Twenty years after Congress vowed to improve the way we care for the old and the infirm, nursing homes still inspire dread. But some mavericks are working to deinstitutionalize them and make them more like home.




"We want to change the culture of aging," said Bonnie Kantor, executive director of the nonprofit Pioneer Network, a Rochester, N.Y.-based umbrella group leading the effort, "and we're beginning with nursing homes." Rather than warehouse those who are frail or disabled, the advocates of change argue, providers of long-term care need to create genuine communities where people receive needed services while continuing to lead meaningful lives.




Only a few hundred of more than 16,000 nursing homes nationwide have undergone the systemic transformation envisioned, according to the Pioneer Network. Hundreds more are taking first steps in that direction.




What distinguishes a humane nursing home? Pioneering homes go by a variety of names and descriptions &

Eden Alternative, Green House, Planetree, resident-directed, person-centered &

but share common features: autonomy and choice for residents, homey personal spaces, valued staff and a strong community of residents, staff, families and volunteers.




Some 1.5 million Americans live in nursing homes, including nearly 20 percent of those 85 and older, according to the National Institute on Aging. All receive medical services such as physical therapy, medication management and wound care. Roughly 10 percent of those in nursing homes are short-term patients who need care while recuperating from a sickness or injury.




In 1987 Congress passed the Nursing Home Reform Law, promising fundamental rights to residents. But the law's promise has gone unmet, advocates say. "Rights, respect, being treated as a unique individual, staff who are trained, quality of care and quality of life &

these key principles of the Nursing Home Reform Law are now 20 years old," said Alice Hedt, executive director of the National Citizens' Coalition for Nursing Home Reform. "We're eager for culture change to take hold so that each resident can enjoy truly individualized, person-directed care."




The Pioneer Network wants to see at least 10 percent of the nation's nursing homes overhauled in the next 10 years. The Robert Wood Johnson Foundation boosted such efforts in 2005 when it announced a $10 million program to encourage the creation of 50 Green Houses, innovative models of elder care developed by revolutionary gerentologist Bill Thomas.




The first Green Houses were built in 2003 by Mississippi Methodist Senior Services in Tupelo. They offer a residential setting and specially trained aides who act as caregivers, homemakers and companions, supported by nurses and therapists. Today, Green Houses are operating in nine additional cities, with 15 others in the development stage.




Pioneering homes demonstrate that:




"" Life can have meaning, no matter where we live. Nursing home residents want to be more than just recipients of care, studies show. Pioneering homes find that many residents enjoy making a contribution, whether it's helping prepare meals, caring for a dog, volunteering to teach English to a staff member or comforting another resident who feels low. The more spontaneous and personalized the activities, the more residents remain engaged.




Most nursing homes emphasize custodial care to the exclusion of normal life, said John Henry, administrator at Ruxton Health of Denton, Md. "If I asked you what did you do last week, you wouldn't say, 'I ate, I went to the bathroom, I got dressed.' It's the life beyond that that is fun," he said.




"" Aides can be caring and competent, given a supportive culture. Researchers who interviewed aides for a study, published in 2003 in the Journal of Gerontological Nursing, found that aides believed supervisors "treated them individually as if they were all unskilled, dishonest, lazy, and stupid." Often working without adequate assistance, aides surveyed in numerous studies say they can't give residents what they most want &

consistent care and friendship.




Transformational homes reduce staff turnover and encourage aides to build relationships with residents.




Ruxton's director of nursing, Lisa Havelow, expects her staff members to talk to residents, show them affection and make their wishes their top priority.




"" Leaders must lead. The culture change at pioneering homes depends on the commitment of the administrator, director of nursing and board, say those who have undertaken it. "From the beginning, I tell (employees) I'm a different kind of director of nursing," Havelow said. "I expect interaction (between the staff) and the residents." Administrator Henry models the relationships he wants people to have. "I've never seen another administrator like John," said Deborah Jackson, a cook and veteran of 29 years in long-term care. "If you need a hand cleaning up, he pitches in. He compliments us on the food daily."




"When we eat dinner, I've known him to eat at our table," Geneva Gibbs said. "He's the big boss &

I thought he wouldn't eat with us!"




To learn more about the grass-roots movement to transform nursing homes, including stories from the field, research, resources and more, visit: , , , , .