In the processes of school pre-registration There are always families with the feeling that they have not been able to choose a school for their children. There are especially serious cases. They are those in which the minors involved have disabilities or rare diseases. To the daily difficulties of these families is added the headache of the school place. That’s how it is these days Trini Acostawaiting for a response from the administration to solve the problem schooling from her daughter Joy, 10 years old. Last March, at the beginning of pre-registration, he already denounced his case in a letter to EL PERIÓDICO.
Joly suffers the Pitt-Hopkins syndromea rare disease caused by a genetic mutation and associated with Mental retardation and developmental, breathing problems and seizures. Most of those affected also they don’t get to speak never. It is the case of Joly. In Spain, according to data from the Pitt-Hopkins Spain association, there are forty children diagnosed. “All of them go to special education schools,” says Acosta.
“Joly is a nonverbal girl. She has a high intellectual delay, with 68% disability and an IQ of 25,” explains her mother. That is why she claims a place in a special education school. Until now she has gone to an ordinary school, El Margalló de Vilanova i La Geltrú, but her parents consider that in a special school she will be better attended and will be able to evolve better within her possibilities. This is endorsed by reports from neurologists and social educators from the Sant Joan de Déu Hospital and the ASPACE Foundation who are taking Joly.
So in the last pre-registration they requested a place for Joly in the special education school that ASPACE has in Barcelona. They didn’t get it. The Consorci d’Educació argued that the psycho-pedagogical orientation team (EAP), despite admitting in its opinion that Joly has a “serious intellectual disability”, considers that the girl can go to an ordinary school with special educational support in a SIEI classroom, as usual. The family filed a claim, attaching the medical reports. That was the issue until June 20. “From ASPACE they told us then that the Consorci d’Educació had informed them that they could enroll all the pre-registered regardless of whether there were claims and we proceeded to enroll the girl and drop her from El Margalló”, explains Acosta. “We were relieved at that moment, happy that the girl could go to that school.”
On August 10, however, a “surprise” awaited them: the family received a letter from the Consorci in which they were denied the place, again alleging the EAP’s ruling. And that’s how things are today, when there are barely 10 days left before the start of the course. Those responsible for the EAP are on vacation until September 1.
The mother does not understand anything. “They told us that families always had the last word, but they force us to go to an ordinary school. They are denying me the right to choose the school that the experts recommend for my daughter,” she denounces. She has raised her complaint to the Greuges Ombudsman, Esther Giménez-Salinas, who has already requested information on the case from the Department of Education.
“No interaction” at school
The ordinary school experience for Joly and her family has not been rewarding, at least in the last stage. By age, the girl should start 5th grade, but she repeated P-3 and 1st (“against our criteria and that of the psychologists,” says the mother), so in September she will start 3rd. “When she was younger, she was learning and we saw some progress. But now she is stagnant,” says Acosta. “She has a speech therapist 30 minutes a week and since last year, from 09:00 to 09:15 she works with a communicator (the device that will serve to express itself). “The rest of the day she is mute, without interaction. Nobody works with her,” laments her mother. She adds the management of the medication that Joly takes, which can have side effects. “Without a nurse at the center, who controls that?”
The girl doesn’t feel integrated either. “They have hit her, insulted her, they have made fun of her. She has finished the course frustrated and self-harming“says the mother. The straw that broke the camel’s back was some images taken by the school itself of an activity. Joly and another classmate with special needs are seen without material on the table and absent. “This is not inclusion, it is segregation,” denounces the mother.
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This mother believes that behind the refusal to give her the place there is also the fact that if Joly enrolls in Aspace, Educació will have to assume the school transport from Vilanova to Barcelona. “I have proposed that they leave her in Les Botigues de Sitges and that she take advantage of the school bus that takes children from this municipality to Aspace,” says the mother.
In Garraf, there are no special schools since in 1983 the Government started a pilot test in this region so that ordinary schools were truly inclusive for children with disabilities. The reality is that although it is known as ‘the inclusive region’, the centers continue to suffer from a lack of resources to attend to these students accordingly. “In Aspace they have offered us to school her there because they believe they can help her, that she can improve, learn to communicate,” says Acosta. “I demand that they let me enroll her there,” she adds desperately.