Children with physical disabilities suffer extreme isolation and marginalization in Egyptian society, and represent a largely neglected social sector. Magda Sami is opening new doors for these children through a new, multi-service education center with a staff of trained teachers and therapists who will provide them with regular schooling accompanied by the individualized physical and emotional support they need. The program will not only help the children lead more independent lives and free families of the burden of their constant care, but it will also create a new class of professionals trained to work with disabled children in any setting.
La nuova idea
Magda Sami is filling a tremendous gap in services for Egypt’s physically disabled children by creating a system of “shadow therapists,” trained professionals who provide constant, one-on-one care and support as children learn skills and gain confidence to integrate into public life. Starting with a new education and rehabilitation center for children with multiple disabilities, Magda is providing a safe and fully supported learning environment while developing a new class of specially trained teachers and professional therapists who can be hired by parents or regular schools throughout the country to support disabled children in their daily lives. Access to this kind of assistance will ultimately enable these children to take advantage of mainstream services and take the responsibility for their education and specialized care out of the hands of their families.
The Red Crescent Society estimates that there are as many as six million disabled people in Egypt, the majority of which are under 14 years of age. Despite this growing population of disabled youth, Egypt is ill-equipped to deal with it, lacking the equipment, social services, education, and health care tailored to children with special needs, and leaving their care entirely in the hands of their families. This can be a tremendous burden on those who must not only provide constant attention, but also travel long distances, if not leave the country with their children, to find better care and social support. Some families even send their disabled children abroad alone, splitting up the family for the sake of the child’s welfare.
Children who do stay are extremely dependent and isolated from their peers, and lack access to even the most basic education. Only a fraction of disabled children in Egypt are actually enrolled in schools. Although there are more than 200 specialized government schools for the disabled nationwide, they provide for well under ten per cent of their educational needs, and some studies actually place the figure as low as two or three percent. Children with multiple disabilities but normal IQs ironically fare the worst, as specialized schools cater only to those with particular disabilities—the mentally disabled, blind, or deaf and mute—and regular schools lack the facilities and teacher expertise to handle them. Although they are bright and quite capable of learning, in Egypt, they remain totally dependent on their families and have few opportunities to go to school or otherwise lead a normal life.
There are some limited rehabilitation services available for children with physical disabilities, such as hydrotherapy, physical therapy, and speech therapy, but such services are rarely integrated and are financially out of reach for most families. Even basic technologies like wheelchairs, which can provide a significant degree of independence, are scarce and costly.
Magda Sami’s shadow therapist model will ultimately allow children with multiple disabilities to take advantage of many of the same educational and life opportunities as the non-disabled, while giving them access to comprehensive rehabilitative services.
The first step in creating what will essentially be a new profession was finding a good pool of candidates. For this, Magda turned to the Faculty of Physical Therapy. Graduates from this program have a solid background in many of the issues the physically disabled deal with, and have traditionally very high unemployment rates. Magda made arrangements with the dean of the faculty to select a starting class of 15 for an intensive, three-month training on the basics of occupational therapy, psychotherapy, speech therapy, and hydrotherapy. Trainees will also learn how to care for a child with multiple physical disabilities—how to teach them to eat, sit, take off their clothes, and perform basic life-skills—and how to deal with their families, teachers, and peers. Students will also receive theoretical training and on-the-job training administered by professionals at the Faculty, using a shadow therapist curriculum developed jointly by Magda and the Faculty.
Magda has also begun promoting a collaboration between the Faculty of Physical Therapy and the Teachers Training College to create a course for teachers on dealing with children with multiple disabilities at the primary level. In the long-term, she will work with the Ministry of Higher Education, the dean of the Physical Therapy School, and the dean of the Training College, to develop the course as a permanent part of the teachers’ curriculum.
The education and rehabilitation center will open with a class of fifteen disabled children, ages five to seven, to be selected in collaboration with the Integrated Care Society, and taught from the regular public school curriculum by graduates of the teacher training course. Each child will be assigned a shadow therapist to provide one-on-one support throughout the school day, and, depending on individual needs, go home with him or her. In addition to their formal education, the 15 children at Magda’s center will receive needed rehabilitation services, such as occupational, speech, and physical therapy. Magda has arranged for professionals from the Faculty of Medicine to volunteer once or twice a week to provide diagnoses and give individualized advice to parents and the center staff about the rehabilitation needs of each child. The collaboration will also promote awareness in the medical profession about need to coordinate care for children with multiple physical disabilities.
In parallel with the children’s schooling and care, the center will continue training more shadow therapists to ensure a continual flow for both the center and for families and other service providers to employ. Magda is marketing the shadow therapist services to civil society organizations, public and private schools, and international organizations. Once the model begins to take off, the shadow therapists themselves will help spread awareness on both the private and public levels.
The education and rehabilitation center will be funded by both student fees and outside contributions. Magda is designing a sliding scale system under which poorer children will pay less, while developing a diverse fundraising strategy to ensure long-term sustainability. For example, she is tapping into the Islamic tradition of philanthropy to support individual children, advertising on two Arab satellite channels, holding fundraising events during the holy month of Ramadan, and campaigning in schools. She will also raise funds from international and local donors, as well as from corporate sponsors to finance the training of shadow therapists and teachers, the rehabilitation services, and special-needs equipment like tailor-made chairs. She hopes to also involve the business community in manufacturing such specialized equipment for a profit.
Although it will initially serve a relatively small number of children, the center will stand a model for the use of shadow therapists in other arenas. Magda’s ultimate goal is to see public and private schools alike bring the system into existing classrooms and making room for disabled children to learn alongside their non-disabled peers. To lay the groundwork, Magda will begin training teachers at public primary and secondary schools on how to deal with children with multiple disabilities, and get secondary schools to accept the children that complete their primary education at her center. On the national level, Magda will also begin an advocacy campaign with the Ministry of Health, the Ministry of Education, and the National Council for Children and Motherhood (NCCM), for the creation of an education and rehabilitation system to support children with multiple physical disabilities in all areas.
Magda is in the process of establishing a formal organization to support her work and assist in fundraising and outreach. She has already developed a diverse board, including a doctor, marketing expert, development expert, management expert, and an experienced fundraiser—all of whom will act as ambassadors for her idea. She already has a location for her center and is in the process of refurbishment.
Although Magda’s son was born normal, the jaundice his doctor left untreated developed into a type of cerebral palsy that has been totally eradicated from the rest of the world. The child grew up to be extremely bright, but needed support in all his daily activities. Like so many other parents, Magda looked for schools for him in Egypt, but found none available for students with normal learning capacities but multiple physical disabilities. In order to give her child the chance to live with dignity, Magda made the tough decision to send him abroad to live with her brother in the United States, where his needs would be fully accommodated in the public school system.
This experience has underpinned all the work that Magda has done. Eight years ago, in collaboration with the Right to Live Association she began a model program to better integrate children with Down Syndrome into society. Choosing 10 of the most distinguished schools in Egypt, she arranged for a group of DS children to visit and interact with the non-disabled children. At the end of the school year, Magda organized a festival for all the children in which arts and crafts created by the DS children were displayed and sold. The festival was a great success and received significant media attention.
Magda also created a Hospitality Training Center for people with special needs, to prove that the disabled are capable of holding jobs and encourage the government to enforce a law requiring hotels to fulfill a quota of special-needs employees. Through this program, she has trained and certified 10 people in hospitality and English skills, and arranged for their placement at the Sheraton Hotel in Egypt. She is working on an advocacy campaign to encourage other hotels in Egypt to accept the people she trains as well, and marketing her idea throughout the Sheraton network.
It was while creating this program that she realized that the social incubator component of the hospitality training was far more important for the trainees than the actual hospitality training, since it gave the trainees practical communications skills they had lacked. In crafting her education and rehabilitation program, she aimed for a kind of social incubator for children with multiple disabilities, where they could gain the life skills and education to be able to communicate and integrate with other children and adults throughout their lives.
Magda is currently the director of the Public Relations Department at the Sheraton Hotel. She has been in the hospitality and tourism industry for nearly twenty years, and lives with her son.