This is the best and worst of times for family caregivers, at least in terms of legislation designed to address their needs.
"There are some positive things — states are recognizing the need to increase funding for home and community-based care," says Sandra Newman, policy specialist for the Family Caregiver Alliance (FCA). But the uncertain economy and shifting national priorities mean that "legislators are really challenged right now by how to do that."
The FCA, a national caregiver advocacy group, sponsored a conference for legislators, policymakers and advocates in October 2001. "Who Will Provide Care? Emerging Issues for State Policymakers" focused on ways to strengthen and support informal family caregiving as part of long-term care (LTC) service delivery.
A summary of the conference proceedings and text of seven policy briefs written expressly for the conference are available at the FCA Web site. The full proceedings, published in 2001, also may be ordered for $30 from FCA, 180 Montgomery St., Suite 900, San Francisco, CA 94104; (800) 445-8106; or through the Web site.
Families take on responsibility
Approximately 12 million Americans, almost half under age 65, require LTC. (LTC refers to assistance with daily living activities such as eating, bathing, dressing, etc.) Some 80 percent of LTC is provided by family and friends ("family caregivers"). These caregivers, many of whom also hold down jobs, save states upwards of $196 billion a year.
| "Who Will Provide Care?" focuses on ways to strengthen family caregiving.
FCA says that, to continue providing this level of care, family caregivers need help, such as respite services, in-home assistance, education and training, easy access to information about services, financial help, affordable long-term care insurance and greater control over how service dollars are spent. Working caregivers also need support from employers.
At present, these concerns are being addressed in a piecemeal fashion by individual states and some federal proposals, Newman says.
At the federal level, a proposal to double funding for the National Caregivers Family Support Program (NCFSP), which funds state caregiver support programs, is stalled along with other 2003 appropriations bills. Other promising but immobile proposals include the Lifespan Respite Care Act, which would provide states with grants to expand respite care services, and a proposal to extend Medicare benefits to caregivers.
On the state level, Newman pointed to several successes: California's enactment of a paid family leave program; Hawaii's creation of a statewide long-term care safety net; and Florida's extension of a project that gives cash allotments directly to LTC consumers and allows them to decide how to spend the funds. (For more on these programs, visit the FCA Web site.)
Cooperation is key
In the current political and economic climate, the key to success is collaboration, Newman says. Caregivers and care recipients should work with local advocacy groups and lobby their state and national representatives. States can be encouraged to maintain and improve existing programs if resources aren't available for new programs.
"It's urgent that people speak up now," says Bonnie Lawrence, communication manager at FCA. "Legislatures all over the country are slashing programs. They need to hear that these programs are essential for public health."