Disability in the Family: The Effects on Children's Well-Being

Abstract

In 1990, 33.7 million people in the United States were limited in their usual activities by a chronic health condition or impairment (Adams & Benson, 1991). Progress in medical technology has increased the number of babies born with disabling conditions who survive to adulthood and has lengthened life for the dependent elderly (Crimmins, Saito, & Ingegneri, 1989; Newachek & Taylor, 1992). The growth of the population with disabilities has increased concerns about who will care for them. The Americans with Disabilities Act, enacted in 1992, ensures basic civil rights for individuals with disabilities and, thus, improves their ability to live independently (Pope & Taylor, 1991). Nevertheless, many disabled persons will remain in the care of their families (Avery, Speare, & Lawton, 1989; Batavia, DeJong, & McKnew, 1991). Many of the same families also provide care for minor children, who are dependent on a caretaker to meet their needs. The additional tasks of caring for a person with disabilities may adversely affect the well-being of the children in those families. The functional limitations imposed by chronic health conditions or physical impairments are variable and not always accompanied by poor health (Batavia, DeJong, & McKnew, 1991; Reis & Brown, 1991). They run the gamut from an inability to perform any task of daily living to the need for only occasional assistance with more complex physical or cognitive tasks. Persons with disabilities ranging from the simplest to the most severe, however, require some form of regular aid. Those living in family households receive all or most of that aid from their coresident kin (Avery, Speare, & Lawton, 1989; Hing & Bloom, 1990). Previous research on disability in the family has focused on the effects of chronically ill and disabled children on the family system and on the health and well-being of siblings (Breslau, Weitzman, & Messenger, 1981; Corman & Kaestner, 1992; Darling, 1987; Drotar et al., 1981; Gath, 1973; Kazak, 1986; Kazak & Merton, 1984; Kazak, Reber, & Snitzer, 1988; Lavigne & Ryan, 1979; Mauldon, 1992; Mulder & Suurmeijer, 1977; Smith & Joesch, 1993; Tew & Laurence, 1973; Trevino, 1979; Yura, 1987). Childhood illness and disability is, perhaps, the most disruptive of family-related health events because it is unusual and falls outside of the normative life course of most families. Restricting the discussion to children, however, understates the potential impact of an individual's health-related disability on other family members. In this study, we examine the effect of disability for any coresident family member on the well-being of children without disabilities who are aged 5 to 17. Using data from the 1988 National Health Interview Survey on Child Health (NHISCH), we document the relationship and number of severely disabled persons in family households and the effect of their presence on three measures of children's physical and emotional well-being. We hypothesize that family relationships and the number of disabled persons who are coresident with the child will have a significant and varying impact on the child's well-being because care giving tasks are allocated differently among family members. The NHIS-CH is a unique data source for this type of analysis because it provides information on not only the health and well-being of the child but also on all related persons in the household. DISABILITY AND THE FAMILY Previous research, as noted, has concentrated on the effects of children's disability or chronic illness on aspects of family life such as family functioning, structure, and the effect on siblings of the disabled child. Substantial realignment of family responsibilities, dyadic relationships, and the care and attention spent on other members of the family occur when a child is born with disabilities or develops them during childhood (Darling, 1987; Seligman, 1991). …