What's Next?: For Long Term Care's New Coalition. (Cover Feature).

In the immediate aftermath of the September 11 terrorist attacks on America, it seemed as though the prospects for long-term care reform legislation couldn't be worse. Federal legislators were focused, understandably, on crafting a military/legal response to terrorism, while hastening to come up with fiscal solutions to a faltering national economy. The waning months of 2001 seemed hardly the time to explore bold new initiatives in social policy. And yet the problem of a disorganized healthcare system unprepared for rapidly growing long-term care demands didn't go away. In terms of numbers of Americans affected directly or, as adult children, indirectly, long-term care needs continue to grow. Which might explain why Citizens for Long Term Care (CLTC), an unprecedentedly broad coalition of provider, business, union and consumer organizations, continues to forge ahead with spreading the reform gospel. This spring CLTC issued a report, Defining Common Ground: Long Term Care Financing Reform in 2001. Though the d ate has lost significance, the campaign continues. Recently, CLTC Chairman David Durenberger, a former Republican senator from Minnesota and healthcare legislative activist in the 1980s and early '90s, discussed his organization's perspective on the recent disruptions and prospects for the immediate future. Questions were posed by Nursing Homes/Long Term Care Management Editor Richard L. Peck.

Peck: What is your overall view of the prospects for meaningful action on longterm care any time soon?

Durenberger: It's clear that with the combination of an economy unable to generate large revenues for the foreseeable future, current fiscal concerns and the costs of war, we don't have the financial cushion we had to do reform. And, of course, the legislators are focused on many other things, not least of which is the midterm election next November. I think, though, that here is where we might reach a turning point.

The public has become much more aware of the need for responsible government. From our standpoint, I think the search for responsible government solutions will tie in directly with our coalition's slogan of "finding a better way.

Peck: Some say, from a political standpoint, that the heightened interest in government solutions plays to the Democrats' advantage, since they are perceived as the "party of government."

Durenberger: I think it's just the opposite. What's interesting is that conservative Democrats, who are always seeking ways to work with Republicans, have taken the lead, in the person of Senator John Breaux (D-La.), in defining the longterm care financing problem by holding a series of congressional hearings on it this year.

Peck: What parts of the current legislative agenda do you think are "advancing the cause" of long-term care reform?

Durenberger: Right now the Senate Aging Committee hearings, which CLTC worked hard to encourage, have been an important focal point. Also, the Centers for Medicare and Medicaid Services (CMS) is focusing on regulatory reform for healthcare in general and long-term care in particular, and that advances the cause. Beyond that, we are working our wayinto the debates before Congress right now on Medicare, Social Security and tax policy and, specifically, long-term care, and we are trying to show that each is an important long-term care issue.

Peck: Isn't the coalition risking becoming too diffuse by spreading itself so widely?

Durenberger: It's almost the opposite. The term "long-term care," in itself, means different things to different people, and this has made it difficult for people to focus on the issue. For example, I recently read a paper on the long-term care workforce issue focusing exclusively on care of the elderly. It neglected the fact that younger, disabled people were actually the fastest-growing component of long-term care today. The focus really should be on managing disability, not simply on dealing with aging.

When you look at it in this way, the issue begins to broaden. You find that you need a national policy of financing that is individualized to people's needs across the board--a national policy that provides, at least, a backup to private arrangements for long-term care, such as long-term care insurance.

Peck: What is your view of the Medicaid situation right now?

Durenberger: We take the position that the current welfare-based approach--where you live determines your choice and quality of healthcare services--just won't work over the long term. An issue that is definitely going to surface next year, and with probable action taken in 2003, is that of state vs federal responsibility for long-term care. Right now we have 50 different state programs, and each state is trying to solve its own problems in its own way. According to a preliminary National Conference of State Legislatures (NCSL) report, state Medicaid spending grew 14.1% in fiscal year 2000 and 73% for the elderly and disabled. That number will grow much more this fiscal year. Many states plan to cut back on provider payments and, when that happens, the current system will start breaking down.

Because of this, I think we now have an opportunity to engage the governors, the NCSL and President Bush, himself a former governor, on this issue and to do so sooner rather than later.

The provider associations are supporting restoration of the Boren Amendment to improve Medicaid payments, but their true interest is to get out of Medicaid altogether and help create a viable financing system.

Peck: What, specifically, is CLTC doing to broaden the debate along the lines you've suggested?

Durenberger: For one thing, we are forming an Entitlement Review Consortium

of some of the most prominent healthcare policy analysts of the past 10 years. With money from the Kaiser Foundation, we are putting together a report that will demonstrate to Congress the long-term care financing "wedge" in Social Security, tax policy and Medicare. By broadening the analysis, we'll be taking Defining Common Ground to a higher level. It's the sort of information that Congress is looking for.

We are also doing a paper on the long-term care workforce issue, which is of such major importance these days. In this case, we are seeking common ground among our member organizations, which include a variety of professional, worker and patient organizations. We're the only coalition in America that has such a diverse membership, and we want to take the trust that has developed among the members over the past several months and move it to a new level. This paper and the entitlement paper should both be publicly available around March next year.

Peck: Is CLTC doing anything to directly address public awareness of this issue?

Durenberger: As a coalition, we don't have the resources, but each member organization has its own opportunities in this area. I will say, though, that even though this problem is getting bigger all the time, it still hasn't made a breakthrough in the public's political awareness. Part of the problem might be that no one has perceived an "easy way out," a simple solution that could be debated politically. That is what you need to generate political discussion about an issue.