A Special Familiy: A Nicaraguan Beginning

Many organizations in many countries work with individuals with special needs, however I have yet to come in contact with an organization that fulfills this goal from a community perspective more so than Familias Especiales [Special Families] in Matagalpa, Nicaragua. With practicality, comprehensiveness, and above all the community's needs informing its approach, the organization, over the past 2 decades, has learned that the driving force behind the services they provide has to be a dedicated commitment to listening.

Accessible playground equipment at Familias Especiales

From the beginning, listening to the families with individuals with special needs became an integral tool in responding to the factors influencing these families. In having an open conversation with these families in the the Matagalpa community, the organization began to discover that the families were being affected by factors that medical-oriented therapy could not solve. Factors such as, stigma for people with disabilities, lack of accessibility to public places, caregiver burden on already poor families...etc. These are what occupational justice theory names structural factors as well as the interaction between contextual and structural factors.

In the therapy room

Structural factors are the large cultural, economic, social, and political systems that create the structure on which a society is built. Contextual factors are the characteristics of an individual or population that must be viewed through the lens of the structural factor. For example, gender norms (socially expected behavior for gender identities) are a social system to which a majority of a population subscribes, thus a structural factor. Therefore, gender identity (a contextual factor determined by the individual) must be viewed through the contemporary lens of the relevant and contextual gender norms. More clearly, being female in the United States and being female in Nicaragua are two very different experiences even though the gender is the same because the gender norms of each country differ. The structural factors differ therefore the experience and effects of the contextual factor differ.

Accessible playground equipment

In the same way, disability or special needs, a contextual factor, affects individuals and families differently based on structural factors.  These factors could include: stigma or negative views of people with disabilities and their families, medical, therapeutic, economic, and nutritional resources available to individuals and families with special needs, opportunities for social integration and participation for those individuals and families, or strains on the family due to special needs. Understanding the interplay between structural and contextual factors is a complicated and intricate process but it allows a more holistic and comprehensive approach to overcoming obstacles that face an individual, community, or population.

All programs of Familias Especiales

Familias Especiales  demonstrates not only an understanding of this concept but also a dedication to improving structural factors affecting the families with which they work. For that reason, Familias Especiales takes the sunflower as its logo, a flower with many petals nourishing one plant. Familias Especiales has over 20 programs that seek to nourish one community from a variety of angles. Yes, this organization focuses on families of people with special needs but in working to support this portion of the population they have found ways to support the entire city of Matagalpa, including the special families.

For example the first big project the organization undertook was to build an accessible park in Matagalpa that both children with special needs and typical children could enjoy. This serves multiple purposes, however the two primary are firstly to provide a park for children with special needs and secondly to create a space for children and families of all types to come together, play, and interact as a community. This not only provides the occupation of play for many children, but it also uses occupation to facilitate a structural and social change in the community. Increased interaction with people with special needs will increase acceptance and integration in the community as a whole.

Playground

Today, Familias Especiales provides programs from horse therapy for children with special needs to a yogurt factory in which the mothers of youth with special needs work and earn a living while also providing a healthy nutritional alternative to the greater community. The organization provides psychological, psychiatric, and medical support as well as therapy on site and within homes. They are currently working to create an "integrated therapy" that will teach mothers therapeutic techniques to use when a therapist is unavailable. Social workers also organize mother leaders in various zones throughout the community to spearhead community organizing and communication. Familias Especiales provides employment to young people with special needs by running a recycling operation, special art programs, piñata making, gardening, a small eatery, and a variety of other jobs within the organization. They also have a wheelchair workshop that assembles, repairs, and performs maintenance on over one thousand wheelchairs per year that are then donated to the community. They have a variety of other programs that I did not get a chance to see in action. One needs to spend at least a couple of weeks or more with this organization to fully understand all of its many programs and how comprehensively it approaches family and community-oriented intervention.

Wheelchair Workshop

The passionate administration, social workers, therapists, workers, and families of Familias Especiales truly exemplify an effective model for integrated community-oriented therapy and social change, using play, work, social engagement, and countless other occupations to provide therapeutic change to youth with special needs and structural change to the community surrounding them and their families.

Recycling Operation

Although this organization is utilizing occupation to achieve its goals, it has severe difficulty finding occupational or physical therapists willing to work long term with them as well as understand their community-oriented approach. This obstacle limits the progress and success of the organization.

Piñata Making

Nevertheless, the persevering staff and families continue working to improve Matagalpa and the lives of all the people within it, especially
those with special needs. They support from all angles, attempting to recognize and work with all the factors affecting the special families. Their holistic and comprehensive practice of integrated community therapy has been an unprecedented model in my experience as an occupational therapy student. I hope to see more organizations like this one begin to emerge within the formal and domestic structures of all countries because the model and practice used by Familias Especiales  is both inspiring and effective.