A Call to Action for Social Work: Minimizing Financial Hardship for Families of Children with Special Health Care Needs

Abstract

The social and economic burden of long-term illness and chronic conditions is not equitably distributed: Most people have moderate health care needs, and the personal cost of meeting these needs is correspondingly affordable. For a minority of the population, the reverse is also true; for example, research has affirmed the association between poverty and disability (Emerson & Hatton, 2008; Lustig & Strauser, 2007; U.S. Census Bureau, 2002). Among families caring for children with disabilities (that is, those with functional limitations in one or more domains), the social and economic burden of the child's special health care needs is significant (Bauman, Silver, & Stein, 2006; Boyle, Decoufle, & Yearginallsopp, 1994; Meyers, Lukemeyer, & Smeeding, 1998; Parish & Cloud, 2006; Parish, Cloud, Huh, 8: Henning, 2005; Robbins, Dollard, Armstrong, Kutash, & Vergon, 2008). Social work has an important role to play in promoting social and economic justice for children with special health care needs (CSHCN) and their families. In this National Health Line, we present a call to action for social workers and identify specific strategies that the profession can encourage at the policy and practice levels to promote social and economic justice for CSHCN and their families. The relationship between poverty and disability is complex; there is ample evidence that social risk factors, including low income, negatively affect children's health. Family poverty places a child at risk for adverse life experience resulting from environmental factors such as hunger and poor housing stock, factors that negatively affect multiple outcomes, including health (Bauman et al., 2006). Children living in poor households are more likely to have health problems, including chronic conditions and mental health disorders (Bauman et al., 2006; Ganz & Tendulkar, 2006; Parish et al., 2005; Robbins et al., 2008). The elevated prevalence of childhood disability among poor children supports the view that poverty and disability are linked (Fujiura & Yamaki, 2000; Perrin et al., 2007). Of U.S. households raising children with special health care needs, 41.2 percent have family income at or below 199 percent of the federal poverty level, according to the National Survey of Children with Special Health Care Needs (Child and Adolescent Health Measurement Initiative, n.d.). The causal associations between childhood disability, poverty, and family financial hardship are complex and multifactorial. For example, one factor that affects family financial hardship is the effect that a child's disability has on a parent's ability to work. Families of children with disabilities report higher out-of-pocket expenditures and reduced maternal employment compared with other families (Lukemeyer, Meyers, & Smeeding, 2000). As additional research is conducted to explicate these causal pathways, policy and practice solutions are urgently needed to assist families who are currently caught in the downward cycle of cumulative disadvantage over the life course (Kasper et al., 2008). The financial impact of raising a child with a special health care need manifests in three domains: higher health care costs, higher routine expenses, and loss of employment income. Effective solutions to these three general problem areas must encompass universal access to comprehensive coverage; this coverage must provide an adequate range and depth of health care benefits for children with chronic illness or disability and flexible financing for family supports. With these mechanisms in place, all three pathways to financial hardship--higher health care costs, higher routine expenses, and loss of employment income--can be circumvented. Although health reform is becoming a reality at the national level, the policy initiatives that result in improvements to the current system will still likely be implemented through existing state systems, at least in the foreseeable future. …