Lebanon News

Disabled kids pay price of Cabinet crisis

HADATH, Lebanon: The Kafaat center for disabled children in the Greater Beirut suburb of Hadath is eerily quiet. Empty wheelchairs line the halls, and colored physiotherapy equipment lies unused in newly renovated classrooms.

“We take two steps forward, then the government takes us 100 back,” the center’s head Doris Bilen says, as she walks around the brand new facilities.

On Monday the center became one of the 35 of the country’s 56 facilities which provide care for 8,000 disabled people that have been forced to close in recent days thanks to a funding crisis that has been threatening the sector for years, with Raif Shwayri, the head of Al-Kafaat foundation, predicting the remainder will go the same way in the coming days.

When open, the Hadath center caters to around 300 physically handicapped children, providing a range of crucial services free-of-charge to families, including physiotherapy, speech therapy and specialized education. Over half of those children have handicaps so severe they need round-the-clock care, usually provided for by the center’s residential facilities. On Monday, they were all forced to return to their homes.

Bilen says she worries about the impact even a short break from their therapy and education can have on these children.

“I’m very concerned. We see a noticeable decline in children when they leave the center for extended periods. In behavior, in movement. Also when they’re home, some parents work, and they don’t know how to deal with their children,” she says.

NGOs have been calling on the government to respond to their funding troubles for three years now. By law, funding for the sector should be reassessed on a yearly basis, but no meetings to discuss the prices to be paid for services were held between 2004 and 2011. The latest prices have not come into effect and organizations are currently paid just 60 percent of the prices set in 2004, and say bills are rarely paid on time.

The impact of crisis goes beyond the temporary suspension of services. Two weeks ago, Kafaat’s Hadath center was forced to suspend work on renovating one of the key sections that caters for children with cerebral palsy, to divert the funds to pay salaries, pushing back the facility’s scheduled development.

None of the 100 staff at the center has been paid for the month of April, nor are they likely to be paid next month. They continue to come to work every day, caring for around 25 children who come in for critical treatments, but Bilen says she can’t be sure how long that will continue if salaries are not forthcoming.

Among the children who are still coming in is 6-year-old Hicham Jawahar. Hicham is poly-handicapped; he can’t talk and has few motor skills. He started going to the Kafaat center four years ago from his home in Choueifat, and before it closed he spent seven hours a day there, receiving a range of treatments including speech therapy and physiotherapy. Now, he stays at home with his mother, Mariam, attending the center once a day to receive crucial physiotherapy treatments.

Mariam says the difference the Kafaat center made to Hicham’s life was “something.”

“He couldn’t stand. Now he does. He was like a purse. He couldn’t move. Now he follows me around the house everywhere. We can’t put anything on the tables, because he moves around so much,” she says. “He didn’t used to look at us. He didn’t used to focus on our faces. Now he can.”

She tears up as she talks of her fears for his development to regress if he is not soon able to return to the full-time services offered at Kafaat.

“We were very upset when we heard about the closure, because we didn’t want to go backward with Hicham, we didn’t want his situation to decline,” she says.

Mariam hopes that her son will eventually become independent, but says that without support from a facility such as Kafaat, this will be impossible.

The impact of the center’s closure on the family has been immediate. Mariam is now forced to rely on relatives or neighbors to look after Hicham when she has to leave the house for errands. But because Hicham will only eat when he is at the center or with Mariam, he has started to miss meals.

Any continuation of the crisis will also mean a significant financial burden on Hicham’s family, as they will be forced to pay for physiotherapy sessions Hicham requires, from a budget already saddled with paying for expensive medication.

“There’s going to be extreme pressure if I have to pay for all the therapy,” she says. “Even if it means cutting down on mine and my husband’s food to pay for it, I will do it.”

The family receives no other state support other than that provided by the Kafaat center, and Mariam says she feels let down by what she sees as the government’s failure to care for disabled children and their families.

“I’m not asking them to give me money, but at least don’t cut off money from these institutions that are educating the most vulnerable groups,” she says.

With the government in facing an impasse over legalizing past overspending, it’s difficult to see how or when the crisis in the disabled care sector will be resolved.

Social Affairs Minister Wael Abou Faour has promised to make the issue a top priority once the Cabinet’s funding issue is resolved, but Shwayri isn’t confident that he will be able to secure the support he needs within the government, or that the newly released finances will be enough to cover all the costs of the sector.

“The minister believes that this is a rightful cause,” he says. “But what can he do?”

Kafaat and the other NGOs are now focusing on garnering public and political support through protests and sit-ins around the country, with a major rally to take place Tuesday in front of the Ministry of Social Affairs.

“The idea basically is for government to wake up, to assume responsibility. We don’t want pity. We want implementation of resolutions that have already been taken by the government,” Shwayri says.

 
A version of this article appeared in the print edition of The Daily Star on May 11, 2012, on page 4.

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