It is generally agreed that the bill called the Spousal Health Insurance Rights Act (SHIRA) would never have been passed by the Illinois legislature in 1985 without the concerted midwifing efforts of a coalition of organizations under the direction of the Illinois Women's Agenda. More than a dozen groups, including the National Council of Jewish Women, the Hull House Association, the Illinois Network of Displaced Homemakers, the League of Women Voters, and the Older Women's League, participated in the hard-fought, four-year struggle to bring the creature to birth. It faced a host of obstacles, not the least of which was the Illinois insurance industry. In essence, SHIRA provides that when a spouse who is covered by a group insurance plan dies or obtains a divorce, the other spouse can remain on the plan for an extended period. Before SHIRA, non-employed widows and divorcees often found themselves suddenly cut adrift with no medical coverage--their former family policy canceled and their income insufficient to get a new one.
But though the birthing of SHIRA was surely a joint victory, those who worked for it invariably cite one person in particular who deserves major credit. That person is Grace Halperin.
"From the start I wanted to help her," says Representative Woods "Woody" Bowman, who introduced the bill in the Illinois house and shepherded it through to conclusion. "She evoked a certain sense of respect. She's not your typical lobbyist . . . so demure, quiet-spoken, inoffensive. For me she was the catalyst."
"This bill was so important to Grace, we just didn't want to let her down," says Eleanor Revelle, vice president for advocacy of the Illinois League of Women Voters. "She has this slow, steady presence."
"She's the one who got me involved in the whole thing," laughs Pat Taylor, director of the North Shore Senior Center. "And through her a lot of others got involved. She's the kind of leader who just sort of draws you into things."
Says attorney Andrea Schleifer of the Illinois Women's Agenda, "Grace is like a tick who gets under your skin and keeps working and working. At meetings it seems everyone comes in with a swirl of 40 issues they're backing. She usually has only one and she's persistent as hell!"
Even Governor James Thompson got the word. When he signed SHIRA into law on September 18, 1985, amid flashing cameras, he patted Grace Halperin on the shoulder and said to the assembled dignitaries, "Here is the patron saint of this bill."
Grace Halperin is a rail-thin, white-haired, 74-year-old woman who lives alone in a modest studio apartment in north Evanston. She is an unlikely appearing activist: very gentle of face, soft-spoken, courteous, and self-effacing to a fault. There is about her an air of fragility that is extremely misleading, to say the least.
Halperin does not see herself as a patron saint of anything. On the contrary, she still feels occasional pangs of guilt over a "hard and cruel" thing she did to her husband more than three years ago. As he languished in a Chicago nursing home, she obtained a legal separation from him, thus salvaging for herself what was left of their combined assets.
"Even now I ask myself, did I put something over on Lee?" she says. "If he had been in better condition, would he have gone along on this? I don't know. I'll never know."
For many, Grace Halperin has come to embody the grave problems facing the elderly, especially elderly women, in American society and the lengths to which a few extraordinary people are willing to go to confront them.
Senior citizens have made significant gains in the last 25 years, admits Janet Otwell, director of the Illinois Department of Aging. "But the reality of an aging society has broken loose lately, putting many of those gains in jeopardy. People are starting to ask why they should give so much to nonproductive members of society."
A recent New Republic article worried about the acquisitiveness of the "greedy geezers." And a February Time magazine cover story titled "And Now for the Fun Years" noted the steady rise of the 65-and-over age group: in 1950 they constituted 7.7 percent of the population; this year they will reach 12 percent; by the year 2020 they will comprise 17.3 percent. The fastest growing group of all, said Time, is the 85-and-over category, which threatens to make every town "look like Florida's population today."
Some maintain senior citizens are already consuming too much of America's limited resource pie, and as their numbers increase (the baby boom generation is just now hitting middle age), they may gobble up the whole thing. Young professionals wonder whether the Social Security Fund will be around when they need it, whether Medicare can keep pace with the actuarial tables, and whether the Medicaid net will soon let more people fall through than it catches. Some experts predict a "generation war" in the offing--embittered young and embattled old fighting it out over scarce resources in legislatures, courts, hospital rooms, and--who knows?--even the streets. The growing effort to legalize euthanasia may be viewed as a less than subtle attempt to impose a "final solution" before the conflict gets violent.
Those who would dismiss the elderly will have to contend with quiet, determined people like Grace Halperin. Age sometimes brings more than gray hair, feeble limbs, and forgetful minds.
When Leo "Lee" Halperin retired from his job as a city of Chicago electrician in 1966, he and Grace looked forward to the so-called golden years of relaxation and travel. He was 62, she was 52. They had a nice pension and some savings, no children, and no pressing obligations. But Lee was hit soon after with a postretirement depression that gradually got a stranglehold on him. Then he developed a form of skin cancer that began to produce tumors on his face and throat.
For years he was in and out of hospitals and psychiatrists' offices, with insurance and Medicare paying most of the bills. Grace took care of him and continued working part-time as a social worker. As his mental derangement progressed, Lee refused all medical help for a time, so that his physical condition only worsened. For the Halperins the retirement dream turned into a full-blown nightmare.
In 1983 Grace had Lee admitted to a nursing home on North Sheridan Road. The cost was $1,700 a month, and as was the case with all extended nursing home care, it was not covered by insurance or Medicare. Lee's monthly income at the time, through his pension and Social Security, amounted to $1,100. All of that had to go for his care, and in addition Grace was forced to dig into their savings to the tune of $600 each month to pay the bill.
"Together we had saved about $25,000 over the years," says Grace. "It seemed like a lot when we were putting it together but it went out awfully fast. I became angry and resentful--all our savings going for the medical expenses of one spouse. Marriage, I thought, was supposed to be a partnership."
The law clearly said that a married couple's money--or almost all of it--must be expended for an ailing spouse before he or she would be eligible for Medicaid coverage (through the Department of Public Aid) at a nursing home. "We would simply have to spend down to the poverty level," says Grace, "and only then could we get coverage. I thought it a very frustrating situation."
Meanwhile, she was becoming equally frustrated with the lack of personal attention Lee was receiving at the nursing home. In 1984 she shopped around and had him transferred to a new nursing institution, on Foster Avenue. The home had a church affiliation, and she thought the staff seemed more competent and caring. However, the cost, $2,000 a month, meant an even bigger bite from their dwindling savings. Just 18 months after Lee's initial institutionalization, half the Halperins' life savings had been spent.
"I felt like there had to be a way out of this," says Grace, "so I went to the library and read the Illinois Revised Statutes concerning the dissolution of marriage. I came on the provision for legal separation. I had never thought of it before. I thought only Catholics got separations." She discovered that through a separation, jointly held assets could be divided up, just as they would be in a divorce settlement. Grace talked to a lawyer who confirmed that if both parties agreed, the settlement could be worked out so that Grace would obtain ownership of the remaining assets and Lee would be rendered legally destitute--thus eligible for Medicaid.
"I didn't like the idea," says Grace. "In a way I felt I was deserting Lee, leaving him at a time he needed me most. He had always been considerate and loyal. Still, I've always been a stubborn and independent woman."
When she discussed the situation with Lee at the nursing home, he had some difficulty understanding what it was all about. "He was concerned about my welfare," she says, "and finally he told me 'Do what you have to do.'"
On November 19, 1984, Grace Halperin and her attorney appeared briefly before Cook County Circuit Court Judge Robert Cusack to finalize the legal separation. The formal petition stated the case in bald terms: "Irreconcilable differences have arisen between the parties leading to an irretrievable breakdown of the marriage; efforts at reconciliation have failed and further attempts at reconciliation would be impracticable. Both parties are desirous of separation . . ."
In a strange sense it was all true. "Irreconcilable differences" had arisen--illness and old age. Reconciliation was "impracticable"--especially with Lee in a profoundly depressed state and requiring round-the-clock attention. And both parties were indeed "desirous of separation"--not out of antagonism but, ironically, out of mutual concern. The judge never questioned Grace as to her intentions and the order was duly signed. Handed over to her were the remaining shares of stock, a certificate of deposit, and the couple's 1978 Buick Century. She was also granted $400 a month from Lee's pension for her personal maintenance.
"I had to keep telling myself it's OK to do this," Grace says, "that it really didn't change our relationship. I stayed with him as much as I could. I think a decisive legal step like this is especially hard for a woman because we're used to men being in charge and making the big decisions." She has talked since with other spouses who have obtained separations or divorces for identical reasons, but few have acknowledged the action publicly. The pain is too great.
After the separation, Grace contacted the Illinois Department of Public Aid, and within six weeks the Medicaid application for Lee was processed and approved. "There was no quizzing or grilling," recalls Grace. "In fact, I didn't even have to go to the welfare office. The whole procedure was handled by mail and phone." Thereafter, Lee's nursing home bills would be paid for out of his own pension (minus Grace's maintenance grant) with a hefty supplement from the welfare department.
Complications arose immediately when the nursing home informed Grace that Lee would have to leave. The home, she was told, already had its full quota of Medicaid patients (there are, in fact, no such quotas), and it did not intend to accept any more, since Medicaid reimbursement is at a lower (and slower) rate than conventional payments. Grace trekked around the city, finally locating an accepting--and acceptable--institution for her husband on Birchwood Avenue. He stayed only two months before suffering a serious fall. He was admitted to Saint Francis Hospital in Evanston, where he died on March 4, 1985. His passing Grace regarded as a blessing; life had been for him a continuous agony for more than ten years. What she had saved through her unorthodox separation was a sum of about $12,000--hardly a significant fortune. But for her the principle of the thing was all-important. It comes down to a matter of fairness: the catastrophic illness of one spouse should not require the financial destitution of the other.
Less than a year after Lee Halperin's death, an amendment to the Illinois marital property laws went into effect. It partially corrected the inequity Grace wrestled with by providing for the division of a couple's assets into separate but equal shares when one spouse has to go into a nursing home (and also permitting transfer of the ownership of a home to the noninstitutionalized spouse). Thus, the ailing partner can qualify for Medicaid before the couples assets are near depletion. The arrangement was part of a package to assist Alzheimer's patients, but it is generally applicable whenever nursing home care is required, according to the Illinois Department of Public Aid.
Grace Halperin is not sure how widely and effectively the regulation is being applied, and neither, it seems, is anyone else. "We would assume people would know about the provision," said a Public Aid spokesman in Springfield. "It's in the manuals and our caseworkers inform all their clients."
The trouble is that a couple who start out with substantial assets might never have occasion to approach Public Aid until all, or practically all, their money has been spent on nursing home care. It is clearly not in the interests of nursing home operators to inform patients or their families of the provision, since Medicaid payments are lower than private payments.
"We're not sure people are informed about this at all," says Janice Koch, director of consumer affairs for Illinois Citizens for Better Care, a nursing home watchdog organization. "I think attorneys usually advise their clients about it, and so do some hospital social workers." But she admits the possibility that large numbers of couples could be spending all their savings on a nursing home when only half need be spent. Only a handful of states have passed similar provisions and all are relatively new.
In addition, notes Koch, the so-called Alzheimer's package discriminates against those who have large monthly pensions or other ongoing sources of income; the Illinois law does not allow the shielding of this money for the benefit of the spouse who is not in the nursing home, beyond a modest subsistence allowance. As a result, some lawyers are still advising couples with imminent long-term care needs to get a divorce or separation. "It's a horrible, tragic thing to put people through," says Koch, "but the elderly have to seek some protection." Meanwhile Grace Halperin has urged the Illinois Bar Association to publicize among their members the current options under the law.
Through her leadership position with the Older Women's League, she recently backed a letter-writing campaign supporting the Medicare Catastrophic Protection Act, which passed the U.S. Senate on June 8 and was signed into law by the president. It lengthens Medicare-paid hospital benefits for up to one year and pays more generously for prescription drugs. The act may also permit on a national level the 50-50 division of assets when one spouse enters a nursing home. But legislative observers are as yet unsure about the limits of this provision--or (as with the state bill) how the general public is going to find out exactly to whom it applies.
"I would call Grace one of the most knowledgeable private citizens on seniors' issues," says Koch. "She is always persuasive because she speaks from personal experience." Last March Grace Halperin was among four citizens given the Governor's Award for Excellence by the Illinois Department on Aging for their "significant contributions in the area of aging services."
She became an elderly activist almost by accident. A native of Kansas City, Missouri, she'd been employed as a professional social worker for more than 20 years before she met Lee Halperin and married him in 1958; she was 44 at the time.
Her first job involved interviewing workers for WPA projects in the 1930s; in the succeeding decades she held a variety of posts in public-welfare, family-service, and adoption agencies in Los Angeles and Chicago. "My mother was a teacher," she says, "and that had an effect on me. I suppose I've always been service oriented." She is quick to point out, however, that in none of her social work experiences was she a social activist or an advocate for sweeping change. A retiring, admittedly shy woman, she handled her responsibilities in a businesslike manner, leaving advocacy to others.
But in 1981, when Lee's illness had become almost unendurable for both of them, Grace attended a chapter meeting of the Older Women's League--better known as OWL--on the north side. At the time, OWL had barely emerged from its egg, having been founded as a national organization only the year before at a White House-sponsored conference on older women in Des Moines, Iowa. From the first, the motto of the fledgling organization was "Don't agonize--organize!"
"For me, OWL was an outlet and an activity," says Grace. "Only a very few women belonged, and I, as a social worker, had an interest in social issues." One of OWL's earliest concerns was the loss of health insurance coverage by wives and children when husbands died or left their families. Grace agreed to work on the task force coordinated by the Illinois Women's Agenda to promote a change in the law. "I thought it was important," she says, "and it gave me something new to think about."
Woody Bowman says he was first made aware of the health insurance issue when Grace Halperin called him; he later met with her, attended a meeting of the task force, and began developing legislation. During the next four years, he says, she kept his mind concentrated on the task at hand. "As I remember," he says, "Grace pretty much was the OWL chapter at that time."
Grace says she wasn't that important: other OWL members had already talked to Bowman and legislation was being drafted before she came on the scene. Regardless, her persistent presence and polite pressure deeply impressed Bowman and everyone else involved in the task force.
The bill's first version, finally completed in 1983, called for an employer's group health coverage to be extended to a widow or widower and family for five years after the death of the employed spouse. Theoretically, this would give the surviving spouse ample time to make new insurance arrangements or obtain employment. The prototype SHIRA passed the Illinois house by a substantial margin and was sent to the senate.
But the insurance lobby mustered its forces and vehemently opposed the measure. Administering the new entitlement, the insurers argued, would add exorbitantly to costs; besides, self-insured businesses would acquire an immediate and unfair advantage, for self-insurance plans are not subject to state laws. The bill died in the senate Insurance Committee.
In 1984 the task force operated more shrewdly. Its members persuaded the Illinois State Bar Association to draw up a legally airtight new version of the bill that gave ground to the insurance lobby on the duration of coverage, but broadened it to include divorcees as well as widows, widowers, and their families. The new version also gave a formula for the amount of premium those covered would have to pay. Experts, including OWL's national attorney, Frances Leonard, testified before legislative committees, and key legislators were lined up to back the bill.
To no one's surprise, the insurance lobby fought back again. Letter-writing and phone-calling campaigns were waged on both sides. But in the spring of 1985 SHIRA passed both houses. A lot of "delicate strategy" made it possible, according to Bowman, who guided the bill through the house with Representative Alan Greiman, while Senator William Marovitz piloted it through the senate. In its final form, SHIRA offered group coverage to both the divorced and widowed for two years (down from five as a concession to the insurance lobby and to preclude a possible veto by Governor Thompson); but if the surviving spouse were 55 or older the coverage could continue up to the age of 65, when Medicare eligibility begins. (This did set up the bitter possibility of a widow, say, losing out on seven years of group coverage because her husband died the day before her 55th birthday.) Helping win the day, acknowledges Bowman, was the fact that SHIRA was the only women's issue on the agenda during that legislative session; even unsympathetic legislators feared a feminist backlash if they spurned widows, divorcees, and children.
Later in 1985, the U.S. Congress passed the Consolidated Omnibus Budget Reconciliation Act (COBRA), which essentially does for the nation what SHIRA did for Illinois. It grants coverage for three years after death or divorce though without an extension for those over 55. The link between the two bills is especially strong because some of the same bar association experts recruited by the women's task force for SHIRA also provided input when COBRA was being drawn up in Congress.
"I think we can be proud of what's been accomplished--a definite victory for all the women who worked so hard," says Grace Halperin.
An officer of the Northside Chicago/North Suburban OWL chapter and editor of the chapter's newsletter, she is not resting now. She has come to believe that the inequities visited on older women and documented in OWL's authoritative "gray papers" demand large-scale changes on many fronts. And like Janet Otwell, she is concerned about the likelihood of conflict between young achievers and "greedy geezers."
OWL was founded not to compete with more inclusive senior citizen organizations like the National Association of Retired Persons and the Gray Panthers, but to concentrate with activist fervor on the special situation--and problems--of older women. According to Junia Hedberg, who directs chapter development for OWL in Illinois, the organization is growing rapidly. Four years ago there were 3 chapters; today there are 11, claiming some 850 members. The data OWL has assembled on the status of the elderly female is daunting. For example:
Nationally, women constitute 72 percent of all those over 65 who are living beneath the poverty level. The reason is perfectly clear, according to a recent OWL gray paper: "Though society pays lip service to the value of unpaid work performed in the home, these traditional roles of women are nevertheless not regarded as 'real' work. . . . Yet these responsibilities--from child rearing to care-giving--are central to a family's quality of life and a society's economic well-being. Recent estimates value women's unpaid work contributions at $515 billion annually.
The average 45-to-64-year-old woman employed full-time has already spent two decades out of the paid labor force (usually raising children), while the average man in this category has spent less than a year of his adult life away from work. The loss of tenure affects both income and future retirement benefits. The average earnings of a working woman who gives birth drop $3,000 the year the child is born and about $5,000 to $6,000 annually the next two years.
The wage curve for men, as supplied by the Bureau of Labor Statistics, is a clear pyramid, reaching a peak toward the end of their careers. Women's wages, on the other hand, are represented by a nearly flat line, showing no appreciable change from 25 to 65--and sinking almost out of sight in the over-65 category. Even college-educated women aged 45 to 64 with no work interruptions earn only 63 percent of what similarly qualified men earn. And there is little respite in the female-dominated, low-wage occupations. Women bookkeepers, for example, make only 74 percent of what men bookkeepers make; women nursing aides earn 81 percent as much as male aides.
The old adage that "a woman is only a man away from poverty" is confirmed by 1987 Census Bureau statistics for women over 65. They show that 41 percent of those who are separated from their husbands live below the poverty line, as do 25 percent of the divorced and 21 percent of the widows. By contrast, only 5 percent of the 65-and-over women live in poverty if the husband is alive and present. Divorce and widowhood for older women are "economic disasters," according to OWL.
Health problems of older persons vary by sex. According to the National Center for Health Statistics, older men are more likely to have acute illnesses that are life-threatening, while older women are more likely to have chronic illnesses that cause ongoing physical disabilities and often require long-term care. Yet because of their limited employment record and their participation in low-paying jobs with poor health benefits, women are disproportionately represented among the 21 million American adults without any health insurance.
While living alone may connote an independent life-style, for some older women, it reflects a "solitary, meager, and isolated existence" for many, says OWL. In 1986, not only did women constitute the vast majority of the elderly living alone, but more than 50 percent had been alone for at least ten years, and 25 percent had no surviving children to provide assistance.
To remedy some of these problems, OWL--and Grace Halperin through her contacts and newsletter--is promoting critical pieces of legislation at the state and federal levels. The Illinois Family Medical Leave Act, for example, would expand the current pregnancy leave provision by allowing workers to take unpaid "caregiver" leaves of up to 18 weeks over a two-year period without losing job status or fringe benefits. The leave could be for adopting a child, postnatal care, or assisting an ill child or parent (but not an ill spouse). Bogged dawn in the senate Rules Committee this session, the act will resurface in stronger form and with greater support next time around, says Grace. "We don't take defeat easily; we keep coming back!"
One piece of legislation finally getting teeth is the Illinois Comprehensive Health Insurance Plan (CHIP). The plan was approved by the legislature last fall as an aid to persons who can't afford conventional coverage. But passage was an empty gesture until July 1, when the legislature finally provided $10 million to fund it.
Other measures being promoted at the state level include an elder-abuse watchdog program, expanded funds for home-delivered meals, and increased support for area agencies on aging that dispense funds, such as the Chicago Department of Aging and Disability.
At the congressional level, OWL will be back next year promoting the Long Term Home Care Catastrophic Protection Act--the so-called "Pepper Bill" long championed by Florida's leading senior citizen, Senator Claude Pepper. The bill, which would extend Medicare coverage for the daily maintenance activities and needs of chronically ill persons living at home (and thereby cut down severely on nursing home business), was defeated in the House of Representatives on June 8. The major objection was the cost--an estimated $30 billion a year.
In her OWL newsletter, Halperin provides crisp information on where various bills stand, who's working on what, and who are the best people to contact.
Grace Halperin believes old people have two overarching tasks. They must prepare to die, and they must live as if they expected never to die! Preparing to die, she says, means having one's financial affairs in order (to whatever extent that is possible) and having a living will that appoints someone to act in one's behalf in the event of coma or other prolonged mental incapacity. "I think we should be in charge of our lives," she says, "and that means the end of our lives too."
Far from being concerned about the potential abuses of euthanasia, Grace is a member of the Hemlock Society, an organization that promotes voluntary suicide among the terminally ill and supports physicians who provide "aid in dying."
"I saw my grandfather and my parents and, of course, my husband die slowly," she says. "It's a terrible thing to stand by and wish someone you love would die and then feel guilty about feeling that way. I know I didn't handle it well, and I'm still sorting through my reactions."
Living as if life will go on perpetually means for Grace "doing the things I've always wanted to and learning about new subjects." She has a 20-by-20-foot garden plot in an Evanston park two miles from her home. She drives there three or four times a week in her ten-year-old Buick to tend the flowers, green beans, turnips, and sweet basil she has planted. She has also lately taken up golf with a group of elderly friends and admits she has a "good swing," though she doesn't keep score.
"I support a holistic approach to life," she says. "It's important to have a place for rest, for food, for art and nature, and for spirituality."
Besides her OWL activities, which consume 15 hours or more of her time a week, Grace has a season subscription to the Goodman and two other Chicago theaters, visits the Art Institute regularly, and enjoys occasional concerts. Classical and folk music are her favorites. She does her grocery shopping at health food stores and goes through a daily routine of yoga and t'ai chi to keep mind and body in shape. She also reads widely on Jungian psychology and for leisure is studying books on John Adams (the second U.S. president) and other prominent figures in the four generations of his family. John's outspoken, independent wife Abigail she finds particularly fascinating.
Grace worries that she may be too independent a person, one who wants her own way and will never yield in a dispute. By way of illustration, she cites the medical exam she underwent four years ago. On the basis of a hurried and painful angiogram, the doctor told her she would require heart bypass surgery and that it would be a waste of time for her to get a second opinion. She got one anyhow, and was informed that surgery was unnecessary. Grace absolutely refuses to pay the first doctor, though she may be forever hounded by collection agencies.
As an active member of the Unitarian Church, Grace Halperin does not believe in a personal God, the resurrection of the body, or a heaven-and-hell afterlife. That does not mean, she emphasizes, that she lacks a spiritual dimension. "I've always had faith in life," she says, "a belief in an undergirding of order in the world. Whenever there's a problem, I'm convinced there has to be a solution."
As for immortality, she hopes to live on in whatever good works she has performed in this life and perhaps in the memories of friends and relatives. Religion's place, as she sees it, is in the world, in service to others. "I'll keep on doing what I can as long as I can," she says. "But you must understand that at my age my energy is quite limited."
Art accompanying story in printed newspaper (not available in this archive): photos/Bruce Powell.