In El Salvador, the complexity of treatment required for children and adults living with multiple disabilities causes those living with multiple disabilities to be excluded from public schools, the workplace and other public sites. To make matters more difficult, El Salvador does not provide disability benefits to the families caring for children with disabilities, which stresses families emotionally, financially and medically.
FUSSDIM, the first Multiple Disability Rights Foundation in El Salvador, tells that when families learn that their child has one or multiple disabilities there is a period of deep loss.
“This is very difficult for our families. Following the diagnosis, there is a period of mourning, a deep pain because their child is not the child they were expecting,” states Xiomara de Hernández, Founder of The Salvadoran Foundation for Deaf-blindness and Multiple Disability (FUSSDIM). “Very frequently, there is a family disintegration. Sometimes, fathers cannot cope and abandon their families,” adds the founder.
FUSSDIM was founded to address the gap in rehabilitation and access services for children with multiple disabilities and their families. Many of their clients live in single-parent homes. Some of their clients have multiple children with disabilities and it is extremely challenging for single parents to care for their children, work, take them to multiple doctors’ appointments and travel hours to the capital to seek specialized treatment.
FUSSDIM wants to make it easier for children with multiple disabilities to access services by developing rehabilitative services across municipalities, and by supporting the parents with emotional, group and technical support.
“It is extremely important to support the parents, since children with multiple disabilities often experience other health-related challenges, like seizures, organ failure, digestive track problems, and heart problems, which are extremely difficult to cope with for the family members,” states Hernández.
This year, FUSSDIM is launching an ambitious project, a nationwide census to identify how many Salvadorans live with multiple disabilities and where they reside. The findings will lead to the design of community-based educational care for people who are deaf-blind or have multiple disabilities, so they don’t have to travel to the capital of El Salvador.
FUSSDIM has been carrying out their innovative work with the support of evangelical churches that have provided them with a physical space to develop their activities. This year, they hope to move into a space of their own.
The Salvadoran Foundation for Deaf-blindness and Multiple Disability (FUSSDIM) was founded by Xiomara de Hernández, a Salvadoran citizen committed to promoting the human rights of a vulnerable sector of Salvadoran society–children and adults living with multiple disabilities including blindness, low-vision, and hearing-loss in combination with other disabilities associated with Down’s Syndrome, autism, and cerebral palsy.
Before FUSSDIM came along, the services offered to those living with multiple disabilities focused only on rehabilitation without an educational institution that knew how to work with this population’s various needs, how to advocate for their rights, or how to support the caretakers in their lives.
Rehabilitation and education are especially important in the lives of children with deafblindness. These trainings allow them to develop independence and autonomy so they can enjoy a life of dignity.
Part of FUSSDIM’s advocacy work involves visiting companies, government offices and schools and demonstrating, through hands on activities, what it is like to live without sight or hearing, or both and encouraging employers to consider hiring workers with disabilities.
They hope to gain strength as an institution and have sustainable impact over time by working out of their own building, continuing specialized training, and setting a precedent at the national level as a committed organization working to lower the exclusion rates in the country for this sector of the population.
FUSSDIM is also campaigning to promote architectural restructuring of the city and changes to public transportation to make it accessible to people with disabilities.
They are also interested in making tourism accessible for people with multiple disabilities.
“It is difficult to use a wheelchair to access some of our beautiful beaches, visit a tourist center, or go to an ecological park. Public places, sidewalks, and public transportation have been designed for people who do not have multiple disabilities. With some coordinated effort among municipalities, we can achieve a more inclusive and accessible El Salvador,” Xiomara de Hernández.
According to FUSSDIM’s research, approximately 4.1%, (235,302 Salvadorans) are affected by multiple disabilities. FUSSDIM seeks to promote social inclusion and reintegration of people with disabilities in Salvadoran society, especially for people with Deafblindness and Multiple Disability.
They are also seeking to change mindsets and views of Salvadoran society toward people with disabilities.
- Develop a network to identify, raise awareness and provide support to the parents of students with multiple disabilities.
- Obtain their own building and learning technologies to be able to function independently from the Intercontinental Christian Fraternity Church from where FUSSDIM is currently operating.
- Strengthen connection with strategic partners.
- Improve the organizational structure of FUSSDIM.
- In partnership with DIGESTIC, conduct a nation-wide census to identify the number of people living with multiple disabilities, nationwide, starting with Anamoros. Design rehabilitative and integrative programs to address needs.
Activity 1.1: Workshop “School for parents” with the active inclusion of the parents of the target population making them part of the institution.
Activity 1.1.2 Specialized talks with experts in the area of Deafblindness and Multiple Disability in physical and psychological aspects.
Activity 1.1.3 Course on contact networks that promote cross-institutional partnerships.
Activity 1.1.4 Sign language course.
Activity 2.1: Acquisition of a suitable property that contributes to the institutional strengthening to achieve independence from the Christian church “Conquistadores.”
Activity 2.1.2: Acquisition of typological, auditory and computer equipment, which are key resources for performing functions within the classroom with the target population.
Activity 2.3: Training for professionals on the use of typological and auditory material.
Activity 3.1: Establishment of new agreements with Government Institutions, Private Sector, Educational Institutions and National and International NGOs.
Activity 3.2: Strengthening agreements with current allies.