In the past few weeks, no fewer than three highly respected groups have proposed major health care reforms. They all promise greater use of patient-centered integrated care, but none include supports and services for frail elders or younger people with disabilities.

It took four decades to incorporate a drug benefit into Medicare. Now we seem to be in the same place with supports and services for people with chronic disease. If you were building a health system from scratch, you’d never leave out the non-medical assistance people need to help manage chronic illness—say, help with personal hygiene.

It makes no sense to include physical therapy as part of a plan of care if a patient has no way to get to the therapist. The greatest electronic medical record in the world can’t help someone who is malnourished because she can no longer shop or cook for herself.

Yet, none of these ambitious plans, which otherwise have a lot to offer, integrates such care into a new health system.

Maybe the authors are too focused on traditional medical treatment. Maybe they worry about what they fear will be the added cost—though done right, integrating health and personal care could save money. Maybe they don’t want to open the political can of worms that is long-term care.

But the health challenge for most seniors is chronic disease, and the aim of good care ought to be preventing chronic, manageable conditions from spiraling into acute episodes that result in costly and debilitating hospitalizations.  And a good way to do that may be to provide a modest suite of personal services and supports to these patients.

But none of these plans includes such a design.

All aim to improve care and save money.  All are built on better coordinating care. And all would reward both providers and patients for participating in health plans that provide high-quality care at low cost.

The first proposal comes from Cathy Schoen and Stuart Guterman of the Commonwealth Fund and Karen Davis, the long-time head of Commonwealth who is now at the Johns Hopkins Bloomberg School of Public Health. They propose a program called Medicare Essential which would combine the program’s hospital, physician, and drug coverage (Parts A, B, and D) into a single integrated benefit.

The second plan was designed by the Bipartisan Policy Center, a Washington think-tank, and is aimed at cost containment and quality improvement. It proposes broad system reforms, including a new Medicare design it calls as Medicare Networks. It too focuses largely on medical care. There is a role for nursing facilities and home health agencies, but only as post-acute care providers. These networks would provide some care coordination for those with chronic disease, but not delivery of long-term supports and services.

The third plan was sponsored by the Brookings Institution but designed by a group of health experts from across the policy spectrum including former Medicare and Medicaid administrators Mark McClellan and Mike Leavitt, former OMB directors Peter Orszag and Alice Rivlin and health policy analysts such as Katherine Baicker, Michael Chernew, and David Cutler of Harvard, and Mark Pauly of the Wharton School. Two members, Rivlin and former Senator Tom Daschle, also served on the BPC panel.

This model, like the BPC plan, would make major changes in both Medicare and Medicaid (as well as in the broader health delivery system). It contemplates some limited models of care integration for those who are dually eligible for both Medicare and Medicaid (something many states are already doing). However, its proposal to move Medicare to what it calls Medicare Comprehensive Care is a different story.

It too recognizes the needs of elders with multiple chronic disease, but seems to include only care coordination services, not the added personal care itself within its integrated care model.

Don’t get me wrong. All of these plans are ambitious and all seem to anticipate the political system’s drive towards better integrated care. But they ignore a critical piece of the puzzle for 12 million people now receiving long-term supports and services, a number than will double by 2030. Medical care alone, no matter how good it is, will not improve the quality of life for these people and their caregivers.

The smart people who designed these new reforms need to think a bit more creatively for that to happen.

Yesterday morning, a veteran of the decades-long effort to improve the way we deliver and pay for long-term supports and services asked me a question. Why, he wondered, should he believe that recent attempts to reform long-term care could succeed when so many previous initiatives have failed.  Last evening, I may have found an answer.

My wife and I went to see a powerful play called How to Write a New Book for the Bible.  It is an unsparing look at the real-life experiences of the author, Bill Cain, who cared for his mother during the last year of her life. Cain, a Jesuit priest and writer, absolutely nailed the reality of caregiving— the pain, the intimacy, and even the humor.

But the play got me thinking about my friend’s question: How is it different this time? The answer may be that caregiving is finding its way into the arts and popular culture in ways that it never has before.  And that may both reflect changing public opinion and drive policy reform in ways traditional lobbying cannot.

Think about films such as Amour, the 2013 Academy award winner about an aging couple struggling with profound physical decline; and Quartet, a 2012 Dustin Hoffman-directed film about the residents of a senior community. Or the shelf full of memoires by the famous and semi-famous who became caregivers for parents or spouses. Or novels such as Walter Mosley’s brilliant The Last Days of Ptolemy Grey.

Recently, a choreographer approached my wife, who is a hospice chaplain, about doing a joint project. She wants to use dance to tell the stories of people approaching  death.

Not long ago, books and movies about aging or caregiving would never have been done. Plays like Cain’s would barely get a reading. “Who’d pay to see it,” some bean-counter would ask.

But something has changed. Now, people do pay to see it.

Culture and the arts have gotten way ahead of policymakers. They see that aging and caregiving are beginning to resonate with the public. Inevitably, the pols—who are always a lagging indicator of public perception—will catch up.

The public isn’t quite there.  A recent public opinion poll by the Associated Press and NORC Public Affairs Research found that one-third of Americans 40 and older would rather not think about old age at all.

Yet, half recognized that nearly everyone will need some personal assistance before they die. More than half said they were currently, or had been, caregivers.

And as artists and writers reflect these experiences, it magnifies people’s awareness. And their audiences will ask why public policy and the health system are failing them.

It wouldn’t be the first time the arts have helped lead change. Think about civil rights in the 1960s or AIDs research in the ‘80s and ‘90s. Or, more recently, issues as disparate as immigration, terrorism, and climate change. In each case, policy responds in part to the ability of culture and the arts putting a powerful face on those half-formed public perceptions.

And these stories will increasingly resonate with lawmakers. They are facing their own caregiving challenges and hear more stories from their constituents. They still have not quite connected these experiences with the need for policy change, but they are getting there (trust me, no-one is more risk-averse and resistant to change than your typical elected official).

The answer to my friend’s question, then, may be plays like How to Write a  New Book for the Bible. We still need to put good solutions on the table. But, thanks in part to authors like Bill Cain, things are different now.

California has taken the idea of managed care for low-income seniors and people with disabilities to a whole new level. Under an agreement with the Obama Administration announced last week, the state will begin shifting both medical care and long-term supports and services to managed care companies in just seven months.

Watch this closely. You may be looking at the future.

For a fixed, per-patient monthly rate, those firms will be responsible for providing the full spectrum of care to people who have few assets and little income, but who often require extensive levels of care. The program, called Cal MediConnect, will cover people who receive benefits from both Medicare and Medicaid (called Medi-Cal in California)—thus often called dual eligibles.

Over the next 15 months, California expects to enroll 456,000 people in managed care in what will be the biggest program of its kind ever tried. As many as 200,000 will be enrolled in Los Angeles County alone, making the just LA effort bigger than any similar state program in the nation.

Managed care for the frail elderly and younger people with disabilities has tremendous potential, since  people with complex needs are likely to do better with fully-integrated care. For instance, a package of home care services and help with diet and transportation could greatly improve the quality of life for a senior with congestive heart failure and help her avoid the kind of health crisis that would result in a hospitalization.

Of course, using well integrated care to avoid acute medical crises also has the potential to save money. That promise of better care at less cost explains why the 2010 Affordable Care Act included new incentives for such a shift to managed care. California estimates only modest savings of about 1 percent in the first year, growing to about 4 percent by the third year.

However, states are anxious to take advantage of managed care because it allows them to share in any cost savings. Under today’s system, if a well-run Medicaid long-term care program reduces medical costs, it is the federal government—which pays 100 percent of Medicare costs—that benefits. The state gets nothing.

Four other states—Illinois, Ohio, Massachusetts, and Washington—have begun similar experiments. Other states, such as Florida, are moving low-income seniors to managed care under separate programs.

However, managed care carries significant risks. For starters, no insurance company has experience in managing fully integrated care for so many people with complex medical and long-term care needs. No one knows quite how to do this. The danger for patients is that managed care companies will find it difficult to provide a high level of care and still make a profit. As a result, they may scale back the care they provide or demand higher state payments.

Can states avoid these pitfalls? Perhaps these firms learned from past mistakes. In addition, California and the care companies will be required to meet tough quality standards that were not required in older models.

While the California program is described as a three-year demonstration, it is hard to imagine an initiative this big ever fading away, unless it proves an utter failure. Interestingly, the Obama Administration scaled back the original proposal from California Governor Jerry Brown, who wanted 800,000 dual eligibles moved to the new system.

Already, three quarters of Medicaid beneficiaries who receive only medical care (mostly low-income mothers and their kids) are in managed care plans. Many other states are looking at shifting their dual eligible populations to either the fully capitated system that California has adopted or managed fee-for-service plans.

Because it is California, and because of the size of its program, this experiment is bound to receive outsized attention overt the next few years. Perhaps it will be the first step towards fully integrating medical and long-term care for all Medicare beneficiaries. Or it may turn out to be a bust. But either way, it deserves close watching.

America’s system for financing long-term care is failing, and the window for creating a payment system that works is rapidly closing. That was the conclusion of a morning-long expert session sponsored last week by the SCAN Foundation.

While the participants differed on specific solutions, most agreed on four key issues:

• The existing system for funding paid long-term supports and services is built on a wobbly three-legged stool: low private savings, an underfunded Medicaid program, and a hobbled private long-term care insurance market.
• The solution must include an affordable way for Americans to prefund their long-term care costs. This could include tapping financial assets or home equity, or buying insurance (either government, private, or some combination of both). Low-income people would require some form of safety net protection.
• Any future system should finance high-quality long-term supports and services that are well-integrated with medical care. This is especially important since recipients of care services suffer from chronic disease or injury that often requires complex medical interventions.
• There is currently no political consensus on how to do any of this.

That is where everyone agreed. Here is where they did not:

Several panelists focused on ways to enhance private insurance, where the market for traditional long-term care coverage has effectively collapsed. A paper by Marc Cohen of Lifeplans, Inc. and professors Richard Frank and Neale Mahoney of Harvard described a broad package of design changes that might make policies more attractive.

Their ideas include simplifying and standardizing insurance products, indexing premiums annually instead of requiring carriers to ask for big rate increases every few years, allowing insurers to sell high-deductible plans (where buyers could be responsible for as much as two years of LTC costs), and better educating consumers about the price of long-term care and the limited government resources available to pay for it.

They also propose industry-funded reinsurance pools that would protect insurers against unanticipated risks. Another suggestion: Require that companies over a certain size offer LTC insurance and force workers to buy unless they make an active choice to reject insurance. They also recommend new highly-targeted government subsidies, such as tax credits, to encourage moderate-income consumers to purchase long-term care insurance.

Finally, they suggest linking long-term care and health insurance, an idea I raised last year.

Several of their proposals, such as catastrophic coverage and standardized plan designs, are aimed at substantially lowering rates.

Expanding the role of employers may be especially critical since 80 percent of workers currently have no access to coverage through their jobs, according to a separate paper by Jeremy Pincus and colleagues at the insurance industry consulting firm Forbes Consulting Group.  Like Cohen, Frank, and Mahoney; Pincus also believes an employer mandate would significantly boost the number of workers who would buy LTC insurance.

But all that may not be enough. Other conference participants felt that even with these broad-based changes, voluntary private insurance would remain unattractive for many people. As a result, some sort universal coverage is the only way to make LTC insurance truly affordable for middle-income households. Voluntary insurance, even with reforms, would remain out of reach for tens of millions of middle-income people.

Anne Tumlinson of the consulting firm Avalere Health, Josh Wiener of RTI International  and their co-authors found that mandatory insurance would be significantly less expensive than voluntary coverage. Tumlinson said that maintaining the voluntary system would do little more than preserve the unworkable status quo.

Insurance officials tell me privately that, even in the best case, perhaps 20 percent of Americans would buy voluntary LTC insurance. Perhaps another one-third have lifetime incomes so low that they can’t be expected to pay for their own care, either through savings or insurance, and will need some sort of public support.

That leaves perhaps half the country at risk. The challenge for policy makers and the market is to figure out what will work for them. The SCAN program was a great start, but much more needs to be done.

The White House finally appointed the last three members of the congressional long-term care commission, making it possible for the panel to get down to work.

The nominations, which were supposed to have been made by Feb 1, are Henry Claypool, Executive Vice President of the American Association of People with Disabilities and a top aide at the Department of Health and Human Services from 2009-2012; Dr. Julian Harris, a physician and the Massachusetts Medicaid director; and Carol Raphael, the Vice Chair of the AARP board and former CEO of the Visiting Nurse Service of New York.

The three White House appointees fill out the 15-member panel that includes nine Democratic picks and six Republican choices. The commission was created in January as part of the same legislation that repealed the CLASS Act. It is supposed to propose solutions to a broad range of long-term care issues, including delivery, finance, and workforce matters.

The panel is required to complete its work in six months. However, the law does not require Congress to vote on its recommendations.

The commission has no budget. Thus, its staff will be made up of congressional and administration aides. Additional support will probably be provided by the organizations that are represented on the commission. However, the automatic across-the-board budget cuts that took effect earlier this month are likely to make it tougher to find quality staff from within the Obama Administration, since government agencies are already facing staff furloughs.  

Previous Democratic picks were:

Javaid Anwar, a Las Vegas internist who is vp for health services at a large casino/hotel company and served as chair of Nevada’s Committee on Access to Health Care.

Laphonza Butler, president of the Service Employee’s International United Long Term Care Workers’ union.

Bruce Chernof, a physician who is president and CEO of the California-based SCAN Foundation, which focuses on senior issues.

Judy Feder, my colleague at the Urban Institute who served as a senior health aide in the Clinton Administration and staff director of the 1989-90 Pepper Commission.

Judith Stein, founder of the Center for Medicare Advocacy, which represents beneficiaries in their disputes with the Medicare program.

George Vradenburg, a former media executive and founder of USAgainstAlzheimer’s—a non-profit that advocates largely for research dollars aimed at finding a cure for dementia.

The GOP picks were:

Judith Brachman, who formerly served as a housing official in the Reagan Administration and director of the Ohio Department of Aging, now chairs the Jewish Federation of North America’s Aging and Family Caregiving Committee. JFNA represents long-term care providers.

Bruce Greenstein, Louisiana’s Secretary of Health and Hospitals, who was formerly a senior official at the federal Department of Health and Human Services and managing director for worldwide health at Microsoft.

Stephen Guillard was CEO of several large skilled nursing facility operators including HCR ManorCare and was chairman of the Alliance for Quality Nursing Home Care, a trade group that represents large for-profit nursing home companies.

Neil Pruitt is chairman and CEO of UHS-Pruitt Corp, an integrated health care company, and board chair of The American Health Care Assn., the largest trade group representing nursing homes and other senior service providers.

Grace-Marie Turner is president of the Galen Institute, a free-market oriented public policy organization that focuses on health care issues.

Mark Warshawsky is a pension expert who directs retirement research at the benefits firm Towers Watson and was a senior official at the Treasury Department from 2004-2006.

The commission’s next task will be to choose a chair and vice chair, and recruit a staff. It has not yet scheduled any meetings.

Nearly two months ago, Congress created a commission to recommend reforms to the current long-term care system. So what has happened since? Not much.

Leaders of Congress have appointed members to serve on the panel but President Obama—who has three of 15 picks– has not yet made his choices. The commission can’t select a chairman, find a staff, or set an agenda until he does, so for now the effort remains on hold.

Sources say the delay is mostly bureaucratic—it often takes the White House time to review background checks and run candidates through the usual political traps. 

The commission members picked so far are an intriguing mix. They include health and long-term care policy experts, three representatives from the nursing home and the senior service industry, two physicians, a union official, a philanthropist focused on finding a cure for Alzheimer’s disease, and a Medicare consumer advocate. Somewhat surprisingly, it has no members explicitly representing the views of people with disabilities, family caregivers, or the insurance industry.

As I have written previously, this commission will operate under severe constraints. It is supposed to address three big issues–long-term care financing, delivery, and workforce challenges. It has no budget so its staff will be made up of people detailed from Congress or the Administration. It has only six months to submit a report (the clock starts ticking once Obama discloses his choices). After Obama makes his picks, the panel will have nine members appointed by Democrats but only six selected by Republicans–a ratio that already has the GOP planning to play defense. Most troubling, Congress is not required to act on the panel’s recommendations.

Some optimists believe the commission can achieve some modest goals—by framing the importance of long-term care reform and perhaps by agreeing to small reforms. But others have much lower expectations.  

Who are its members?

Democrats have picked:

Javaid Anwar, a Las Vegas internist who is vp for health services at a large casino/hotel company and served as chair of Nevada’s Committee on Access to Health Care.  

Laphonza Butler, president of the Service Employee’s International United Long Term Care Workers’ union.

Bruce Chernof, a physician who is president and CEO of the California-based SCAN Foundation, which focuses on senior issues.

Judy Feder, my colleague at the Urban Institute who served as a senior health aide in the Clinton Administration and staff director of the 1989-90 Pepper Commission.

Judith Stein, founder of the Center for Medicare Advocacy, which represents beneficiaries in their disputes with the Medicare program.

George Vradenburg, a former media executive and founder of USAgainstAlzheimer’s—a non-profit that advocates largely for research dollars aimed at finding a cure for dementia.

The GOP picks are:

Judith Brachman, who formerly served as a housing official in the Reagan Administration and director of the Ohio Department of Aging, now chairs the Jewish Federation of North America’s Aging and Family Caregiving Committee. JFNA represents long-term care providers.

Bruce Greenstein, Louisiana’s Secretary of Health and Hospitals, who was formerly a senior official at the federal Department of Health and Human Services and managing director for worldwide health at Microsoft.

Stephen Guillard was CEO of several large skilled nursing facility operators including HCR ManorCare and was chairman of the Alliance for Quality Nursing Home Care, a trade group that represents large for-profit nursing home companies.

Neil Pruitt is chairman and CEO of UHS-Pruitt Corp, an integrated health care company, and board chair of The American Health Care Assn., the largest trade group representing nursing homes and other senior service providers.

Grace-Marie Turner is president of the Galen Institute, a free-market oriented public policy organization that focuses on health care issues.

Mark Warshawsky is a pension expert who directs retirement research at the benefits firm Towers Watson and was a senior official at the Treasury Department from 2004-2006.  

There are some impressive people in this group and a few who seem to have little knowledge of long-term care. They represent a wide ideological spectrum which, depending on the panel’s dynamics, could be an opportunity to find bipartisan consensus or, more likely, a recipe for gridlock. But the commission won’t be anything at all until Obama picks the last three members.        

On New Year’s Day, as part of the law that kept the nation from toppling over the fiscal cliff for two months, Congress quietly repealed the Community Living Assistance Services & Support (CLASS) Act, and created a new commission to recommend broad long-term care reforms that could affect financing, delivery and care workers.

I was, and continue to be, very skeptical about the commission’s ability to accomplish much. But after spending this week talking to Washington insiders, I heard several express the hope that the panel could at least achieve two important goals: Defining the problem and broadly framing future solutions.

Just getting a bipartisan commission of Congress to acknowledge the importance of the challenges facing those receiving long-term supports and services and their caregivers would be a huge step forward. Acknowleging that our current system of financing and delivering  this care is terribly inadequate would be another big step. And defining the roles of government programs such as Medicaid as well as private insurance would be yet another significant achievement.

Still, that would be a long way from proposing specific reforms–an accomplishment that seems far out of reach for this group. Members of the panel, as I noted last week, must be appointed by the end of this month and the commission has only six months after that to make proposals to Congress. The panel has no budget and will have to rely on staffers from Congress and the executive branch. Its make-up–nine Democratic appointments and only six GOP selections–almost guarantees partisan squabbling.

 Worst of all, even if the group could reach a consensus, there is no requirement that Congress ever vote on its plan.

Yet, several veterans of past long-term care battles in Washington are hopeful that this group can at least frame a future debate. I agree that it would be very valuable. And I hope they are right and I am wrong. But I’m not holding my breath.

The New Year’s budget agreement to avoid the fiscal cliff includes two key measures that could be critical to people receiving long-term supports and services and their caregivers. The first repeals the Community Living Assistance Services and Supports (CLASS) Act. The second creates a new national commission to develop a plan for better financing and delivery of long-term care services.

Unfortunately, there may be less than meets the eye to both of these long-term care provisions. The CLASS Act had already been abandoned by the Obama Administration. And the commission, sadly, seems like a classic congressional study, destined to gather dust on a bookshelf somewhere. 

The repeal of CLASS was hardly a surprise. The measure, a piece of the 2010 health reform law, was supposed to create a new national, voluntary long-term care insurance system. But it was roundly criticised by Republicans and had little support among Democrats.

Most important, actuaries found that, without substantial changes, the program’s premiums would be far too expensive for most buyers and projected it would be financially unsustainable. As a result,more than a year ago, the Obama Administration refused to implement the program. Its repeal was widely expected. The only real question was when and how would it be killed.

At first glance, the budget agreement includes an important trade-off–the creation of a national long term care commission. The idea of such a panel has been pushed for a couple of years now by Senator Jay Rockefeller (D-WV). 

The 15-member panel would include members appointed by the  White House as well as Democratic and Republican leaders of the House and Senate. Its ambitious goal: To “develop a plan for the establishment, implementation,and financing of a comprehensive, coordinated, and high-quality system that ensures the availability of long-term services and supports for individuals in need of such services and supports… and individuals desiring to plan for future long-term care needs.”

Panel members are to reflect the interests of recipients of care, their caregivers, providers, care workers, long-term care insurance companies, and state Medicaid officials.

It all sounds great–and long overdue. The country has not taken a comprehensive look at the long-term care needs of  frail seniors and younger people with disabilities since the Pepper Commission more than two decades ago. Yet, there are elements in the measure creating this panel that are very troublesome.

The first is that is it on very tight time frame. Members must be picked within a month and the panel must submit a proposal to Congress and the White House within six months after that. It is hard to imagine any group solving issues this complex in just six months.

Second, the commission would live in the bureacratic ether. It has no connection to the Department of Health and Human Services or any other federal agency. This can be good, in that it may avoid long-standing bureaucratic turf wars. But is more often bad, because it means the commission has no natural supporters inside an Administration.  

Finally, and most important, the law  includes no requirement that Congress ever actually vote on the panel’s recommendations. This is an old Washington trick, and one that usually consigns commissions such as this and their proposals to the policy dustheap.

I hope I’m wrong and this commission does tackle these critical issues. We’ll know a lot more when we see who is appointed to the panel. But I don’t have high hopes.

With the presidential election in less than two weeks, consumers, advocates, and providers should pay attention to what Barack Obama and Mitt Romney would do about long-term supports and services for the frail elderly and younger people with disabilities.

It is hard to know for sure, because neither man has said much. Yet, between the lines, there are important messages. The first is no matter who wins, federal budget constraints on programs for frail elders will grow. The second is there are key differences between the two men.

Romney, who vows historic reductions in overall federal spending in an effort to balance the budget, may slash programs that support the frail elderly and younger people with disabilities while, at the same time, give states more flexibility in the way they provide many of these services. By contrast, Obama would largely preserve the status quo—perhaps supporting more modest spending reductions while retaining federal control of most programs.   

The biggest difference: Romney’s plan to cap federal spending on Medicaid would mean big cuts in that program, which funds more than 40 percent of all paid long-term care costs.

Romney has not described exactly how his plan would work, but the Center on Budget and Policy Priorities, using Congressional Budget Office data, estimates that a proposal by his running mate Paul Ryan would cut federal funding for Medicaid by one-third, or $800 billion over 10 years.  Ryan’s plan (which Romney has not disavowed) would also give governors far more flexibility to operate Medicaid than they have today. Still, it is hard to imagine states finding so much inefficiency in the program that they could manage a 30 percent cut in federal funding without slashing benefits, provider payments, or both.

It is impossible to know how governors would divide that shrinking pie but it is hard to imagine long-term care would avoid cuts.  

Similarly, Romney has proposed to reduce all federal spending to about 20 percent of Gross Domestic Product in four years, implying deep cuts in non-defense government programs. Again, he has not said exactly what he’d cut, but independent analysts estimate that to keep his promises to balance the budget while cutting taxes, increasing Pentagon spending, and protecting Medicare in the short-term, he’d have to cut planned spending for all other government programs in half by 2022.

Among the programs that could be subject to such cuts: Meals on Wheels, subsidized senior housing, and transportation—all critical to frail elders trying to live independently at home. Budgets for these programs have been largely frozen for the past three years.

Romney has said—again offering no specifics—than he supports expanding community-based care for people with disabilities. But it is hard to see how his budget agenda would make that possible since he’d likely cut the infrastructure people need to live at home.   

Obama, for his part, has sharply criticized the effects of Romney’s Medicaid cuts on seniors. But he has essentially been silent on his own agenda for the frail elderly, those with disabilities, and their family caregivers.

The president’s newly issued Plan for Jobs and Middle-Class Security never mentions long-term supports and services. While his administration abandoned the CLASS Act—the piece of the 2010 health reform law that was intended to create a national voluntary long-term care insurance program—he has never said what he’d put in its place.  Romney, for his part, has been silent on long-term care insurance.

Obama does say that, unlike Romney, he’d preserve the basic structure of Medicaid. And the 2010 health law greatly expands federal spending for the medical care piece of the program—at least for the next decade. But if Obama tackles the long-term federal deficit, as he often promises, it is hard to see how Medicaid long-term care would be immune from any cuts.

Similarly, those non-Medicaid services such as Meals on Wheels would also be on the block in any Obama long-term budget deal, though they’d probably be at less risk than in a Romney Administration.

The bottom line: Long-term care is not on the radar screen for either of these men. For an idea of how remote it is, listen to Romney’s answer to a question about long-term care funding. Both have other priorities. And that suggests that should Congress and the next administration engage in a major deficit reduction plan, long-term care needs could easily be ignored, swept away by much more powerful tides of fiscal austerity.

That’s why it is so important for consumers and providers to advocate for those government programs that work, as well as create new grass-roots tools to support highly vulnerable frail seniors, younger people with disabilities, and their caregivers.

Patient-centered care (as it is described by doctors) or person-centered care (the phrase-more frequently used in non-medical settings) is one of those concepts everyone supports–except when it comes to the details. On Nov. 8-9, I’ll be participating in a two-day symposium sponsored by the Samueli Institute aimed at breaking down the barriers between the medical and non-medical world and seeking evidence to show the benefits of patient (or person) centered care.

The conference, which aimed at health care professionals, will be held in Alexandria, VA. I’ll be delivering one of the keynotes, along with Carolyn Clancy, director of the Agency for Healthcare Research and Quality. The Samueli Institute is a non-profit dedicated to integrative medicine, optimal healing environments, the role of the mind in healing, behavioral medicine, health care policy, and military and veterans’ health care.

When I talk to hospital and nursing home administrators, they all say they want to do a better job focusing on the needs of their patients or residents. And many say they are doing it well. But often, they are falling short of true person-centered care. They are improving what hotel marketers would call the “customer experience” by adding amenities. For instance, a hospital recently profiled in The Wall Street Journal now serves wild salmon on its menu and has added ESPN to it cable listings.

Nothing wrong with that. Who wouldn’t want better food in the hospital? But that’s not patient-centered care.

That facility, Grady Memorial in Atlanta, is also teaching doctors to–sit down now–stop interrupting patients while they are talking. Now that is progress.

But letting a patient speak is still not person-centered. That requires another step–actually listening  to what she is saying and making her and her family a real part of the care team. 

In the end, it is all about control. It is about doctors asking patients about their goals–and paying attention to what they say–and sharing decisions with people who have no medical training. 

This is not how doctors normally think. But it matters. Does a patient want to live as long as possible, or would she prefer to be pain-free even if it means giving up a few years? Does a patient want to take his chances with a high-risk surgery,even  if the outcome could be death, or a very poor quality of life? 

Does a nursing home resident want a breakfast at 7 :00AM, or 10:00? Who wants spiritual rather than medical care? Who wants both?

The answers, of course, differ from person to person. And that’s the point. This kind of care requires doctors, nurses, and social workers to take the time to get to know their patients and what they want.

That raises the question: Does patient- or person-centered care work? Does it improve outcomes? In the end, are people who participate in their own care decisions healthier? And because there is so much focus on the cost of health care these days, does it save money?   

The Samueli conference will explore many of these questions. I’ll be interested to learn what experts in the field have to say.