Medicaid Personal Care Services and caregivers' reports of children's health: the dynamics of a relationship.

An estimated 12.8 million children in the United States need “health and related services of a type or amount beyond that required by children generally” (McPherson et al. 1998; van Dyck et al. 2004). These children are disproportionately represented in public assistance programs; poor and disadvantaged, often lacking access to routine and family-centered health care (Newacheck et al. 1998; Mayer, Cockrell Skinner, and Slifkin 2004; Strickland et al. 2004). Those with greater functional limitations often have worse access to care (van Dyck et al. 2004). Total annual health care expenditures for children with chronic illnesses or special health care needs (SHCN) are significantly higher than are those attributable to children without these conditions (Newacheck and Kim 2005). They are more likely than non-SHCN children to spend days in the hospital, visit an emergency room, have surgical procedures, and have visits with medical specialists (Newacheck, Inkelas, and Kim 2004; Boulet, Boyle, and Schieve 2009). Family members usually provide the majority of care, assistance, and coordination of services for all children with special needs. A recent survey conducted by the National Alliance for Caregiving (2009) indicates that these caregivers spend an average of 29.7 hours per week helping with activities of daily living (ADLs) and other supportive activities, which limits their ability to earn income outside the home (van Dyck et al. 2004; Okumura et al. 2009). These issues are particularly pronounced for family or informal caregivers who are single parents (Rupp and Ressler 2009). Among all caregiver scenarios, families with children with SHCN experience the most adverse financial and medical effects of caregiving (Altman, Cooper, and Cunningham 1999). The role of family caregivers across the life span has a long history as an important topic for researchers and policy makers (Levine et al. 2010). This interest in caregiving has involved a call for research on the population-based health outcomes of caregivers, the dynamics of caregiving across the life span, and the link of caregivers' health to the health and quality of life of care recipients. Talley and Crews (2007), in their discussion of caregiving and public health, indicate that informal caregiving is “… an enormous system of care in the United States and around the world.” Unfortunately, little attention has focused on the collaborative element of home care involving the two systems that serve those receiving care in the community, the formal and the informal system. For those in the community with impairments or activity limitations, care often involves collaboration between formal (paid) health service providers and informal (unpaid) caregivers (Shewchuk and Elliott 2000; Carter 2008). An integral part of understanding how children with chronic health problems receive care in the community involves understanding how informal and formal care systems interact to structure the delivery of necessary formal health services. In 2007, the Medicaid program supported medical care to almost 29 million children, and 19 cents of every Medicaid dollar went to pay for services to children (Kaiser Commission 2010). The vast majority of these expenditures were for standard medical services in families where informal caregiving was not an issue. However, a nontrivial portion of these Medicaid monies paid for home health services that complemented the efforts of unpaid caregivers helping children with SHCN living in low-income households. In Texas, for example, in the state fiscal year beginning September 1, 2008 and ending August 31, 2009 (SFY 2009), only 0.24 percent of the children in the Medicaid program received Medicaid Personal Care Services (PCS) in their homes, but these same children accounted for 4.46 percent of total Medicaid (nonmanaged care) expenditures for children's health care. The average Medicaid expenditure for a child in Texas was U.S.$1,834 in SFY 2009. For children receiving PCS to supplement assistance provided by informal caregivers, the average annual Medicaid expenditure was U.S.$33,628.1 In SFY 2010, children in the PCS program increased to 0.31 percent of children receiving Medicaid and the cost of services increased by over U.S.$100 million to 6.03 percent of the Texas Medicaid Program's expenditures for children (Miller et al. 2011). In the present study, we examined the degree to which the conditions, impairments, activity limitations, and problem behaviors of the child—as experienced and reported by the caregiver—were predictive of the amount of PCS authorized by Medicaid case managers. We also investigated the degree to which a case manager's discretion in translating a child's characteristics into a statement of need for care (hours) might account for unique variance in the hours authorized. The three specific research questions addressed were as follows: What factors affected caregivers' reports of activity limitations requiring formal personal care assistance? What impact did caregivers' input on activity (ADL) limitations have on decisions to provide Medicaid PCS resources? How much variance in PCS hours was attributable to variation in indicators of children's status versus differences among case managers performing assessments?