FUSSDIM – Multiple Disability Rights Foundation of El Salvador

At Latina Republic we have a dual mission of empowering the Latinx community internationally and domestically. With your help we are hoping to foster support for our partner disability rights international program, FUSSDIM––the first Multiple Disability Rights Foundation in El Salvador which was founded in 2014. In March of 2020, we entered into an alliance with FUSSDIM in order to write grant proposals on their behalf and connect with funders that can help this incredible organization to accomplish its mission. FUSSDIM supports parents and families who are affected by Deaf-blindness and Multiple Disabilities in El Salvador. 

Unfortunately, the situation for people living with Deaf-blindness and Multiple Disabilities in El Salvador is extraordinarily difficult as they are often excluded from public schools, the workplace and other public sites. Moreover, families and caregivers of peoples with disabilities are not provided benefits which puts incredible emotional, financial and medical stress on these families. 

FUSSDIM’s founder, Xiomara de Hernández, wants to make it easier for children with disabilities to access services by developing rehabilitative services across municipalities and supporting their families with emotional, group and technical support. Prior to FUSSDIM, children with disabilities had no service which offered educational opportunities nor advocacy for their specific needs and the caretakers in their lives. FUSSDIM has provided educational and community support programs so that individuals and families can enjoy the dignity they deserve.

Funding will be applied toward the development of FUSSDIM’s educational programming which is critical to teaching their families to develop independent living skills, like  activities for daily living, psychomotricity and even cooking lessons for the parents to use with the children. FUSSDIM is also expanding its educational services to the general public to raise awareness for how to interact with those with disabilities and deaf-blindness, testimonials from families involved with FUSSDIM and information to better get to know the work of the foundation

Teachers from FUSSDIM attest to the wonderful and life-changing work taking place within the organization with everything from equipping students with the ability to “express themselves freely and provide opportunities for socialization, acquire work opportunities for students and empower them to develop bonds of trust with people outside their immediate family via cohabiting with people with their same disabilities and with people with different ones or without disabilities.” 

FUSSDIM’s students are placed in 4 levels, ranging from child through adulthood with the highest level being pre-employment adaptation. The instructors form a multidisciplinary team including curriculum experts in charge of adapting educational materials in partnership with the ministry of education; an occupational and physical therapist, a special education teacher and a director of the program who leads the teacher training. 

In addition to curricular development tailored to each student, FUSSDIM uses virtual training to offer alternative modes of communication, instruct in mobility therapies, emphasize cognitive development, promote socialization, recreation and adaptability to change with a focus on independent living for students living with deaf-blindess and other multiple disabilities. 

Description of the Community Project: FUSSDIM-Multiple Disability Rights Foundation. 

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. 

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. 

FUSSDIM is also hoping to launch 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. 

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 occupy an important place in children with deaf-blindness allowing 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 set a precedent at the national level to lower the exclusion rates in the country for this sector of the population. FUSSDIM is campaigning to promote architectural restructuring of the city and changes to public transportation to make it accessible to people with disabilities. They are promoting campaigns to make 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 Deaf-blindness and Multiple Disability. They are also seeking to change mindsets and views of Salvadoran society toward people with disabilities. We deeply appreciate your support. This is a wonderful organization with an incredibly talented, committed leadership. The families they serve thank you, too.