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Colección: La Educación
Número: (129-131) I,III
Año: 1998

Introduction

Interest in research about families has been increasing in the last decade. Several investigations have explored this interest through a recognition of the family as the context and environment of children with special needs, as well as the influence that the family has on the child’s developmental progress. In addition, the understanding that families themselves have special needs has provided enough argument for increasing research in this field (Halpern 1994). As the major force in a child’s development, the family is a potentially powerful resource for positive change in the child’s life (Pfeifer, et al. 1985). Parents must be active participants in determining the kind and extent of help they need. When working with families of children with special needs, there are several issues that should be explored, such as the variables that are relevant to family functioning; family needs for support, information, and training; family member interactions; parental perspectives and expectations related to the child; and critical events in the family’s current life cycle (Winton 1986). The effectiveness of early identification, screening, and early prevention programs are largely explored in the literature as having positive effects and benefits on the developmental outcomes of children with special needs (Shonkoff and Hauser-Cram 1987; Simeonsson 1991).

Despite the enormous progress in this area, the majority of studies were performed in developed countries. The paucity of data in developing countries regarding families dealing with a disability in their child makes this situation a virtually unknown and technically neglected issue. The lack of reliable data concerning the needs of families and their adaptation to a disability in a family member in Brazil is representative of a larger problem in other Latin American countries. A study done by the World Health Organization (WHO) in 1976 showed that rehabilitation services in developing countries were nonexistent or very inadequate. The same study concluded that rehabilitation services were scarce in most countries due to a lack of adequate coordination and planning, and poor coverage, when available. Also, financial and professional resources are scarce, and the access to health and special educational services are insufficient relative to the demand. A review of literature in Latin American publications has shown the lack of reliable data regarding children with disabilities, particularly about families in developing countries (PAHO 1991).

Despite the evolutionary process of integration and normalization that was initiated in the late 1960s, developing countries seemed unprepared to adopt rehabilitative measures. According to Thorburn and Marfo (1990), the major difficulties and barriers that children with disabilities and their families have to face are not only technological but also societal, including attitudes about rights; misconceptions about causes and the problem itself; the potential of disabled people; and the availability of services. In addition, the implementation and planning of services in developing countries is a challenge because i) there are no clear responsibilities by any agency or department, ii) there are no clear goals and objectives in providing services, and iii) there is a lack of an epidemiology of needs (Sell 1984; Simeonsson 1991).

The establishment of collaborative goal setting with families as a strategy for implementing an adequate intervention plan for both families and children with special needs is imperative (Bailey 1987). Any type of intervention should address the family’s own priorities and definition of needs. There is a need for research in the field that contributes to an understanding of the dimensions of cultural diversity. The field has moved from a medical model to an ecological perspective that sees children as interacting, changing, and influencing environmental forces, including their own families (Halpern 1994). This understanding is crucial to establish a precise family profile and identify specific needs. According to Chan (1990), these efforts are essential to ensure an appropriate service delivery system, orient professional training, and build adequate instruments and screenings for the identified population.