Child with rare disease denied access to ordinary schooling

Aleix's family criticises Health Dpt's decision, which says it lacks "tools and skills" to be able to guarantee the child's safety

4 min
Aleix with some of his classmates from Claret school

Barcelona"What do they want, for my son to live locked up at home?" This week the Health Department has informed Alba Jardiel, Aleix's mother, that next year he will not be allowed to continue attending his current school because they cannot guarantee his safety. Aleix has a minority disease that only affects around ten children in Spain, myotubular myopathy, which means he must live connected to a respirator, and causes generalized muscle weakness and motor stagnation. "On Tuesday I was summoned to a meeting with a Health Department representative, a doctor from Sant Joan de Déu hospital and a representative of the Barcelona Education consortium, and they told me that next year there will no longer be the two nurses that accompanied Aleix in the classroom and who took shifts to look after him when needed," she explains.

Without this support, Aleix would not be able to attend Claret school in Barcelona – despite the fact that he has the right to according to the 2017 inclusive school decree – and his parents would have to look for a special schooling option. Jardiel, however, claims that her son followed classes well on a cognitive level so far and says he is very motivated and integrated in the school. "He likes going to school, and the school tells us that they want to have him as a student and his classmates love him very much," she explains. "In this case the inclusive school was working!" she claims, who explains that Aleix "needs someone to check that the airway is kept clean and in good working order," a task that so far the nurses have done "excellently." "Now that he is starting to talk and communicate, it is also easier to control him because he lets you know," Jardiel explains.

During this year, however, one day part of Aleix's ventilator became disconnected and this meant that the nurses had to intervene to connect it. "After this it became blocked with mucus and it had to be changed; sometimes it happens, it is a process that I myself have done at home a thousand times," Jardiel assures.

Aleix and his mother, Alba, at home. The boy has a disease that only affects about ten children in Spain.

Health Dpt says it has neither the "tools nor the skills"

Jardiel claims that the Health Dpt now refuses her son access to schooling in this ordinary school arguing that the nurses "lack the skills to take care of him" and that they "cannot guarantee his safety." "If nurses do not have the skill to take care of him, who does?" she asks, who alleges that at home they, the parents, are the ones who look after the child "without any resources and without being health professionals".

The Official College of Nurses of Barcelona (COIB) wanted to "make it clear that the child has every right to attend an ordinary school and to receive specialised care from a nurse". "Nurses are competent to attend to the needs of Aleix and other children in his situation," the COIB assures Efe, while adding that for this reason "it is necessary teachers, parents and other professionals from the primary care team collaborate to ensure best care and minimise the risks."

On the other hand, the Health Department has told ARA that it is "the health professionals themselves" who have attended to Aleix who "have stated that they cannot continue to provide support, since the child's safety cannot be guaranteed". Thus, they conclude that they have "neither the tools nor the skills to resolve the high level of complexity presented by the child". A version that does not fit in with the family's, taking into account the good relationship they had with the child's main nurse.

Jardiel also assures that during Tuesday's meeting the inclusion area of the Education Consortium also defended Aleix's continued schooling in a regular school. "He has no cognitive deficit", his mother insists, who regrets that "the efforts to normalise and integrate made in clinical hospitals do not have continuity in the educational field". Asked by this newspaper, sources from the Consortium have only detailed that they are in favour of inclusive schooling and that "the debate on this case remains open". Claret school, which Aleix attends, maintains that Aleix "follows the content of classes perfectly". "In fact, he is one of the students we consider good, despite the fact that with him we do a lot of adapted content. He is perfectly integrated and is fully capable of keeping up in a regular school," adds Elena Martínez, head of primary studies at the school. Martínez also points out that having Aleix in class "is a gift" also for the rest of the students, who "have learnt and normalised what functional diversity is and have developed empathy in a way that they would not be able to experience if he were not there", says the head of studies.

Given the family's refusal to switch Aleix's schools or to look for a special needs schools or hospital option for him, the Health and Education Departments confirm that "they are studying possible educational alternatives so that the child can continue to receive an education" and have set up a new meeting with the family in a month.

A decree with shortcomings

The inclusive school decree was launched in October 2017 and had to ensure that children with special educational needs can be schooled in ordinary schools. The plan was for schools to have educational guidance specialists, time slots to attend diversity and physiotherapists to attend children with disabilities or behavioural disorders. There are about 30,000 of them in Catalonia.

The decree, however, went ahead coinciding with the climax of the 2017 Independence referendum and, subsequently, the suspension of self rule and the pandemic have made its roll-out even more difficult. In addition, the decree was born without an economic plan behind it and both families and teachers have been criticising the lack of resources to carry out proper integration of diversity in schools for years. At the end of March, coinciding with the teachers' strike, a group of families and teachers demonstrated at the doors of the Department of Education to draw attention to the difficulties involved in the timid implementation of this decree