Author: Dallandyshe Xhaferri
"They have come to return us to the old world. In the world of truth, of love, of human values", - this is how Eglantina Bajrami, the director of the "National Club of Parents of Children with Autism Spectrum", who has dedicated 18 years of her life to the care of her son with the autism spectrum, begins her speech for "Sinjalizo".
Sitting in her office chair, surrounded by the paintings made by the children of this target group, Eglantina signals that the difficulty of treating children with special needs starts from the moment the parents accept the fact.
"The difficulty is in the first moment of the confrontation, when family members turn to the health system after they have ascertained the suspicion. Because we don't even have pediatricians like that, who have to give a recommendation to the parents and tell them that they need to do a more specialized evaluation, give them the direction where to go", she says, adding that the acceptance of children with special needs by the community still remains a problem. "Because the parent accepts it himself, but cannot accept it in the community, and this is the step to work with the child by locking him in." she concludes.
Meanwhile, 85 kilometers away from Tirana, in Lushnjë, for Agim, locking up his daughter with special needs at home was the best way. "to save him from the prejudices and mercy of others".
"My daughter was born in '98 and for us, at that time, it was even more difficult to accept the child's problem", he says, adding that he has provided education to five other children, while the fear that someone might offend the eldest daughter convinced him that locking her inside the walls of the house was the right way to protect her.
"I didn't want to be ridiculed or seen as guilty. But now that we want to take her out, walk her, she won't. He gets angry and there were times when he hit my friend",- he concludes, adding that he never sent his daughter to autism centers before because he lacked information.
Inclusion of students with special needs in school, Bajrami: The role of the assistant teacher is not properly understood
According to the response to the request for information that "Sinjalizo" addressed to the Ministry of Education, only in the 2022-2023 school year "the number of students with physical and mental disabilities for the school year 2022-2023 is 3981", while "the number of assistant teachers for the 2022-2023 school year in support of children with physical and mental disabilities is 1565". In other words, currently in educational institutions, one assistant teacher is responsible for 3 students with disabilities.
"One student with disabilities is equal to three typical students in terms of the commitment it requires",- says Eglantina Bajrami, adding that the role of the assistant teacher is not properly understood by the parents, but also by the teachers themselves.
"The lack of assistant teachers is a cacophony in Albania because the parents themselves have not understood this role, and even the assistant teachers themselves have not understood their role in the classroom". According to her, the role of the assistant teacher is to help the general teacher for the smooth running of the lesson "but it is not a crutch for the disabled student".
"Yes, he should go and explain the lesson to him, but not sit in the classroom with him, making the child dependent on the assistant teacher",- adds Bajrami, showing that "there have been many cases when parents have said that the child will not go to school because the assistant teacher has left"- she concludes.
"Children with special needs learn in ordinary educational institutions, but also in special ones", says the answer given by the Ministry of Education.
Emine Hysenbelliu, former primary school teacher, now retired, tells "Sinjalizo" that during her experience as a teacher, although she has also taught students with special needs in regular schools, she has never been part of trainings about how teaching can be more efficient with this category of students.
"I was not trained for students with different abilities, but nevertheless I put to work the experience gained as a teacher over the years. I achieved the goal of developing the learning process in the right way with such a student during the period 2012-2016",- she points out, adding that "during the years of my work in education, 1975-2016, there were no assistant teachers in our schools. In these conditions, the activity of the teaching-educational process with students with disabilities was carried out by the class teachers",- she concludes.
In a report of the Supreme State Control on the topic "Pre-university education system for children with disabilities", it was found that there are unqualified assistant teachers in the field of special pedagogy, a fact which makes it difficult to support the proper quality of education and development of children with disabilities. From the data published in the KLSH report, it is mentioned that there are 31 out of 1523 assistant teachers with special education.
What happens after people with special needs turn 18?
The Ministry of Health and Social Protection informs "Sinjalizo" that there are only 4 Community Mental Health Centers in the entire country where children can receive the necessary Services.
"The specialized mental health service for children is offered by multidisciplinary teams specialized for this age group at 4 Community Mental Health Centers (2 in Tirana, 1 in Shkodër, 1 in Elbasan) composed of psychiatrists for children and adolescents, nurses, psychologists and social workers", - says the response of the Ministry of Health and Social Protection, while there are 67 centers for mental health throughout the country.
Eglantina Bajrami says that the lack of state control in non-state centers where mental health therapy is offered is a major problem for children and parents.
"Not all therapies are functional in all centers, as they are uncontrolled. We don't have experts at all the centers and the parent goes to the closest one, he doesn't get the information if the center is capable of providing the necessary treatment".- she says, adding, - "if the local and central government cooperate they can find in every possible building every center that is not licensed by the state. In this case, the state loses, as taxes are not paid and the parents lose, who do not provide proper service to their children", - she concludes.
Also, the response of the Ministry of Health underlines the fact that the National Therapeutic and Rehabilitation Center for Children has expanded the age group that can be addressed to receive the necessary service from psychiatrists, neuropediatricians, social workers, psychologists and others.
"Recently, the beneficiary age group of the therapeutic and rehabilitative Services offered by this center has been expanded, from 0-6 years to 0-18 years, in order to maximize the capacity of providers and therefore access to these Services", - says the answer of the Ministry of Health, while Eglantina Bajrami sees the future of children as very important after they reach the age of 18.
"Municipalities trumpet that they almost have the Services for children over 15 years old, but in fact they don't",- says Bajrami adding that "the fact that you give one-hour therapy to a teenager over 15 years old is not called a service. There are no therapies for this age group, especially when it comes to the autism spectrum.",- she says, adding that practicing a profession is quite important for this age group.
"Persons with special needs who are over fifteen years old must get a profession. Which means, that he or not will have a reason to wake up in the morning, to go to work, even with a reduced schedule",- says Bajrami, according to which in this way "the burden is removed from other children to be responsible for people who have not been treated in the right way by the local, central government but also by non-governmental organizations for the needs of this age". she says, adding that keeping people with special needs engaged "it can also keep them away from other problems, such as unwitting crime."
There is also a lack of service for parents of children with special needs
Bajrami tells "Sinjalizo" that the treatment of family members of people with special needs is also very important, which is missing in Albania.
"At the moment when the child is diagnosed, the whole family must be treated, because in children with autism, one of the first keys to treatment are the rules. If this child is told 'yes', that answer must be kept by the whole family, the same for 'no'", she says.
Meanwhile, the Ministry of Health and Social Protection informs "Sinjalizo" that "the measure of the benefit of the personal assistant of the disabled person/child is 11 ALL per month and the payment of the personal assistant for paraplegic and tetraplegic children is 915 ALL per month",-it is said in the answer, while according to the amended decision for the benefit of the status of the blind "the amount of benefit for the guardian of the person/child with the status of blindness is 13,525 ALL per month",- is written in the response to the request for information from the Ministry of Health.
