Introduction

See also | Resolutions | Annual Meeting | Book | Job Opportunities The National Citizens' Coalition for Nursing Home Reform (NCCNHR) was formed because of public concern about substandard care in nursing homes. NCCNHR is the outgrowth of work first achieved by advocates working for Ralph Nader and later for the National Gray Panthers. Elma Holder, NCCNHR Founder, was working with The Long Term Care Action Project of the Gray Panthers when she organized a group meeting of advocates from across the country to attend a nursing home industry conference in Washington, D.C. in 1975. At that meeting, representatives of 12 citizen action groups spoke collectively to the industry about the need for serious reform in nursing home conditions. The consumer attendees were inspired to develop a platform of common concerns and motivated to form a new organization to represent the consumer voice at the national level. Most of the original members had witnessed and endured personal experiences with substandard nursing home conditions. Alice H. Hedt, Executive Director, named by Board in  January 2004 NCCNHR's current 20-member board, which includes residents of nursing homes, represents the grassroots membership of concerned advocates of quality long term care nationwide. The board is elected by consumer-controlled member groups and meets four times a year to establish policies and to help direct financing and programming issues. The solid base for NCCNHR is its two hundred member groups with a growing individual membership of over 1,000. Members and subscribers to NCCNHR's information resources from 42 states comprise a diverse and caring coalition of: local citizen action groups, state and local long-term care ombudsmen, legal services programs, religious organizations, professional groups, nursing home employees' unions, concerned providers, national organizations, and growing numbers of family and resident councils. NCCNHR provides information and leadership on federal and state regulatory and legislative policy development and models and strategies to improve care and life for residents of nursing homes and other long term care facilities. Ongoing work addresses issues such as: Inadequate staffing in nursing homes, particularly all levels of nursing staff Poor working conditions, salaries and benefits for long-term care workers Maintenance of residents' rights and empowerment of residents Support for family members and development of family councils Development and support for the long-term care ombudsman program Minimizing the use of physical and chemical restraints The high cost of poor care, such as pressure sores, dehydration, incontinence, and contracture of residents' muscles Accountability to taxpayers for nursing home expenditures and failure to fulfill government contracts Interested in becoming a Member of NCCNHR?

* Article about Elma Holder by Bard Lindemann With Love in her Heart and a Blaze in her Soul

Alice H. Hedt, NCCNHR Executive Director interviewed for McKnight's Long-Term Care News & Assisted Living 

 With Love in her Heart and a Blaze in her Soul

Written by Columnist Bard Lindemann

November 8, 2000 (www.beoutrageous.com)

How do I tell you about Elma Holder? In my mind, she is a legend; a marvelous, under appreciated story and, most assuredly, a book waiting to be written. We begin then with a statement of definition: No one, in or out of government, has done more for nursing home residents than Elma Holder who, with remarkable vision, founded the National Citizens Coalition for Nursing Home Reform (NCCNHR) 25 years ago. Congratulations, and happy birthday, my friend.

Tonight, when the lights go out in 17,000 nursing homes, from Maine to California, most of the 1.5 million residents will be reasonably well-fed, they will have been given adequate water and other liquids, and will have benefited from some nursing care. For this level of care, they can properly thank Elma Holder. Tonight, when those same lights go out, too many residents will lack for professional nursing care, they will have been only moderately well-fed and hydrated, and when they hit the call button, because a diaper is wet or soiled, no one will soon respond. To all of those hapless, abused residents, I say: "Cry out, in complaint, to your ombudsman ... your advocate under the law ... the law Elma Holder helped to write and pass."

During the Ronald Reagan administration, there was an attempt to deregulate nursing homes. One big city newspaper reported, "Members of the nursing home lobby are almost deliriously happy" because the White House wants to "do away with unnecessary and obstructive regulations..." The only obstacle standing in the way of this diabolic plan was Elma Holder's Washington-based organization, described as "a loosely-knit coalition of citizen groups with a tiny, under-staffed office --one flight up-- in a less than fashionable section of downtown..." Insiders said NCCNHR (pronounced Nick-ner) was going broke, and most bills went unpaid. Headlines therefore alluded to the biblical showdown between David and the giant, Goliath. The nursing home industry, incidentally, grosses $77.9 billion a year.

As in the Bible, David, alias Elma Holder in sensible shoes, won the contest. Following this historic moment, NCCNHR pressed on, helping to write the landmark nursing home reform legislation, known as OBRA (Omnibus Budget Reconciliation Act). "It's a wonderful law," Elma has said. "Those opening words... as public policy, it's beautiful." The law states each resident has "the right to attain and maintain the highest practicable physical, mental and psychosocial well-being." In other words, residents come first, and must be afforded the potential to live each day as though they were in a true home.

What is it that makes this plain-looking woman, who was "named after my daddy," so successful, such a crusader? "There's love in her heart," a friend told me, "but, at the same time, there's a blaze in her soul." The details of her biography offer small clues: with her degree in social work, she came out of Oklahoma and was hired by a young Ralph Nader. Later, she teamed up with the indomitable Maggie Kuhn, a guiding spirit of the aging movement. Elma once told me, "We worked unbelievable hours." Thus significant experience was gained alongside formidable mentors.

In 1975, Elma Holder founded NCCNHR, and has kept this non-profit entity viable, and growing stronger, through force of will, guile, vision, and by being stubborn. Today, thanks to Elma's generous spirit, longtime staff workers have pensions, along with the respect of those in the federal government. As for Elma, she no longer is the coalition's executive director. She's no less vigilant, however. "I developed cancer," she said to me, as one might announce they had come down with influenza. "It's multiple myeloma... there were some rough times." In a letter to family and friends, she acknowledges: "I'm one of the fortunate survivors. Through fate, good medicine (interferon, plus) and a tremendous amount of love and support, I'm still holding on in the cancer drama..."

At this auspicious, quarter-century anniversary, co-workers, and others, have submitted messages for an Elma Holder scrapbook. One longtime friend remembered dark times. "I asked her, where she found the strength to go on?" this writer recalls. Elma answered, "As long as there's breath in my body, I have hope." Finally, this is what all nursing home residents have unknowingly inherited: they have Elma Holder in their corner, and thus, can hold onto hope.

Alice H. Hedt, NCCNHR Executive Director interviewed for McKnight's Long-Term Care News & Assisted Living. Read the article: "A New Perspective," by James Berklan, July 1, 2008.