U.S. Sen. Feingold: Congress Should Look to Wisconsin as Model for Long-Term Care Reform

From RacineNews.org (7/11/09)

I recently spoke to my colleagues about the urgent need to pass health care reform, and in particular about the importance of ensuring that reform includes a strong public option. Today, I want to discuss another one of my priorities for health care reform, and that is long-term care.

I had the opportunity to work to reform long-term care since I began my career in public service. In 1982, during my first term as a Wisconsin State Senator, I became Chair of the State Senate Aging Committee. I was not yet 30 years old, so you can imagine that I was not the obvious candidate to chair a committee on aging. It was through my work on this committee that I was first exposed to the fractured system of supports and services available to those needing long-term care, and learned about the efforts to reform that system which were just beginning in Wisconsin. Over the next 10 years I made long-term care reform a priority, authoring the state’s Alzheimer’s program and drawing attention and resources to the management of this devastating disease. I had a chance to help expand Wisconsin’s Community Options Program, known as COP, which provided flexible, consumer-oriented and consumer-directed long-term care services in community-based settings, enabling thousands of people needing long-term care to remain in their own homes rather than have to go to a nursing home.

I have continued to fight for long-term care reform in the United States Senate. I served as Chair of the Long-Term Care Working Group at the request of then-Majority Leader George Mitchell during the 1994 attempt at health reform. The recommendations of our working group proved to be one of the least controversial aspects of health reform legislation. Our recommendations drew from the lessons and experiences of states on the cutting edge of long-term care, like Wisconsin. But when overall reform efforts failed, our recommendations went nowhere.

Now, 15 years later, Congress is debating health reform legislation once again. And reform is even more necessary than it was in 1994. More and more families are struggling to provide care for loved ones who are disabled, ill, and aging. More and more families face the difficult decision of moving a loved one into a nursing facility because no other options sometimes exist. These families are stuck in an impossible situation – limited by financial resources and community programs, but dedicated to securing the best care for their family member. We can and must do better.

Long-term care reform is not a luxury, or a minor part of health care reform – it is needed in order to help achieve the goals of health care reform. Federal, state, local, and individual expenditures on health care, including long-term care, are unsustainable. In 2007, the federal and state governments spent $311 billion on long-term care, or just under three percent of the United States’ gross domestic product. Approximately three quarters of this amount represents government spending on Medicaid and Medicare. Long-term care reform could be one of the most effective tools to ensure solvency for our entitlement programs, reducing the Medicaid burden on state budgets, and getting health care spending under control.

I have worked on these issues for the better part of three decades. And after devoting so much time to long-term care, I think a number of things are clear. First, we must have a cohesive strategy to care for those needing long-term supports and services. Modern medicine has turned fatal diseases sometimes into chronic diseases, and enabled individuals to live much longer. These are tremendous accomplishments. But the reality is that these individuals need even more assistance because of some of these medical advancements – from their families, communities, and government.

Long-term care assistance is not something that most people can plan for, or save for. This is a very important point. Of the 10 million Americans needing long-term care, 40 percent were working-age adults or children who have become disabled, or too ill, to live independently. This is something that the Trifunovich family in Cudahy, Wisconsin knows all too well. At 33, Aleksandar Trifunovich suddenly suffered a deadly brain stem stroke, cruelly leaving him “locked in” – his brain function, eyesight, and hearing remained normal, but his entire body was paralyzed. Against all odds, Aleksandar survived surgery and has made miraculous development through rehabilitation. Today, Aleksandar is no longer “locked in,” but he fights every day to preserve the progress he’s made, and regain even more of his mobility. Along the way, his sisters Vera and Andjelija have stepped in, as so many family members do, to support and care for their brother. The family is acutely aware of the current fractured long-term care system. Calling it “un-navigable,” they say it is a daily battle to ensure Aleksandar has access to the care, supports, and services he needs to continue regaining his mobility and his independence.

As for the 60 percent of older Americans and senior citizens needing long-term care, who theoretically might have had time to save for these medical needs, financing long-term care on their own is simply too expensive. Not only is the cost of long-term care growing at twice the rate of inflation, seniors are using long-term care supports and services earlier and more often. And families are feeling the strain. Studies estimate that over 85 percent of long-term care is provided by family and friends, but the cost of providing care and forgoing earnings elsewhere is not included in projections of long-term care spending. Long-term care reform is not an issue of making people be more responsible, save earlier, or save more – it’s needed because the system, on a fundamental level, is strained to the breaking point.

Second, we do not necessarily need to spend more, but we must spend more wisely. This means establishing consumer-oriented and consumer-directed flexible benefits as well as making fundamental reforms to the linkages between the long-term care and acute care systems. For too long, long-term care has been synonymous with institutional care. Congress now has a rare opportunity to redefine long-term care, and put real weight and spending power behind home- and community-based long-term care options.

Central to this effort is creating a system of home- and community-based flexible services that respond to individual consumer choice and preference from the initial assessment right on through the ongoing services, with case managers and others regularly consulting with the consumer and family members to be sure their needs are met in a satisfying manner. I have been working with my colleagues on the Senate Finance Committee and Senate Health, Education, Labor and Pensions Committee for months now, to try and draw attention to the excellent programs we have in my home state of Wisconsin as we begin to fill the gaps in long-term care supports and services. Wisconsin’s progress in long-term care should be used as a template for national reform, and I was pleased that Chairman Baucus included new incentives for home and community-based care programs like those Wisconsin in today in the policy proposals he put forward earlier this year.

Wisconsin’s progressive tradition is the driving force behind Family Care, our state entitlement program for low-income and disabled adults to receive necessary care, supports, and services in their homes and communities. Family Care currently operates in almost every county in the state, and provides a flexible benefit for beneficiaries to receive long-term care supports and services in the comfort of their own homes. Family Care has demonstrated two important things: First, it showed that you can establish a long-term care program that is flexible and able to respond to the needs of individual consumers; second, it showed that kind of flexible program could be a cost-effective alternative to nursing homes.

Family Care coordinates consumers with social workers, registered nurses, and local Aging and Disability Resource Centers to identify what each consumer needs to remain a productive and independent citizen. Entitlement benefits can be used for such purposes as hiring help with basic daily tasks like bathing, dressing, or shopping, or with challenges like shoveling snow, which in as you in some states like Wisconsin is not a trivial task.

Because of this benefit, long-term care consumers in the state are choosing to stay in their own homes, and saving the state money in the process. One independent assessment of Family Care estimates that the program saves the state $1.2 million each month by allowing long-term care consumers to arrange for the care they need to remain independent, and out of the nursing home. If overwhelming popularity and savings weren’t enough, counties with Family Care have seen decreases in nursing home admissions, emergency room use, and hospital re-admittance. Instead, long-term care consumers are seeing their primary care physicians more to maintain and manage their health.

How we care for those who need it most – seniors, people with disabilities and other who need long term care – is of course a key part of any effort to change our health care system. I have thought often of my work as Chair of the Long Term Care working group over the last 15 years. If just those recommendations we put together back then had been enacted, we might not be spending the trillions on health care that we are today. We can’t continue to make the mistake of over-looking long term care in the broader debate. Congress must place this critical issue front and center in the health care debate. It’s time to put long-term care in the spotlight, and use Family Care, Wisconsin’s outstanding example of flexible and cost-effective care, as a model for broader reform.

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