created and there are a total of 65, all financed with public funds. “The instruction is not the automatic cause of the reduction of sessions,” insists Albert, whose department reports to the first vice president of the Consell and counselor for Equality and Inclusive Policies, Aitana Mas, from Compromís.
Clara was also withdrawn from the therapies that her daughter, Valeria, received at the CAT, alleging that it overlapped with the treatment she received at school. Valeria has a rare disease that causes psychomotor, intellectual and speech retardation. “The attention she receives at school has nothing to do with what she receives at the CAT. She needs specialized help. They are not even the same professionals”, says Clara. Her mother reports that when Valeria stopped going to the CAT psychologist, her behavior changed. She turned back.
From the Ministry they emphasize that some centers have been able to transmit erroneous information to families and that, in the event that a professional considers that a child needs more hours of treatment than they receive, they can always communicate it through a report and the families contact the General Directorate. The person in charge affirms that, so that there is no arbitrariness in the professional criteria, 30 additional jobs have been created for the assessment and monitoring of children.
Clara fought for her daughter’s attention. After several complaints and claims, she managed to get them to stop physiotherapy, although she doesn’t know how long it will last. She is sure the 45 minutes of psychology. The rest of the therapies that her daughter receives, such as speech therapy, are paid for by Clara in private clinics. Estíbaliz does the same, which pays for four sessions also in private centers. “The early attention service is a relief for us. Because of the private, it is impossible to sustain it”, adds Juan.
From the Ministry they emphasize that early care “is 24 hours, seven days a week and 365 days a year of work”, with the family burden that this implies. “It is not going to the center for an hour to stimulate the muscles of the boy or girl, but also teaching the parents what to develop”, develops the general director. Parents, suffocated by the difficult conciliation, argue that it is impossible to provide the same quality treatment at home as a professional. “I can’t be my son’s therapist. I am neither a physiotherapist nor a speech therapist”, explains Clara. Opinion shared by Estíbaliz and Juan, who are afraid of doing something wrong.
Estíbaliz, who also has another son, worked for three years after Érika’s birth. He now dedicates himself exclusively to taking care of her, constantly pending the phone, in case they call him from school to notify her that her daughter has had an epileptic attack. Clara does the same, and Juan’s wife hasn’t worked for five years. They insist that, with a single salary at home, it would be very difficult for them to pay for more therapies in private clinics. “And, of course, leaving my daughter without the care she needs is by no means an option,” insists Estíbaliz.
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