Author: Dallandyshe Xhaferri
" They have come to return us to the old world. To the world of truth, love, and human values ," - this is how Eglantina Bajrami, the director of the "National Club of Parents of Children with Autism Spectrum Disorders," begins her speech for "Sinjalizo," who has dedicated 18 years of her life entirely to caring for her son with autism spectrum disorder.
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 confrontation, when family members turn to the health system after they have established suspicion. Because we do not even have such pediatricians, who should give a recommendation to the parents and tell them that they need to do a more specialized assessment, give them direction where they should 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 prevents them from working with the child by locking him up and inside", - she concludes.
Meanwhile, 85 kilometers from Tirana, in Lushnja, for Agim, locking his daughter with special needs at home was the best way "to save her 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 for his five other children, while the fear that someone might offend the eldest daughter convinced him that locking her within the walls of the house was the right way to protect her.
" I didn't want to be made fun of or looked at with pity. But now that we want to take her out, to walk her, she won't. She gets angry and there have been cases where she even hit my wife ," he concludes, adding that he sometimes didn't send 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" sent to the Ministry of Education, in the 2022-2023 school year alone, "the number of students with physical and mental disabilities for the 2022-2023 school year 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.
"A student with a disability 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 parents, but also by the teachers themselves.
“ The lack of assistant teachers is a cacophony in Albania because parents themselves have not understood this role, and even assistant teachers themselves have not understood their role in the classroom .” According to her, the role of the assistant teacher is to assist the general teacher in the smooth running of the class “but it is not a crutch for the student with disabilities.”
"Yes, he should go and explain the lesson, but not sit on the bench with him, making the child dependent on the assistant teacher," Bajrami adds, indicating that "there have been many cases where parents have said that their child will not go to school because their assistant teacher has left," she concludes.
"Children with special needs receive education in regular educational institutions, but also in special ones ," the response provided by the Ministry of Education states.
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 disabilities, but I nevertheless put to work the experience I gained as a teacher over the years. I achieved the goal of developing the teaching process in the right way with such a student during the period 2012-2016", - she says, adding that "during the years of my work in education, 1975-2016, there were no assistant teachers in our schools. Under 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.
"Specialized mental health Services for children are provided by multidisciplinary teams specialized for this age group at 4 Community Mental Health Centers (2 in Tirana, 1 in Shkodra, 1 in Elbasan) composed of child and adolescent psychiatrists, nurses, psychologists and social workers," the Ministry of Health and Social Protection said in a response, while there are 67 mental health centers 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 at all centers, as they are uncontrolled. We do not have experts at all centers and the parent goes to the one closest to them, without getting information about whether the center is capable of providing the necessary treatment," she says, adding, " if the local and central governments cooperate, they can find in every possible building any 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 the 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 age group benefiting from the therapeutic and rehabilitation Services offered by this center has been expanded, from 0-6 years old to 0-18 years old, with the aim of maximizing the provider capacities and consequently access to these Services ," the Ministry of Health's response states, while Eglantina Bajrami sees the future of children after they reach the age of 18 as very important.
"Municipalities trumpet that they probably have 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 considered 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 should get a profession. Which means that he or she will have a reason to wake up in the morning, to go to work, even with reduced hours," says Bajrami, according to whom this way "removes the burden from other children of having responsibility for people who have not been treated properly by the local, central government, but also by non-governmental organizations for the needs of this age," she says, adding that keeping persons with special needs engaged "can also keep them away from other problems, such as crime committed unconsciously."
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 amount of benefit for a personal assistant of a person/child with disabilities is 11,915 lek per month and the payment of a personal assistant for paraplegic and tetraplegic children is 12,515 lek per month", - it is stated in the response, while according to the amended decision on the benefit of the status of the blind "the amount of benefit for the guardian of a person/child with blind status is 13,525 lek per month ", - it is written in the response to the request for information of the Ministry of Health.
