Helping the helpers: new state laws support the millions of Americans who minister to aging relatives and form the backbone of the nation's long-term care system.

• Author: Martinez, Julia C.
• Position: HEALTH CARE

When Kristen Mitchem's father was diagnosed with a malignant brain tumor in 2013, the North Carolina pastry chef quit her dream job at a five-star restaurant to help care for him in Oklahoma.

After several surgeries, Alphus Mitchem needed round-the-clock attention to recuperate at home, where patients report a higher quality of life.

Overnight, Kristen, her mother and sister joined the ranks of the 42.1 million family caregivers who form the backbone of the nation's long-term care system. Their work entails much more than cooking, cleaning and doctors' trips.

Today, nearly half of them also manage medication, monitor feeding tubes, dress wounds and perform other tasks normally done by health care professionals. Valued at $450 billion a year, family caregiving is a critical component of the U.S. economy, outstripping public spending for Medicaid in 2012.

"I didn't consider it a sacrifice to leave my job," Kristen Mitchem says. "When you spend your whole life with your parents taking care of you, it's something I didn't think twice about."

Still, because she's not trained as a caregiver, Kristen says the job has been frustrating at times and has caused setbacks for her father.

With the nationwide shift to home-based care from institutional care, family caregivers like the Mitchems lack supports, including flexibility, training and respite care, which could lead to caregiver burnout.

Numerous studies show demand for long-term services and supports will soon outpace the availability of potential family caregivers, according to data from AARP's Public Policy Institute, the National Alliance for Caregiving and other organizations.

The looming shortage of caregivers reflects a rapidly aging population, longer lifespans, a preference for home-based care, the need for more chronic disease care and changes in family demographics. Adding to this are the leading edge of baby boomers, who will turn 69 this year. Many never married or have fewer children to care for them than did their parents.

"If you look at the ratio of people who need care and people available to care for them, we're looking at a sleigh ride going downhill," says Susan Reinhard, director of AARP's Public Policy Institute. "It's a steep decline over the next 20 to 30 years. We have fewer people available to care for people who need it."

Without unpaid family caregivers, the economic cost of long-term care to state and federal governments would be a larger burden on Medicaid budgets.

To head off a potential crisis--and in the absence of a substantial federal long-term care strategy--state legislatures are finding ways to help fill the gap.

CARE Acts in New Jersey, Oklahoma

Lawmakers in New Jersey and Oklahoma enacted versions of the Caregiver Advise, Record and Enable, or CARE Act, effective in 2014. The law requires hospitals, when a patient is admitted and with his or her consent, to record the caregiver's name; to notify that caregiver before the patient is discharged; and to help prepare the caregiver for the medical or nursing tasks he or she is being asked to perform for the patient at home.

The ultimate aim is to keep patients healthy after discharge and to avoid costly readmissions. Nationally, one in five Medicare recipients who leaves a hospital is readmitted within the first 30 days, costing Medicare $17.5 billion a year in additional hospital bills.

The Centers for Medicare and Medicaid Services started penalizing hospitals in 2012 with lower reimbursements for readmissions within a month of discharge as part of the federal government's effort to pay...