Family members and friends provide the vast majority of care for aging Americans experiencing chronic conditions, trauma or illness. Yet, according to "Addressing the Needs of Caregivers at Risk: A New Policy Strategy," a study conducted by the University of Pittsburgh Stern Center for Evidence-Based Policy, current policy efforts at the federal and state levels have not adapted to address significant health and economic risks that these caregivers experience.
Though caregivers provide support to over 90 percent of individuals receiving care at home, the study, published today by the University of Pittsburgh Health Policy Institute (HPI), found that they lack access to financial policies, flexible employment and social services needed to support this important function. The study builds on the Stern Center's first landmark report, "Addressing the Health Needs of an Aging America," published in September of 2015.
"Family members and friends play a vital role in keeping aging Americans healthy and in their homes, and dramatically reducing the cost of long-term care," said lead-author Everette James, J.D., M.B.A., HPI director and the M. Allen Pond Professor of Health Policy and Management at Pitt's Graduate School of Public Health. "Our study shows that public policy has not yet embraced these caregivers, many of whom will experience major economic losses and are often at high risk for mental and physical health problems compared to those who don't provide care. Many caregivers simply do not have access to benefits to compensate them for the time they spend giving care or employment protections that allow them to leave work to care for their family members. And we really have no comprehensive way of providing support services, such as respite care, to everyone who needs it."
Mr. James and his colleagues examined the impact of federal and state policy designs on family caregivers' finances, employment, and access to services and supports. This included major programs such as Social Security, Medicaid, and the Family and Medical Leave Act, as well as lesser-known federal programs such as the National Family Caregiver Support Program, state policies on tax credits and paid sick leave.
"In several cases, such as tax benefits and Social Security, no comprehensive policy framework to address family caregivers currently exists," said study author Meredith Hughes, a J.D., M.P.H. student at Pitt. "In other cases, such as family and medical leave, current benefits are inadequate to address caregiver needs."
The study also found that, despite evidence of positive impacts on caregivers, programs that deliver caregiver supports and services, such as respite, have not expanded to meet growing demand.
"Our study of current legislation shows that Congress has not been focused on changing how we address the needs of family caregivers," said study author Philip Rocco, Ph.D., postdoctoral associate in Pitt's Health Policy Institute. "By analyzing the patchwork of current programs, we've also identified a 'dashboard' of feasible policy options that could help mitigate caregiver economic and health risks."
The study concludes by suggesting a set of policy options to address current gaps in family caregiver policy.
The Stern Center is planning a series of studies on evidence-based policies to address health and economic risks experienced by family caregivers.