When a nursing home today undertakes a culture change journey, it follows a path that Elma Holder and the National
Citizens' Coalition for Nursing Home Reform (NCCNHR) helped to blaze.
Founded by Holder in 1975, NCCNHR (pronounced "nickner") has called attention to the plight of nursing home workers
and residents, spurred Congress to pass the 1987 Nursing Home Reform Act (OBRA), helped develop the Long-Term Care Ombudsman
Program and was a catalyst in forming the Pioneer Network to help change the culture of aging.
"We have always been there for the workers as well as the residents," says Holder.
NCCNHR's current focus is a national campaign to establish mandatory staffing standards, ensuring a sufficient ratio
of nurses and nursing assistants in nursing homes to properly care for residents.
Inadequate staffing, Holder believes, is the root of most nursing home problems, including the "high cost of poor
care". Billions in Medicare are spent treating preventable maladies like pressure sores, dehydration, fractures and
incontinence. Much cheaper, she says, to hire more and better trained staff to prevent such problems in the first place.
Holder got hooked on long-term care reform as a youth after witnessing the isolation an elderly neighbor experienced,
and later, the poor care her grandfather received after going into a nursing home.
"That was 1961 and I've been working on nursing homes ever since," she says.
After earning a masters degree in public health, she worked for two years as a gerontologist with the Oklahoma State
Health Department and accompanied regulators during their surveys of nursing homes.
"I was there to give my interpretation of what was going on with the residents and their quality of care," she explains.
"I became very concerned with what I saw."
She moved to Washington, D.C. to work with the National Council on Aging, and in 1970 she joined Ralph Nader's staff.
Then, as a member of the Gray Panthers' Long Term Care Action Project in 1975, she organized a meeting of advocates to
attend a nursing home industry conference. As a result of that meeting, NCCNHR was formed to represent consumers at the
national level.
Today, NCCNHR boasts a membership of 200 local and national organizations and over 1,000 individuals from 42 states,
including nursing home residents and their family members, long-term care ombudsmen, legal services, unions, providers
and religious, professional and citizen action groups.
"We have always been close to the grassroots," she says.
NCCNHR has helped form and support local citizens' organizations around the country, and has always included nursing
home residents on its 20-member board of directors.
In 1978, the Coalition published The Plight of the Nursing Aide in America's Nursing Homes, a study about the poor
wages and lack of training, supervision and respect afforded nursing assistants.
"We fully recognized that the workers' conditions reflected directly on the kind of care that was given," says Holder.
In 1985, NCCNHR gained insight into the elders' point of view by interviewing more than 400 nursing home residents in
15 states about their vision for quality, long-term care. Supported by the Robert Woods Johnson and The Retirement &
Research Foundations, the study found that a major factor determining quality care was whether elders had choices in their
daily living. This tied directly to whether there was sufficient staff on hand to assist them with choices.
The Coalition's push for OBRA came on the heels of the Reagan Administration's efforts to deregulate nursing homes in
the early 1980s. NCCNHR worked with Congressional opponents of deregulation to urge a moratorium on the Administration's
plan until the National Academy of Science's Institute of Medicine (IOM) could study its impact. After the study was
completed, the IOM Director called Holder and Barbara Frank, NCCNHR's former Associate Director, into his office.
"See these?" he said, pointing to stacks of reports collecting dust on his shelves. "Most of our studies don't turn
into anything meaningful."
He challenged NCCNHR to help turn the deregulation study's recommendations into law. They accepted.
"We formed a coalition called the Campaign for Quality of Care and achieved consensus on 12 issues... it was very
instrumental in helping motivate Congress to pass the reform law," Holder says.
OBRA essentially created a residents' bill of rights, mandating that nursing homes maintain not just physical health,
but also enhance the residents' quality of life, recognize their individuality, and ensure their right to choose
activities, schedules and health care.
Like other civil rights and social change laws, says Holder, keeping OBRA in place and implemented consistently around
the country is an ongoing challenge, but well worth the effort.
"The law has important meaning for every citizen in the country who faces nursing home care for themselves or a loved
one," she says.
The nursing home industry's failure to meet standards like those set by OBRA and its infinite quest for profits have
led to the current industry crises, Holder believes.
"The public trust has been broken because many providers don't try to meet the standards," she says. "Uncontrolled
and unrestricted profit making in our nursing home system has driven facilities into bankruptcy... they had just expanded
too much and become too greedy."
She urges health care professionals - nurses, doctors, social workers and others - to band together, stand up to owners
and demand the pay and resources necessary to provide the quality of care they are trained to give.
"I think that will help turn nursing homes around," she says.
Holder is as quick to praise innovative care givers as she is to criticize industry shortcomings.
"Since the very beginning we've always sought out the very best providers of care we could find, and given them our
support and recognition."
In 1995, NCCNHR brought together four pioneers of different nursing home social models to speak at its annual
conference. The four bonded at the conference, and with the support and motivation of current Pioneer convener,
Carter Catlett Williams, went on to found the Pioneer Network to promote culture change throughout long term care.
Holder serves on the Pioneer Network Board of Directors.
"We at NCCNHR feel ourselves to be very much a part of the culture change movement," she concludes.
Holder continues to work with NCCNHR, which is now directed by Donna Lenhoff.
