John O'Rourk and the other residents of Mercy Nursing Facility will get their choice of

movies from Netflix this spring. They also have received permission to grow fresh vegetables

outside the former Our Lady of Victory Hospital in Lackawanna.

That may not sound like a big deal, but in nursing homes, giving residents choices about

the small details of their lives rates as revolutionary.

Over the years, financing and regulation have turned nursing homes into one of the most

regimented businesses in the nation.

Facilities were built like mini-hospitals. Virtually every decision is made for residents,

from when to get up to what to eat. Even nursing homes that go beyond minimum standards often

offer impersonal care that defines a resident's final days by loneliness, boredom and a lack

of privacy.

Against this backdrop, a reform movement began more than a decade ago that called for a

radical rethinking of the long-term care system known as "culture change." It has gained a

toehold in Western New York and, despite slow adoption nationwide, may be more than a fad.

The new federal health care reform law includes demonstration projects to encourage culture

change. The Centers for Medicare and Medicaid Services, the federal agency that regulates

nursing homes, last year reinterpreted its guidelines to support the movement, such as the

provision to help residents dress in their own clothes instead of hospital-type gowns. States

are exploring paying incentives to nursing homes that embrace culture change.

In addition, the fledgling efforts here have grown.

A handful of Buffalo-area nursing homes and other organizations, working with funding from

the John R. Oishei Foundation, last July formed the Western New York Alliance for

Person-Centered Care.

The alliance considers itself the first U.S. communitywide initiative of its kind that is

focused on culture change. The new group devoted its first year to educational sessions for

nursing home leaders and staff to show that there is an alternative to business as usual that

can't be easily dismissed as pie in the sky.

About a dozen long-term care facilities in the region have expressed an interest in culture

change. Now the alliance's goal is to help the early adopters deinstitutionalize.

"It's no longer acceptable to treat people like property. We're not putting parts together

on an assembly line," said Rhonda Rotterman, the alliance's first executive director. "I tell

nursing home people that the longer they wait, the more it will affect the marketability and

surveys of their homes. It's also the right thing to do."

A new direction for nursing homes

Key elements of the reform movement known as "culture change"

Offer choices and encourage residents to make decisions about things that affect

them.

Seek a less-institutional feel with smaller groupings of residents, access to

refrigerators for snacks and no public address systems.

Allow the same nurse aides to always care for a resident to build caring

relationships.

Encourage teamwork, with flexible job descriptions, among staff.

Give aides more decision-making responsibilities over their work.

Adopt more comprehensive quality improvement systems with outcomes that can be

measured.

Source: Health Affairs, February 2010

Culture change refers to an assortment of efforts to operate nursing homes based on the

needs of the residents and not on the demands of an industry focused on efficiency.

The vegetable garden, as simple as it seems, reflects a changing attitude about

accommodating the wishes of elderly residents.

"Vegetables are not easy to grow for people in wheelchairs. We're going to start from seed

and then replant them in whiskey barrels," said O'Rourk, a 95-year-old retired farmer from

Lima who heads the Mercy nursing home's residents council.

Advocates of culture change say places such as Mercy and Beechwood Continuing Care in

Getzville are among the handful of facilities furthest along in reforming how they operate.

Among other things, they have redesigned floor plans into smaller households with common

areas similar to great rooms.

Nursing stations have been eliminated and medication cabinets hidden to make for a more

homelike appearance.

Instead of bland food served on trays, some meals are cooked to order.

Residents get more say about when they get up and go to bed, and what activities they do.

A new position has come into existence — a homemaker, who stays permanently in the

households and whose duties cross the boundaries within a staff accustomed to rotating through

a facility and carrying out narrow job responsibilities.

Staff also are encouraged to build relationships with the residents, not just rush through

their tasks. One of the principles of culture change is that if you treat employees with

dignity and respect, they will do the same to the residents.

"We have to change the philosophy so that we see ourselves as working in their home," said

Patricia Weeks-O'Connor, executive director of the OLV Senior Neighborhood.

The difficult part of culture change is that it's not just about feel-good amenities. The

movement also requires a change to the rigid rules and top-down management style common in

nursing homes to give staff broader responsibilities and decision-making authority, advocates

say.

There is an expectation that employees will accept flexible job assignments and work as a

team, a major challenge because of regulations over who can provide hands-on care. There also

is an expectation that nursing home operators, despite ingrained practices and worries about

the risks, will give up some control.

"For nursing home administrators, it's daunting to let go of something you have always done

a certain way and try something new. There is the fear of the unknown," said Dr. Mary Jane

Koren, assistant vice president of the Commonwealth Fund's Frail Elders Program and an expert

on long-term care.

Prodded by consumer groups and studies advocating better care for the aged, Congress in

1987 passed sweeping nursing home reforms that required operators to consider resident rights,

autonomy, choice, control and dignity.

The law encouraged some facilities in the United States to move away from the traditional

way of operating a nursing home, and in 1997, a group formed the Pioneer Network, a

Rochester-based organization that became the leading advocate for culture change.

A Commonwealth Fund survey in 2005 showed that 73 percent of health care leaders were

unfamiliar with culture change. But by 2008, when the survey was repeated, only about 34

percent reported unfamiliarity with the movement, according to a recent report by Koren.

Nevertheless, there's a long way to go.

Another Commonwealth Fund survey released in 2008 found that only 5 percent of nursing

homes described themselves as having completely adopted culture change.

Resistance represents more than an unwillingness to change.

Nursing home operators question whether regulators will punish them for doing things

differently. They remain skeptical about the costs of culture change, especially when their

reimbursement for many residents, especially those on Medicaid, is often less than the cost of

caring for them.

At a time of staff shortages and high turnover, operators worry about calls for

dramatically changing work descriptions and creating new positions. They worry about lawsuits

from families if giving residents more independence leads to injuries.

Rotterman said she has heard all the concerns.

"They say there are not enough workers, and too many lawyers and government surveys. We're

chained up by all this stuff," she said. "The truth is, we've done it wrong for 50 years, and

this is really about fear of change."

It's true that redesigning old nursing homes to make them more homelike costs money,

Rotterman said, but facilities don't have to make physical changes to introduce many of the

low-cost, do-it-yourself aspects of culture change.

"We're talking about caring for people the way they should be cared for," she said.

Koren and others argue that culture change can make good business sense, although they

acknowledge that advocates will have to make the case.

For instance, she said, revising job descriptions and licensing requirements will allow

nursing homes to address their biggest problem — maintaining a large enough and

adequately trained work force.

"The industry is headed in the right direction," Koren said. "Nursing homes are not going

away. We need them. We just need to get them to a point where people don't fear them."