CHICAGO--The national move to home and community-based care away from nursing homes has been widely supported by senior, consumer and disability rights communities. Surveys show older Americans prefer receiving health care services at home instead of in institutional settings.
In recent years nearly a million people with disabilities or conditions severe enough to qualify for nursing home admission have been enrolled in Medicaid-managed long-term care programs, which operate like HMOs. In theory, the care for those very ill beneficiaries should improve with better coordination and lower costs.
In Medicaid-managed long-term care, states pay private health plans monthly fixed rates to provide eligible beneficiaries' health care and services like transportation, home health nurses and personal aides for dressing, cooking and other activities of daily living. Plans only make money if they provide care for less than the monthly fixed fees. But most of the 26 states involved are new to providing managed long-term supports and services for this population.
Hard for Patients, Families
It's been a rocky transition for many beneficiaries and their families, who have seen cuts in services to parents and loved ones. Many have scrambled to find new doctors, hospitals and personal attendants. And while states like Texas and Wisconsin have seen costs drop, others such as Florida have seen hikes in health care spending.
New York allowed its health plan contractors to assess eligibility for the long-term care program and the number of enrollees and program costs rose significantly. The Visiting Nurse Services New York paid the U.S. attorney in New York City $35 million in 2014 to settle fraud allegations for enrolling ineligible beneficiaries.
And Connecticut and Oklahoma abandoned their managed long-term supports and services programs.
This population uses many more health care and support services — services previously delivered mostly in nursing homes. States, which struggle with rising Medicaid costs, have learned that providing those services at home costs far less than nursing home stays.
But politically savvy nursing home lobbies successfully fought those efforts for decades. In most states, however, the tide is changing.
Cuts Compromise Promising Change
Many experts agree that managed long-term care holds promise for the sickest and frailest of patients. A two-year Massachusetts program saved the state $40,000 per year for each of the 2,000 patients treated in their homes rather than nursing homes. Those programs improved care, reduced hospital readmissions and ER visits and increased mammography screenings and flu vaccinations.
Renee Markus Hodin, deputy director of the Boston-based Community Catalyst's Center for Consumer Engagement in Health Innovation, a nonprofit that helps consumer advocacy groups working to expand access to health care, said the challenge is in replicating those small regional successes into statewide programs serving many more people.
Hodin said a 1999 Supreme Court decision required the government to pay for long-term care in the least restrictive setting for people with disabilities and said the Affordable Care Act offered state Medicaid programs more flexibility. Fifteen states now spend more on home-based care than on nursing homes and that number is growing.
States embrace managed care because it offers predictable costs. But the harsh reality of state budgets has compelled some Medicaid programs to cut spending. Patient advocates claim that states have changed eligibility requirements to reduce the number of new recipients and implemented service cuts that put vulnerable people at risk.
Patient Beats Kansas Cuts
In 2013 Kansas' Medicaid program, KanCare, adopted long-term managed care for 20,000 people with disabilities like Winn Bullers. In 2009 Bullers, 51, quit his reporting job at the Kansas City Star. He was born with degenerative muscular dystrophy that progressively destroys his muscle tissue and organs.
By 2013 he was mostly bedridden. His doctors prescribed around-the-clock care. A KanCare health plan team re-evaluated Bullers to assess his needs, measuring how long it took him to perform daily activities.
"I have a ventilator that needs continuous monitoring. I have Type 1 diabetes. I am a high maintenance guy," he admitted. "They crunched their numbers and concluded I only needed 25 percent of the time they had previously allotted me and cut my weekly care hours from 168 to 40, even though all my medical doctors told them I needed 24 hours per day or I would die."
Bullers publicly protested. "I knew if I lost that fight, everyone else would lose, too," he said.
But he appealed and won, never facing the proposed service cuts. "Had I not prevailed, I would have died. Unless you're a squeaky wheel, your voice isn't heard."
Angela de Rocha, spokeswoman for the Kansas Department for Aging and Disability Services, said KanCare's goal was never to cut expenses, but to slow the rate of growth in health care costs.
De Rocha said hospital ER usage is down more than 27 percent for the home-based care population from the pre-KanCare rate. And that group saw significantly fewer hospitalizations, while many more now see primary care doctors, resulting in better outcomes.
Managing Costs, Not Care
Other states sought similar results. Amber Smock, director of advocacy for Chicago-based Access Living, said Illinois overestimated what managed care plans could do.
"There was an assumption that these plans knew how to move people out of nursing homes and into community settings," Smock said. "But they had no experience with that. Many patients were shocked to learn that physician specialists they'd depended on for years were no longer in their networks. This caused major life problems for many beneficiaries."
Gordon Bonnyman Jr., a staff attorney with the Tennessee Justice Center, said managed care plans have incentives to cut provider rates because they share those savings.
"I've been doing this for more than 25 years and regardless of what they claim about improving care and keeping people healthy, it's mostly about managing costs and bargaining for prices," Bonnyman said.
Elizabeth Priaulx, senior disability legal specialist with the National Health Law Project, said patient advocates still report program problems, such as inaccessible doctor offices.
"It's the responsibility of the managed care company to insure that its providers are accessible," she said. "But the bottom line is that states must police their contractors to make sure they are meeting the requirements."
James Sheehan, the chief of the charities bureau for the New York attorney general, said the universal truth is everyone wonders how many good years they have left. Sheehan said most people will experience a time when they can no longer perform common daily activities.
"The reality is this is what's going to happen to all of us at the end of our lives," Sheehan said, "and we need to be more conscious of how we care for each other now, because we're next."
Freelance journalist Mark Taylor wrote this story for the Chicago Tribune supported by the Journalists in Aging Fellowships, a program of New America Media and the Gerontological Society of America, sponsored by the John A. Hartford Foundation.