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Health Care Coalition-Building
SPECIAL ARTICLE
Health Care Coalition-Building William L. Minnix, Jr., D.Min, and Charles H. Roadman II, MD Historically, trade associations have tended to confine their efforts to a specific agenda, tailored directly to their membership profile. But now two major long-term care associations have joined forces on a number of fronts in an effort to improve the way this country provides care to its elderly and disabled. DISCUSSION Former Senator Hubert Humphrey stated that the moral test of government is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life, the sick, the needy, and the handicapped. Those words, inscribed on the walls of the US Department of Health and Human Services (HHS) headquarters, are a powerful testament to the invaluable work long-term care providers strive to accomplish each day. Unfortunately, with respect to the elderly, the sick, the needy, and the handicapped, public policy has failed this moral test miserably. For the millions of people who need long-term health care services, and for their families, there is no national, cohesive, or uniform long-term care system, nor is there a sound public policy for addressing the limitations of the current fragmented, underfunded, and often piecemeal system within which we provide care to the nation’s most vulnerable citizens. Consider these scenarios: ●
An elderly woman who lives alone in a low-income housing project was referred to a long-term care provider because she was becoming disoriented and suffering from skin breakdown, ailments caused by malnutrition and flea infestation in her apartment. Her subsequent treatment, which included an inpatient stay at a hospital followed by admission to a nursing facility, cost $25,000. An alternative plan, which would have included a geriatrician for treatment, a nurse for follow-up care, homedelivered meals, and periodic pest control services, would
President and chief executive officer, American Association of Homes and Services for the Aging (W.L.M.), and president and chief executive officer, American Health Care Association (C.H.R.). Address correspondence to Charles H. Roadman II, MD, American Health Care Association, 1201 L Street, NW, Washington, DC 20005.
Copyright ©2002 American Medical Directors Association DOI: 10.1097/01.JAM.0000036694.13971.F7 SPECIAL ARTICLE
●
have cost the system less than $1,000 and would have allowed the woman to remain in her home. A resident in a nursing facility developed pneumonia and other complicated health problems. To avoid transfer to a hospital, he needed a physician’s services daily. The Peer Review Organization denied physician charges for daily visits, insisting that physicians can be paid only for monthly visits. The cost to manage this resident’s pneumonia in the facility would be about $1,200 per week. The approved course of treatment–transfer to a hospital– cost the system about $7,000 for that same week of care and took this resident from his home in a time of crisis.
As these true vignettes illustrate, our frail and elderly citizens face a patchwork of programs that are inefficient, inequitable, and often ineffective to treat their myriad health care needs. Services vary from state to state and from community to community. Significantly, how someone is cared for most often is dependent on the availability of reimbursement and support where the person lives. We aim to change all of that. To us, long-term care means a community network of health and supportive services that helps chronically impaired persons and their caregivers manage their situations over time, place, and provider in the least-restrictive setting they call home. The various components in the long-term care continuum include nursing homes, skilled nursing facilities, adult day care, housing with supportive services, assisted living, intermediate care facilities for the mentally retarded and developmentally disabled (ICFs-MR), and home-based and community-based services. To see our vision become a reality, our associations, which historically have toiled for change alone rather than working together to improve the way the nation delivers care to our elderly and disabled, have joined forces to impact public policy. With financial pressures mounting, the need for access to long-term care is increasing due to the aging of the baby boomer generation. And with regulatory constraints continuing unabated, there has never been a better time for our associations to collaborate to advance a common set of goals. Long-term care providers care for more than 2.4 million of our nation’s disabled, frail, and elderly citizens residing in nursing and assisted living facilities and homes for the developmentally disabled on any given day. While our two organizations have long-standing traditional differences that will continue to be respected, we are creating a common voice in the Administration and on Capitol Hill to reshape long-term care Minnix and Roadman 397
public policy. Amid the clamor, we are more apt to be heard if we collaborate on an advocacy agenda. As leaders who are willing to collaborate, we are focusing on common goals: ensuring a healthy, affordable, and ethical long-term care system that will meet all of our residents’ and patients’ needs; regulatory reforms that protect consumers and providers alike; and expansion of long-term care insurance to cover most Americans. By fragmenting the network of care into nursing homes, assisted living care, home-based and community-based care, and for-profit versus not-for-profit providers, the long-term care community has spent the past decade fighting for the same small piece of the Medicare/Medicaid fiscal pie. In so doing, we have neglected the power of a unified voice. As leaders of long-term care associations, our primary job is to ensure quality long-term health care for our nation’s citizens. Our focus should not be primarily on building our organizations–rather, it should be on attaining our common goals of affordable, accessible, quality care to the elderly and disabled of America. Therefore, we need to focus on the issues, not on the infrastructure, by coming together in focus. CHANGING PUBLIC POLICY Regardless of whether a coalition is national or local, political or social, large or small, several components must come together to make it work. First, there must be a decision to work together by the leadership of each group. Second, those leaders must develop a concise, agreed-upon agenda to advance in the public policy arena. In addition, the leaders must have the determination and stamina to gather the resources to organize and push for change. For a long-term care alliance to have the power to foment change, all of the essential players must be united in the effort: geriatricians, medical directors, administrators, owners, nurse practitioners, charge nurses, nurse assistants, and pharmacists, to name just a few. On the most basic level, alliance members have to build bridges among all of the players to advance common causes. In this case, all long-term care providers are facing an unstable funding system, impending labor crisis, uneven survey and certification system that does not lead to quality, and liability/ insurance issues. Turf battles must be put aside to advance the common goals. It is vital to look at the mission of every alliance member, find overlap and common ground, and establish a common mission to push for together. Leadership then can try to influence public policy as a united front, thereby eliminating the competition that thus far has hampered efforts to enact change in long-term care public policy and financing. Finally, the ability and willingness to change will make or break the success of a coalition. For years, long-term care professionals have tried to enact change by using the same plans, programs, and approaches, while expecting different outcomes. With a coalition, we’re trying a new approach this time, and we do expect different results. At the national level, alliances can be effective in shaping public policy. On the state level, such coalitions can work together to improve the regulatory oversight system or improve public financing of long-term care. Locally, alliances 398 Minnix and Roadman
can provide a true continuum of care so that a citizen can receive the services needed in the most appropriate environment. SHAPING CARE DELIVERY An area that illustrates the value of a coalition at the national level is long-term care financing and delivery. We know that the manner in which long-term care is paid for and provided in our country needs to be overhauled. Together, we have drafted a cohesive, united plan to reform the system, one that embraces the concepts we share, such as access to needed long-term care services; a public/private system that includes social and private insurance; adequate payment to providers of long-term care; and a willingness of the system to support choices across the continuum of care and help maximize personal independence, selfdetermination, dignity, and fulfillment. A unified message written and delivered by a coalition of like-minded groups has an impact that a single voice does not. Part of building a strong coalition means looking for additional areas where we can work together, such as in the area of ethics in long-term care. To strengthen this coalition, the American Health Care Association’s (AHCA) Ethics Committee and the American Association of Homes and Services for the Aging’s (AAHSA) Commission on Ethics in LongTerm Care have been meeting together to draft common goals. We also have coauthored papers and statements on shared public policy positions. Recently, we presented HHS Secretary Tommy Thompson with one such paper that outlines our common goals for healthy, affordable, and ethical long-term care in America. As coalition leaders, we must “walk the walk” and be seen actively and conscientiously working together. The value and importance of a coalition can also be illustrated at the local level, where local partners can provide a real continuum of care. Traditionally, providers tend to focus on the type of care they deliver, needlessly creating a patchwork solution to health care needs. However, as we see over and over again, long-term care is not a “one size fits all” package. Therefore, alliances among providers of different long-term care services can radically change and improve care delivery and services. An example of a local coalition is a health care provider system in Georgia, which wanted to test the idea of an integrated chronic care delivery system that would provide health care resources to a poor, elderly, nursing facility-eligible population. The program, called SOURCE (Service Options Using Resources in Community Environments), and managed through Emory University’s Wesley Woods Center, took the work of providers from across the continuum—from long-term care and assisted living providers to geriatric physicians and nurses to pharmacists and home care networks—to forge an integrated system that eliminated duplication while case-managing frail elderly clients to ensure that all necessary services were provided on time by qualified personnel. The resulting alliance created a nursing home without walls that allowed seniors to remain in their homes while receiving needed services. Much to the delight of policy makers, the program improved quality while reducing exJAMDA – Novemer/December 2002
pense. The state currently is compiling data to demonstrate the fiscal and quality improvements made by the program. Anecdotal evidence shows that the program, which employs case managers to oversee care, has resulted in shorter hospital lengths of stay for program participants versus similar populations not served by the program, as well as a reduction in inappropriate emergency room use. CONCLUSION The lessons of that local alliance are relevant to large organizations trying to effect change on a national or regional level. Significantly, coalition members have to give up pro-
SPECIAL ARTICLE
fessional jealousies and some turf to make such an effort work. Another big factor is trust, which must be built over time by nurturing personal relationships. A coalition— especially between groups competing for the same membership—requires mutual understanding, trust, and a lot of hard work. For us, collaboration on a long-term care reform agenda is simply a way to ensure that our consumers—the elderly, the frail, the disabled, their family members, and long-term care staff—are able to receive and provide quality long term care. Long-term care should be a community network of health and supportive services. Working together helps to make that dream a reality.
Minnix and Roadman 399
Health Care Coalition-Building William L. Minnix, Jr., D.Min, and Charles H. Roadman II, MD Historically, trade associations have tended to confine their efforts to a specific agenda, tailored directly to their membership profile. But now two major long-term care associations have joined forces on a number of fronts in an effort to improve the way this country provides care to its elderly and disabled. DISCUSSION Former Senator Hubert Humphrey stated that the moral test of government is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life, the sick, the needy, and the handicapped. Those words, inscribed on the walls of the US Department of Health and Human Services (HHS) headquarters, are a powerful testament to the invaluable work long-term care providers strive to accomplish each day. Unfortunately, with respect to the elderly, the sick, the needy, and the handicapped, public policy has failed this moral test miserably. For the millions of people who need long-term health care services, and for their families, there is no national, cohesive, or uniform long-term care system, nor is there a sound public policy for addressing the limitations of the current fragmented, underfunded, and often piecemeal system within which we provide care to the nation’s most vulnerable citizens. Consider these scenarios: ●
An elderly woman who lives alone in a low-income housing project was referred to a long-term care provider because she was becoming disoriented and suffering from skin breakdown, ailments caused by malnutrition and flea infestation in her apartment. Her subsequent treatment, which included an inpatient stay at a hospital followed by admission to a nursing facility, cost $25,000. An alternative plan, which would have included a geriatrician for treatment, a nurse for follow-up care, homedelivered meals, and periodic pest control services, would
President and chief executive officer, American Association of Homes and Services for the Aging (W.L.M.), and president and chief executive officer, American Health Care Association (C.H.R.). Address correspondence to Charles H. Roadman II, MD, American Health Care Association, 1201 L Street, NW, Washington, DC 20005.
Copyright ©2002 American Medical Directors Association DOI: 10.1097/01.JAM.0000036694.13971.F7 SPECIAL ARTICLE
●
have cost the system less than $1,000 and would have allowed the woman to remain in her home. A resident in a nursing facility developed pneumonia and other complicated health problems. To avoid transfer to a hospital, he needed a physician’s services daily. The Peer Review Organization denied physician charges for daily visits, insisting that physicians can be paid only for monthly visits. The cost to manage this resident’s pneumonia in the facility would be about $1,200 per week. The approved course of treatment–transfer to a hospital– cost the system about $7,000 for that same week of care and took this resident from his home in a time of crisis.
As these true vignettes illustrate, our frail and elderly citizens face a patchwork of programs that are inefficient, inequitable, and often ineffective to treat their myriad health care needs. Services vary from state to state and from community to community. Significantly, how someone is cared for most often is dependent on the availability of reimbursement and support where the person lives. We aim to change all of that. To us, long-term care means a community network of health and supportive services that helps chronically impaired persons and their caregivers manage their situations over time, place, and provider in the least-restrictive setting they call home. The various components in the long-term care continuum include nursing homes, skilled nursing facilities, adult day care, housing with supportive services, assisted living, intermediate care facilities for the mentally retarded and developmentally disabled (ICFs-MR), and home-based and community-based services. To see our vision become a reality, our associations, which historically have toiled for change alone rather than working together to improve the way the nation delivers care to our elderly and disabled, have joined forces to impact public policy. With financial pressures mounting, the need for access to long-term care is increasing due to the aging of the baby boomer generation. And with regulatory constraints continuing unabated, there has never been a better time for our associations to collaborate to advance a common set of goals. Long-term care providers care for more than 2.4 million of our nation’s disabled, frail, and elderly citizens residing in nursing and assisted living facilities and homes for the developmentally disabled on any given day. While our two organizations have long-standing traditional differences that will continue to be respected, we are creating a common voice in the Administration and on Capitol Hill to reshape long-term care Minnix and Roadman 397
public policy. Amid the clamor, we are more apt to be heard if we collaborate on an advocacy agenda. As leaders who are willing to collaborate, we are focusing on common goals: ensuring a healthy, affordable, and ethical long-term care system that will meet all of our residents’ and patients’ needs; regulatory reforms that protect consumers and providers alike; and expansion of long-term care insurance to cover most Americans. By fragmenting the network of care into nursing homes, assisted living care, home-based and community-based care, and for-profit versus not-for-profit providers, the long-term care community has spent the past decade fighting for the same small piece of the Medicare/Medicaid fiscal pie. In so doing, we have neglected the power of a unified voice. As leaders of long-term care associations, our primary job is to ensure quality long-term health care for our nation’s citizens. Our focus should not be primarily on building our organizations–rather, it should be on attaining our common goals of affordable, accessible, quality care to the elderly and disabled of America. Therefore, we need to focus on the issues, not on the infrastructure, by coming together in focus. CHANGING PUBLIC POLICY Regardless of whether a coalition is national or local, political or social, large or small, several components must come together to make it work. First, there must be a decision to work together by the leadership of each group. Second, those leaders must develop a concise, agreed-upon agenda to advance in the public policy arena. In addition, the leaders must have the determination and stamina to gather the resources to organize and push for change. For a long-term care alliance to have the power to foment change, all of the essential players must be united in the effort: geriatricians, medical directors, administrators, owners, nurse practitioners, charge nurses, nurse assistants, and pharmacists, to name just a few. On the most basic level, alliance members have to build bridges among all of the players to advance common causes. In this case, all long-term care providers are facing an unstable funding system, impending labor crisis, uneven survey and certification system that does not lead to quality, and liability/ insurance issues. Turf battles must be put aside to advance the common goals. It is vital to look at the mission of every alliance member, find overlap and common ground, and establish a common mission to push for together. Leadership then can try to influence public policy as a united front, thereby eliminating the competition that thus far has hampered efforts to enact change in long-term care public policy and financing. Finally, the ability and willingness to change will make or break the success of a coalition. For years, long-term care professionals have tried to enact change by using the same plans, programs, and approaches, while expecting different outcomes. With a coalition, we’re trying a new approach this time, and we do expect different results. At the national level, alliances can be effective in shaping public policy. On the state level, such coalitions can work together to improve the regulatory oversight system or improve public financing of long-term care. Locally, alliances 398 Minnix and Roadman
can provide a true continuum of care so that a citizen can receive the services needed in the most appropriate environment. SHAPING CARE DELIVERY An area that illustrates the value of a coalition at the national level is long-term care financing and delivery. We know that the manner in which long-term care is paid for and provided in our country needs to be overhauled. Together, we have drafted a cohesive, united plan to reform the system, one that embraces the concepts we share, such as access to needed long-term care services; a public/private system that includes social and private insurance; adequate payment to providers of long-term care; and a willingness of the system to support choices across the continuum of care and help maximize personal independence, selfdetermination, dignity, and fulfillment. A unified message written and delivered by a coalition of like-minded groups has an impact that a single voice does not. Part of building a strong coalition means looking for additional areas where we can work together, such as in the area of ethics in long-term care. To strengthen this coalition, the American Health Care Association’s (AHCA) Ethics Committee and the American Association of Homes and Services for the Aging’s (AAHSA) Commission on Ethics in LongTerm Care have been meeting together to draft common goals. We also have coauthored papers and statements on shared public policy positions. Recently, we presented HHS Secretary Tommy Thompson with one such paper that outlines our common goals for healthy, affordable, and ethical long-term care in America. As coalition leaders, we must “walk the walk” and be seen actively and conscientiously working together. The value and importance of a coalition can also be illustrated at the local level, where local partners can provide a real continuum of care. Traditionally, providers tend to focus on the type of care they deliver, needlessly creating a patchwork solution to health care needs. However, as we see over and over again, long-term care is not a “one size fits all” package. Therefore, alliances among providers of different long-term care services can radically change and improve care delivery and services. An example of a local coalition is a health care provider system in Georgia, which wanted to test the idea of an integrated chronic care delivery system that would provide health care resources to a poor, elderly, nursing facility-eligible population. The program, called SOURCE (Service Options Using Resources in Community Environments), and managed through Emory University’s Wesley Woods Center, took the work of providers from across the continuum—from long-term care and assisted living providers to geriatric physicians and nurses to pharmacists and home care networks—to forge an integrated system that eliminated duplication while case-managing frail elderly clients to ensure that all necessary services were provided on time by qualified personnel. The resulting alliance created a nursing home without walls that allowed seniors to remain in their homes while receiving needed services. Much to the delight of policy makers, the program improved quality while reducing exJAMDA – Novemer/December 2002
pense. The state currently is compiling data to demonstrate the fiscal and quality improvements made by the program. Anecdotal evidence shows that the program, which employs case managers to oversee care, has resulted in shorter hospital lengths of stay for program participants versus similar populations not served by the program, as well as a reduction in inappropriate emergency room use. CONCLUSION The lessons of that local alliance are relevant to large organizations trying to effect change on a national or regional level. Significantly, coalition members have to give up pro-
SPECIAL ARTICLE
fessional jealousies and some turf to make such an effort work. Another big factor is trust, which must be built over time by nurturing personal relationships. A coalition— especially between groups competing for the same membership—requires mutual understanding, trust, and a lot of hard work. For us, collaboration on a long-term care reform agenda is simply a way to ensure that our consumers—the elderly, the frail, the disabled, their family members, and long-term care staff—are able to receive and provide quality long term care. Long-term care should be a community network of health and supportive services. Working together helps to make that dream a reality.
Minnix and Roadman 399