LTC’s 10 most influential people

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The long-term care field has had a rich history, full of ups, downs, hair-raising regulation and heartwarming innovations. It is a story encompassing many decades, featuring a cast of heroes and, yes, villains whose impacts long-term care providers experience virtually every day of their working lives. I’ve composed my own idiosyncratic “Top 10” list of these people, based on my nearly three decades of experience in geriatric publishing, including 18 years as editor-in-chief of this publication. I take full responsibility for my choices. Perhaps not everyone will agree with them, but I’ll do my level best to make the case for each and every one.

Diane Carter, RN, President and CEO, American Association of Nurse Assessment Coordination (AANAC)

There’s no question that the Minimum Data Set (MDS) has had a major impact on long-term care. The MDS is a complex, intricate document that serves simultaneously as a resident care guideline/checklist, a regulatory compliance template, and a Medicare/Medicaid reimbursement calculator for the vast majority of nursing facilities in America. The “author” of the MDS would easily deserve ranking in my Top 10, but the MDS is more a collaborative product of several university academics and federal government managers. It is not at all difficult, however, to credit one individual for leading the way in helping nursing homes comprehend the MDS and make optimal use of it: Diane Carter. A former nurse, healthcare academic, and Colorado state survey official, Carter founded AANAC in 1999 to help long-term care nurses assigned to “do” the MDS to do it right. AANAC was one of the very first “virtual” associations in the United States, with membership and membership activities conducted primarily online, but its members have also benefitted over the years from live national conferences featuring presentations by MDS experts from government, academia, and healthcare. For her focus on the MDS and its proper implementation, Carter earns a spot in my Top-10 ranking.

Sen. Frank Moss (D-Utah)

During his political heyday in the 1970s and ’80s-and particularly the early ’70s, when he chaired Senate nursing home investigations that led to Public Law 92-603, the progenitor of the Nursing Home Reform Act of 1987 (known popularly as OBRA ’87)-Sen. Moss spearheaded the crackdown on nursing homes and virtually all the negative publicity they’ve experienced ever since. Moss rose to prominence on the wave of the “Medicaid mill” scandals of that period in which hospitals, mental hospitals, and nursing homes were accused of accepting millions in Medicaid dollars in return for minimal and in many cases abusive care. Though he went on to coauthor a muckraking book on nursing homes, Too Old, Too Sick, Too Bad: Nursing Homes in America, in 1977, Moss came to be identified more with other aspects of long-term care, specifically hospice and home care, cosponsoring key enabling legislation for these in the 1980s. But the dark side of nursing homes’ reputation over the past several decades can be traced back definitively to Sen. Moss.

Photo: Courtesy of UMBC Erickson School of Aging Studies

William H. Thomas, MD

Known universally as “Bill” Thomas, it’s hard to know of anyone who’s had more impact on the quality of the nursing home experience than he. Thomas is known for not one, but two major innovations in long-term care delivery: the Eden Alternative and the Green House Project. People who write off the Eden Alternative as “plants, fur and feathers”-alluding to Thomas’s advocacy of on-premises pets and vegetation in the nursing home environment-are missing the fundamental point: to help residents stay in touch with and enjoy the real world around them despite isolating circumstances. Similarly, the Green House is more than a cottage with 12 bedrooms surrounding a family room/kitchen. It’s a way of reducing the scale of institutional care to very personal levels-important for anyone residing in such an environment 24/7/365. Both innovations pose significant challenges to administrators adopting them, but they point to a way out of the nightmares that quality-of-care advocates have railed about for 40 years. And Thomas himself is a most entertaining advocate, as anyone who has attended his lively and inspiring presentations can attest.

Photo: Courtesy of The Heinz Awards/photographer Jim Harrison

Elma Holder, Founder, the National Citizens’ Coalition for Nursing Home Reform (NCCNHR, currently the National Consumer Voice for Quality Long-Term Care)

Undoubtedly the non-politician most instrumental in enacting OBRA ’87 and establishing the state survey process for quality enforcement was Elma Holder. Starting from her roots with consumer activist Ralph Nader and the national Gray Panthers party in the early 1970s, Holder formed the NCCNHR and seized the initiative in studying nursing home quality of care. Her work helped guide the National Institute of Medicine in formulating the recommendations that led to OBRA ’87. She then led the fight for OBRA enforcement, for the creation of public ombudsman programs to assist residents and families, and for the creation of the Pioneer Network, advancing the cause of resident-centered care. Holder continued to hold the industry’s feet to the fire even after resigning her NCCNHR executive director post in 1995. My main recollection of her in the ’90s was her ongoing face-offs with then American Health Care Association Executive Director Paul Willging-Holder, the dogged, uncompromising consumer advocate vs. Willging, lobbyist extraordinaire and possessor of a stinging wit. (Willging went on to write a lively column for this magazine for several years.) I always felt that the two combatants liked and loathed each other in equal measure.

Sen. Kennedy
Rep. DeWine

Sen. Edward M. Kennedy (D-Massachusetts) Rep. Mike DeWine (R-Ohio)

I am asserting poetic license and combining two politicians for inclusion as “most influential.” The late Sen. Kennedy and the departed (from Congress) Rep. DeWine (recently elected state attorney general in Ohio) achieved something rarely seen these days: a bipartisan and substantial piece of legislation having the potential to change lives in important ways. I am referring to the CLASS Act (Community Living Assistance Services and Support), our country’s very first ever dedicated long-term care financing system. Once it goes into effect at some time in the mid-next decade (assuming Republican pledges to repeal healthcare reform fall short), our country will no longer need to rely on the overstressed Medicaid program for the bulk of long-term care financing, a mission for which Medicaid was never really intended. Rather, the public should benefit from working partnerships between the new federal program and quality private long-term care insurance to cover the bulk of these major expenses at every level of care. CLASS will not be an entitlement program, in the sense that it would be supported by taxpayers at-large. Rather, it will be a self-financed social insurance program, much like Social Security, employing a voluntary paycheck withholding program during participants’ working years-in short, the old-fashioned “pay-as-you-go” approach. Unfortunately this particular strength of CLASS is also its weakness: because it will take years-an estimated seven or eight years, in fact-to begin to amass sufficient funding, CLASS just might run out of time politically. As with the besieged healthcare reform legislation in general, people could well lose benefits before they even knew they had them. At least, though, we can say that it was there for at least a while: our nation’s long-awaited long-term care financing system, one that would not have been realized without the support of these two congressmen.

James L. Wilkes II, Partner, Wilkes & McHugh, P.A.

If any one individual can be described as a “holy terror” for nursing home administrators everywhere, it is attorney Jim Wilkes, whose Tampa, Florida-based law firm has spent the past 20 years winning liability judgments against nursing homes totaling hundreds of millions of dollars. Focusing on negligent resident care, often manifested by life-threatening pressure ulcers, falls, fractures, and assaults due primarily to alleged understaffing by large for-profit chains, Wilkes may claim to have materially raised the level of care in American nursing homes out of sheer fear, if nothing else. Nursing homes counter that he is potentially responsible for damaged reputations and overpriced insurance coverage for thousands of conscientious facilities, putting their already shaky existence in even deeper jeopardy. One ironic certainty over the years is that the Wilkes verdicts have inspired tort reform laws in several states limiting judgments and lawyer fees. Nevertheless, the big cases keep coming, with major trials underway in California, Tennessee, and Florida-evidence that Wilkes’ fertile field in liability litigation is continuing to produce bumper crops.

Photo: Courtesy of International Longevity Center–USA

Robert N. Butler, MD

While not associated solely with long-term care, and only tangentially with nursing home care, Dr. Butler nevertheless “set the table” for everything that has happened in the field in recent decades. A noted geriatrician starting in the 1970s, when the term “geriatrician” was new, Dr. Butler published the 1976 Pulitzer Prize-winning Why Survive? Being Old in America-a breakthrough moment. For the first time Americans were urged to think seriously about aging and all its personal and social implications. Dr. Butler went on to become the first director of the National Institute on Aging and founded the nation’s first department of geriatrics at Mt. Sinai School of Medicine in New York. (He was also medical editor-in-chief of Geriatrics, a journal I edited for nine years.) Through subsequent decades as founding president of the International Longevity Center-USA until his recent death at age 83, Butler spread the word on the needs and realities of aging people. Everyone who is working in long-term care today and striving for resident-centered care and caring environments is picking apples from Dr. Butler’s tree.

Tommy Thompson, Director, the U.S. Department of Health and Human Services (HHS), 2000-2005

Possibly the most underrated politician of our time, Tommy Thompson, former Republican governor of Wisconsin, headed HHS under the first administration of George W. Bush. Already noted for his enlightened approach to welfare reform in Wisconsin-he advocated spending more money up front to ensure that people didn’t fall through the cracks as they weaned themselves off welfare-Thompson spurred a quiet revolution in long-term care policymaking during the early years of this century. Indeed, I thought of the period as a long-term care “Golden Era,” manifested in two ways: (1) a unique collaboration among the leaders of the American Health Care Association (Charles H. “Chip” Roadman), the American Association of Homes and Services for the Aging (Larry Minnix), and the federal Centers for Medicare & Medicaid Services (Thomas A. Scully). These three lively and colorful people formed a working triumvirate that advanced nursing home regulatory policy sensibly and flexibly, and with open doors to the industry at-large. It was fun to see the feisty ex-military man Roadman; the folksy, down-home Minnix; and the articulate, sometimes over-the-top Scully playfully cross swords and hash over the issues at professional conference panels and online discussions. And, again thanks to Thompson, they all had a sparkling new federal/state initiative to talk about, specifically: (2) the Quality Improvement Organization (QIO) approach to upgrading long-term care quality. As opposed to the check-off, too often “gotcha”-type system that the OBRA annual survey system has devolved to in some states, the QIOs offered old-fashioned “show and tell” sessions on quality improvement. In short, the QIOs in various states assembled member nursing home organizations and showed them how to do things better. And it produced impressive results-for example, significant reductions in the incidence of pain and pressure ulcers for residents in participating facilities. Alas, Tommy Thompson resigned at the conclusion of the first Bush administration, never to be heard from again on the national stage. Roadman and Scully also resigned and went their separate ways (although Minnix remains at the head of AAHSA), and the QIO approach still has not gained traction over the OBRA survey approach. By 2005, in any event, we had seen the end of long-term care’s “Golden Era.”

Photo: jvinfante photography

Robert G. Kramer, Founder and President, National Investment Center for the Seniors Housing & Care Industry (NIC)

Bob was part of a quartet of young Wall Street investment analysts who concluded during the early 1990s that long-term care was a major real estate investment field in its own right, but lacked data of any use to potential investors and lenders. The NIC was the result, and Kramer has gone on to become the face of the organization over the past decade and a half. The quantity and quality of the research data that NIC has developed and published over the years in its annual reports and studies and in presentations at its well-attended biannual conferences have grown astonishingly. With its proprietary NIC MAP product, financiers now have access to detailed data in specific metropolitan areas, a crucial component of informed valuations and successful investment strategies. Through good economic times and bad, the NIC has in effect stabilized its market with high-quality data-and, as NIC members will universally agree, market stability is a good thing.

Photo: Courtesy of Evergreen Retirement Community

David Green, former CEO (retired), Evergreen Retirement Community, Oshkosh, Wisconsin

One of our proudest achievements at Long-Term Living (or Nursing Homes/Long Term Care Management, as it was known for most of my editorial tenure) was the DESIGN series of annuals devoted to displaying the latest in nursing home and assisted living architecture and interior design. Starting in 1997, I humbly submit that they contributed materially to the evolution of long-term care design toward more person-centered, homelike environments. And, to me, the acknowledged leader in the magazine’s fostering of this was former architect/engineer turned healthcare entrepreneur David Green, a consistent presence on the DESIGN judging panels. During the years I’m referring to, Green was CEO of the Evergreen Retirement Community. Under his leadership, Evergreen was a recognized pioneer in the development of the “neighborhood concept” for long-term care-the notion that this highly personalized type of care is best delivered in an area resembling a kitchen-dining room surrounded by individual bedrooms (the Green House concept before its time). Green’s unique contribution was his discovery that environments structured in this way lead to an entirely new approach to operations-less top-down, more frontline staff autonomy. He found that a director of nursing or, for that matter, a CEO such as himself, was not needed for daily decision making in such an operation, and that the responsibility for this could be moved down the chain-of-command to workers at the front lines, effectively “flattening” the organization. It’s an operational change that many organizations continue to grapple with as they adopt the neighborhood or Green House concepts. But to the extent that long-term care delivery is remodeled in this way, participants working their way through the changes can pretty much bet that Green was there first.

Closing thoughts

These individuals have set the stage for the future. What that future will be depends on what today’s providers will make of the legacies the people mentioned in this article have afforded them. The goal after all this time is still viable: a long-term care system that is high-quality, affordable, cost-effective, and personalized. And it is possible to hope.

Long-Term Living 2011 January;60(1):26-31

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