6 Tips for Fixing Long-Term Care in America

(This article originally appeared on the PBS NewsHour site.)

Every day for the past two years, about 10,000 baby boomers have turned 65. And every day until 2029, about 10,000 more will do the same.

For many, it's just another birthday. But taken as a whole, the pace of those birthdays is a stark reminder of how quickly the U.S. is aging — and how unprepared the nation may be.

Consider the following:

• When the last of the boomers turns 65 in 2030, about 1 in 5 Americans will be 65 and older.
• The number of people in the U.S. with chronic conditions will have increased by 37 percent between 2000 and 2030.
• Most Americans over 65 will need about three years of long-term care.
• Nursing home care runs roughly $72,000 per year, on average. Add it up and many Americans could be facing bills of $216,000 or more. And contrary to popular belief, it's usually not covered by Medicare.

So what's the U.S. doing to prepare? Virtually nothing. The federal government has no plan in place, and things are bleaker still on the personal front. Just 35 percent of Americans have set aside money for their long-term care needs, and most haven't even taken the basic step of talking with their family about their preferences.

(MORE: How Government Could Cut Long-Term Care Costs)

But look close enough and the news becomes a little brighter. In communities throughout the country, residents are pulling together to help each other save money, stay active and live in their own homes longer. On the international stage, places like Finland and Taiwan have found success, too.

That's why a collection of the nation's top experts on long-term care gathered at historic Eastern Market on Capitol Hill in Washington, D.C. on Monday, to discuss ideas for fixing the nation's long-term care system.

Many agreed that it's time for U.S. policymakers to start taking stock of those ideas and bringing them to scale. The forum, titled "Global and Regional Models for Long-Term Care: Can They Work Nationally?" was hosted by the PBS NewsHour's parent company, MacNeil/Lehrer Productions, and the SCAN Foundation, an underwriter of the NewsHour's health unit.

While the issue can be daunting in scale on the national level and difficult to confront personally, it all boils down to one thing, said Dr. Bruce Chernof, president of the foundation and chair of the federal government's recent Commission on Long-Term Care. "All of us want to age with dignity, independence and choice," Chernof said at the forum. "For some people, that might mean being in a nursing home because your needs are so great, that's the best and the safest place. But for most of us, it's about being in the homes and communities we choose, around the people that we love and circle of friends that support us. And that's a really different mindset when it comes to providing and planning for long-term services and supports."

(MORE: Suze Orman's Advice on Managing Long-Term Care Costs)

We put together a list of "6 tips" for improving the U.S. long-term care system — one each from our six influential panelists. (You can watch the NewsHour's long-term care special in its entirety at the bottom of this article.)

Tip 1: Keep it Local
 
Howard Gleckman is author of the book Caring for Our Parents and writes frequently on long-term care issues. He's a contributor to Forbes Magazine and a resident at the Urban Institute.

Howard Gleckman: I would suggest community and bottom-up solutions. One of the real problems we've had in this country is trying to find the single answer. In truth, there are probably many different answers, and different communities are going to come up with different solutions. To the degree that we can, government can at least try to stay out of the way of those solutions, and perhaps even take the next step and encourage them.

So there's a lot you can do in terms of helping people stay at home — that neighbors and friends can do for one another. Of course, there comes a time when people need professional help being bathed or fed — or they may need adult diapers changed. At that point, you really can't expect neighbors to do that. But there's a lot you can do before you get there that neighbors can do to help people live comfortable, better lives at home. And that's the main idea of most of these community-based programs. It may be providing transportation, it might be friendly visits, it might be meals.

(MORE: Why Long-Term Care is Headed for a Crisis)

Some communities have created "villages" within their community to achieve this through different models: there are villages that require membership and pay dues, there are some that have a professional staff, some are all-volunteer, some are related to faith-based organizations. I've even seen hospitals and nursing homes doing outreach into their communities to achieve similar goals.

The one issue that concerns me a little bit about the village model is that, for the most part, it seems to be working for upper-middle-class, highly educated white people. For some reason, we haven't found the key to make this particular design work in lower-income and minority communities. Which is why maybe it's not going to be a village movement for those populations. Maybe it's going to be something different, or maybe it's going to be a village but a different version of a village. So that's why I say those kinds of local organizations should figure this out for themselves, and the role of government, the role of nonprofits, should be to support those solutions.

Tip 2: Change the Financing

Dr. Mark McClellan is a senior fellow and director of the Health Care Innovation and Value Initiative at the Brookings Institution. A doctor and economist by training, he's a former commissioner of the Food and Drug Administration and former administrator of the Centers for Medicare and Medicaid Services.

Dr. Mark McClellan: One important way to make long-term care work better in the United States is to move our financing away from silos, where we have separate funding for Medicaid, separate funding for out-of-pocket costs, separate funding for acute health care costs. We need to put it together and let people control how that money is spent on their behalf. That's what's behind our "Money Follows the Person” initiatives in states around the country, that's what's behind integrated care approaches in states like Minnesota. All of those steps are important for getting to better long-term care at a more sustainable cost.

These programs get implemented at the local level, but they depend a lot on federal and state funding, and traditionally, our funding has gone to institutions like long-term care facilities, and not to the individuals who use those institutions. So putting more of those dollars under the control of individuals can lead to better outcomes and lower costs. People can use those resources to stay in the community. They can use those resources to help get coordination of services to prevent avoidable hospitalizations. They can stay out of the nursing home and avoid other very costly outcomes that otherwise we'd have to pay for on the health care side.

Tip 3: Focus More on the Poor

Dr. E. Percil Stanford is the president of Folding Voice and the KIND Corporation, a San Diego-based group that provides housing for low-income older people. His focus on gerontology has been cross-cultural, diverse and global.

Dr. E. Percil Stanford: During the past several decades, long-term care policies and programs have gained significant momentum at the state and federal levels. Unfortunately, considerable attention from the most well-intentioned institutions and organizations has focused primarily on the middle and upper classes. Personal savings and private insurance are not impact areas that reform or vastly improve the quality of long-term care for millions of poor older people. According to some sources, the percent of poor people 65 and older has been as high as 23 percent during the past three years. The quality gap in long-term care and support services for the aged poor and other poor people must be closed.

Science and technology with appropriate design strategies can lead the way for continuing to explore culturally appropriate and economically feasible approaches to long-term care services and supports. Long-term care policy developers have the challenge to design policies that ensure that poor older people, regardless of ethnicity, sexual orientation or religion, receive quality services and supports in a dignified and respectful manner. As more poor people age, it is essential to rethink how to design policies that directly address the long-term care of all deserving citizens.

To ensure that current and emerging millions of poor and near-poor individuals, particularly the aged, have equal access to long-term care services and supports, existing federal, state and local agencies and organizations should be charged with having a laser-like focus on this burgeoning wave of potential long-term care recipients. A mandate of this nature becomes more urgent as the non-white population in the United States approaches a majority. The shape, size and texture of this emerging long-term care segment is novel in many dimensions and cannot be glossed over.

Tip 4: Build a Comprehensive National Strategy

Debra Whitman is AARP's executive vice president for policy, strategy and international affairs. She's an authority on aging issues with extensive experience in national policymaking.

Debra Whitman: The United States is vastly unprepared to meet the long-term care needs of our rapidly aging society. While some states and local communities are developing innovative systems, we need a comprehensive national strategy to help people remain in their homes as they age. The strategy should include:

• Concrete steps to ease the burden on family caregivers — the invisible army of over 42 million individuals who care each day for their family or friends, often at great personal cost.
• Steering more resources in public programs like Medicaid towards care in one's home and away from institutions.
• New ways of thinking about local communities, and the supports they offer to optimize independence -- including developing more houses, apartments and transportation systems that are accessible and affordable.
• Better integration with health care services and expanded use of technology to help people live independent, secure and engaged lives as they age.

A more effective, seamless financing system that enables individuals and families to pay for services they need without having to impoverish themselves.

Tip 5: Begin the Conversation

Jennie Chin Hansen, is CEO of the American Geriatrics Society, the nation's leading membership organization of geriatrics health care professionals. She worked for more than 25 years with On Lok, a nonprofit organization in San Francisco that became a model for the federal law that incorporated the program of all-inclusive care to the elderly called PACE into the Medicare and Medicaid program.

Hansen: With most of us having or having had the experience of a loved one or friend who lives the complex set of experiences often called long-term assistance or care, these are the moments of opportunity to begin the conversation of how we might experience that journey ourselves. Current research shows that seven of 10 of us will require longer-term assistance, sometimes modest but often significant over a period of years. It's not easy to think about and embrace but likely present in our awareness. If we are women, this is even more significant due to our greater longevity and often less financial security.

We need to dip our toes in that conversation before we find ourselves actually living that experience. Let's take those opportunities to "chat and chew" with our friends and colleagues and have those conversations when one of us happens to be the "carer" living this rather universal story. Consider it a "study group" opportunity as we discuss the universal journey — covering topics as to who can and will provide support (our network) where we hope to reside (where we live), how much we might need to live on (our money and affordability) and what is most important to us along the way, but especially when life becomes most challenging (expressing our hopes and wishes). Let's proactively help each other build greater confidence, clarity and capacity.

Tip 6: Make It a Human Right

Laura Gitlin is a professor and founding director of the Center for Innovative Care in Aging at Johns Hopkins. Most recently, she has been working in Chile on a community-based model of care for older adults with dementia.

Dr. Laura Gitlin: We need to grow a long-term care system based on multiple principles, and one principle I believe — which is an integral part of the Finnish model — is that long-term care is a basic right. Finland has a government-sponsored approach to long-term care, and it's included in their equivalent of a Bill of Rights. They're coming up with all different ways of operationalizing that basic principle. And I believe we need to start with that premise in the United States: long-term care is a basic right.

From there, we need to expand on our understanding of what long-term care is and what long-term care needs are. So it's not just about self-care and instrumental activities but it's really about the entire gambit of needs that older adults have, particularly those with complicated conditions such as co-morbidities and functional limitations. So it's not just about enabling people to be able stay at home and have their self-care and instrumental activities needs met, but also to have other, equally important needs met, such as engagement in meaningful activities and socialization and integration into the community. So I think that our understanding of long-term care needs to actually expand in our understanding. It has to encompass a family-centered approach, not just the person. Without seeing the person within their total environment of home, family and community, we're not going to address the long-term care needs of older adults.

I also think that in the United States, it isn't going to be one system. One system does not meet all the different needs of individuals, whether they be very poor or the near-poor or those that can afford long-term care insurance. We're going to have to come up with mixed models and strategies and probably a lot of private-public partnerships and involvement of the community. So it's going to look different, I think, than in other countries, and it's going to have to be more complex.

Watch the PBS NewsHour's complete Long-Term Care Program here: