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.

In 2012, about 13 million seniors participated in Medicare Advantage (MA) managed care plans—about 27 percent of the Medicare population and twice as many as were enrolled just seven years ago.

This rapid shift to managed care by seniors may be just a first step towards a fundamental change in the way Medicare is delivered and financed. And it has the potential to transform the way long-term supports and services are provided as well.

Medicare managed care comes in many forms. Almost two-thirds of MA enrollees participate in HMO-type plans, such as Kaiser Permanente, where treatment is delivered by employed staff. A rapidly growing alternative is offered by preferred provider organizations (PPOs) where community physicians and nurses are under contract with insurers. Among other versions are Special Needs Plans (SNPs) that provide care for people with complex medical requirements, including those who are  very poor and very ill and who are eligible for both Medicare and Medicaid (dual eligibles).    

Typically, Medicare pays these plans a fixed monthly fee per patient. In return, managed care companies provide their patients with all necessary care, including all-important care coordination. These firms are at risk for costs, so if they can manage expenses, they may keep the extra payment as profit but if  their costs of care exceed the Medicare payment, they will lose money.  

Managed care is especially important for seniors with chronic diseases. It holds the potential for far better care than traditional fee-for-service Medicare, which is often chaotic, disorganized, and duplicative. Yet, MA plans carry their own risks for patients. Unless financial incentives are correctly designed, the firms that operate these plans can be rewarded for discriminating against the sickest patients or denying care to high-cost participants.

Do MA patients use less health care than traditional Medicare enrollees? And is that a good thing, or a potential problem?

So far, the experience is mixed. A December, 2012 study  for the journal Health Affairs found that MA patients were one-quarter to one-third less likely to visit hospital emergency departments, likely to spend less time in the hospital, and less likely to receive outpatient surgery. On the other hand, rates of doctor visits were about the same as in fee-for-service Medicare.

MA patients were less likely to have elective knee and hip replacements but more likely to have heart bypass surgery. A separate insurance industry study found MA patients were less likely to be readmitted to the hospital within 30 days of discharge.  

Medicare also measures quality and safety for both MA plans and fee for service providers. By these standards, MA quality is improving. For several key outcome measures, such as controlling high blood pressure and managing diabetes, HMOs scored significantly higher than PPOs. Starting in 2012, Medicare began paying high quality MA plans a bonus.  

Medicare uses a star rating for MA plans (1 is the lowest, 5 is the highest). In October, it reported 127 plans had 4 or 5 star ratings.

For now, MA plans do not necessarily save Medicare money. In fact, for several years MA plans have been getting higher Medicare subsidies than fee for service providers. The 2010 health law will gradually reduce the level of these subsidies and plans will have to find ways to provide high quality care for less money—the challenge that fee for service Medicare providers already face.

MA plan have enormous potential to better coordinate care for seniors and others with chronic disease. Someday, they may also become the basis for a system that integrates medical care with long-term supports and services. For now, MA plans in all their forms remain a work in process. They have some real benefits, including premiums that are substantially lower than for fee-for-service. But consumers need to consider these plans very carefully. And so do policymakers.

A new insurance company survey of financial advisers reports that four-in-ten have clients who ask about giving away their assets so they can become eligible for Medicaid long-term care.  Oddly, though not surprisingly, the same advisers report their clients say that a key goal of their long-term care planning is “maintaining control.”

The online survey, by Nationwide Financial, questioned a small, self-selected sample of advisers, so the results may not be representative. And remember, this survey did not report that 40 percent of clients want to spend-down, only that 40 percent of advisers had clients who asked about it.

Most research suggests that few ever follow through with this strategy. Still, if control and independence are really your goals, the last thing you want to do is rely on Medicaid for your long-term supports and services. Here are some reasons why:

Medicaid benefits vary widely from state to state. And while a handful of programs provide beneficiaries some flexibility, Medicaid is loaded with rules about what is, and what is not, covered. While home care is becoming more common, assistance is still often available only in nursing homes. And even where Medicaid home care is offered, the level of assistance is often low and many enrollees face long waiting lists before such care is available to them.  

Medicaid pays only limited benefits for residents of assisted living facilities. It may pay for some assistance with daily activities, such as bathing or eating, but does not pay for room and board, which represents the bulk of costs. Medicaid normally won’t pay for independent senior living either.

While Medicaid does pay for nursing home care, getting into a high-quality facility is not easy. And once you get in, you may have very different accommodations than private pay residents.  

Nursing homes normally are not required to accept Medicaid residents. Indeed, because facilities say they lose money on Medicaid stays —a new industry-funded study reports that nursing homes lose an average of about $22-per-Medicaid patient per day—the best nursing homes limit the number of Medicaid residents they will accept at any one time.

The trick is to get into a high-quality facility while you are still paying out of pocket. Once you are there, the facility is not allowed to evict you if you run out of money and go on to Medicaid.  Nursing facilities, of course, know this. So they’ll often want to be sure you can pay for a year or more before accepting you. That may mean you have to enter a nursing facility long before you need to, just so you can get into your facility of choice.  

Also, keep in mind that while a facility may not reduce its care if you shift from private pay to Medicaid, it can make some changes. For instance, in nearly all facilities Medicaid residents must share a room.

Finally, Medicaid makes it tough to artificially give away assets in order to benefit from the program. One rule penalizes you if you give away your money within five years of being admitted to a nursing home.

At first glance, giving away money to relatives may seem attractive. But Medicaid is a program aimed at the poor and it faces severe budget issues.  Besides the ethical issues of gaming the system (which I think are significant), you might want to think twice about turning your care over to a government program that is chronically short of money.

Slowly but surely, more people who receive Medicaid benefits for long-term supports and services are getting their care at home rather than in nursing facilities. Still, only about 3.3 million seniors and younger people with disabilities who require long-term care get such help at home—about 1 million more than in 2000.

Overall, the program now spends about $50 billion or 45 percent of its long-term care budget on home and community care, according to a new study by the Kaiser Family Foundation’s Commission on Medicaid and the Uninsured. A decade ago, it spent about $20 billion.  

Yet the number of people receiving home and community care, and the amount of money individual states put into that care, varies widely. For instance, in 2009 Medicaid spent an average of $15,371 per person on home and community care. But Illinois spent only about $5,200 while Tennessee spent more than $35,000.  

These big state-to-state differences are important, especially since both federal Medicaid spending and state flexibility may be key issues in budget talks over the next year. If lawmakers give the program less money but more flexibility, these state variations could widen considerably.   

Medicaid is the largest single payer of long-term supports and services, funding almost half of all paid long-term care. It dwarfs the benefits provided by private long-term care insurance or what people pay out of pocket. But the Medicaid program, run by the states but jointly funded by states and the federal government, is required to provide care only in nursing facilities.

States may also offer long-term services and supports to people living in the community but must first get federal permission. The feds also give them leeway in deciding how much care they fund and who gets it.    

Nearly all states have home and community programs, but many reduce costs by restricting eligibility or limiting benefits. For instance, some states limit participation (and save money) by setting more restrictive rules for those applying for home care than for those getting care in a nursing facility.

Another way states save money is to allow only a limited number of participants in home care programs at any one time. Others are placed on a waiting list. Overall, more than a half-million Medicaid beneficiaries were waiting for home and community care in 2011, 75,000 more than in 2010. The average wait was more than two years, which is especially problematic for the frail elderly, many of who are likely to die before reaching the top of the list.

These wait lists vary widely for different populations and among states. For instance, in California only about 1,300 people who were aged and disabled were waiting for home and community care in 2011. In Louisiana, a much smaller state, 27,000 were waiting, and in Texas almost 44,000 were on the list for home care benefits.

Most people who need supports and services want to get that care at home. And states say they want to deliver such care in the community. But, as the Kaiser study shows, many states are still reluctant to provide that assistance through Medicaid. Their home and community-based programs exist on paper, but often are often insufficient for the needs of the frail elderly and those younger people with disabilities who are trying to stay at home.

Medicaid is in the budget bull’s eye. But many lawmakers aiming to cut the program have no idea what it does, and how important it is to frail seniors who need help with daily living. The popular image of Medicaid: health care for a poor mother and her children. The all-too-common reality: long-term supports and services for an 85-year old widow with dementia.

With Congress and President Obama looking for both a short-term way to avoid the dreaded fiscal cliff and a long-term deficit reduction deal, Medicaid and Medicare are at the top of the hit list—in large part because they are so costly.

Let’s leave the debate over Medicare for another time. But Medicaid, frequently lumped in with Medicare and Social Security as one of those vaguely threatening “entitlements,” is another matter.

Medicaid, jointly funded by the federal government and the states, does two jobs. It provides health care for those poor mothers and their kids—who represent about three-quarters of enrollees. But two-thirds of the Medicaid budget is spent on the frail elderly and younger people with disabilities. And one-third of all Medicaid spending—about $120 billion– is for their long-term care alone.

In recent months, conservatives have taken up the cry that the U.S. has become a “Nation of Takers,” to borrow the title of a recent book by American Enterprise Institute scholar Nick Eberstadt. It became a common campaign theme of GOP presidential candidate Mitt Romney. A recent column by Washington Post columnist Bob Samuelson nicely summarizes this view. And too often Medicaid is casually tossed into the conversation.

So who are the Medicaid takers? Among the elderly, they are among the nation’s most vulnerable. They are frail, often suffer from multiple chronic diseases (such as heart failure, dementia, or diabetes), and are impoverished.  Many were once middle class but, due to illness, are without financial resources in old age.

Look at the roughly 9 million people who are sick enough and poor enough to be eligible for both Medicare and Medicaid (often called the dual eligibles, or just the “duals”). Some are poor, but relatively healthy. Many others are not.

Two-thirds of the duals are aged 65 or older. According to MedPAC, the independent commission that advises Congress on Medicare, 38 percent have cognitive or mental impairments, 22 percent have multiple physical impairments, and 23 percent live in nursing homes or other institutions.

Sixty percent of those duals who live in nursing homes or other institutions have dementia or some other cognitive impairment. According to the Kaiser Family Foundation, one-quarter of elderly who are eligible for both programs need assistance with at least three activities of daily living (such as bathing, going to the bathroom, eating, or dressing). Many are, in other words, helpless.

Among the 1 million dual eligibles who are the most costly Medicaid patients,  nearly half are aged 80 or older, three-quarters need help with 3 or more activities of daily living, three-quarters live in institutions, and one out of every six has Alzheimer’s.  

Ninety percent are poor or near-poor. More than half have incomes of less than $10,000. And 90 percent have no other insurance. According to Kaiser, 70 percent are women and only about 20 percent are married. Some have adult children to care for them. Many others do not.

There is no doubt the U.S. has a long-run budget problem, and that we need to do a better job caring for the frail elderly who are chronically ill and need both medical care and long-term services. Maybe we can find a way to  provide these people with better care and save money. Maybe we can find an alternative to Medicaid, at least for people who were once middle-class. But taking a meat axe to Medicaid in a frantic attempt to hit a politically-motivated budget target is not the way to do it.    

With the election behind him, Barack Obama’s first item of business will be dealing with the fiscal cliff–that toxic combination of tax increases and automatic spending cuts that are due to kick in on Jan 2, unless Congress acts to delay or replace them with a long-term deficit reduction plan. 

Going over the cliff would mean deep cuts in a wide range of government programs. And even though Medicaid and Social Security are exempt from the spending reductions, dozens of other important senior services programs are on the block.

Overall, more than $54 billion would be slashed from non-defense programs for 2013. And many provide critical supports for people with long-term care needs who are trying to live at home. While Medicaid is exempt from the spending reductions, the rest of the infrastructure people need to stay in the community, such as transportation, personal assistance, subsidized housing, and adult day would all face deep cuts.

Many would hit programs operated under the Older Americans Act. According to the Leadership Council of Aging Organizations,  if Congress goes over the cliff and the cuts last through 2013, the consequences would be severe. Among them: A reduction in nearly2 million rides for seniors, a cut in case management services for 290,000 seniors, and a cut of 750,000 adult day slots. Caregiver supports would be cut by $12.6 million, social service block grants (which fund programs such as meals, transportation, and adult foster care), would be cut for 345,000 people aged 60 and over. More than 1 million seniors would lose homemaker services and 1.5 million would lose in-home personal care services.

Keep in mind that the  idea of the fiscal cliff was to make the tax hikes and spending cuts so draconian that Congress and the president would agree to a long-term budget deal to avoid them. So far, that strategy has failed miserably. The question now is whether Obama will find the key to unlock Washington’s frozen politics and avoid the automatic cuts.

Make no mistake, programs such as Medicaid and Medicare will be the focus of any long-range fiscal solution. But changes will come only after months of serious debate. They may themselves be very difficult for seniors and providers. But going over the fiscal cliff won’t prevent them. It might even make them more likely.

In the long run, an era of fiscal constraint may require communities to pick up some of these government programs, such as transportation. But that can’t happen overnight.  

It helps no-one if  by partisan inaction, Congress and the president hammer senior services with mindless, needless, across-the-board cuts that will come from toppling over the cliff.   

Last week, Medicare agreed to expand its skilled nursing care and rehabilitation therapy benefit for some people with chronic disease, including many elderly. This added care, which came in a settlement of a lawsuit brought by a Vermont woman named Glenda Jimmo, the Center for Medicare Advocacy, and others is potentially very important for some Medicare beneficiaries.

But the settlement does not affect long-term care benefits in any way. Medicare did not pay for long-stay nursing home care, home health aides, or other long-term care services before this lawsuit, and it will not do so now.    

Similarly, the case has no impact on Medicaid, the government program that does pay for these services for people who are both impoverished and need a high level of assistance. The benefits and eligibility rules for Medicaid remain unchanged.

Yes, this agreement will make it easier for some people who are receiving long-term care to also get skilled nursing care or physical therapy. But it will not require Medicare to pay for any long-term services or supports   

Still, many people are confused about Medicare benefits for those with chronic disease and uncertain about this case. Several people have called or emailed asking whether this settlement means their mom can now get Medicare long-term care benefits. The simple answer is: No.  

That is not to say the settlement is not important. For years, many home health agencies and skilled nursing facilities have interpreted Medicare rules to mean the program would not pay for rehab if a patient is not getting better.  

Imagine, for example, an 80-year old suffers a stroke. There has been no question that Medicare could pay for, say, her physical or occupational therapy. However, the rules have been unclear, and many providers have taken the position that Medicare would only pay as long as she improves as a result of this skilled care.

The rules were vague, and Medicare has sometimes argued that providers misunderstood them. Still, many service providers, who feared Medicare auditors would demand repayment for ineligible services, were reluctant to provide rehab or skilled nursing unless a patient met this “improvement standard.”  

Under the terms of the legal settlement, a doctor no longer has to assert that a patient will improve to be eligible for skilled nursing care and rehab.  She will now be eligible for the Medicare benefit even if that care helps her maintain her health status.  As long as skilled care is deemed necessary by a health professional  based on an individual assessment, maintenance therapy would now be a Medicare benefit.

It is also important to remember that the settlement does not increase the number of days skilled nursing care is provided after a hospitalization. It remains a maximum of 100 days per benefit period.

The agreement must still be approved by the judge before it is final. However, the federal government will begin implementing the agreement right away, though the process could take many months.

It is long past time for Medicare to clarify this issue, and it could even end up saving the program money since ongoing therapy might keep a patient out of the hospital. However, don’t be confused: This agreement does nothing to expand long-term care benefits.

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.

Last week, I wrote about an important new survey of family caregivers that shows nearly half are performing work that is often done by nurses, such as managing medications, caring for wounds, and operating medical equipment. The report, by AARP and United Hospital Fund, sheds important light on the often unrecognized role of these family caregivers. And it raises a critical question: What can be done to help them?

These caregivers acknowledge they are largely untrained, and many say they learned how to perform these difficult tasks on their own, or from a friend or neighbor. Few were taught by health professionals. Imagine if nurses in hospitals or nursing facilities were providing such care with informal training like this. It would be a major scandal. Regulators would shut down the facilities within hours.

Yet, 80 percent of  the frail elderly are getting their care at home, and not in a residential care facility. Family caregivers are the backbone of the support system for the frail elderly and younger people with disabilities. Yet, to be blunt, they often don’t know what they are doing.

The result: Those receiving care may needlessly be in pain or discomfort. They are at greater risks of falls, infections, or even drug overdoses. They may require more frequent hospitalizations. They almost surely cost the health system more money.  What to do?

Susan Reinhard,  Carol Levine, and Sarah Samis, the authors of the  AARP/United Hospital Fund study, make 10 recommendations. Many involve changing the culture of health care to acknowledge this role of family members. For instance, they suggest that doctors, nurses, and social workers take more responsibility for  family caregivers who are doing this work. They also urge that  hospitals, nursing homes, and home care agencies provide greater support for those clinicians and aides who interact with these families. 

More than anything, these families need explicit hands-on formal training and practical support. Sadly, there are only a few such programs around the country. The Schmieding Center in Springdale, Arkansas is one. The Congregational Health Network in Memphis, a venture of the Methodist LeBonheur Health System and hundreds of local churches, is another.  

Yet there are so many more opportunities.

Senior villages could be an entry point for these training programs, perhaps by partnering with local hospitals or nursing facilities. So could faith-based organizations.

Managed care companies could sponsor training programs. After all, if a well-trained family caregiver can help keep a loved one out of the hospital, the managed care company stands to profit.

Hospital discharge planning, which is often the broken link in the health care chain, needs to understand the role and the capacity of family caregivers.  Discharge planners should be identifying needed skills training begining with a patient’s admission. And hospitals ought to provide the resources to provide that training. With hospitals now paying financial penalties for excessive readmissions, this is a low-cost way to avoid those events.

Transitional care programs need to address these caregiver skills as well. These programs do a great job working with patients and family caregivers.  But few of them provide real hands-on training. They should.

Medicaid and private long-term care insurance policies should include caregiver training as a benefit. If this training can keep people out of nursing homes, it can be a cost-saver in the long run.

None of this is complicated. It is not that expensive. Yet it can immeasurably improve the quality of life of those receiving care and those family members who help them every day.

Being a family caregiver is a lot harder than it used to be. Providing personal assistance, such as help eating or bathing, is tough enough. But now, many  family caregivers are acting more like nurses. They have to manage medications, change dressings on wounds, and even monitor and operate  medical equipment, from home dialysis to mechanical ventilators.

According to a new survey by the AARP Public Policy Institute and the United Hospital Fund, nearly half of all family caregivers are providing medical or nursing services to their loved ones. This level of assistance not only puts far more pressure on these family members, it also creates new risks for those receiving care from people who treat them with the best of intentions but have little or no training.

Yet the health system has done next to nothing to recognize this new, more intense level of care by family members. For instance, half of those doing wound care, such as changing dressings or treating bed sores, said they learned how to perform these tasks on their own or from a friend or neighbor (though some reported getting help from medical professionals as well). Not surprisingly, almost half said they are afraid of making a mistake.

If paid caregivers were providing the same assistance, they’d be subject to strict licensing, training, and educational requirements. In many states, certified nursing assistants are barred by law from performing many of these tasks, ostensibly because they do not have the skills. Yet, the medical system seems perfectly OK with leaving this work to family members who often have no training at all.

Often, these caregivers are providing this high level of assistance in an effort to keep loved ones with chronic disease at home and out of care facilities. More than half report doing so  because they cannot afford paid care and no-one else is available to help. 

About 40 percent of family caregivers surveyed were adult children caring for parents and about 20 percent were spouses (usually women). However, spouses were twice as likely to be providing both nursing care and personal assistance as personal assistance alone.

Those receiving care were likely to be suffering from stoke, arthritis, dementia, cardiac disease, or diabetes. Often those receiving nursing-type care suffered from more than one of these illnesses.

This trend towards higher levels of care is only going to grow. The Baby Boomers are aging and living longer with chronic disease. Under pressure from Medicare, hospitals are discharging patients “quicker and sicker.” Increasingly those with chronic illness are resisting nursing home care. And the costs of paid care are outpacing the ability of families to pay.

At the same time, Medicare has begun to penalize hospitals that readmit too many patients. It would be interesting to see how readmission rates compare between those families that ar serving as DIY nurses, and those who can afford paid assistance. 

Family caregivers are the bedrock of our care system. The AARP/United Hospital Fund study helps us understand how important they are. I hope it will be a first step in encouraging insurers, policymakers, and medical providers to give these family caregivers the support they need.