Family Caregiving of Adults with Mental Retardation: Key Issues for Rehabilitation Counselors
Lustig, Daniel C., The Journal of Rehabilitation
Rehabilitation professionals agree that families can be the "most powerful and enduring (Krause & Seltzer, 1994, p. 217) influence in the lives of persons with mental retardation (Cook & Ferritor, 1985; Kelley & Lambert, 1992; Power & Dell Orto, 1986; Sutton, 1985). Historical events and demographic changes have brought about an increased need for families to be actively involved in assisting adults with mental retardation as they secure employment, make informed choices, and achieve independence. An understanding of family processes associated with family caregiving can increase the effectiveness of rehabilitation professionals working with adults with mental retardation.
The family processes associated with caregiving can be analyzed within the context of the Resiliency Model of Family Stress, Adjustment, and Adaptation (McCubbin, Thompson & McCubbin, 1996). The Resiliency Model of Family Stress, Adjustment and Adaptation, based on earlier family stress theorists (Angell, 1936; Hill, 1949, 1958), seeks to answer this question: "What makes some families fall apart or deteriorate in the face of crises demanding changes, while other families negotiate these troubled times with relative ease by finding new patterns, and restoring and modifying old patterns of functioning?" (McCubbin et al., 1996, p. xxv). The focus of the Resiliency Model is on understanding those family strengths and capabilities which buffer the family from the disruptions associated stressors. Analysis within the Resiliency Model provides the rehabilitation counselor with a deeper understanding of the process of adjustment for the family and provides a framework for consideration of intervention based on the analysis.
The Resiliency Model has been tested with families in the general population (Lavee, McCubbin & Olson, 1987; Lavee, McCubbin, & Patterson, 1985; McCubbin, Thompson, Pirner & McCubbin, 1988), (b) families with a member with a disability (Kazak, Reber, & Snitzer, 1988; Kosciulek & Lustig, 1998; McCubbin & Huang, 1989; McShane, 1987; Patterson, McCubbin, & Warwick, 1990), and (c) families with an adult member with mental retardation (Lustig, 1997; Lustig & Akey, in press).
The Resiliency Model, a stress and coping framework based on a family systems approach, provides a theoretical basis for understanding a family's adjustment to demands placed upon the family (McCubbin et al., 1996). A stressor is defined as a demand placed upon the family that produces or has the potential to produce changes in the family system. These changes (e.g. closure of a day program, movement to a residential facility) can affect all members of the family, as well as how the family functions and the family's goals. The severity of the stressor is determined by the extent to which the stressor disrupts the family or places excessive demands on the family.
Family stress is the result of an imbalance between the demands placed on the family and capabilities of the family to deal with the stressor. When the demand-capability imbalance is pronounced the family may experience maladjustment. The ability of the family to successfully adjust to a stressor is determined by the family's vulnerability, resources, appraisal, and problem solving and coping strategies.
These determinants can be used to analyze four central issues for rehabilitation counselors in providing assistance to adults with mental retardation and their families. These issues are (a) relationships with service providers, (b) permanency planning, (c) social support, and (d) multicultural considerations. Within the context of the Resiliency Model, relationships with service providers and permanency planning are discussed as family vulnerabilities, social support is discussed as a family resource, and multicultural considerations are considered within the context of family appraisal.
Family vulnerability refers to the range of co-occurring stressors that contribute to the pile-up of demands on the family (McCubbin et al. …