Economic crisis exacerbates the suffering of children with disabilities in Lebanon

“It was not easy for us when the doctor told us that our child suffers from autism and that there is no treatment available for him, but only sessions and for a long time so that he can interact and learn.” With these words, Angie, a Lebanese woman in her forties, begins her story.

Angie, who works in the medical sector in Lebanon, told Jusoor Post that her son's birth was complicated from the start. “When my child was born, the umbilical cord was wrapped around his neck, his body was full of black spots, his eyes were red, and there were no doctors in the hospital to give him the necessary treatment,” she said.

“I discovered at the age of one year and two months that he does not interact like other children, does not respond to being called by his name, and does not interact by looking. I confirmed at that time that my child has autism,” she added.

“The doctor did not explain to me what autism is in detail, so I took upon myself the journey of research and scrutiny of all the details, and it was a long and arduous journey,” she continued.

Angie recounted that she began conducting medical examinations for her son, including “a hearing test, a genetic test, a blood test, and a head scan,” adding, “I showed him to a large group of doctors, and we even sent his medical file to the United States for a doctor to follow up on, but unfortunately his travel was not approved.”

In addition to the many difficulties the family faced in medical examinations and treatment, they also faced great difficulties in education. “In the first school, he couldn't adapt and the school didn't manage to control him,” said Angie.

Here, the family again began a search for a school to receive him. The mother said, “I tried with many schools, but the dilemma that they do not receive autistic children prevented this, until we found a school that has an integration program, but it is also not intended for autistic children, so I had once again to appoint a special teacher for him without other therapists because of their exorbitant cost.”

“My son remained in this state until the fourth grade, when the school decided to suspend him because there were no English classes after this stage,” she added.

The family then opted for public school. Angie explained, “We faced some obstacles, as there is no law that allows a private teacher to be in the classroom, so I raised the matter to the Minister of Education in the year 2020, and the approval came, and my child was one of the first children to be accompanied by a private teacher in the class.”

“However, the government did not cover the expenses of specialists according to the UNICEF-supported program (which requires the provision of a speech therapist, a movement specialist, and a remedial teacher). Then came the demonstrations, and then the corona pandemic, so my child stayed at home with the supervision of a private teacher only at my own expense,” she continued.

Angie explained that “children with autism need a lot of expenses. In light of the current economic crisis, and despite my good financial situation, I tried to dispense with some sessions because of their high costs. The cost of one session for specialists ranges between twenty and forty dollars.”

She wondered, “Whoever doesn’t have a high income, how can he take care of a child with autism?”

The assistance of the Ministry of Social Affairs and associations for children with autism is very limited, according to Angie. She said she “contacted many associations concerned with autism, but what they offered was an awareness program for parents.”

The mother called for the development of special educational programs for children with autism that allow them to integrate into society, in parallel with developing programs that allow them to integrate into society and limit the bullying they are exposed to.

Different stories and forms of suffering are the same

The story of Lina, a forty-year-old mother, is not very different from Angie's tragic journey with autism.

Lina told Bridges Post that she “underwent a bitter journey after discovering that her first son was autistic,” adding that she and her husband “had to travel to work in a Gulf country to save up for treatment.”

Lina regrets the lack of “a suitable environment for children with autism in Lebanon and the near lack of necessary awareness, as they are subjected to bullying and disturbance, and they are asked to stop screaming, for example, which is involuntary for them.”

“Although the media and social media platforms have contributed to spreading some information about autism, in addition to allocating April every year to raise awareness about the reality of autism, more respect and rights are required,” she said.

For her part, pediatric neurologist Simon Khalifa Karam explained to Jusoor Post, “Autism is a delay in language and physical communication. The diagnosis is made by a pediatric psychiatrist or a pediatric neurologist.”

She added that “there is a relationship between epilepsy and autism, as 40 to 60 percent of children with autism also suffer from epilepsy.”

“In order to improve the condition of autistic children, comprehensive health and psychological care must be provided to them, in addition to special study and educational programs. This matter is very expensive in Lebanon,” she continued.

Rights on paper

In 2006, the United Nations General Assembly adopted the Convention on the Rights of Persons with Disabilities, and it became effective as an international charter on May 3, 2008. In March 2008, the Lebanese parliament passed a law authorizing the government to conclude the convention with the accompanying Optional Protocol, in Article 7 of it, on children with disabilities.

It states that States parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms, on an equal basis with other children.

However, in Lebanon, reality is still far from the words of laws and texts. The story of many families, like Angie and Lina, reflects society's lack of awareness of the reality of disability, as well as its injustice towards people with disabilities.

Kasim Al-Sabah, Executive Director of Mousawat Organization‎, which works to promote opportunities and rights of persons with disabilities and refugees in Lebanon, explained that children with disabilities in Lebanon “suffer from several problems in terms of education and health, such as the lack of public and private schools, in addition to appropriate facilities that guarantee an educational environment in which all students are able to participate in education.”

He said that one of the main problems facing families with a child with disabilities is “the lack of specialists concerned with developing individual learning plans and following them up in schools and the lack of comprehensive curriculums, including the absence of individual educational programs.”

“Another problem is the high cost of educational fees and expenses, including the high cost of transportation, logistical obstacles, and the inability of a large number of schools to receive children with disabilities,” he continued.

On the health level, Al-Sabah indicated that “the health problems faced by children with disabilities are many, including the inability to enter government and private hospitals due to the high costs of hospitalization and the inability to secure permanent medicines, either because of their high cost or because they are lost from pharmacies.”

“There is no clear information available about the number of children with special needs in Lebanon, nor about their number in schools,” he said.

“According to the government program for ensuring the rights of the disabled, which is mandated to enroll people with special needs in schools, there are currently 8,558 children with special needs in schools, between the ages of 5 and 14, which is the age of compulsory education. Of these, 3,806 are in educational institutions funded by the government, while a small number of them are distributed in public and private schools,” Al-Sabah added.

He affirmed that “in the absence of decisive figures, the effectiveness of any plan or strategy to provide comprehensive care for people with disabilities, if any, will decline.”