A woman’s nightmare: Long-term care—Two elder law attorneys’ perspectives

He looked into his wife’s eyes and flatly stated, “I’ll put a gun to my head before I ever go to a nursing home.” Even if he really believes this, it is very seldom true. Men often voice macho denials of the realities of aging and long-term care. In truth, it is often his wife who bears the greater burden caused by his long-term care needs and her own aging challenges. Yes, his wife—like millions of her sisters—may spend years and all their money caring for her mate. She often selflessly provides in-home care until eventually the day comes when her strength is not enough to pick him up or keep him from wandering away from home. On that day, it might be a doctor, a discharge planner, or a policeman who finally looks into her eyes and speaks the real truth to her: “I’m sorry, ma’am. You cannot take care of him at home anymore.” It is then that most women begin to experience phase two of the elder care nightmare. Most seniors do not realize that Medicare does not care about them when they need long-term care. Medicare was designed to take care of people who get well—but Medicare does not provide much care for people who have chronic, long-term illness.¹

In our practice as elder law attorneys, we provide advocacy for senior citizens and the family members who love them. Our typical clients are aging men and women who have worked in our factories, fought our wars, paid our taxes, and raised their own children to become productive citizens. We see them when they come to our office beaten down by the physical decline of long-term illness. They seek assistance with estate planning, disability benefits, Veterans benefits, and Medicaid qualification.

Most of our clients are frugal people who were doing fine on their modest incomes until they were hit by the wrecking ball of long-term illness. Our typical clients are a husband and wife who are living on two Social Security checks, perhaps a modest pension, and minimal investments. They were able to pay their bills and enjoy simple luxuries until the out-of-pocket expenses of long-term care begin to drain what they worked a lifetime to save.

Among today’s seniors, women are the primary caregivers in most families. Women who reach age 65 can expect to live 20 or more years on average, and many of those years may be spent as a caregiver. Those who reach 75 will likely live an additional 13 years. In fact, about two-thirds of Americans aged 85+ are women. More than 70 percent of nursing home residents are women whose average age at the time they were admitted was 80.

The pain of long-term care is not shared equally by both men and women. The crushing impact of long-term health care in America falls most heavily upon women. They make up 70 percent of seniors age 65 years and older and are 75 percent of the elderly poor. It has long been said that “women are the weaker sex”—but in the game of survival, men are the weaker sex, in that women are “fit for longevity.” The Life Expectancy Table used by the insurance industry reveals that a female born today will typically outlive a male by four to five years. But a longer life does not equate with a healthier life. Men are more likely to succumb to acute symptoms of fatal illnesses such as heart attacks, cancer and strokes, whereas women tend to live with chronic care illnesses such as diabetes, osteoporosis and arthritis.

Women face major challenges trying to live with independence and dignity as they age. On average, they have longer lives, higher rates of disability and chronic health problems, but lower incomes than men. Women will be the primary providers of long-term care for their husbands and their children—but when a woman needs long-term care, most likely her husband will have already passed away. Often, adult children are not available to provide in-home care. Lacking family help, most women face institutional placement in a nursing home—but millions of older women cannot afford long-term care services due to low income and lack of assets. Impoverished, they must rely upon the federal/state program known as Medicaid for their nursing home funding.

When we receive a call for assistance at our elder law office, most often the caller is a woman who is desperately seeking help with a spouse or a parent. Many times she is a daughter or daughter-in-law who has “drawn the short straw” in the family and must care for her father, mother, or in-law.

Women are the primary caregivers.² According to the American Association of Retired Persons [AARP], the typical caregiver in the United States is a 46-year-old woman. She has had some college education and she works outside the home at least part-time.³ Nonetheless, she still spends more than 20 hours per week providing care for her mother, father, or in-law.⁴ One in six caregivers in the United States provides 40 or more hours of care per week. Those same caregivers are often under high levels of physical and emotional stress due to the rigors of providing care for an older adult as well as providing for themselves and their own families. Many female caregivers make substantial sacrifices to accommodate the caregiving needs of aging seniors. These women must often cut short their professional work hours; they are often overlooked for promotions; they may lose employee benefits, need to take a leave of absence, choose early retirement, or be forced to end their careers entirely.

Women also dominate the ranks of professional health care workers. When one enters a long-term health care facility, it is immediately obvious that the staff is overwhelmingly female. Almost 90 percent of nurses, psychiatric workers, home care aides, and other members of the institutional and home health care field are women. Unfortunately, the majority of these workers are non-professional and are found at the low end of the pay scale with few employee benefits.

Senior women are also disadvantaged in that they receive far less Social Security income than men. Our Social Security system rewards those who work the longest and are paid the most. Women are penalized because they were often out of the workforce during the years that they raised their children. Additionally, their jobs often paid less than the average for a male,⁵ and they have smaller pensions, if any. The American workplace is systemically structured around male norms. “These economic facts help explain the growing poverty suffered by elderly women, including the frail elderly.”⁶

A typical senior couple today often has quite different levels of earned Social Security. The average senior male who comes to our law firm receives a Social Security check of $1,100 to $1,300 per month. Our senior female client receives a check averaging $400 to $800 per month. Our clients are senior couples with an average total income from all sources ranging between $1,500 and $3,000 per month. Yet even with a modest income, our senior client couples often live comfortably—until they are beset by long-term care costs.

Medicare is the federal government’s taxpayer-funded acute care health provider for those who are over 65, blind, or disabled. “Acute care” refers to necessary treatment for a disease for a limited period of time with the goal of returning the individual to a healthy and stable condition so that he or she may be discharged with appropriate instructions. American seniors are provided with acute care health care coverage by the combination of Medicare, their own optional Medicare supplemental insurance policy, and out-of-pocket payment of any deductible or health care expenses.

Unfortunately for our seniors, the health care support network unravels whenever a physician delivers a diagnosis of Alzheimer’s, Parkinson’s, or other chronic disease that causes the loss of memory or mobility. Medicare does not provide money for long-term care expenses.⁷

Again, the Medicare payment trigger is the diagnosis of a disease from which the individual will be able to recover or rehabilitate to a healthy and stable condition. Our senior citizens “win the Medicare diagnosis lottery” when they receive a diagnosis of heart disease, diabetes, or another acute care problem. But every day, seniors lose this “diagnosis lottery” when they receive the bad news that they suffer from a chronic illness.

Medicare pays based on a complicated coding system. If the disease does not have a Medicare payment code, then the senior is out of luck. In other words, even though Medicare will pay half a million dollars to reimburse hospitals and therapeutic staff for the costs of heart bypass surgery, Medicare will pay no dollars for an individual who has a diagnosis of Alzheimer’s or Parkinson’s. The Kaiser Family Foundation estimates that 28 million of the current 42 million Medicare beneficiaries have at least two or more chronic conditions. Because men decline at a younger age than women, and Medicare pays little or nothing for health care costs related to the chronic care needs of a frail older person, too often the burden of that care then rests upon the women of the family.

Today’s senior woman faces a nightmare as she walks the elder care journey with a frail and declining husband. She learns that Medicare and health insurance do not provide any payment for health care costs at home. She finds that her role in life changes so that she is the primary full-time in-home caregiver for her increasingly fragile spouse. When her husband must be relocated to a long-term care facility, she discovers that neither Medicare nor Medicare supplemental insurance will pay the facility’s $3,000 to $8,000 per month expense.

Quickly, she learns that Medicaid may not be available to provide nursing home costs in a Medicaid-certified nursing home bed because she has “too much money.” Her husband’s care will be offset by Medicaid if—and only if—she and her husband meet strict income and asset limitations. This is because Medicaid was originally designed to provide health care only for the poor. Medicare, on the other hand, was designed to provide health care without any income or asset limitations—but Medicare is limited to payment of acute care medical expenses, not chronic ones.

Due to the manner in which the Medicare and Medicaid systems are designed, women are negatively affected by these programs. Women in general have more chronic illnesses and therefore have a greater need for long-term nursing home services than men. Some critics of Medicare state that although Medicare purports to provide universal health care for our population over the age of 65, the benefit set is, ‘“better designed to fit a man’s older life cycle than a woman’s older life cycle’ as it substantially under-covers the services and treatments that comprise the needs of a predominantly older population.”⁸

There is no governmental benefit for long-term care that does not have a stringent income and asset limitation. If a married woman and her husband have assets of more than roughly $104,000, the marital residence, and a car, then the state requires that the couple “spend down” their life savings, which Medicaid defines as “excess assets.” Assuming her husband is in a nursing home, after all their excess assets have been spent on her husband’s medical care, the wife will find that Medicaid will also control her monthly income. Her income is restricted to $2,610 per month. If she has monthly income in excess of $2,610, then she must allocate the excess to her husband’s cost of care.

Later, when her husband dies, she will receive even more bad news. As the “survivor spouse” she will find that she loses one of their two Social Security checks—and she often loses his pension as well. She has been required to spend assets to provide for her husband’s care—until she is in an impoverished state and may not be able to afford to continue to live in her home. Many women are forced to sell their homes and move in with family members. The nightmare of long-term care has impoverished these women and stolen their independence.

While the woman is “fit for longevity,” her life as an elderly woman is often crushed by the physical, emotional and financial costs from providing care for her husband over a long period of time. Her own health care is often neglected while she cares for her spouse. When he dies, she is then deprived by the system of essential sources of income. She may spend her health and her modest wealth on her husband’s care. Quite frequently she will later face her own elder care journey, alone and impoverished. She will not have the luxury of a spouse who will serve her as she served him. No one will be there to dutifully care for her at home to delay the day that she must move to a long-term care facility. She will not have the financial resources that he had, because Medicaid called those resources “excess assets” and they were spent on his care. When she needs care, she may be forced by the Medicaid system to sell her home and spend the proceeds on her own long-term medical expenses. As a single person, she will not be provided with assistance by the State of Illinois or the federal government until she has become further impoverished to the point of a paltry $2,000 or less in total assets. The indignity committed against her does not stop there, for at that point she must also sign over all of her income to the nursing home, except for a miserly “personal needs allowance” of only $30 per month.

The loving wife who faithfully cared for her husband is now out of money and out of options. $30 per month will probably not be enough to even provide her with the privilege of having her hair done. She is living the nightmare of long-term care in America.

The Elder Law Attorney

The elder law attorney provides legal advice and counsel to seniors so they can protect their home, their loved ones, and their independence. We counsel clients so that they know the law. Just as a tax attorney advises clients how to arrange their financial affairs to provide the best financial outcome under the law, we counsel our clients on how to arrange their affairs to provide the best financial benefits under the law, as it relates to long-term care. We work within the law to lessen the financial assault of long-term health care expenses. We wish to provide a means to help our clients to pay for quality health care and to avoid being in a situation where they have been reduced to having only $2,000 in assets and a personal needs allowance of only $30.

Some of the options that exist under the law include:

 

1) Helping couples with long-term care issues improve the quality of life for both the ill spouse and the well spouse;

2) Helping couples with long-term care issues plan for improved survivor care financial benefits after the death of the ill spouse;

3) Assisting the over-65 wartime veteran who may qualify for certain benefits to pay for in-home health care assistance and/or assisted living facility costs;

4) Creating supplemental care trusts designed to pay expenses for frail seniors so they will be able to use their own assets for personal and medical expenses, while at the same time qualifying for Medicaid to pay for their nursing home care;

5) Providing seniors with appropriate estate planning and trusts designed to fulfill the goal of leaving a legacy to the family; and,

6) Assisting senior couples distressed by long-term care issues to improve the well spouse’s quality of life both now and after the death of the ill spouse.

 

It is rare for today’s senior to have a long-term care insurance policy with sufficient benefits to provide meaningful help with nursing home expenses. Without health insurance benefits, they are forced to pay out-of-pocket for any home health assistance or any assisted living facility care.

Today we are faced with the clash of an ever-growing number of people needing long-term care services versus state and federal governments being overwhelmed by the cost of health care. In Illinois, the state is now required to release new and more stringent Medicaid regulations, because the federal government passed a law entitled “The Deficit Reduction Act of 2005” [DRA]. The DRA includes regulations that will intensify the nightmare of long-term care. The DRA requires that any use by seniors of their own money for gifts to children or other members of their family that occur within five years of the time that those seniors need nursing home care, will cause a denial of Medicaid benefits. The worst part of this proposed law is that the senior will receive that denial of care at the very moment that he or she is most vulnerable.

Once a senior is in need of long-term care, Medicaid will impose penalty rules under the DRA. Any transfer of assets will “hang above them” until the senior applies for nursing home assistance (after having been reduced in assets to less than $2,000). The big question then becomes this: “How can a senior pay for care if they have a penalty period of ineligibility after they have already reduced their assets below $2,000?” No one really knows for sure, and it is unlikely that the federal government has an easy answer. The DRA was crafted as a punishment for seniors who give their money away to children, churches, or charities. Most seniors have no idea that the federal and state governments intend to deny them long-term care services for doing the things within a family that are designed to support and encourage family life. The DRA will also wreak havoc on the payment streams to nursing home facilities and other providers.

Preserving some of their assets allows elder law clients to preserve a bit of dignity as they face the nightmare of long-term care. While there is an incredible amount of information and risk when it comes to long-term care planning, there are honest ways to protect our elderly clients, their loved ones, and their independence.

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Rick and Diana Law (father and daughter), both elder law attorneys, are the principals of Law ElderLaw in Aurora, IL. They can be reached at diana@lawelderlaw.com or 630-585-5200.

1. Lawrence A. Frolick & Richard Kaplan, “Elder Law in a Nutshell,” 56-136 (3d ed., Thompson 2003).

2. Judith T. Younger, “Light Thoughts and Night Thoughts on the American Family,” 76 Minn. L. Rev. 981, 898-99 (1992); see also Arlie Hochschild, The Second Shift: Working Parents and the Revolution at Home, 276 (Penguin Books 1989).

3. Id.

4. Id.

5. Marjorie Musser Mikels, “21st Century Women and Children in Poverty,” (Human Relations Commission of the Pomona Valley) available at http://www.smartvoter.org/2004/11/02/ca/state/vote/mikels_m/paper2.html

6. Rebecca Korzec, Student Author, “A Feminist View of American Elder Law,” 28 U. Toledo L. Rev. 547, 554 (1997).

7. There are some important exceptions, such as for kidney dialysis, hospice, and ALS a/k/a Lou Gehrig’s Disease.

8. Jennifer L. Morris, Student Author, “Explaining the Elderly Feminization of Poverty: An Analysis of Retirement Benefits, Health Care Benefits, and Elder Care-giving,” 21 Notre Dame J.L. Ethics & Pub. Policy 571, 587 (2007).