WATANI International
28 February 2010
In view of the growing concerns about those with special needs, City Centre for Training and Studies in Disability affiliated to Caritas Egypt held the fourth festival for those with special needs including patients with physical impairment and cerebral palsy. The festival was held under the slogan “I have the right to deal, walk and move easily in my homeland” and provided entertainment programmes, theatrical performances by kindergarten students, competitions, and games.
The event took place in Alexandria’s beautiful Antoniadis Gardens under the auspices of Adel Labib, governor of Alexandria.
Community-based
Besides the aim of entertainment, the festival sought to make Egyptians in general and Alexandrians in particular aware of the suffering of those with cerebral palsy—which accounts for 20 per cent of total disabilities. This group needs substantial assistance and support including wheelchairs with special designs. Yet, centres providing affordable physiotherapy to this group are scarce. In case of Alexandria, there are some four centres providing physiotherapy at a reasonable cost, but all are situated on the outskirts of the city, which makes them very difficult to reach especially for disabled persons and their families. Apart from that, there are centres and clinics that provide the service at much higher prices.
Caritas Egypt has spared no effort to draw attention to the difficulties faced by sufferers. It has established community-based rehabilitation (CBR) projects to help them. These projects work through a protocol of cooperation between City Centre and the Alexandria health department. Up to the present, Caritas has been able to start up 10 projects in some of Alexandria’s most impoverished neighbourhoods.
Two other projects were established via cooperation with Plan International in Zaheriya and Mandara. They serve 4,186 people with physical and mental disabilities as well as those with cerebral palsy.
Mervat Maher, the coordinator of one of the CBR projects, told Watani that the festival sought to draw the community’s attention to the suffering of this group. A host of seminars, she added, has been organised by City Centre to clarify the reasons for such disabilities and ways of prevention.
Wide audience
“This year’s festival was attended by some 500 patients with cerebral palsy from across Alexandria”, Dr Maher said. Also attending were members of the Muslim and Christian clergy, Italian, German and Swedish nationals, and businessmen who offered gifts and meals. Participants were divided into three categories: cases discovered early on, usually before the patient was five years old; cerebral palsy patients who use assistive devices; and cases unable to move at all.
Hind Zaki Youssef, whose eight-year-old son Ahmed Sameh suffers from cerebral palsy, said her son also suffered from liver problems. “Treatment prices are extremely high. We need proper health insurance. For now we have to be content with group therapy sessions held by City Centre,” she added.
Samia Abdel-Gawwad said that her daughter Yasmine, aged five, had contracted cerebral palsy because of decreased oxygen during a difficult birth. Yasmine is also incontinent of urine. “I used to take her to Shatbi Hospital as it provides physiotherapy at an affordable price,” Ms Abdel-Gawwad said. “But the employees and nurses there treated the children harshly and they were changed only once in a while. So I left there to go to a private centre that costs EGP300 a month, which is way too expensive for me. I had to do with a session once a week, costing me EGP150 a month.”
“We live in hell”
Magda Amin’s son, Ahmed, aged four, needs three physiotherapy sessions a week. Each session at Shatbi Hospital costs EGP25. But even this price—normally considered reasonable—was unaffordable for Ahmed’s family. “I had to take him to another clinic costing EGP2 a session. But the standard of the service is so bad and my son hasn’t made any progress.”
For her part, Salwa Mohamed Gaber, the mother of Riham, aged eight, voiced a common demand by calling for social and health insurance to cover this group. Amal Orabi, whose daughter Nagwa is another cerebral palsy sufferer, complained that the physiotherapy provided is based on very old methods. “It is inefficient and the available centres do not work on developing patients’ mental capabilities. The State has to shoulder its responsibility in protecting this group,” she said.
Indeed, for children with cerebral palsy, the future looks bleak. Hekmat Mohamed’s daughter, now 38, has suffered from cerebral palsy since birth. “For 38 years we have lived in hell,” Ms Mohamed says. “She moves and walks without a wheelchair. But we don’t have any kind of health or social insurance. I approached the Ministry of Social Solidarity, but they offered me no help. I don’t know who will take care of my daughter if I die.”
It should be said that Egypt has tens of thousands of cases of cerebral palsy. Most of these do not have access to effective medical and psychological treatment given the absence of a State role in protecting this group. So what should be done?