LIVING WITH A TIME BOMB Two parents race the clock to secure a home for their retarded grown son before he explodes.
(MONEY Magazine) – Returning from a shopping trip one Thursday last August, Karen McGovern, 55, found her six-foot, 193-pound son Billy angrily chasing his male home aide around the backyard of the family's Oklahoma City house. Pulling the frightened aide indoors, Karen telephoned her husband Bill, 58, who raced home from work and persuaded Billy, who's 23, to go to his room. Soon, though, Billy ran downstairs and attacked Karen, biting, pinching and scratching her. Bill and the aide, Ruben Samaniego, 29, freed Karen and held Billy down for what his father says were ''45 long minutes'' before police arrived. Taken away in handcuffs to a hospital, Billy spent much of the next 12 days strapped in bed recovering from the antidepressant drugs the McGoverns think contributed to the outburst. Only half jokingly, they call that Thursday the Day From Hell. Lately, the McGoverns are spending more and more days in hell. Ever since their severely retarded son was dismissed from a mental institution because of unruly behavior 18 months ago, they have had to care for him themselves -- despite the fact that, with or without drugs, Billy turns violent several times a month. In addition, after a therapist diagnosed Billy as autistic, the McGoverns laid out more than $8,000 recently for treatments that -- so far -- haven't worked.
Billy hasn't seriously hurt anyone, yet. And no one blames him for his aggression, since his speech and comprehension resemble those of a two-year- old. Usually he's docile, sitting by his mother and quietly holding her hand. But he lashes out without warning -- like a toddler in the terrible twos who happens to have a grown man's strength. Sadly, his chief victim is his mother. No longer safe alone with Billy, she leaves Ruben in charge for eight hours each weekday and flees the house to do volunteer work or to answer phones at a friend's beauty salon. ''It ain't all beer and skittles for me,'' she says. When MONEY first visited the McGoverns in 1976 (see the photo on page 70), they were trying to raise Billy on their own. Karen was then, as now, clinging to the hope that ''someone will find the key to bring him around.'' By the time we next visited them in 1987, though, Billy was living in a private, nonprofit mental institution with the state paying the $9,600-a-year tab. ''Billy's provided for,'' his father said, ''so we're all set.'' That optimistic outlook began to darken two years ago when the facility started reporting Billy's disruptive behavior. Losing confidence in the institution, his parents enrolled Billy in a residential school for the disabled. But the trouble continued. ''The school reported 17 incidents in one day,'' says Bill, ''ranging from Billy's not letting them brush his teeth to biting and kicking people.'' In August 1991, when Billy left briefly for testing, ''the school told us he was not welcome to return,'' says an angry Karen. Since then, in a desperate effort to avoid sending him to a state mental hospital where sedation might in effect reduce him to a zombie, the McGoverns have spent $8,200 chasing one treatment after another -- none of which have helped Billy. Rather than give up, the McGoverns now plan to open a small group home where Billy and other mentally disabled adults can live. But time may be running out: Bill, who was cured of colon cancer three years ago, learned in December that he has prostate cancer. So he and Karen are seeking advice that they can act on quickly to provide for their son without wiping out their $114,000 in investment accounts. While Billy's violence and Bill's cancer make the McGoverns' predicament urgent, the challenge they face is not uncommon. An estimated 3% of babies born each year in the U.S. suffer some degree of retardation; another 12% develop a disabling mental illness before age 18. Their parents bear a special responsibility because these kids figure to need support long after Mom and Dad are gone. Fortunately, the McGoverns have the resources to meet the test. As a retired lieutenant colonel with 14 years' service in the Air Force, Bill draws a $28,800 yearly pension in addition to the $30,000 he makes as a budget officer for the Oklahoma Department of Human Services. With another $12,600 in rental income from two $50,000 condos, the McGoverns can easily afford the $1,408 monthly carrying costs on the condos plus their $135,000 four-bedroom home in the city's prosperous Quail Creek section. They have also salted away substantial savings. Bill's tax-deferred retirement accounts include $35,000 in the T. Rowe Price Prime Reserve money- market fund (recent yield: 2.79%) and $12,000 in MetLife guaranteed investment contracts paying 8.22% for five years. He and Karen have another $45,000 in Individual Retirement Accounts invested in Charles Schwab's money- market fund (recent yield: 2.83%) and two funds run by market timer Paul Merriman of Seattle: the growth-stock Capital Appreciation and growth and income Blue Chip (three-year average annual returns to Dec. 24: 9.2% and 7.1%, respectively). Bill also dabbles in the market: He has $22,400 in shares of Exxon, General Electric and Singer, plus a few smaller firms.
Before Billy's return from the residential school, Bill and Karen had become free-spending empty-nesters. Their three other children seemed settled: Patrick, 32, is a cellular-phone salesman in Fort Worth; Susan, 31, an at-home mother of two in Tulsa; and John, 29, an insurance claims adjuster, also in Tulsa. So three years ago, Bill and Karen began plowing at least $2,000 a year into home improvements. Weary of climbing stairs, for example, they intend to spend $25,000 to add a first-floor bedroom this year. Bill puts another $2,500 a year into a 20-year-old rare-stamp collection that he values at $15,000. And he's restoring a 1940 Packard that he says will be worth about $18,000 when it's done (though he hasn't kept track of the time and money he's invested). Feeling flush, Bill has arranged to leave his Air Force pension to Billy. It would pay his son $13,200 a year for life, with the money going into a trust administered by sister Susan. Karen still would have Social Security and state pension income totaling $29,760 a year -- more than three times the national median for single retired women -- plus Bill's $166,000 life insurance. After her death, the estate, now worth approximately $250,000, would be divided evenly among the four kids, with Billy's portion going into the trust. When Billy first returned home, he wasn't a financial burden. His medical costs are covered by Medicaid, and he gets $5,275 a year in federal and state disability payments. Moreover, Bill used his insider's knowledge of programs for the disabled to get the state to pay Ruben's $1,100-a-month salary plus $700 a month for a speech therapist who visits once a week. Beginning last year, though, the McGoverns began to incur heftier out-of- pocket expenses thanks to Karen's consuming quest to treat Billy. Recalling that when he was two, a doctor had talked of Billy's ''autistic-like tendencies,'' she decided to check out the long-shot possibility that he suffers from autism, a mysterious disorder in which the patient seems cut off from the world around him. An estimated 300,000 Americans are believed to be autistic. At the suggestion of the local Autistic Society, the McGoverns took Billy to see University of Oklahoma psychologist Diana Mobley, who promptly diagnosed him as autistic. ''I looked for signs that he could make sense of what he saw,'' Mobley explains. ''For example, he noticed a fire truck outside my office and glanced at his dad for permission to go watch it at the window.'' Although Mobley reached her conclusion in a single, two-hour office interview, the McGoverns accepted it unquestioningly. ''The minute she said 'autism,' '' recalls Karen, ''I felt an incredible surge of hope. It gives credence to my belief that an intelligent young man is in there. All we have to do is find him.'' They immediately embarked on a costly program to make contact with the inner Billy. The first expenses were minor: Bill's health plan paid 80% of Mobley's $250 fee. They spent $30 for membership in the Autistic Society, $62 on seminars and literature and $395 for a year's supply of vitamins recommended by one newsletter. But their real costs began with $500 to attend a conference on autism in St. Louis. There they heard of new treatments that, though controversial, have received favorable publicity. Subsequently, the McGoverns spent $6,000 on a 10-day visit to a clinic in Newberg, Ore. that offers a music-based therapy that is supposed to improve autistic kids' behavior. But Billy refused to keep the earphones on during the audiogram required for treatment. And the McGoverns' Oregon stay was further marred when Billy attacked Karen one evening at the home of some family friends. Undaunted, the couple next shelled out $360 to go to Kansas City, Mo. to consult with a speech pathologist who teaches so-called facilitated communication, a technique that some people believe enables them to communicate with autistic children. Billy rebelled at that training too (see the photos on pages 72 and 73). Yet Karen remains convinced that facilitated communication works. She says she now converses with her son regularly, using an $850 keyboard bought by the state. As Billy glances around the room (''He watches the board with peripheral vision,'' insists Karen), she asks him questions and then, ostensibly guiding his finger, spells out answers: ''Why wouldn't you leave the car?'' I-m s-o-r-r-y. ''Can we talk about you in your presence?'' O-k-a-y. When his father takes Billy's hand, however, no messages emerge. Bill devotes most of his energies to setting up the group house that he envisions as Billy's permanent home. Using contributions from himself and from three or four other parents of retarded adults, he wants to buy and renovate an $80,000 house that he is attempting to persuade the state to staff. At least one family member has reservations about the plan, however. ''Why are they Mickey Mousing around trying to set up an institution for a condition ((autism)) they know so little about?'' asks Billy's brother John. ''Are they doing what's best for Billy?'' That question was overshadowed by the discovery of Bill's cancer, for which he began six weeks of radiation treatments just before Christmas. While Bill believes he will survive, the experience made him consider ressigning his Air Force pension from Billy to Karen. ''The system will always take care of Billy,'' he says. ''But Karen will need help if something happens to me.'' With so much bad news to absorb, the McGoverns understandably get a little giddy at the faintest glimmer of good tidings. Example: When Ruben took Billy to a local mall to see the movie Home Alone 2 recently, Billy disappeared while Ruben was using the bathroom. Half an hour later, Billy was found sitting peacefully outside the theater. Relieved that neither her son nor anyone else was hurt, Karen was positively buoyant when Billy and Ruben walked in the door. Says she: ''Ever since we got the news about Bill, I couldn't stop crying -- there was just too much on my plate. But seeing Billy come home all right was better than a hormone shot. I felt almost human again.''
THE ADVICE Look for ways to boost Karen's income in the event of Bill's death. J. Harvie Roe, a financial planner at the Roe & Cochran subsidiary of Bank IV Oklahoma in Tulsa, endorsed Bill's plan to make his wife -- not Billy -- his Air Force pension beneficiary. ''A woman Karen's age can expect to live another 27 years, on average,'' said Roe. ''It's only prudent to do everything to provide for her in case she's widowed.'' Increase Billy's trust. Since the McGoverns' other kids are doing well, Roe suggested leaving most of the couple's estate to Billy. They should pay a lawyer about $1,000 to set up a so-called nonmedical special-needs trust. The nonmedical clause would forbid spending on health care, so government insurance programs like Medicaid could not seize the trust's assets. And the trust could be structured so that Billy's siblings would inherit the money after he dies. To prevent conflicts of interest, Roe said, a professional trustee should manage the money, not Susan. Invest in mutual funds rather than individual securities. Roe urged Bill to quit playing the market on his own or through the Merriman market-timing funds and to put his money in solidly managed no-load mutual funds. His top choices: the growth-stock Nicholas Fund (three-year average annual return to Dec. 24 of 15.1%; 414-272-6133), the growth and income fund Mutual Beacon (9.46%; 800-553-3014) and the small-stock fund Pennsylvania Mutual (10.4%; 800-221-4268). To free up more cash for savings that Billy or Karen may later need, he suggested that Bill sell his antique car and his stamp collection and postpone adding the new bedroom. Plan realistically for Billy's future. Dr. Darold Treffert, a Fond du Lac, Wis. psychiatrist and expert on autism, lauded the McGoverns' efforts to establish a group home for their son, but cautioned them to go slowly. ''Diagnosing autism is difficult because the condition overlaps with other developmental disabilities like mental retardation,'' he explained. ''It often takes a very detailed, intensive study to confirm the diagnosis.'' Furthermore, the doctor warned that an accurate diagnosis doesn't guarantee successful treatment, especially if the patient is often violent. ''Unless an effective program combining medication and behavioral therapy can be designed,'' concluded Dr. Treffert, ''the sad fact is that some patients simply must be placed in a more restrictive institution rather than a community-based home.''
Two months later, Bill had shifted his Air Force pension to Karen but was holding off selling his Packard and his stamp collection. He and Karen were debating whether to leave more of their estate to Billy. And Bill was cool to changing his investment strategy. ''I have no plans to alter my stock portfolio,'' he said, ''and I won't dump the Merriman funds until I see how they do over a year.'' Nor had he abandoned the bedroom project or his goal of placing Billy in a group home. Typically upbeat, Karen reported that Billy had learned to assemble air fresheners at a state-subsidized workshop. ''If he stays with it,'' she enthused, ''he may get a job in the community.'' Added Bill: ''We're thinking of taking him to dinner once a week and to Mass on Saturday to get him further into the real world.''