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March 4, 2009 – 5:18 p.m.

Wisconsin, Other States Lead the Way Outside the Nursing Home

By John Reichard, CQ HealthBeat Editor

The energy and enthusiasm behind efforts to provide long-term care services outside the nursing home were on abundant display at a Senate Aging Committee hearing Wednesday, with a packed hearing room of disability advocates urging alternatives to institutional settings and witnesses describing leading-edge state programs.

Many states are virtually panicking about an expected upsurge in demand for long-term care services in their Medicaid programs, but Wisconsin and a handful of other states show that an array of services can be delivered outside the nursing home while controlling costs, advocates of the disabled say.

Efforts to overhaul the nation’s health care system should seize on the example of these states and encourage other states to adopt them, they add.

Testimony by a Center for Medicaid and Medicare Services official noted that the percentage of Medicaid long-term care funding for “home- and community-based services,” a term that includes assistance with such daily activities as eating, dressing, bathing and going to the bathroom, has climbed from as low as 20 percent to 47 percent in 2007. But plenty of pent-up demand for a bigger movement to care outside nursing homes remains, judging from testimony at the hearing chaired by Democratic Sen. Herb Kohl of Wisconsin.

Karen Timberlake, secretary of Wisconsin’s Department of Health Services, described the psychological drive behind the movement. “Older people often resist getting help,” she noted in her written testimony. “Independence is primary, as it is for younger people with disabilities. Their goal is to avoid or to exit the nursing home and return home or live in an apartment or assisted living facility that remains connected to community and faith organizations.”

Creating a spectrum of services outside the nursing home requires obtaining multiple waivers from the federal Medicaid program, which can be time-consuming and leaves people on waiting lists for such care. But Timberlake said, “Wisconsin has broken down the silos of individual Medicaid services and multiple home and community waivers.” The state’s Family Care program combines services inside and outside the nursing home for the frail elderly and for younger people with disabilities “in one flexible and comprehensive package,” she said.

“Putting all of the resources into one ‘purse’ does something pretty amazing: it gives consumers the choice of institutional or home care, without delay, when an older person needs help. Previously, an elderly woman who took a bad fall would have the so-called choice of a Medicaid nursing home bed immediately, or the promise of home and community care after a long wait.”

Holly Benson, secretary of the Florida Agency for Health Care Administration, described the state’s “Cash and Counseling” program in which patients including those with brain and spinal cord injuries and developmental disabilities get a monthly allowance for all of their home- and community-based services rather than just personal care. They use the money to hire workers and to buy care-related goods and services “Our frail elders, for example, manage 27 services,” said Benson. The program “provides higher levels of consumer satisfaction at the same price as traditional services,” she said.

A Kohl aide emphasized that program’s like that in Wisconsin are saving money and also are taking on many new enrollees because of the state’s ability to assess patient needs and what services are being delivered to patients. That in turn allows the state to assess demand and manage costs, the aide said. On average, Medicaid spends $44,000 less per year per capita if the patient receives care outside the nursing home rather than inside, the aide said, referring to the finding of a study published in the January/February issue of the policy journal Health Affairs.

The concern among states has been that opening up access to alternative services would sharply increase enrollment and drive up costs overall. But the aide noted that the Health Affairs study by researchers at the University of California, San Francisco found that spending growth was greater for states offering limited non-institutional services than for states with large, well-established non-institutional programs.

Kohl is eying ways to foster adoption by other states of programs like that of Wisconsin, although what form those efforts will take hasn’t been specified yet. Other programs in states such as Washington, Oregon, Vermont, Minnesota and Massachusetts show states can “rebalance” Medicaid outlays in the direction of home- and community-based care in ways that improve services and lower costs, the aide said.

Policy changes are needed, said Melanie Bella, senior vice president at the Center for Health Care Strategies, a self-described nonprofit health policy “resource center” located outside of Princeton, N.J. “Today, across the country, there are many small pockets of innovation in states that — out of necessity and ingenuity — are doing their best work around administrative and financing hurdles to deliver better care and more cost-effective services,” Bella said. “But with the myriad of ‘boutique’ programs and with no clear path for long-term care, there is not a strong sense of knowing what kinds of care work best when, where and for whom.”

That sense certainly wasn’t lacking among the many disabled people seated in wheelchairs throughout the hearing room, who came to Washington by bus from Rochester, N.Y., to champion home and community based services and who applauded Democratic Senator Ron Wyden of Oregon when he promised to “prosecute your case” at a White House summit Thursday on overhauling the health care system. Affiliated with the advocacy group “ADAPT”— whose slogan is “there’s no place like home; and we mean real homes, not nursing homes” — the spirited group concluded the hearing with repeated chants of “Community Choice Act Now!”

The reference was to legislation to be re-introduced March 24th by Sen. Tom Harkin, D-Iowa. Chris Hilderbrant, a spokesman for the four dozen or so visitors from Rochester, said “it’s definitely not a balanced system” between care inside and outside the nursing home. The legislation would give any individual entitled to Medicaid nursing home or other institutional services the right to receive long-term care outside the nursing home.