by Gene Coffey

I recently saw the movie The Savages, starring Philip Seymour Hoffman and Laura Linney, a story about two adult children trying to care for their sick father. The movie was well worthy of the two Oscar nominations it received (Linney for Best Actress, and Tamara Jenkins for Best Original Screenplay), but I was actually motivated to see it because of how closely the issues in the movie relate to my work.

I spend my days tracking changes to federal and state laws that impact access to long-term care services, and these days, a lot of the changes are designed to “rebalance” the delivery of long-term care from nursing homes to the community. Consumers overwhelmingly prefer community-based services, but federal and state programs serving those in need of long-term care have historically relied on nursing homes for delivery. From the perspective of the policymakers, however, a change is necessary, because our aging population is about to explode, and with that will come a dramatic increase in the demand for services.

Congress has amended both the Medicaid Act and Older Americans Act within the past few years to provide more opportunities for home and community-based long-term care services, which generally come at a lower cost. Consumers, their family members, and aging advocates all welcome the expansion of opportunities, and “public stakeholder” partnerships are forming (as actually required by the relevant federal laws) between these public groups and the state and federal officials implementing the new programs to ensure that the goals of these programs—primarily to allow our aging population to choose their own services and “age in place”—are actually realized.

But this does not necessarily mean that nursing homes are soon to be relics of the past. Indeed, more than a million people are still in nursing homes, and the numbers are increasing, even if the percentage of people in need of long-term care entering nursing homes is declining.

In The Savages, nursing facility care is in fact what is chosen for Lenny, father to Wendy (Linney) and Jon (Hoffman). The story is about the adjustment the two siblings make to their lives after they are suddenly thrust into a caregiving role for their estranged father (played by Philip Bosco), who was forced out of a retirement community in Arizona and moved by Wendy and Jon to a nursing home in Buffalo. It is one very depressing movie, although the story is very real. I truly enjoyed the film, and what stood out most for me during the movie was Wendy’s purchase of a red pillow and lava lamp from Urban Outfitters for her father’s nursing facility room.

Why does she do it? Though Wendy has been estranged from her father for years, she has become very concerned about his well-being, and in her effort to make her father’s life as comfortable as possible, she becomes acutely aware of his surroundings. Her father’s nursing home is a dreary, sterile-looking place, and his room is indistinguishable from one you’d find in a hospital. The surroundings are so dismal that it strikes Wendy that the environment might actually be harming Lenny’s health. And so she goes to Urban Outfitters.

The effort itself is a poignant display of the care she has for her father, but what is more important is her motivation to buy the specific items she did. As she explains to Jon, the colored pillow and a lava lamp present a stark contrast to the sterile environment of his room, and provide some likeness of a home.

If you are ready to simply dismiss the likelihood of the items have any measurable impact on someone like Lenny, you ought to go buy Beth Baker’s Old Age in a New Age—The Promise of Transformative Nursing Homes.

Baker’s book documents a growing movement that challenges the unfortunately long-held belief that the “warehousing” of aging individuals who are dependent on others due to physical or cognitive impairments is an appropriate method of treating our aging population. As the thinking goes, individuals who have developed dementia, or who have extensive physical impairments, have, after all, lost their ability to work, as well as that one “thing” we value so highly in our society—independence. So, really, let’s call a spade a spade, and consider that there really isn’t much else we can do with these people. And think about it—many of them are very frail and just happy enough to be without pain, and others are not really all that aware of their surroundings, so they’re not too upset to be there, and while the facilities may not be attractive places, we can at least say that they serve their practical purpose, right?

The question for anyone who maintains this thinking is simple—do you want to be a nursing home one day? Baker titles her first chapter after one of the most oft-heard refrains of parents for generations: “Promise Me You’ll Never Put Me in a Nursing Home.” This plea is partly grounded in a fear that, if we do end up in a nursing home, we may very well be fully aware of the misery of our environments, and suffering because of it, even if we are in fact lucky enough to be without pain and with our overall physical needs taken care (which, as Baker documents, is historically not something nursing home residents have actually been able to count on).

Again, more home and community-based opportunities for receiving long-term care are developing, and more innovative ideas on how to deliver noninstitutional care will undoubtedly surface in the coming years. Baker herself notes that many people whose medical conditions would in the past have meant nursing home placement are now receiving services outside of them (e.g., assisted living facilities).

Baker states that her work is based on the reasonable assumption that “we will continue to need places where elders live, beyond their own homes.” What her book does from there is provide some evidence that this might not necessarily be bad news. This is because of a growing commitment within the industry to change the culture within nursing homes, and one of the primary features of the change is exactly what Wendy tried to do for Lenny—make him feel at home.

Baker cites to anthropologists, psychiatrists and aging experts on the value we humans place on “home,” and notes how the “longing for home reverberates” in works ranging broadly from the Homeric epics, the Wizard of Oz, Huck Finn and the Lord of the Rings. She goes on, “The narrative separation from home, initiation, and return to home echoes throughout the history and cultures, according to Joseph Campbell in The Hero with a Thousand Faces. Heroes have adventures, slay dragons, gain power or wisdom, but in the end, they head home.”

This ingrained longing for home does not simply apply to a small geographic area, but to the items we have in whatever abode we label “home.” Baker relates an exercise she undertook in which she listed all of her favorite belongings, and then crossed off each one that would not be permitted in a nursing home. She was in tears by the end of it.

Is it any wonder then, Baker asks, that nearly half of the residents of nursing homes, who have had to leave their homes and enter facilities bereft of any semblance of home, suffer from depression? For many in the industry, it is not, and many of them are working to change it. They are creating “homes” within their facilities. Home certainly begins in part with the addition of the lava lamps and red pillows, but it also extends to those other “features” of home that we take for granted, like having the freedom to eat when we want, make our own choices about when we go to bed and when we get up, and having a reasonable amount of privacy. As Baker documents, some facilities have actually built small house-like structures within the extended grounds of their facilities.

These efforts are not merely scattered and individual, but are instead part of a very organized and coordinated movement. The Pioneer Network, for example, is a nationwide coalition of stakeholders dedicated to “creating places for living and growing rather than for declining and dying.” The Network recently hosted a sold-out national symposium in Washington, D.C. called “Creating Home in the Nursing Home,” and will host its Eighth Annual national conference this August (“A Call to Action”).

There is also the Eden Alternative, an organization devoted to having “elders live [in] habitats for human beings, not sterile medical environments.” The organization actually certifies nursing homes as “Eden” homes based on their compliance with certain standards. The organization is hosting its Fourth international conference this June.

What these facilities (and others that have no affiliation with either the Pioneer Network or Eden) have accomplished is, based on what Baker presents, truly extraordinary. It is indeed remarkable the differences that have been made for so many nursing facility residents across the country.

But challenges certainly remain. For starters, the preexisting nursing home culture developed over the length of a century, back to when poorhouses or “almshouses” sheltered aging individuals, persons with disabilities, and impoverished adults who were without work. Baker writes that they were “designed to discourage lazy people from gravitating to these,” so life was deliberately made unpleasant in them. I had read this before in Michael Katz’s In the Shadow of the Poorhouse, in which he describes how the “able-bodied” were eventually driven of these poorhouses, leaving ultimately the aged. As he puts it, “For the most part, poorhouses became old-age homes, which paid a high price for their origin.” Fully turning this century-old tide may take a little bit of time.

There is also the issue of government enforcement of existing quality of care standards. While some facilities are busy trying to accomplish culture makeovers, some still remain, in Baker notes, almost dangerous places to put people. A government-sponsored report last year found that a number of such nursing homes have been continuously given mere slaps on the wrists by the federal agency responsible for enforcement of federal quality of care standards. In other words, for some facilities, there is still a lack of an incentive to actually improve.

But putting these and other issues aside, the book provides a fascinating and encouraging look into what might fairly be called a revolution quietly taking place.

If we need any more evidence of the importance of the change, and the need for it, consider what happened in the aftermath of Wendy’s purchase of the red pillow for Lenny. Wendy visits her father and discovers that the pillow is gone. She begins frantically looking up and down the halls, interrogating staff and demanding that it be found, but then suddenly comes across a woman sitting by herself in a wheelchair alone in a hallway clutching the pillow. From the profile we see of this woman, it appears that it would have taken every last bit of energy she had to actually wheel herself into Lenny’s room, reach up to his bed to take the pillow, and wheel herself out. Nevertheless, no other explanation is given, so it appears that that is exactly what she did. All for one red pillow that was specifically purchased to help remind someone of home.

By Harper Jean Tobin

For workers and retirees, the current Supreme Court term may not look so bad – but appearances can be deceiving.

So far, three employment decisions this term have come out well: one concerning the procedures for bringing an employment discrimination suit, another concerning evidence in discrimination suits, and a third that expanded remedies for workers whose 401(k) plans were harmed by mismanagement. The one notable loss has been the 5-3 decision in Stoneridge v. Scientific-Atlanta, which immunized from private suit a broad class of corporate wrongdoers (including most of those responsible for the Enron scandal) whose crimes threaten the security of Americans’ retirements.

As with other areas of its docket, the Court’s employment decisions seem to be lining up with Supreme Court maven Tom Goldstein’s prediction that the ’07-’08 term would give the appearance of a retreat from the Court’s sharp rightward turn last term. But as he noted then, that appearance is largely misleading.

For one thing, the more moderate decisions just noted have nowhere near the seismic impact of last term’s conservative triumphs, such as the already-notorious 5-4 decision in Ledbetter v. Goodyear Tire & Rubber Co., which drastically cut back workers’ ability to take pay discrimination claims to court. The two discrimination cases decided so far this term have been modest in their impact, and the same is likely to be true of a pending case concerning age discrimination in retirement plans. The 401(k) decision –LaRue v. DeWolff, Boberg & Associates – is more significant, but leaves many questions unanswered. While the result in LaRue was unanimous, a concurring opinion by Chief Justice Roberts and Justice Kennedy advocated new obstacles for worker pension suits.

And of course, there is more yet to come. In oral arguments last month in two pending cases, the Court’s most conservative justices appeared ready to drastically cut back protections for workers who blow the whistle on discrimination. If this happens, it will be a stark about-face from the Court’s longstanding approach to retaliation – including a decision written by Justice O’Connor just three years ago – and a leading contender for the title of this term’s Ledbetter. The Court also has oral argument in three additional discrimination cases scheduled, and while experts generally doubt the results will be uniform, the Court is certainly on-track to continue its gradual erosion of the nation’s civil rights law.

The Court has also expressed interest in two pending certiorari petitions of note, asking the Solicitor General to weigh in on both cases. While the lower court judgments being appealed in these cases are very different, both reflect the overall anti-worker and –retiree tone that has been set by the Court (and, of course, by lower court judicial appointments), and each could prove to be very significant.

In Amschwand v. Spherion, a worker was deprived of his employee life insurance coverage because he was on medical leave fighting cancer at the time his employer switched plans. Although the employer and the new insurer had an agreement that workers like Amschwand would be covered, he was never granted coverage and never notified of this fact, although he continued to pay premiums until he died of cancer. After his widow was denied the benefits of the policy, the Fifth Circuit Court of Appeals held that, under the Supreme Court’s highly restrictive approach to employee benefit plans, she could recover only to a refund of the insurance premiums, and not any of the benefits she should have received. One circuit judge concurred only reluctantly, lamenting that the facts of this case “scream out for a remedy beyond the simple return of premiums,” but that “regrettably, under existing law it is not available.” That “existing law” is recent Supreme Court precedent that, incredibly, interpreted the term “equitable relief” in the federal employee benefit law as invoking a long-discarded technical distinction between types of judicial remedies – something that even the Court admitted Congress probably did not intend.

In the second case, Hulteen v. AT&T, a group of workers challenged the denial of retirement benefits based on AT&T’s past, and now clearly illegal, employee leave system. All of these workers took pregnancy leave during the 1960s and ‘70s, when pregnancy leave was treated as personal rather than medical leave – a practice subsequently banned by the Pregnancy Discrimination Act of 1978. When they retired, between 1994 and 2000, they discovered that AT&T had calculated their retirement benefits based on their old, illegal leave policy. When they (along with their union) brought suit, however, AT&T claimed, and a panel of Republican-appointed judges agreed, that all their claims were time-barred, because anything the company did wrong took place more than three decades ago. This argument is a variation of the reasoning in Ledbetter v. Goodyear: if your employer got away with discriminating against you before, it can continue to discriminate against you now. Happily, a majority of Ninth Circuit judges assigned to the case subsequently rejected this argument – but the court split 11-4 along partisan lines, with the dissenting, Republican-appointed judges relying heavily on Ledbetter.

The outrageous defenses urged by employers of these cases should be laughable. But thanks to years of divided Supreme Court decisions that favor unscrupulous employers, they are deadly serious. To be sure, the Court’s pending cases may bring the occasional, modest victory for workers and retirees. But there’s every reason to expect that the Chief Justice Roberts’s Court will continue to shape the law in ways that primarily serve business interests at the expense of the rest of us.

By Eric Carlson
Director, Long-Term Care Project
National Senior Citizens Law Center

    Would you rather live in a nursing home?  Or an assisted living facility?

    Most Americans would not hesitate to choose assisted living.  A “nursing home” sounds sterile and terrifying.  An “assisted living facility,” on the other hand, actually sounds like a relatively pleasant place in which to spend your retirement years.  Do what you want to do, and have staff people available to help you out as necessary.  As you get older, frailer, and sicker, the facility’s care will increase in intensity to match your increased needs.  You will “age in place” with confidence that the facility can provide you with what you need until the end of your days.  

    This sounds almost too good to be true.  And it is.  Assisted living facilities do not necessarily live up to the image evoked by their name.  Older persons and their family members need to be particularly careful in selecting an assisted living facility and, after admission, in demanding adequate, personalized care.

    The underlying problem lies with the flexible nature of the term “assisted living facility” in most states’ laws.  (Assisted living is regulated state by state – there is essentially no federal law on assisted living.)  Commonly “assisted living facility” is defined in state law as a type of facility that provides room, board, and some sort of health-related services.  Which is true, but not specific enough.  Under such definitions, an assisted living facility may have around-the-clock nurse staffing with the capacity to handle a resident with significant health care needs.  Or it may be a glorified board and care home, with few services beyond meals and housekeeping.

    In defending the current system, assisted living providers argue that the definitional looseness gives facilities the flexibility to provide individualized care.  But under many states’ laws, there are no assurances that facilities will use this flexibility to benefit residents.  Flexibility theoretically could be a good thing, but only if residents have adequate power to determine when and how that flexibility is exercised.  If flexibility means instead that facilities can act as they please, then “flexibility” might seem from the resident’s perspective to be more curse than blessing.

    Here are some real life situations.  Some states’ regulations set virtually no standards for the training provided to direct-care workers, and in still other states the regulations set trivial standards such as ten hours of initial training.  Thus, while the regulatory looseness allows better assisted living facilities to provide high-quality training that meets residents’ particular needs, the looseness also allows less conscientious facilities to employ direct-care workers with little or no training, regardless of residents’ needs.  (Information on each state’s direct-care training requirements can be found in NSCLC’s Critical Issues in Assisted Living: Who’s In, Who’s Out, and Who’s Providing the Care, available at www.nsclc.org.)

    Here’s another real life situation.  State regulations often are vague as to what type of care needs an assisted living facility is required to accommodate.  Regulations commonly say that a resident can be evicted when a facility can no longer meet her needs, but with little specificity of a what (if anything) the facility is required to do to try to meet those needs.  (Again, details can be found in NSCLC’s Critical Issues in Assisted Living.)  Assume that a resident’s worsening dementia causes her to wander through the facility, or that another resident loses strength to the point where he needs assistance from two persons in order to get in and out of a bed or wheelchair.  The residents and their families might expect that the facility, following an “aging in place” paradigm, would provide services necessary for the residents to remain in the facility.  In many states, however, a facility would have the legal right to instead evict the residents.

    To be sure, the policy issues here are not necessarily easy.  Standards for staff training and eviction need not be identical for each and every facility but, on the other hand, there needs to be enough standardization so that residents are protected and that consumers know generally what they can expect from assisted living care.

    The status quo is unacceptable, in large part because assisted living has not received enough attention from consumers, legislators, and state officials.  To shed more light on these issues, the National Senior Citizens Law Center and other consumer groups have founded the Assisted Living Consumer Alliance (ALCA).  ALCA provides information to consumers and policymakers, and is developing recommendations to guide the development of assisted living law on both the state and federal levels.  The ALCA website – www.assistedlivingconsumers.org – includes explanations of each state’s assisted living law, along with articles, consumer information, and advocacy tips.

    To be sure, there are many good things about assisted living, not the least being its appearance on the scene as an alternative to nursing home care.  Nursing homes no longer have a monopoly, and the competition is good for consumers and for society overall. 

    The risk now, however, is that assisted living takes a wrong turn, with consumer choice becoming subservient to corner-cutting inclinations of less scrupulous facilities.  Regulatory flexibility is not necessarily a good thing if the flexibility is exercised against consumer interests.

     Now is the time for consumers and their representatives to speak up, both in negotiations with individual facilities and in discussions with legislators and other policymakers.  Assisted living facilities are supposed to be focused on consumer needs, but that will only happen if consumers make their voices heard.

Marketplace Volatility Is Harming The Poorest Medicare Beneficiaries

by NSCLC's Oakland Office

When Congress passed legislation creating the Medicare Part D prescription drug program, it promised a “seamless transition” for those eligible for both Medicare and Medicaid – America’s poorest seniors and individuals with disabilities.  The idea was to use private sector health insurance companies to provide what these people had been getting for decades through Medicaid:  stable, comprehensive drug coverage, subsidized in order to keep needed medicines affordable. 

  Congress gave the Centers for Medicare and Medicaid Services (CMS) responsibility for getting dual eligibles into drug plans automatically and giving them the full subsidy.  Sound simple?  It wasn’t.  From the beginning the program has been endlessly complex and confusing, with plenty of protections for Part D private insurers and few for those in greatest need.

  Two years into Part D, major cracks in the so-called seamless transition for the poor are clearly showing. Unlike the generally consistent drug coverage provided by states through Medicaid, drug plans change the specific drugs they cover each calendar year.  The cost of coverage can also change dramatically; from 2007 to 2008, plans increased monthly premiums an average of 17 percent.  Plans can also impose new restrictions on drug usage, like dosage limits or requirements for prior authorization of prescriptions. 

  These yearly changes have the potential to particularly harm low-income Medicare beneficiaries.  People who used to get drug coverage from Medicaid are now entitled to a full subsidy for the vast majority of their drug costs, but the subsidy has a catch.  Only plans that meet certain criteria—by providing only “basic” coverage with a premium at or below an average bid—qualify to receive full subsidy recipients automatically. 

  This year’s bidding process revealed that the market serving these low-income beneficiaries is enormously volatile.  In each state, between five and twelve of the plans offered at the fully subsidized level in 2007 are no longer available at the same level in 2008.  As a result, 2.1 million low-income individuals found themselves automatically reassigned to a different plan this January.  More than 442,000 weren’t reassigned, but will start getting monthly premium bills—even though their income is so low that they qualify for a full premium subsidy. 

  For this vulnerable population, yearly changes aren’t as simple as tossing out an old drug card and replacing it with a new one.  Besides enduring the snafus and data transfer delays that have plagued the program since its inception, many people subject to reassignment are finding out that their new plan isn’t as good or as comprehensive as last year’s.  In 2008, plans qualifying to receive automatic reassignment cover fewer drugs, and are more likely to require prior authorizations for those drugs.  Yet people being reassigned have, on average, higher drug needs than other Medicare recipients.  They are also more likely to suffer cognitive impairments and many have limited English proficiency, making it hard to understand the changes and their options.     

  CMS recently proposed regulations that would guarantee a minimum of five plans available each year at the full subsidy level.  Despite statements to the contrary, the agency’s proposal would do nothing to reduce volatility.  In fact, CMS estimates that the regulation would result in half a million ADDITIONAL reassignments than under the current policy, in which adjustments to premiums are made after bidding. 

  Congress should ensure that the program lives up to its promises and provide protection.  A better alternative would be to offer a reliable, government-sponsored prescription drug plan instead of private plans.  Some legislators have already floated proposals to do just that, but so far there is no sign that Congress is prepared to tackle the issue, especially in the face of a likely presidential veto.  We hope that the next administration takes a  much closer look at the Medicare prescription drug program—and fulfills its obligations to care for those who are currently falling through its cracks. 

by Gerald McIntyre, NSCLC Attorney

Recent press coverage, including a lead story in the New York Times (Disability Cases Last Far Longer as Backlog Rises,” Dec. 10, 2007) has shined a spotlight on the toll in human suffering caused by excessive delays in the Social Security Administration’s (SSA) appeals process for disability claims. Meanwhile, in a development which has largely passed under the radar, SSA is proposing major changes to its appeals process which will result in many of the same people in the appeals pipeline never receiving the disability benefits for which they have been waiting so long, even though they are clearly disabled. SSA estimates that these changes, if put into effect, would result in $1.5 billion less in benefits paid out over the next 10 years.

Reading the proposed changes to the appeals process would readily put most readers to sleep as they are awash in a host of new technical requirements, barely intelligible to lawyers practicing in the field. However, the cumulative effect of these new rules will make it more difficult for those who most need the benefits to succeed in their appeals. The current appeal process is designed to be informal and consumer friendly in recognition of the profile of the typical disability applicant and to enable people to file applications and the initial appeals on their own without the need to hire a lawyer. The proposed rules would change all that by creating a series of traps for the unwary with time limits for every step in the process, including a requirement that administrative law judges not consider some medical evidence of disability if it is not submitted within strict time limits. The new rules would even require administrative law judges to not consider any evidence that a person’s medical condition has worsened when a case has been remanded for a new hearing on disability.

In a telling admission, SSA states in the summary of the proposed rules that it would like to make the procedure in the final stage of the administrative appeals process more like the procedure in a federal court of appeals. This conveniently overlooks the fact that parties to federal court litigation almost invariably start the process with a lawyer to represent them, whereas Americans almost never hire a lawyer to represent them when they go to their local Social Security office to file an application for benefits. In addition, the educational level of the typical person appealing a denial of disability benefits is significantly less than the level of the American population as a whole. They are also significantly more likely to have a diagnosed mental impairment. On top of this, most people do not even think of hiring a lawyer until they have received a denial on their initial appeal and have requested an administrative law judge hearing. Since most people are not aware of the Social Security disability standard, let alone how to prove it, this means that most applicants do not have sufficient medical evidence in the record at the time they retain a lawyer.

The strict time limits proposed will have the effect of creating a two tier system, discriminating against the poor who are less likely to have regular medical providers and who are far more likely to rely on public health care systems which are often notoriously slow in producing medical records. Indeed, for many poor people who have not had regular access to health care or whose doctors are not familiar with what is required to establish disability under the Social Security disability standard, it will be necessary to arrange for consultations or perform tests in order to establish that the disability standard is met, thus making it more difficult to provide adequate medical records within these new time limits.

The Administration seems to be motivated primarily by a desire to reduce the current high percentage of people winning benefits on appeal. Congress needs to examine these proposed changes before they go into effect so they do not thwart the very purpose of the disability program by denying benefits to people with proven disabilities simply because they could not afford regular medical care or were unable to navigate various procedural pitfalls. The final date for comments on the proposed rule is December 28, 2007.

by Gene Coffey, NSCLC

I had the privilege last month to speak at a conference in Louisville that was hosted by a Kentucky-based coalition called Advocates to Reform Medicaid Services (“ARMS”). The conference was devoted to identifying the best methods for ensuring choice and independence for individuals in need of long-term care, a topic that is becoming more pressing with each passing day. Just how pressing? Well, consider this: Kentucky’s two gubernatorial candidates appeared at the conference and debated each other for a solid hour strictly on the topic of the delivery of long-term care.

Now, there is no question that long-term care in general is capturing this attention largely because of the tremendous spike in the need for such care that the country anticipates during the next twenty years with the aging of the boomers. Indeed, regardless of how that care might be delivered, the subject is receiving such a heightened level of attention because of the sheer scope of the coming demand.

But this is exactly what made the effort on the part of the ARMS coalition to put this conference together and pin their gubernatorial candidates down on their positions so important. With the increased focus on the pending need for long-term care, ensuring that the delivery method of that care is a central feature of the discussion is pivotal.

But why, you might ask. Why would there be a coalition singularly focused on the issue? What “reform” does Medicaid need in the context of long-term care? And why should a broad spectrum of the public care?

Well, with regard to the question of “reforming” Medicaid, what is at issue is Medicaid’s infamous “institutional bias.” You see, the way the Medicaid program is set up, institutional care is the preferred method of delivery for an individual who, because of a chronic or disabling condition, needs frequent help in accomplishing what is referred to in the business as her activities of daily living (e.g., eating, bathing, or dressing), or instrumental activities of daily living (taking medication, preparing meals). A state that is participating in the Medicaid program (which is currently every state and D.C.) must provide nursing facility coverage to such an individual, if she also meets Medicaid’s financial eligibility requirements. However, it is exclusively at a state’s option to provide a package of institutional-equivalent services to the same individual in her home. If the state wants to exercise that option, it must request special permission from the federal government to provide such a package, and will receive the permission only if it meets a number of requirements.

Okay, so, Medicaid has its institutional bias. Why should we all care? Well, first, in passing the Americans with Disabilities Act back in 1990, Congress affirmed that maximizing an individual’s potential in the community is in fact a civil rights issue grounded in the U.S. Constitution. That should hopefully be enough to generate concern in whether people who can function in the community are unnecessarily institutionalized.

But if that is not enough to capture your interest, consider the likelihood of your own need for Medicaid’s assistance should you need long-term care. Medicaid is the single largest purchaser of long-term care services in the nation. Medicare does not have a long-term care benefit (it will only cover 100 days of nursing facility care, and only where that care is provided immediately after a three-day hospital stay and a doctor has provided approval. And Medicare advocates will tell you that a 100 day prescription is a rarity). Therefore, people typically pay out of their own pockets for long-term care, but they then see their saving quickly depleted—in some states a one-year stay in a nursing facility will cost more than $100,000. Private long-term care insurance? Well, because of the expensive nature of the covered services, you can probably guess that the premiums don’t exactly amount to chump change, and many individuals find the policies cost prohibitive.

Because of sheer cost of long-term care and the absence of meaningful coverage alternatives, Medicaid substantially stretches its financial eligibility rules strictly for people in need of long-term care. What all of this means is that if you need long-term care, there is a very good chance that Medicaid will ultimately cover at least part of the cost. But again, the preferred method of that delivery is institutional care, and that is exactly what so many consumers and advocates have been trying to change for years. And now that long-term care is such a hot topic, they are rightfully capitalizing on the opportunity to demand fundamental changes in delivery as the conversation focuses on how increased demand will be met.

Just how important is this goal of ensuring alternatives to institutional care? You know, I have friends in the advocacy community who, when referring to individuals they know who transitioned back to the community from nursing homes, call them nursing home “survivors.” When I have heard them use this phrase, the tone frequently seems to imply that “survival” is more about the restored freedom the individuals achieves in getting back into the community, and not necessarily about what might have occurred in the facilities.

But it appears more and more that “survival” is about the nature of the stay. The New York Times reported earlier this year that the federal government’s lax enforcement of nursing home quality-of-care standards has allowed the worst violators in the country to repeatedly harm their residents. If that was not enough, the Times released a subsequent report in September revealing that private equity firms are rapidly buying up nursing home chains and cutting staff and services to make a profit. Because of the convoluted schemes of ownership wrought by the private equity firms, neither federal regulators nor private injury attorneys know whom to target when residents are harmed. The article quoted one firm’s representative as saying that the aging of the Boomers makes nursing home ownership “the surest bet.” There you have it. Charge the money, scrimp on services and staff, and shield yourself from responsibility. A fortune awaits.

Thus, ensuring community-based alternatives becomes critical–it not only preserves freedom that is guaranteed by the U.S. Constitution itself, it also protects vulnerable individuals from serious harm.

The good news is that the expansion of community-based alternatives is at hand. Congress earmarked close to $2 billion a year ago for a program called “Money Follows the Person,” in which the federal government financially rewards states that move Medicaid-eligible individuals from nursing homes back into the community. The federal government has also committed funds to states for nursing home “diversion” programs that are designed to educate individuals at risk of institutionalization about the full spectrum of their community-based options. Some states, meanwhile, are developing their own programs. One state recently passed a law requiring that anyone admitted to a nursing home be counseled immediately after admission on their community-based alternatives, while another state last year made community-based long-term care services mandatory for all Medicaid-eligible individuals in need of long-term care.

But there is still much work to be done. Again, consumers and their advocates have been fighting for the maximizing of community-based alternatives for years, and none of them expect that the new programs built on top of the old ones will fundamentally change things overnight; they understand that, while the issue is finally getting crucial attention among some lawmakers, even more awareness is necessary. Sure, two gubernatorial candidates have debated their long-term care positions, but how often has the matter been discussed in the numerous presidential debates that have already taken place for next year’s election?

I am not sure that the subject has surfaced at all. But its time is certainly coming, and when even our presidential candidates are forced into a serious discussion about how we will meet the demand for long-term care in the coming years, we ought to hope and expect that meeting the demand is not in and of itself the end game, but rather that meeting the demand in a way that preserves freedom and safety is. For those of us who just might need long-term care one day, we can thank the consumers and advocates currently working so hard to make sure that this will in fact be the direction that debate takes.

By Simon Lazarus, Public Policy Counsel, National Senior Citizens Law Center. 

Copyright 2007 Simon Lazarus. 

The intense national debate over what to do to restore the nation’s health safety net is focused on Congress, as the venue for improving existing programs and enacting new ones.  This is both understandable and appropriate.  What is a little less understandable,  and quite inappropriate, is that zero attention is paid to the courts.  There is virtually no focus on the role that the judicial branch has played, can play, and will play in ensuring – or undermining – the access of American citizens to affordable and adequate health care.

In fact, during the near-half century since the contemporary structure of national health entitlement programs was put in place, federal (and state) courts have hosted endless, wide-ranging, fierce battles over their terms, governance, availability to beneficiaries, and, especially, remedial options for beneficiaries to vindicate their rights and interests.  The decisions yielded by those battles have significantly affected the scope, effectiveness, and impact of those programs.

Regrettably, in the past two decades under the Rehnquist Court, much of that impact has been negative – that is, the jurisprudence spawned by the Rehnquist Court more often than not narrowed the scope of the nation’s health safety net laws, insulated officials from accountability for maladministration of them, and disrupted or blocked citizens’ access to benefits to which they were entitled.  Frequently these decisions frustrated rather than furthered the broad and generous goals that animated the Congresses which enacted the programs in question.  

 There is good reason to anticipate that this disconnect between liberal statutory policy objectives and judicial administration of the nation’s health laws will grow sharper and more bitter, and stay that way for a long time. 

·             The electorate, Congress and, even more so, state governments appear to be shifting left – especially on issues related to health security.  “The political landscape of the nation has shifted,” an early 2007 Pew study concluded, “from one of partisan parity to a sizable Democratic advantage.” [1]   The same Pew survey found significantly increased public support for government guarantees of health security.[2]

·             Simultaneously, the Court has shifted further right, especially on the key issue areas in which the court battles over health entitlements have been fought.  Already, the electorate appears to have grasped this shift.  Gallup recently reported that public approval of the Supreme Court declined in 2007, with a third of Americans saying the Court is too conservative, and approval of the Court much higher among Republicans than among Democrats or Independents.[3]

·             This prospective gap between an electorate demanding a stronger safety net and an activist judiciary hostile to that goal should be among the most important issues at stake as judicial nominees, especially Supreme Court nominees, are selected and vetted – whether the next President with a chance to offer nominations is a Republican or a Democrat. 

    On October 19, I will present a paper at a conference of The Justice Partnership:"Forgotten Americans: The Future of Support for Low-Income Older Adults." The paper, from which this post is excerpted, will spotlight two arenas of the contemporary struggle over the federal courts’ role in shaping and implementing components of the nation’s statutory safety net.  The first is Medicaid, particularly the ability of Medicaid beneficiaries to enforce their statutory rights in court. The second area is employer-sponsored health plans, again looking in particular at the availability to beneficiaries of judicial remedies for violations of their rights.  Here the Court has turned a landmark 20th century reform, the Employee Retirement And Income Security Act of 1974 (ERISA), into what the late Judge Edward Becker – a Reagan-appointed Republican – describes as having "Evolved into a shield that insulates HMOs from liability for even the most egregious acts of dereliction committed against plan beneficiaries, a state of affairs . . . directly contrary to the intent of Congress."[4]  To the 134 million Americans covered by employee-sponsored plans, the Court has delivered a double-whammy – eviscerating ERISA’s remedial provisions while preempting state alternatives. 

 And finally, the paper will briefly suggest action agendas for the courts, for Congress, and, especially for advocates concerned with the integrity of these and other programs addressing the economic welfare of vulnerable individuals and constituencies.  The afore-mentioned advocates include many of the participants in the conference for which this paper has been written.  For us, I offer a suggestion to close out this opening section.  The suggestion is that the fault is not in our stars but in ourselves.  We could be witnessing the birth of a truly radical third branch of our federal government – a Supreme Court, with faithful legions in the lower federal courts, as well as conservative advocacy, academic, and political circles, dedicated to a vision of reactionary change that goes well beyond the culture war issues that monopolized public and political attention throughout the Rehnquist era. This has been a secret hiding in plain sight for well over a decade.  Yet we, who have had the facts before our eyes, have not taken the full measure of what they could portend.  More important, we have done far, far too little to bring the issues we have been fighting in court to the attention of the public, or to the bar of politics, where they belong.  When most Americans hear liberals warn of the dangers of a Supreme Court dominated by a John Roberts or a Samuel Alito, they think the threat is just about abortion rights or religious autonomy or the civil liberties of suspected terrorists.  Virtually no one has any notion that a militantly activist conservative Court could threaten safeguards critical to their health, their savings, and kindred bottom-line, economic security interests.  That neither voters nor politicians know this, let alone act on it, is our fault.  Changing that misperception should be, I suggest, a challenge at the top of our advocacy agendas.

    You can read the entire paper online after the Oct. 19 conference, on the NSCLC website.

[1] Pew Research Center for the People & the Press, Trends in Political Values and Core Attitudes: 1987-2007 7 (2007), available at http://people-press.org/reports/pdf/312.pdf.

[2]Id. at 12-16.

[3]Joseph Carroll, One-Third of Americans Say the U.S. Supreme Court is “Too Conservative,” The Gallup Poll (Oct. 2, 2007), http://www.galluppoll.com/content/default.aspx?ci=28861.

[4]Difelice v. Aetna US Healthcare, 346 F.3d 442, 553 (3d Cir. 2004)

By Eric Carlson, NSCLC Attorney

I write a legal treatise called “Long-Term Care Advocacy” that includes the statement that “[o]n both the federal and state levels, enforcement of nursing home law leaves much to be desired.”  Is there support for that statement?  Oh yes.  The statement’s footnote cites to so many reports that the footnote alone takes up half of one page, the entirety of the following page, and a good-sized chunk of a third page.  And these days, when I prepare the book’s annual update, I don’t even bother adding many of the new reports to the footnote, since the new reports are saying essentially the same thing that the other reports have said over the years.

So, after a steady stream of reports, newspaper investigations and television exposes, why are so many nursing homes so bad, and why are the majority of nursing homes so predictably mediocre?  Not to blame the victim, but a significant part of the problem lies with the general public’s unfamiliarity with long-term care generally and nursing homes specifically.  The occasional intervention by an inspector or reporter cannot substitute for polite but insistent advocacy by a resident or a resident’s family member.

Let’s call advocacy by a more derogatory but descriptive term – complaining.  Nursing home residents and their families should complain more.  They should complain when the resident is required to wake up at a particular time and go to bed before she wants to.  They should complain when family members are forced to leave at the end of posted visiting hours.  They should complain when the nursing home gives less attention to residents whose care is reimbursed through the Medicaid program.

In each of these situations, the resident would be right to complain, because the nursing home would be violating the federal Nursing Home Reform Law.  As detailed in our consumer guide, 20 Common Nursing Home Problems – and How to Resolve Them, many nursing homes follow standard operating procedures that violate the law.  Contrary to the claims of many nursing homes, residents in fact have the right to set their own schedules, within reason.  Family members can visit at any time, 24/7.  And nursing homes cannot discriminate against Medicaid-eligible residents.

I ordinarily don’t speak of residents “complaining” to a nursing home – “complain” undoubtedly has a negative connotation.  But I’m embracing the word for this posting in order to emphasize the importance of conflict in the relationship between the nursing home and (on the other side) the resident and the resident’s family.

Currently, residents and their family members are much too timid.  Hundreds of times – maybe thousands – I’ve been told that a resident or family member is afraid to raise a problem with a nursing home.  The resident or family member is scared of retaliation, or is just intimidated by the situation.  This timidity is why nursing homes are able to maintain illegal operating procedures.  Consumers often are unwilling to speak up and, without consumer pressure, nursing homes cut corners and skimp on care.

Let me be clear here – I understand that it’s much easier for me to complain than it is for a resident or family member to do the same.  I don’t live in a nursing home, and I’m not dependent on nursing home staff members.  But that fact doesn’t change my conclusion, based on more than 16 years of representing long-term care residents, that complaining is a plus for the resident.

Think of it from the viewpoint of a nurse or nurse aide.  Who will get better care, the resident who is afraid and says nothing, or the resident who complains -- intelligently and appropriately politely -- when care is inadequate.  My money is on the complaining resident, based on what I have seen.  I have represented many residents in bitter disputes and, after we’ve won, the residents have received improved care.  The nursing home has learned that it must treat that resident with respect, since he has demonstrated that he’s willing to speak up.

People have told me that the Baby Boomer generation will change the balance of power in nursing homes because the Boomers will demand more and defer less.  Maybe.  But there’s no need to wait that long.  Today’s nursing home residents are well advised to demand more themselves – they already are entitled, legally and morally, to individualized and humane nursing home care.

By NSCLC's Oakland Office

A health care safety net for seniors is unquestionably a great thing—but what happens when the net catches private insurance companies instead?     

Industry lobby groups are up in arms over the House’s passage of the Children’s Health and Medicare Protection (CHAMP) Act, a bill to that would reauthorize the State Children’s Health Insurance Program and shift Medicare spending away from private insurance companies and toward traditional, fee-for-service Medicare. Karen Ignagni, leader of America’s Health Insurance Plans, claims that the bill “shreds the safety net for millions of seniors.” 

She is referring to those enrolled in so-called “Medicare Advantage” plans that provide private insurance coverage as an alternative to original, fee-for-service Medicare. Enrollment in these plans has exploded since Congress enacted the Medicare Modernization Act (MMA) of 2003, which increased federal subsidies for private Medicare health plans. Thanks to the MMA, private insurers now get paid an estimated 112% of what the government spends to cover the medical costs of someone on original, fee-for-service Medicare. The program has generated huge profits for insurance companies, not surprisingly. 

Given this extra subsidy, it makes sense for insurers to push their Medicare Advantage products. They have done so with a vengeance. As enrollments have increased, so have complaints about misleading, fraudulent, and abusive sales and marketing tactics. This summer the Senate Special Committee on Aging heard testimony about instances of wrongdoing by private plans that ranged from to soliciting door-to-door in violation of federal regulations, to private agents falsely representing themselves as government representatives, to outright forgery of consumers’ signatures on Medicare Advantage applications.

Even absent fraud, many seniors simply sign up for Medicare Advantage plans without understanding the (very complicated) fine print. Later they find out that signing up for the plan hardly gave them an “advantage.” They may have trouble getting needed medical care because their long-time doctor accepts original Medicare, but not the new private plan. Or they may discover when they get sick that the lower premiums offered by their Medicare Advantage plan are offset by higher charges for hospitalization. 

When examining the subsidies provided to plans and the questionable benefits to beneficiaries, it begins to look like the safety net that is getting shredded is protecting insurers, not beneficiaries.

In contrast, the CHAMP Act would strengthen a real health care safety net for seniors and individuals with disabilities. It would gradually decrease the extra subsidies to Medicare plans offered by insurance companies and use that money to improve the general Medicare program by, among other things, increasing coverage of preventive and mental health services.

For the poor and vulnerable seniors whom we represent at the National Senior Citizens Law Center, parts of the CHAMP Act targeted specifically toward low-income and minority Medicare beneficiaries are particularly good news. Almost $11 billion dollars would go toward making it easier for low-income seniors and individuals with disabilities to qualify for programs that help pay for Medicare premiums and prescription drug costs. For instance, current law prohibits anyone with more than $10,210 in savings from qualifying for the Low Income Subsidy for the Medicare prescription drug program. The CHAMP Act would lift the asset limit for individuals to $17,000, and increase it annually starting in 2010. More people could get affordable drug coverage without having to deplete modest life savings. 

The products Medicare Advantage sponsors are peddling, whether good or bad, are not a safety net. A safety net never has to trick seniors into signing up. A safety net provides help when things go wrong, when money is stretched too thin, when choices must otherwise be made between paying for food or filling a prescription. That is exactly what the CHAMP Act would do for millions of low-income Medicare beneficiaries. 

[This article is adapted from a somewhat longer article posted on American Prospect Online June 29, 2007.
© 2007 by The American Prospect, Inc. The original article is available on The American Prospect website, www.prospect.org.]

By Simon Lazarus,
Public Policy Counsel, National Senior Citizens Law Center

Many Americans have now caught sight of a specter once imagined only by a tiny cadre of legal cognoscenti: A Supreme Court bound and determined to reprise the Court's reactionary role from a century ago, out to squelch progressive policies whatever their source.  In 5-4 decision after 5-4 decision, Chief Justice John Roberts has scorned the kind of "modest," "consensus"-seeking course he charted in his confirmation hearing and a number of media interviews following his confirmation. In the most significant of these 5-4 decisions, the school integration decisions announced July 30, Roberts and his allies audaciously underscored that they will use every tool at their command to defeat government-sponsored race-conscious methods of promoting ethnic diversity in elementary and secondary education – even though that goal is broadly supported by the public and by substantial elements in both political parties, and was approved by duly elected local school boards in Seattle and Louisville.

As they push aside the debris from the Roberts Court's second term, what should liberals do and say? Here are three quick and simple suggestions.

First, with respect to the school integration cases specifically, stop casting the issue as one about race, and disengage from backward-looking debates about whether the legacy of Brown v. Board of Education is better served by race-conscious remedial desegregation or by Roberts' concluding sound-bite, "The way to stop discriminating on the basis of race is to stop discriminating on the basis of race." The key issue is, going forward, what business do five unelected, life-tenured judges have dictating policy, in this case policy for ensuring that our institutions harmoniously accommodate an increasingly heterogeneous population -- especially when those judges lean well to the right of an electorate trending center and left?

Second, wherever this hard-right bloc is coming from, it isn't the law. In the school cases, Chief Justice Roberts offered no pretense of deriving his argument from the text of the Fourteenth Amendment, much less from the record of what the framers of the amendment intended when they wrote it. And no wonder. That text guaranteed African-Americans, and all other persons, equal protection of the laws. These words were intended to mean what they said: they outlawed practices that systematically rigged state legal systems to facilitate the suppression of blacks; there is nothing in that text that would bar Congress and state governments from ever referring to race in writing laws to attain the goal of equal protection.

On the contrary, as legal and historical scholars -- 60 of whom signed an amicus curiae brief to the Court -- have exhaustively demonstrated in scores of books and scholarly articles, Reconstruction Congresses, in addition to adopting the Thirteenth, Fourteenth, and Fifteenth Amendments, aggressively promoted racial integration as a goal and deployed race-conscious measures to achieve it.  Principled conservatives acknowledge that the Reconstruction generation "originally" understood the Fourteenth Amendment to promote equality for blacks and posed no 'absolute," across-the-board bar to race-based classifications. Chief Judge Michael Boudin of the First Circuit Court of Appeals, a widely respected Bush I appointee, observed in a 2005 case that a Lynn, Massachusetts integration plan similar to those in Seattle and Louisville "is far from the original evils at which the Fourteenth Amendment was addressed . . . [which were] the oppression of one race by another." In the case itself, in the Ninth Circuit decision under review by the Supreme Court, Judge Boudin's approach was endorsed by prominent conservative and Reagan appointee Alex Kozinski.

In dispatching these legally conscientious Republican jurists, both Roberts' and Kennedy's opinions of yesterday betray keen awareness of their frailty on the basic law applicable to the case. Neither makes virtually any mention of the relevant text, its appropriate and logical construction ("strict" or otherwise), or its history.

Third, again, contrary to the earnest commitments offered by Chief Justice Roberts pre-confirmation, these decisions embody the direct opposite of "judicial restraint" and respect for democracy. Justice Breyer's elaborate dissent details the long history of segregation and resegregation which the Seattle and Louisville school districts had sought to remediate, elaborating the options that had been tried, abandoned, allowed, disallowed, failed, and succeeded, however temporarily or partially. Roberts in his opinion literally disdains to consider these facts. In essence, he semantically dismisses the legitimacy of the districts' goal of promoting diversity by relabeling it "racial balance" -- thereby excusing himself of the annoyance of taking into account the circumstances faced by the school officials, and the electorates who put them in office.

For liberals to take back the federal judiciary -- and hold it -- will be a long slog. Success will require following Justice Breyer's lead and enlisting voters in communities like and in that cause.   

Copyright: The American Prospect.  The original article can be accessed at http://www.prospect.org/cs/articles?article=the_most_activist_court

by Michael Kelly and Gerald McIntyre

Something seems grotesquely out of proportion when you punish someone for failing to appear in a court by cutting off his or her primary or only source of income. But this is what the Bush Administration’s Social Security Administration is doing. And not to just a small handful of people. Well over 100,000 recipients of social security and SSI (Supplemental Security Income, the federal government’s disability support program) have lost their benefits as a result of the policy summarized in the title above.

How could our government engage in such an injustice? How did this happen?

About a decade ago, Congress amended the statute relating to SSI and later the Social Security program, to provide that persons “fleeing to avoid prosecution” would not be entitled to benefits. Since felons serving time in jail have long been excluded from Social Security and SSI benefits, this extension of an established principle seemed at the time a small, routine and rather unimportant addition to existing policy. And nothing noteworthy happened for a number years in connection with this small adjustment. As you can imagine, a very small number of disabled Americans or people over the age of 65 are on the lam running from the law.

Now comes the George W. Bush administration, which has staffed the top echelons of government agencies with conservative true believers who would like to roll back the reforms of the New Deal, particularly the programs of the Social Security Administration. The new ideologues looked at the relatively unused authority to terminate benefits for people fleeing prosecution as a means to reduce SSI and Social Security rolls, and they came up with an outlandish interpretation or assumption that anyone with an outstanding warrant for failure to appear in court is “fleeing prosecution,” even if the person never knew there were charges to flee.

What are these warrants for failure to appear in court? These are orders routinely issued to “no show” defendants by state courts around the country. Defendants in serious cases are either in jail before trial and are brought to trial by the authorities, or they have to forfeit bail if they don’t show in court.

So we are talking typically about low-income people caught up in minor criminal matters. The warrant is a notice by the court that they expect the absentee to come to court or be subject to arrest. Police and court officials know how hit-and-miss is the system of serving and enforcing these warrants. Some people lose or don’t understand notices. Other people--particularly those in the bottom rungs of the economic ladder--move or fail to receive notices because methods of delivery through sheriff’s office or process servers or other means are sometimes shoddy or highly unreliable. Some people routinely ignore official summonses and official notices of all kinds. The numbers of these warrants are so enormous and are considered by police of such little consequence (except where the warrant becomes grounds to arrest a high priority criminal suspect) that courts rarely formally report these numbers.

Little or no data exists on the number of outstanding warrants, but the numbers are probably in the millions. The National Center for State Courts, for example, the group that collects national information on the activities of state courts, has no information reported to it from states about outstanding warrants for failure to appear. Every experienced court watcher, however, knows that the leakage in our criminal justice system through “no shows” is massive. For example, the main criminal trial court in Baltimore, a city of 636,000 people, carries on its books over 200,000 outstanding warrants for failure to appear.

As Social Security began cutting off SSI and Social Security benefits to people with outstanding warrants for failure to appear in court (they acknowledge they have terminated benefits thus far for over 100,000 people), it became immediately clear that the only people being denied benefits are those not fleeing prosecution. Most people are found living somewhere in another part of the country from the location where the warrant was issued. These warrants are years, if not decades old, and police have no interest in pursuing these cases.

So Social Security is busily terminating benefits to individuals settled in place who are not going, let alone fleeing, anywhere. In fact, in Macon, Georgia, Social Security has suspended benefits for at least three people who were determined to have fled to nursing homes. One of these cases involved a 25-year-old charge of failing to pay a motel bill. The nursing home resident never even knew that charges had been filed against him. He was able to get his benefits restored after a year through the assistance of a legal services program in Georgia and a public defender in Seattle. Not everyone is so lucky. An Iowa man, diagnosed with paranoid schizophrenia and physically unable to travel, was denied benefits because of an old shoplifting charge in California. He became homeless as a result and not long afterward his bloodied and battered body was found in an abandoned garage in Des Moines. In a current case in California’s Central Valley, a woman who is blind and in a wheelchair had her benefits suspended last year and has been unable to pay her rent. The landlord was sympathetic and held off on taking action, but has now commenced eviction proceedings against her for nonpayment. She has nowhere to go.

Our organization, the National Senior Citizens Law Center (NSCLC) has sued the Social Security Administration to prevent denial of social security and SSI benefits, arguing that the assumption made by Social Security (that an outstanding warrant presumes flight) clearly violates the standard established by Congress. Three federal district courts and the Second Circuit Court of Appeals (covering NY, Connecticut, and Vermont), in a case argued by Gerald McIntyre of NSCLC, agree with us and have ruled against Social Security and insisted on some showing of intent to flee prosecution. Rather than appeal these cases and suffer a loss at the Supreme Court, Social Security continues, illegally, to deny benefits (except in NY, Connecticut and Vermont) to people all over the country with old warrants for failure to appear.

Why wouldn’t Social Security, an agency that has in the past enjoyed a fine reputation, quickly reverse a decision that is clearly improper and could not withstand scrutiny in any court? The only plausible explanation is that ideology trumps a sense of fair play and decency in the Bush Administration. Perhaps, too, the bureaucrats at Social Security have been fearful of the budgetary clout and entitlement cost-cutting ambitions of conservative political leaders in the U.S. Congress. NSCLC must now reluctantly—we sat down with Social Security to try to settle this problem--prepare a national class action lawsuit to prevent termination of basic income support to thousands of older and impaired Americans to prevent an injustice to these citizens that serves only to enforce stale warrants that are of no interest to courts, police or prosecutors.

By Gene Coffey, staff attorney, National Senior Citizens Law Center

U.S. News & World Report magazine ran a cover story last fall entitled Taking Care of Mom & Dad: A Boomer’s Guide. The cover featured an older woman seated in a chair with her daughter standing above her. The daughter’s hands were resting on mom’s shoulders, a sign of affection and preparedness from daughter, a sign of safety for mom.

The story was designed to give very specific information about finding the most suitable environment for older individuals who may reach a point where they may not be able to live alone. But the story’s title–Taking Care of Mom and Dad–reflects more broadly the very personal connection we all have with older Americans, and the accompanying responsibility we all share in ensuring that their safety and dignity is maintained throughout the aging process. The fact that the story was designed to be a "Boomer’s Guide" is a reminder of just how high this responsibility will rise in the coming years with the dramatic increase in our older population.

The affection and preparedness portrayed by the daughter on the cover matches with the reality of our current efforts. While $200 billion is spent each year in the U.S. on long-term care services, the majority of long-term care provided in this country is actually delivered for free by friends and family of those in need of care. For care that is paid for, the children of those in need are already paying quite a bit. Indeed, the New York Times ran a story this past December on the extent to which adult children of frail parents are rapidly going through substantial portions of their own savings to pay for their parents’ care.

But while our own responsibilities will increase in the coming years, we will need our government to partner with us in facing this vital task. Shouldn’t we be able to rely on this? Unfortunately, some recent stories seem to indicate that we have reason to be concerned.

The U.S. Government Accountability Office (GAO), a federal government agency, reported in March that lax enforcement by federal officials of nursing home quality-of-care standards has allowed the worst nursing homes in the nation to remain open and continue to provide poor care. Citations for harm to residents have continued to pile up for these facilities, but the fines levied by federal officials responsible for enforcement have been so weak that the facilities, as the GAO reports, have been able to simply include them as part of their operating costs. Think about this for a moment. The level of federal oversight of some nursing homes in this country is rendering the infliction of harm on residents a routine part of doing business.

But this is not all of the bad news the GAO had to deliver. The agency also reported on a survey it conducted on Medicaid long-term care applicants. Medicaid is the single largest payor for long-term services (e.g., nursing facility services) in the nation. Medicare does not cover more than 100 days of care in a nursing facility, and the private cost of care is roughly $70,000 annually, so Medicaid serves as a vital safety net for individuals who need long-term care.

But some members of Congress insisted last year that many older Americans and persons with disabilities were transferring fortunes to family members in order to avoid paying for their long-term care, and were subsequently qualifying for Medicaid after their fortunes were gone. To address this alleged problem, Congress enacted severe penalties for Medicaid long-term care applicants who have made any financial gifts in the five years preceding application. Assistance for a child purchasing a home, or for a grandchild’s college tuition, or even a donation to a church will result in an eligibility penalty for an applicant.

Was this punitive law even necessary? Not according to the GAO’s results. You know what the agency found? That people who seek Medicaid coverage for long-term care are poor, that they generally do not have a lot to give away, and where they have made gifts, the gifts have been small. Under the new rules, however, those small gifts will result in eligibility penalties.

The congressman who asked the GAO to conduct the study proclaimed, "The report confirms that the Medicaid long term care program is not rife with cheats and scam artists. The seniors who enter nursing homes and end up being covered by Medicaid are truly needy." Unfortunately, this isn’t much of a consolation to those who will be subject to the punitive penalties that Congress has produced.

For those capable of contributing more to their long-term care, the news does not get much better. The same federal law that instituted the harsh new Medicaid eligibility penalties also tried to create incentives for the purchase of long-term care insurance. Is long-term care insurance something the federal government should be promoting? One might have some questions after reading a New York Times story published in March that reported on the "thousands of grievances and lawsuits" that have been filed in recent years by holders of long-term care policies. In California, nearly one in every four claims has been denied. The person profiled at the outset of the story spent twelve years paying for a policy to a company that refused to cover her nursing home expenses when she moved in. At the time, she had been diagnosed with early-stage dementia, suffered from hypertension and diabetes, and took 37 different pills a day. The company said she wasn’t sick enough.

These stories are not reflective of a federal government ready, willing and committed to fulfilling its role in helping our older population respond to the challenges facing them ahead. As individuals, we need to make own efforts to help our parents and grandparents feel secure, but our government should feel equally moved to cast this same sense of security. Apathy, and in the example of the new Medicaid transfer rules, disdain seem to have characterized the federal government’s most recent demeanor toward our older population. Yes, we recently witnessed the addition of a drug benefit to the Medicare program, but wouldn’t the program make us more confident about the federal government’s attitude if a member of the majority party that got it passed in Congress did not declare on 60 Minutes that "the pharmaceutical lobbyists wrote the bill"? (By the way, the GAO released a report on the Part D program earlier this month that faulted CMS for its treatment of the poorest Medicare enrollees. According to the GAO, CMS "objected to what it perceived as the overwhelmingly negative tone" of the findings.  Do tell.)

It was Harry Truman’s compassion that President Johnson identified as the catalyst behind the government action that produced the Medicare program in 1965. With ever more dramatic challenges facing older Americans in the immediate future, the federal government must signal that this compassion is still present on Capitol Hill, so that older Americans may feel secure that its government will take action to address the problems that surface. Our loved ones deserve nothing less.

---

Gene Coffey is an attorney with the National Senior Citizens Law Center. You can reach him at (202) 289-6976.

I enjoyed the Borat movie, and reflexively sided with Borat when I read news reports about the law suits filed against him (alter ego Sacha Baron Cohen, actually) and the various companies behind the movie.  So the drunken Chi Psi fraternity brothers thought they were being filmed for an obscure documentary, and didn’t realize they would be laughed at by moviegoers from Maine to Malibu? Too bad, so sad--the movie company reports that it has signed releases from the frat guys, the villagers in Borat’s purported home town, and every other person appearing in the movie.

But on second thought, I’m siding with the Chi Psis.  In my own work, representing residents of nursing homes and assisted living facilities, I’m well familiar with the “We have a signature” argument.  Nursing home admission agreements frequently purport to reduce or eliminate the nursing home’s responsibility.  In admission agreements and accompanying videos, nursing homes advise family members to have “reasonable expectations”--to understand, for example, that staffing levels may be insufficient and that a resident’s future injury will be presumed to be the family’s fault for their failure to supplement nursing home staffing with a one-on-one private duty aide.

Assisted living operators use bait-and-switch arguments to justify the use of “negotiated risk” agreements.  Negotiated risk is promoted as increasing resident independence, through documenting and honoring a resident’s decision to act against professional advice. The most common example is a diabetic choosing to eat dessert.  In reality, however, negotiated risk agreements waive a facility’s liability when a facility cannot meet a resident’s health care needs.

Today, the most vigorous debates occur around mandatory arbitration.  Admission agreements commonly recite that the resident has waived her right to a jury trial and that any and all future disputes instead will be referred to arbitration, often on terms that overwhelmingly favor the facility. Unfortunately, courts frequently uphold these arbitration agreements, even though there is no earthly reason why a resident during the admission process would choose to bind herself to arbitration for unknown future disputes.

This problem is bigger than long-term care.  Consumer contracts in general are increasingly likely to contain unfair provisions.  Most of us have felt the helpless resignation in clicking “I accept” on the incomprehensible disclaimers that often accompany on-line purchases.

Change must take place in Washington. The Federal Arbitration Act was written to encourage enforcement of business-to-business arbitration agreements, but its warped interpretation today preempts states from legislating consumer protections.  At a minimum, federal law should be amended to prohibit health care providers from obtaining pre-dispute arbitration agreements.

Let’s face it – in the consumer context, arbitration “agreements” are a joke.  You and I sign them not because we have made a deliberative decision, but because we feel that we have no choice. 

I hate to admit it, but if the Borat producers had given me a release, I might have signed it too, even if I hadn’t had anything to drink that morning.

By Edward D. Spurgeon, Board Member, NSCLC; Executive Director, Borchard Foundation Center on Law and Aging; and Distinguished Visiting Professor and Holder of the Gordon D. Schaber Chair in Health Law and Policy, Pacific McGeorge School of Law

Soaring health care costs and almost 47 million uninsured (6.5 million in California alone) are economic and moral imperatives for national health care reform. By any reasonable measures-access, cost and overall health status- the system is broken and must be fixed. Despite the world’s best trained health professionals, excellent hospitals and rehabilitative care centers, state of the art medical equipment, technologies and pharmacology, and well funded medical research and development, the United States has lacked the political will necessary to forge a comprehensive solution that assures every American access to affordable basic preventative, acute and long term health care. Reform legislation should and can be enacted in California this year, and action by the country’s most populous state should also advance the nation toward a longer term national solution.

Since the last failed national comprehensive health care reform effort of the early 1990's, Congress has taken only limited and incremental steps to improve existing federal programs like Medicare and Medicaid (called Medi-Cal in California), through the 1997 creation of the State Children’s Health Insurance Program (SCHIP), the addition to Medicare of a prescription drug benefit and expansion of managed competition in 2003, and various cost cut