Advocates cheered when the Supreme Court ruled in Olmstead v. L.C. that people with disabilities should be given options to live outside institutions. Fifteen years later, progress has been made, with every state allocating more funds to home and community care, but results vary widely depending on where patients live.
Here are five things to know about the state of long-term care in the U.S. on the anniversary of the Olmstead decision:
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CHECKERED PROGRESS: Nationally, the share of Medicaid long-term care spending going to home and community care has surged, from 28 percent in 1999 to 50 percent in 2012, according to federal statistics. Each state made progress, but the amounts are widely different. "It shouldn't be that different if you're in a state in the Northeast or the Southeast or the Northwest," said Dr. Bruce Chernof, chairman of the federal Commission on Long-Term Care and president of the nonprofit SCAN Foundation. "At the end of the day, you should expect to have reasonable access to home and community care."
NO GUARANTEE: The ruling offers few specifics. Though Medicaid beneficiaries in need of long-term care are guaranteed services in a nursing home or other facility, a waiver must be obtained for home or community care, leading to what advocates call the "institutional bias." Sen. Tom Harkin, D-Iowa, plans to introduce legislation he says will set "clear requirements for states" and eliminate such bias.
TYPICALLY CHEAPER: Home and community care is generally cheaper than institutional care. Medicaid paid an average of $225.04 per person per day in 2012 for those receiving institutional care. For those with waivers for home and community care, the average cost was $125.24 daily. GenWorth, the leading provider of long-term care insurance in the U.S., found in its survey of care costs that a shared nursing home room had a median annual cost of $77,380 this year, compared with $45,188 for a home health aide.
CRACKING DOWN: Enforcement of the ruling has been ramped up under the Obama administration. Forty-four cases representing 46,000 people in 24 states have been pursued since 2009, according to Jocelyn Samuels, the acting assistant U.S. attorney general who oversees the Justice Department's civil rights division. Statewide settlements related to Olmstead were reached in eight states: Georgia, Delaware, Virginia, North Carolina, New Hampshire, Rhode Island, Texas and New York.
FEELING FREEDOM: For those released from institutional settings, the same word arises again and again: Freedom. Willy Gray, 82, a retired truck driver from Atlanta, spent eight years in a nursing home after a stroke in 2002, even as his wife was home in their three-bedroom apartment. Now that he has obtained a waiver for in-home care, he gets by with two-hour visits from an aide twice a week. At home, he can enjoy the company of family and sleep through the night without a nurse entering. "I feel like I'm free," he said.