WHO KNOWS
Judy Feder, professor and dean of policy studies at Georgetown University, and Ken Cameron, executive policy coordinator and director of strategic planning at the Aging and Adult Services Administration, Washington State Department of Social and Health Services, discuss federal and state perspectives on community-based care.
WHAT WORKED IN WASHINGTON
KC: "In many states, the elements-programming, financing and policymaking are spread around too many agencies. It was only when we got hold of the nursing home budget [by combining the Bureaus of Aging and Adult Services and Nursing Home Affairs] that we were able to make major changes. We also had the good fortune to find providers who wanted to make [home and community care] available and contract with them. Finally, continuity of leadership has been important.
COST AND ACCESS
JF: "The primary reason to expand [care] in the community is to get people better services, in settings where most want to live. Providing community services in some cases may make it possible for someone who otherwise was likely to enter a nursing home to stay home, but that is not its primary role. Experience tells us there are a lot of people who would never enter nursing homes but who still are in need of help. When we offer services, we are likely to be serving them as well as people who might have otherwise entered nursing homes...and we should. (This is referred to as the woodwork effect.) [Shifting more money toward home and community-based care] is a way to use our dollars better, but it should not be viewed as a way to save money. The evidence does not support it."
KC: "[We have saved money], in the sense that most states are spending about 80 percent of their long-term care budgets on nursing homes and we're spending about 60 percent. We've taken the growth in the population that needs long-term care that would have gone to nursing homes and diverted it to home and community settings. We have to pay for those people who still are in nursing homes and for investments in quality and training for home and community care. It hasn't been as though we simply took the money from nursing homes and put it in the community-it isn't that simple. We've needed fresh money each time, but we've definitely saved compared to where we would have been."
WOODWORK EFFECT
JF: It's very real because there's underservice in the community. A national survey found that one in five people with disabilities in the community is not getting the services he or she needs, so this should not be viewed as a flawed strategy. The problem is that we've got a population that needs help. That's one of the reasons you're not saving money."
KC: "There is a need to target. In the earlier days, when people worried about latent demand, it was based on the fact that some projects that were too open-they weren't targeted. They were providing services to people who didn't really need them very badly. Through targeting, we have been able to avoid any latent demand to speak of, and there are no waiting lists."
CONSUMER-DIRECTED CARE
JF: "We are in the process of experimenting with it. There has long been demand from the younger disabled community to be in control of their own services; they do not want to be managed. For the elder population, that has been less of an issue, but the idea of a care coordinator who does things with them rather than to them is a reasonable objective. We know that other countries, like Germany, are using cash benefits. It's a concept about which we are learning a lot."
KC: "It's been helpful for younger disabled in particular and for others who have family or friends. It's worked well for us in large part, but we would like to have better supervision and management of those people. We're continuing to make the investments-training, criminal background checks, workforce wages-that strengthen this evolving cottage industry. We're pioneering something and having to continue to make these investments and learn from our experience as we go. Even if we strengthen the management, we're not going to replace the capacity of people to direct their own care."
OLMSTEAD DECISION
JF: "Olmstead should not be interpreted as requiring states to authorize unlimited health care [but] as holding states responsible for appropriately delivering services and avoiding discrimination, and that's what more and more states are doing. What the Court said about appropriate service and expenditure levels is that it is a state policy decision. That means states must have thoughtful policies and articulate what they are willing to do. I think states will vary in their willingness to provide home and community-based services."
KC: "We see Olmstead as a tremendous asset for clients and families and the American health care system, because if you have very vulnerable people who nonetheless have a right to home and community-based care, you can't provide just a $7 per hour exploited worker. You have to provide some connections to medical care, you have to provide some just-in-time nursing, good assessments, a decent information system, a more sophisticated kind of delivery system. Actually, it's a good thing, like civil rights. The legal arena is an ultimate weapon to force the expenditures. We see Olmstead as like just waking up-it's going to have incredible positive repercussions."
STATE AND FEDERAL ROLES
JF: "As states grapple with cost, quality and access issues of long-term care, questions are raised for the longer-term future about whether those are responsibilities that should lie so heavily with the states. States vary in the need for services and in their tax base to provide services, variations that will always be there. But there are reasons to question whether we want as much variation, as demand and need increase. Legislators must recognize that responsibility [for funding long-term care] is theirs in conjunction with the federal government, and they may want to think about whether that policy makes sense."
KC: "We're arguably the leading state in the country, and we're going to have difficulty getting the kind of state money that will be required to meet the needs of this population. And we're only meeting the needs of those who are very poor. Times have changed in terms of the demographics and what health care is -it's no longer primarily hospital care, it's more use of pharmaceuticals. It's increasingly clear that you can't separate long-term and acute care and primary care. To have this thing splintered into 50 states and only serving those with very low income-that is not a workable system."
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