Lebanese Mom Pours Her Heart Out Over Her Disabled Daughter During Covid Lockdown

“We as parents of disabled children, we were always frightened about the idea that if something gets to us, if we die, what will happen to our children? Now we are afraid for them and for us.”

These were the concerns of Susanne Nasreddine, single mother to 13-year-old Noor who has autism. As Lebanon’s coronavirus induced lockdown burdens the country, Nasreddine revealed the new anxieties for her family. The Daily Star met Nassreddine at her home near Jiyyeh where Noor and her other daughter, 17-year-old Mariam, are both staying put with the closure of schools and institutions during lockdown.

The spiraling numbers of coronavirus infections across Lebanon have led the government to impose a two-week lockdown, from Nov. 15 to Nov. 30 in an attempt to curtail the spread of the infectious disease. Schools and educational centers have been ordered to close once again, to be replaced by online teaching. This is a straightforward change for Nassreddine’s daughter Mariam who attends a public school close to home.

But for Noor, as a child with special needs, her education is far from straightforward. In Lebanon, the responsibility of the rights and status of disabled people falls to the government, specifically the Social Affairs Ministry. In fact, under Lebanese law, all children should have an education free from discrimination. Lebanon’s law 220, approved by Parliament 20 years ago, secures basic rights for the disabled, but the law has yet to be ratified and has a limited definition of disability.

Despite this law, there is no running public service for people with a disability in Lebanon. Instead, the Social Affairs Ministry contracts around 100 NGOs to provide education, therapy and other needs. Many of these NGOs were established by the families of disabled children, who were left with no option but to sort out a system for their children.

This is the case for Dr. Moussa Charafeddine, president of the Friends of the Disabled Association which was established in 1978. After the birth of his two sons with disabilities, Charafeddine founded the Idad Center in Mishrif, which hosts around 130 disabled people from the age of 4 to 40. The center caters for all ranges of disabilities and has different levels of education; from independence training to workshops, and vocational programs and physiotherapy.

Speaking to The Daily Star, Charafeddine explained that the center relies on funds from the Social Affairs Ministry to function. But in the last year, the ministry has failed to provide financial support. “So far they did not sign the contract for the year 2020.” Moreover, NGOs are still missing money from the final semester of 2019. Despite this, the ministry have told NGOs to start contracts for 2021.

The financial crisis that has been crippling Lebanon has caused a devaluation of 80 percent of the Lebanese pound, causing capital flight and a shortage of US dollar banknotes in circulation. The Central Bank has fallen into its reserves and debt across the country has been rising. As a result, the government has not been able to pay its dues.

The ministry is contracted to support 120 students at the Idad Center from families unable to afford the high fees demanded by special education. But Charafeddine explained that the relationship with the ministry has suffered shortfalls. Even in the past when the ministry did pay up, the rate of the contract with the NGOs is based on the 2011 cost of living index. “Even if they will pay it will be about 10 percent of the expenses of the service nowadays.”

Charafeddine is in current contact with the ministry, which has assured it will be sending the missing payment. But Charafeddine has little faith as until the 2020 contract is signed, no money will be coming their way, leaving the Idad Center at serious risk of closure. He added that additional fundraising for the center in Lebanon’s current crises-ridden climate has been unsuccessful.

According to the UN, around 5-10 percent of a country’s total population is disabled. Applied to Lebanon, this means there as are many 600,000 disabled persons. But the Social Affairs Ministry only has 105,000 people registered with an official disability ID card, and only 9,200 of those having educational sponsorship. Social stigma around disability and lack of public information play a part this in this imbalance.

Step Together is an NGO established in 1993 to support the special needs community in Lebanon. It was founded on Rudolf Stenier’s educational philosophy of creative freedom. Dr. Reem Mouawad leads 200 students at the center, with almost 140 of them funded by the ministry, and the rest privately financed. Speaking to The Daily Star, Mouawad explained how that number would have to be drastically cut to ensure the survival of the NGO.

“I have been working to try and receive private students to stabilize the situation at Step Together … there is no solution of survival of NGOs without decreasing the number of students on the ministry.” Mouawad confessed that she was torn between the financial strain on the NGO of ministry students and reluctance to abandon their education. Furthermore, since the last academic year, NGOs have been unable to take on new students that would be covered by the ministry due to the government’s funding failure.

It is impossible to state the value of these NGOs for parents of disabled children. The Daily Star spoke to a mother who called up every school in the country in an attempt to locate a place for her autistic son.

Solange Badr is the mother to 10-year-old Hisham. She explained how difficult it was when he was first diagnosed to know where to turn and the lack of support from the state.

“Back then I didn’t have any kind of support, there is no manual for these kinds of things. I literally called up every school in the country; English, French, Arabic, private, public. There are no public schools for special needs.” Badr concluded.

According to Mouawad, the Social Affairs Ministry is pushing for the Education Ministry to take over responsibility for special needs education. There are now 30 inclusive public schools and the ministry are keen for more to help. But Mouawad admitted she has little faith of this ever being achieved “They [the government] start something and don’t continue with it. There is no clarity in the vision.”

But for the Social Affairs Ministry it is a way to offload the burden to another, better-funded department. Mouawad went on to reveal that the Social Affairs Ministry used to sponsor children until the age of 16, but since last year, it was reduced to 12-years-old. This was to encourage students to move onto mainstream public schools Mouawad said. But in reality, this has been an unfeasible solution, as the range and complexities of disabilities makes it expensive and lengthy to accommodate special needs children.

Furthermore, for some special needs children, being pushed into mainstream education can result in a greater disparity. For Nasreddine, the most essential aspect of her daughter’s life is for her to be happy and comfortable in her surroundings; whether at home or the Idad Center. “They say we have to integrate them in other schools, why would you want to impose? Let them be in a background they are at ease with, they are happy with.”

With the NGOs threatened to close due to government deficiencies, the daily anxieties for parents of disabled children have exemplified. This is on top of dealing with the political and economic crisis, the devastation of the explosion in Beirut and the coronavirus pandemic. These centers, like Step Together and Idad, are, for both the students and their families, places of refuge, happiness and stability in a country dominated by instability and a low regard for the disabled.

But the government’s failure to take responsibility for its disabled people, alongside the country’s catastrophic economic and social descent means an assured future for the special needs community in Lebanon is at a critical point. As Tania Abi Karam, whose son George attends Step Together, told The Daily Star: “Each human being should have a place, disability or not. You cannot accept that a school or NGO like this is threatened to close its doors. It is like heaven for them. You go there and you don’t want to leave, you feel the love and happiness.”

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