The cornerstones of the project are:
I. Fellowship training
II. Education (Medical, Public health, Scholastic)
III. Best Practices (For service, education and training)
IV. Integration of people with visual impairment (into regular schools and society in general)
All 4 aspects are intertwined in all 7 components of the project.
The 7 COMPONENTS
Finding people with eye diseases and/or visual impairments is not as easy as it may seem, especially children!
In a country like Egypt, having a “disability” comes with a stigma of shame and isolation.
So the first step was to mobilize social, civic and religious organizations, and get volunteers and paid helpers trained to reach out to the rest of the population with a message of hope for light in the midst of darkness.
Detecting and identifying those with visual impairment (or even at risk) and bringing them to
screening became the first fruit of this grass root effort.
1,000,000 people in Assiut have been reached with this message so far and 300 children and
many adults were identified so far. And this is just the beginning.
As an all-rounded public health project, we combined an element of “education” and “prevention” into the “detection” efforts as our trained “ambassadors” were infiltrating the neighborhoods and villages in the target area.
General prevention measures as well as case specific ones were shared (more specific prevention was also targeted after screening).
All 300 children (as well as the adults) who were identified with suspected or known visual
impairments were screened by visiting experts who were also training the local health care providers on how to do the screening themselves. This is an ongoing and progressively growing phase of the project.
60 children and 100 adults have been identified as having active eye disorders and were referred for medical and/or surgical intervention. The intervention was done by visiting experts who simultaneously trained local eye doctors on how to perform the same procedures in the future.
This too is an ongoing and progressively growing part of the project (see below: Treatment)
Medical and surgical intervention for those identified with active eye disorders has given sight and hope to many adults and children. However, as great as this service has been, if it were not coupled with training, it would have no sustained value for generations of other patients in the future.
We have developed a very efficient way of combining treatment services with training and social and public health mobilization.
One of our graduates (an excellent ophthalmologist) travels to the rural areas to screen the patients and schedule them for medical and surgical interventions. Community volunteers then chaperon the patients and accompany them to Cairo in a bus (provided by the project). Even the meals are taken care of! Once the bus arrives at one of the participating (partner) hospitals, the staff of the hospital, the volunteers and the visiting as well as the national ophthalmologists on our team, triage the patients and start procedures. The visiting professors perform, then assist, in surgeries, laser and diagnostic testing as the national doctors are trained efficiently but without compromising the excellent quality of healthcare provided.
By the end of the day, the patients load up on the buses, assisted by their community volunteers and head home where our local partners take care of their post-op needs. The next day a new group does the same thing. ALL FOR FREE, including implants and glaucoma valves.
Rehabilitation services have progressively become more recognized and more celebrated as a very valuable component of healthcare and education. Yet a lot remains deficient, especially in
Our project has focused on visual rehabilitation as a prototype of what a difference this great service can make in the lives of people with impairments and turn them from “disabled” to “enabled!”
NO CHILD LEFT BLIND
Nabil M. Jabbour
What is worse than failing to prevent blindness in children? Ignoring it when it does happen!
That’s precisely what is happening in many parts of the world…
While persons with disabilities (in developed countries) are no longer referred to as “disabled” because of all the medical, social, educational and rehab developments of the past 30 years, the situation is very different in underdeveloped and most developing countries. Persons with disabilities in those countries ARE DISABLED, but not by their disability. They remain disabled because of neglect, lack of care, poor resources and in many cases, the culture of shame wrongly and tragically associated with disabilities.
This tragic situation was brought to our attention five years ago when our lives were changed forever after meeting a blind child named Febi. Since then, she, her parents, and her country (Egypt) have become an indivisible part of our lives (please visit febiproject.com for details).
Except for a very limited number of well-trained doctors, the majority of ophthalmologists in Egypt lack the most basic training and management skills (both diagnostic and therapeutic). Many ophthalmology residents don’t see (let alone use) a slit lamp or an indirect ophthalmascope until they sit for their oral board at the end of their training! Therefore, it is easy to see why children with potential eye problems are harmed three times under this broken system.
First, many of them would not be suffering any visual impairment had they had the proper and timely prevention and/or treatment.
Second, those with end-stage eye problems are not getting any rehabilitation and/or visual aids to cope with their impairment.
Third, the few children with visual impairment who are not hidden from society are committed to the “school for the blind” with no integration.
In the face of these unfortunate discoveries, God blessed us with many dedicated partners who were willing to help change that situation. Most notably, a three way partnership between the ForSight Foundation, Misr El-Kheir and Harpour Memorial Hospitals. His Eminence, Dr. Ali Goma and the most reverend Dr. Mouneer Anis have played a pivotal role in developing this prokect. We have also had a great deal of cooperative effort and support from Dr. Akef Maghrabi and his Al-Noor Foundation, especially Dr. Gamal Izz El Arab. In addition to several other private, academic and government hospitals and teaching institutions. Febi’s mom, Dr. Sally Farouk (a cardiologist) and Dr. Nina Jabbour (a clinical pathologist) went back to school for 2 ½ years and received master’s degrees in special education for children with visual impairment. The motivation was not another degree to add to their M.D.s or even to just take care of our Febi, but rather to be able to take care of all the “Febis” in Egypt. We estimate that there are over half a million children with visual impairment in Egypt, many of them neglected and in hiding. Sally and Nina want to make sure that they don’t remain neglected and outcast. How can the two of them do it alone? They can’t! But the newly formed Egyptian non-profit organization Integration: Enabling the “Disabled” is hoping to change that. In partnership with our ForSight Foundation, this organization is launching the “No Child Left Blind” initiative which started in Assiut and aims to bring Egyptian children with visual impairment and other disabilities “out of hiding” for screening, evaluation, treatment, rehabilitation and special education with the explicit purpose of integrating them into regular schools and society. The organization works to increase awareness and encourage cooperation between NGOs as well as governmental organizations and the general population. It was chartered under Egyptian law in 2012 and represents a coalition of representatives from several other organizations working with children with visual impairment and other disabilities, including “True Light,” “Gamyyat Al said” and “Rouyat hayat.” The organization has also cooperated with the Al-Nour foundation and “Misr-El-Khair.”
The organization, under the leadership of Dr. Sally, hopes to accomplish these ambitious goals by successfully completing a pilot project for children with visual impairment in Assiut (upper Egypt), then share the experience with the Egyptian government (Ministry of Education and Ministry of Health) to generalize the approach to other governorates, involving the whole
country. The hope is also to inspire, encourage and facilitate copycat experiences with other disabilities. So far, over 1,000,000 citizens and 500 families with children suspected of having visual impairment have been reached. 220 children with visual impairment have been screened. 40 children were treated for reversible disorders. 20 children were referred to partners in Cairo where 12 of them had surgery (glaucoma and/or squint). 18 children out of the target 40 are currently enrolled in our special education program (see details below).
By focusing on one country (Egypt) and targeting one impairment (visual), the NO CHILD LEFT BLIND initiative hopes to create a model for preventing and managing blindness and visual impairment in Egypt – a model that can be later emulated elsewhere in the world.
Our model involves the following components:
Ophthalmology Screening, Referral, Management & Training
Special Education, Rehabilitation & Training
Coordination with all caregivers
Integration with sighted peers, especially in schools
This ambitious program started as a 5-year pilot project in seven phases, in Assiut:
Phase l: Forming the coalition and registering it in Egypt as a non-profit NGO. (This was accomplished ahead of schedule in May 2012): “Gamyyat al Damg.”
Phase 2: Initial screening of children with visual impairment in the greater Assiut area to recruit up to 40 children, ages 4-12, to be included in the program. All children (ages 4-12) with visual impairment (perceived, suspected or actual) were screened. Using media, churches, mosques, civic organizations, etc… All were encouraged to come for screening which was planned in 3 stages.
- Preliminary screening, using two local ophthalmologists, one special education teacher
and one social worker: This sorted through the “perceived” and “suspected” and
produced a database (90% complete) of all children with visual impairment in Assiut.
- The above list was used to bring these children for detailed evaluation by visiting
professors and experts in ophthalmology, rehabilitation and special education. This
resulted in three categories of children:
1. Those with reversible, easily treatable disorders who were provided proper
care (and planned follow ups) but required no special education or rehab.
2. A group of children with active eye disease who were referred to our partner
organizations for surgical and medical care after which they will be evaluated
to see if they fit in category 1 (above) or category 3 (below).
3. 28 children were found with (end stage) visual impairment and nothing medical
to be offered. These were referred to our 4 year special education project for
integration and rehab.
- This screening and referral process will continue until all the affected children are
reached or 40 students are integrated (whichever happens first).
Prior to the NCLB initiative there were no eye professionals in Assiut trained to screen and evaluate children with visual impairment. As a result of the first 2 campaigns, 3 doctors are currently trained to provide this service in cooperation with and with additional training from visiting expert partners. This phase is an ongoing service and training program.
(This was accomplished ahead of schedule in April 2012.)
Phase 3: Renting property for training and administrative headquarters as well as special education. Retaining a dedicated facility is
a. Mandated by the Egyptian government
b. Needed for training and hosting special educators
c. Needed for training general educators
d. Needed for administrative purposes
Special furniture, devices, audio visual equipment and assistive technology are an integral part of equipping this space.
(This was accomplished ahead of schedule in September 2012.)
Phase 4: Training of teachers.
a. Training of general education teachers is imperative for integrating children with visual impairment into the regular classrooms.
Unless the general teachers learn how to integrate the children with visual impairment, the integration effort will be a failure because the special education teachers can only be partly involved in that regular classroom.
b. Training of special education teachers is necessary because they are not available in Assiut (and are barely available anywhere in Egypt). The project has to offer the whole training curriculum, courses and equipment.
(Started ahead of schedule in November 2012.)
Phase 5: Modifying existing kindergarten and elementary schools to become appropriately fitted for children with visual impairment. Modification of classrooms is an integral part of integration, allowing for a user friendly and safe environment. This also includes providing the students with, and training them in the use of, assistive technology.
(Started ahead of schedule in April 2013.)
Phase 6: Evaluations, adjustments and reporting to the public as well as to the government. Evaluation of progress, especially in a pilot project like this allows for adjustments and then provides objective results and outcomes (measurable) that can be shared with donors, the public and the government.
Phase 7: Generalizing the model to include other cities in other parts of Egypt (government
takeover). Sharing a successful and gratifying experience with the government and NGOs improves the chances to generalize this project to other parts of Egypt, other disabilities and other parts of the world.
Less maverick work will also be necessary as a lot of systems and assumptions would have been tested, tried and modified.
No matter what your gifts, abilities and profession are, you can help.
Please join us in any capacity you can…
Out of their darkness, the visually impaired children all around the world are stretching
out their hands to you…
A. Healthcare (see V above)
B. Education (see VI above)