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Article Excerpt
When disability is defined on the basis of functional limitations in mobility, self-care, communication, or learning, children with disabilities represent approximately 12.3 percent of the population of children ages 5 to 17 in the United States (Hogan, Msall, Rogers, & Avery 1997) or approximately 6.55 million children in 2000 (U.S. Census Bureau, 2006). Children with disabilities are significantly more likely to live in poverty than other children. Twenty-eight percent of children with disabilities lived in households with income below the federal poverty level compared with 16 percent of children without disabilities (Fujiura & Yamaki, 2000).
The purpose of this article is to provide a critical review and analysis of the constellation of factors that affect the financial well-being of young children with disabilities and their families. Children with disabilities are a significant proportion of the general child population, and social workers encounter these children and their families across an array of practice domains, including health and mental health settings, schools, social services agencies, and the disability service system. Social workers who understand these families' circumstances can provide responsive services to this vulnerable population.
For children, generally, living in poverty is associated with a host of adverse consequences, including poor physical health, diminished cognitive abilities, emotional and behavioral problems, and reduced educational attainment (Brooks-Gunn & Duncan, 1997). But there is mounting concern that poverty has more deleterious effects for children with disabilities than it does for typically developing children (Park, Turnbull, & Turnbull, 2002).
The causes of increased poverty among children with disabilities are not well understood (Fujiura & Yamaki, 2000), but children's financial well-being in the general population is directly related to parental employment (Lichter & Eggebeen, 1994). Parental employment is possible when an array of factors converge--available jobs, suitable and affordable child care, transportation, and sufficient skills and training to permit a parent to compete in the workforce. Among families with typically developing children, these preconditions of employment are well documented and relatively well understood (Blau, 1998; Waldfogel, 1997). But how do these circumstances differ for families of children with disabilities?
FACTORS THAT INFLUENCE FAMILIES' FINANCIAL WELL-BEING
The following factors are associated with or influence families' financial well-being: the elevated costs of caregiving for children with disabilities, income transfer programs, employment for parents of children with disabilities, and its associated complements--child care and leave time (Ferber & Nelson, 1993; General Accounting Office [GAO], 1999; Waldfogel, 1997, 2001).
Elevated Costs of Caregiving
A limited number of empirical studies of the economic implications of having a child with disabilities have explored the financial expenses associated with caregiving. Unfortunately, much of the research was conducted in the 1980s and early 1990s, and the costs of caregiving may be somewhat different today. However, the existing research provides a stark depiction of the underlying cost differences between raising children with and without disabilities.
Researchers have attempted to estimate the incremental costs attributable to the care needs of children with disabilities, in excess of the care needs of children without disabilities of the same age (for example, Newachek & McManus, 1988). Other efforts have estimated out-of-pocket costs for children with disabilities or chronic health conditions (for example, Birenbaum, Guyot, & Cohen, 1990; Fujiura, Roccoforte, & Braddock, 1994). Both types of inquiries have found that families incur dramatic monetary costs to meet their children's impairment-related expenses.
A great range of needs is associated with caring for children with disabilities, including specialized therapies, home modifications, adaptive equipment, medication, and educational services. To maintain optimal well-being, children with disabilities have elevated and ongoing needs for therapy and primary and specialty care (Perrin, 2002).
Public funding for health care is derived from three main sources: Medicaid, the State Children's Health Insurance Program (SCHIP), and the Title V block grant programs administered by the Maternal and Child Health Bureau. The benefits of Medicaid and its constituent program, the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) program, are usually more complete than the benefits children with private health insurance receive (Fox, McManus, & Limb, 2000). Important for our purposes, however, is that public health insurance and other social services programs like Medicaid and SCHIP do not generally cover all expenses families encounter, and, as a result, the costs of disablement in the United States are high and are borne in large part by parents for their disabled children (GAO, 2000). Although private, third-party insurance may cover medical expenses, coverage is varied and insurers frequently limit the allowable services for children with disabilities (Fox et al., 2000; Silver & Stein, 2001). Furthermore, at least 10 percent of children with disabilities do not have any medical insurance. Lacking public supports, parents must pay for services out of pocket, a serious financial burden.
The out-of-pocket expenses families use to care for their children with disabilities are significant. Newachek and McManus (1988) found the out-of-pocket expenses of parenting children with disabilities were two to three times higher than the expenses associated with parenting children without disabilities. Other researchers have found that when matched with families of nondisabled children, families of disabled children incurred much higher monetary expenditures for an array of services (Baldwin, 1985). Morris (1987) estimated that the disability-related cost of raising a child with cerebral palsy from birth to age 18 was $95,000.
However, the out-of-pocket expenditures associated with raising children with disabilities vary. One study estimated that the costs borne by families supporting adults with developmental disabilities who were living at home averaged $6,348 annually in 1990, with wealthier families reporting higher expenditures (Fujiura et al., 1994). Although our focus is on the financial well-being of families with young children, the findings of Fujiura and his colleagues illustrate the continuing impact of disability on the family's financial well-being. These results corroborate an earlier report that out-of-pocket expenses increased as family income increased (Newachek & Halfon, 1986). Because numerous studies have shown that the cost of raising a child with a disability is significantly higher than the cost of raising a child without a disability, variable out-of-pocket expenditures by family income (Fujiura et al., 1994; Newachek & Halfon) suggest some low-income families may not be able to meet all of their disabled child's needs....
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