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Children with disabilities: a struggle to cope

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A rural rehabilitation centre faces financial and social barriers in its struggle to provide care to disabled children

Courtesy of the Child's Dream Centre

Courtesy of the Child’s Dream Centre

“I wish that one day my son will walk,” said Om Mahmoud, mother of a disabled child.

In the village of Kafr Hakim some parents are unable to provide proper treatment and rehabilitation for their disabled children. A new initiative has reached out to offer support and care to the villagers but its staff were shocked to identify a growing number of disabilities among children in the area.

A centre was established in the village to take care of the disabled children, and empower the parents enduring financial, as well as emotional stress. Unfortunately, the centre has been facing several obstacles in providing its services to the children, which threatens the centre’s existence and the rehabilitation of the children.

Child’s Dream Centre for Disabled Children provides free-of-charge rehabilitation services to the children of Kafr Hakim and the surrounding area, through life-skills development, speech therapy, psychology and physiotherapy. Kamel Hamam, director of the centre, established Child’s Dream just outside Kafr Hakim in March 2011 in order to provide appropriate care and rehabilitation services for the impoverished disabled children in the area, around half of whom are orphans. When the initiative was first announced, the centre identified around eight disabled children in the village and provided transportation for them to the centre.

The staff quickly identified a growing number of cases in the area (at least 500 children), so the centre decided to relocate its services, bringing the centre to the village rather than transporting the children to the centre. Haj Mustafa Abu Al-Gheit Kelany donated the basement of his house, an area of 170 square metres. Unable to afford tiling the cement floor, the centre used second-hand carpet instead. They built wooden walls, dividing the basement’s space into rooms, and covered them with carpet to save on the cost of painting.

Initially the centre recruited four specialists in the skills development unit, later adding the speech therapy and psychology units. A neighbour donated the floor of a neighbouring building, to be used as a physiotherapy unit. The centre now has 22 rooms for rehabilitating disabled children, besides the physiotherapy unit.

Child’s Dream serves an area around the village of about 10 kilometres. Five hundred disabled children in a rural area is a troubling number particularly because rural areas are not as populated as urban areas.

The centre provides the children with equipment like wheelchairs, walking sticks, walking frames and orthopaedic shoes to enhance their rehabilitation. Children with multiple sclerosis and other spinal curvatures are provided with chest braces or straps for spinal correction.

Progress

There is controversy in the village around the chances of the disabled children’s rehabilitation. When Dr Mahmoud El-Rawy, a physiotherapist at the centre, was asked whether children with cerebral palsy could be rehabilitated he replied, “it is possible… but it needs time, nursing and care.” El-Rawy said many children’s conditions had improved since joining the centre and some children are now walking independently.

Mustafa, one of the disabled children with cerebral palsy, has diplegia due to a lack of oxygen reaching the part of his brain responsible for the lower half of his body, resulting in quasi-paralysis. When Mustafa first came to the centre, he could not take more than one step without falling. Now, Mustafa is capable of taking up to 10 steps on his own.

Om Jana, a mother of a disabled child, was just one of many parents at the centre who confirmed that their child’s condition had improved since they joined the centre’s rehabilitation programme.

Before joining the programme, parents were worried about their children’s condition, despite approaching health care facilities. Abu Islam used to take his son to Nasser Institute for treatment, but he was disappointed and worried because the officials there simply used to give his son medication rather than presenting him to a doctor. “Every time I told them that I needed to take my son to a doctor because his condition was getting worse, they just advised me to increase the medication instead,” said Abu Islam. However since Islam attended the centre, his father noticed a marked improvement in his condition.

Problems

There are serious problems associated with village life that contribute directly to the rate of disability in the area, and others which restrict parents’ ability to provide their children with the care they need.

Most of the mothers (who are usually the primary carers for the child) live below the poverty line and are registered at charity services which cover shelter, food and water needs so they cannot afford the cost of physiotherapy sessions at health care facilities which demand payment. For example, a physiotherapy session at the nearby children’s polio hospital costs EGP 15 and a speech therapy session costs EGP 10. Many families cannot afford the transportation costs from the village to the hospital, let alone these fees. Of most concern however, is when parents’ unforgiving financial situation means they cannot afford the cost of medication. The families do their best with what they have, but even a mother’s love cannot transform a stock cube dissolved in boiling water into a nourishing meal.

Courtesy of the Child's Dream Centre

Courtesy of the Child’s Dream Centre

Many parents view their poverty as a source of shame. In September, a disabled child died but his father did not announce it to the public in any of the village’s mosques and did not want people to participate in the funeral march. “He was embarrassed at being unable to afford his son’s medication, which would have calmed his seizures and improved his condition,” said Hamam.

There is an increase in the rate of disabled children in the area, with genetic disorders being one of the main causes of cerebral palsy. Specialists said other causes include pregnancy complications, malnutrition and pollution. More than half of the agricultural land that belongs to the village is irrigated with industrial sewage. In addition to the poverty and the poor hygiene of the village, healthcare is below acceptable standards.

“We suffer from a lot of doctors’ mistakes,” said Hamam, describing the village medical centre. He went on to relate a case in which a woman received test results without the centre having conducted any tests; the official simply predicted the results based on an epidemic in the area.

Stigma

The centre’s establishment sought to alleviate some of the worst conditions endured by the villagers. But beyond the obstacles imposed by poverty, there are social issues too, with some villagers displaying an inhumane attitude towards disabled children. Some mothers abandon their children and seek divorce when they realise their children’s condition.

While some parents bluntly abandon a disabled child, many others are genuinely concerned for their protection and care. The actions they follow reflect desperation rather than an inconsiderate act.

Many mothers in the village cover their disabled children with a blanket when their relatives or neighbours visit, in an attempt to protect their children’s dignity and safety. Hamam said the mothers prefer to act as though their disabled children “do not exist” rather than have them handled “like a toy” by other children.

Some mothers in the village tie up their children to protect them from harm. Hamam told me of a mother who left her house for a while without tying up her disabled son and when she came back she found him lying dead beside an electrical socket.

Charity

In order to take care of the area’s disabled children and support their parents, the centre needs financial support, but the villagers’ perception of charity is a major problem. Local people often prioritise giving donations to help other causes, rather than donating to help disabled children, because they believe that the children are unlikely to be treated successfully.

The attitude of local imams frustrates the centre, because they do not share their understating of charity. “We try to address the village’s imams because most of them cannot recognise charity as anything but building mosques,” said Hamam.

The village has 44 mosques and about 15 people want to build more. Hamam added, “there is not one mosque that gets full, even on Friday prayers.” For Hamam, the value of charity depends on how far the needs of the disadvantaged are met. He tells the imams that the village is in need of other services, ones that feed the hungry, support sick children and take care of the poor.

Child’s Dream sought out several village clerics to help raise awareness about the centre, but their proposed solution to the centre’s problems was to shut it down. “Ashraf Abd Al-Satar came here asking us to close down the centre,” Hamam said, “he asked us why we are taking care of [the children] when the government could do that instead.”

Most village clerics feel embarrassed when asking people for donations, because often they are refused. “So they tell us to close down the centre instead,” said Hamam.

Financial problems

Islam is helped by a centre worker during a physiotherapy session Adham Roshdy

Islam is helped by a centre worker during a physiotherapy session
Adham Roshdy

Child’s Dream faces drastic financial problems in striving to provide support for the growing number of disabled children in the area. Recently, the Kafr Hakim for Development and Charity Work Foundation ended a partnership with the centre. “They told us that children and disabilities are not considered under the foundation’s specialisation,” Hamam said. “They are not convinced that this is charity work.”

The foundation requested the centre start their own foundation, so Hamam established the Mo’sasat Safeenet Nooh le Aamal Al Bir (Noah’s Ark Foundation). The centre is currently funded by charitable people, mosques and churches but not yet by businesspeople.

Their monthly expenses range between EGP 30,000-40,000, which is not covered through funding. This includes the staff salaries as well as EGP 4,000 per month for renting a bus to transport staff members. “If we do not provide a bus for the specialists, no one could come to Kafr Hakim because the village is distant and hard to reach,” said Hamam.

Lack of financial support forms a huge obstacle in rehabilitating disabled children in the area. Of the 500 disabled children registered with the centre only 82 children receive services due to insufficient funds. People on the “waiting list” have recognised the positive progress in the children engaged with the rehabilitation and have started asking “why aren’t you helping us?”

Even those receiving care at the centre are not treated as well as they ought to be. Mustafa only receives physiotherapy because the centre is unable to provide him with a complete rehabilitation programme. “The centre’s space is not enough to cover the number of cases registered with us,” said El-Rawy. Financial problems also affect the availability of life aids and equipment for the children.

Despite the financial issues encountered by the centre, the staff and many villagers agree that the centre must continue to provide care. Money problems have meant delaying the salaries of the specialists, but they still put helping the children first. In order to keep Child’s Dream going, the director and others at the centre are in debt.

“Sometimes people donate second-hand appliances, like computers or water heaters, which is very helpful because the children benefit from them,” said El-Refaay. However, donated goods cannot pay the bills.

Child’s Dream has appealed to the Ministry of Social Affairs for help, which offers EGP 50 per month to each disabled child. “What could EGP 50 do for a disabled child?” asked Hamam, pointing out that the money is not a donation to the centre but it is given directly to the child’s family after a lengthy bureaucratic process. “[The Ministry of Social Affairs] does not have a clause that endorses centres like ours,” said Hamam.

The centre has sought help from the Ministry of Health too, requesting the ministry cover the salaries of the specialists, but the ministry told them that they lack the capacity to do so. “We’ve contacted some private foundations but they told us that they do not offer help to centres who have been established for less than two years,” said Hamam.

Child’s Dream Centre logo, the caption on the bottom reads "Together .. to achieve the dream" Courtesy of the Child’s Dream Centre

Child’s Dream Centre logo, the caption on the bottom reads “Together .. to achieve the dream”
Courtesy of the Child’s Dream Centre

A group of young people from the village, with a low monthly income, contribute to the centre by donating EGP 10 to EGP 15 a month. In July they met with Hamam and asked him “why don’t we seek out animal welfare organisations for help?” Due to a severe lack of funds, the director of the centre agreed to their suggestion and he has been calling out for help from organisations that show mercy on animals, in order to help disabled children.

Though Child’s Dream wishes to expand their services to reach out to all the disabled children across the country, the centre struggles to provide help for those registered in the area. Building a larger facility that could help all those in need, through a set of integrated services, is only one of the goals the centre aims for. The centre is calling out for financial support that could secure its existence and the continued care for disabled children in the villages.Mo’asaset Safeenet Nooh le ‘Aamal El-Ber (Noah’s Ship for Acts of Kinds Foundation)

Markaz Helm Tefl (Child’s Dream Centre)
Account Number: 110186
Faisal Islamic Bank, Giza Branch


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