Conference Looks at Nuclear Family in Ferment

The conference in Ontario was billed as a celebration of the 50th anniversary of the Social Security Act of 1935, which mandated the nation’s first permanent maternal and child health program. But concerns addressed by the speakers would have been incomprehensible 50 years ago in a nation marking the end of Prohibition and mourning Will Rogers.

To wit:

--How does a mental health professional deal with the parents of a 5-year-old boy who may have been exposed to AIDS through being abused over a year by his father’s male lover?

Extra Stress?

--Does a day-care setting impose potentially lethal extra stresses on a child vulnerable to sudden infant death syndrome?

--Are the art supplies your child uses in school potentially toxic?

Many who were at the conference, sponsored by the California Medical Assn., the state Department of Health Services and the National Maternal and Child Health Resource Center, are on the staffs of publicly funded health agencies and, in this era of governmental belt-tightening, they are worried about their ability to provide quality care to a growing target population.

Money woes are not new to this group. Juel Janis, associate professor in UCLA’s School of Public Health, observed that historically in this country “there has been a resistance to programs providing care for children.”

But historically there has not been an American family as diverse and as much in chaos as the American family of 1986. Some of her statistics are by now familiar, but presented as a package they add up to a society in upheaval:

--By 1990, 70% of women with children under 17 are expected to be in the work force, up from only 18% in 1947.

--The number of babies born out of wedlock has soared, from 5% of all births in 1960 to 20% in 1983, two-thirds of these to adult women. In 1983, more than 86% of non-white teen mothers were unmarried, 40% of white teen mothers.

--Today, one in two marriages ends in divorce, whereas 100 years ago it was only one in 1,000. More than half of all American children can be expected to spend part of their childhood in a single-parent home.

One-Parent Households

--In 1984, 14% of all white children and 54% of all black children were being reared in a household headed by a female. Projections are that, by 1990, almost 9 million children will be brought up in such households, many of them in poverty.

--In 1900, the over-65 population was only 4% of the total population; today this group is more than 11%. In 1960, there were 1 million Americans 85 or older. By the year 2000, it is projected, there will be 7.6 million Americans 85 and older and one-fifth of them will be poor.

The American family today “looks very little like the family of the past,” Janis said, what with a sharp drop in family size, a dipping birth rate and “a general change in the attitudes toward large families, and children.”

At the same time, she said, family disintegration and rising costs of health care have combined to leave about 33 million Americans, among them pregnant women and children in need of preventive medicine, without health care insurance.

However, Janis said, in the halls of government such concerns as health care for children and mothers “is not a macho topic.”

She spoke of another problem of the ‘80s: “Our milk cartons and our cookie bags carry pictures of missing children,” many of whom are runaways fleeing from “highly disorganized families” and the majority of whom have been “pushed out, or encouraged to leave.” And she spoke of substance abuse, adolescent homicides, adolescent crime, family violence.

“One observation continues to surface, “ Janis said--there are more problems today than ever before and “the problems are more serious.” And, she added, it is difficult “not to connect” these problems to changing families, “naive to suggest there is not some clear relationship.”

It is not a question of not knowing how to deal with these problems, Janis said, but rather one of government priorities--”We already know a lot about what we must do to maintain a strong and stable American family.” The question is whether there will be support for programs such as prenatal care, preschool programs, maternity and paternity leave, day care for the elderly and school pregnancy clinics, she noted.

The outlook, said Dr. Graeme Hanson, director of pediatric mental health services at San Francisco General Hospital, is for “an increasing number of children with AIDS and particularly young children with AIDS.”

He estimated that there are now “under 300” child victims nationwide, 75% of whom were born to mothers who were either drug addicts or in another high-risk category and who infected their babies in utero. Twenty percent of the other child victims, he said, were infected through transfusion or contamination with blood products.

But as more children become victims, Hanson said, the challenge will be to treat them humanely and sensitively while protecting the public at large and insuring that “AIDS hysteria” does not damage these children both socially and psychologically.

Public education about the disease is essential, Hanson said, in that the reactions of the adults in a child’s life will be crucial to that child’s mental well-being. For example, he said, “Many affected babies are born to drug-addicted mothers and will go into foster care.” If they develop AIDS, will foster parents want to keep them?

Sense of Fear and Panic

Hanson told of a Sonoma County case in which a foster mother, convinced that her foster child is developing the disease, wants to return the child and is “alerting all the other foster mothers in her neighborhood, creating a great sense of fear and panic” among the foster children.

If the victim is a preschooler, he said, “caretakers need to know” for the sake of the child who, for example, might need to be protected from exposure to childhood diseases for which that child cannot safely be immunized.

For the school-age victim, he said, the need to be “one of the group” is all-important and a ban on an AIDS victim attending school, or an angry demonstration by parents of other children at the school, may have “serious implications” for the child’s psychological and social adjustment.

On the other hand, Hanson said, “having to keep this kind of secret” so as to avoid controversy can have longterm destructive effects on parents similar to those he has observed in parents of children who have been sexually abused.

Teen-agers, either through sexual activity or intravenous drug use, are “very much at risk,” Hanson said, and incidence of AIDS is “increasing in the young teen-age population.”

In treating the teen-age victim, he said, there is the issue of confidentiality--what is the obligation of the physician to tell the family? Who needs to know what, and for what purpose? Does the teen-ager control this?

What, he asked, might be the damaging effects to that teen-ager of “educated guesses about his or her sexual life or his or her drug use” in a society that, he observed, is focused on “the disturbing association of sex and death”?

A colleague, he said, had recently treated a 16-year-old boy who became panic-stricken after kissing his girlfriend. The boy had recently had a homosexual experience, he confided, and was fearful that he had infected his girlfriend through kissing.

The HTLV-III test, which shows whether AIDS antibodies are present, and determines that a person has been exposed to the disease but not whether the person has the disease, poses another problem with teen-agers, Hanson said. “Ambiguity” about what a positive test means, he suggested, “might be more than a teen-ager could tolerate” and could induce a flight into promiscuity or suicide.

As the percentage of AIDS victims in the homosexual community decreases and the percentage of drug-associated cases increases, Hanson said, “We have a potential for more and more babies to be affected by AIDS.”

In an interview, Hanson discussed implications of this: If a newborn is identified as having the virus, “When do you give them a clean bill of health? When they’re 5? When they’re 10? It is an intriguing problem.”

If a mother is a carrier, he said, “not every one of her children will have it” and the child who has the disease becomes “a special child” and changes the family dynamics.

Only “a very small number” of sexually abused children are at risk of exposure, Hanson said, but this is not very reassuring to parents of these children. He suggested the need for a psychological support group for these parents, similar to the “worried, well” group of exposed adults in San Francisco.

He is concerned about a false public perception that most homosexuals are child molesters--”We don’t want to play into that”--but recognizes the dilemma of screening out at-risk kids among victims of child molesters without “suddenly introducing the idea of AIDS” to already worried parents.

“We’re erring on the side of being cautious,” Hanson said, noting that some counties think testing of all molested children is indicated and emphasizing, “I don’t agree with that.”

It is a sign of the times, perhaps: Judith Calder, a public health nurse who coordinates health services for BANANAS, a nonprofit state-funded child-care research and referral agency in Oakland, explaining the name of her agency, noted that it was founded 12 years ago as “A Place to Find Playmates” but the name was changed after “we got a lot of obscene calls.”

In a more serious vein, Calder said that nowhere are changes in the American family more manifest than in the day-care sector. The greatest increase in the number of women in the work force is among women with children under 3, she said, and of all women who work outside of the home, 53% have children under 2.

Nonetheless, Calder said, only a fraction of these working mothers have employer-sponsored day-care and publicly subsidized child care serves only 14% of eligible families in California. So the financial burden falls on the parents, she said, and in urban areas the cost may typically range from $45 to $150 a week. A baby sitter, at $4 to $6 an hour, she noted, “is not an option for most families.”

Low salaries--minimum wage, or less--and the resulting high turnover rate are major barriers to providing quality early child care, Calder said.

BANANAS has done research on whether children in child care get sick more often and has found that younger children do have more illnesses than their peers not in child-care settings, especially respiratory disorders, skin and mucous membrane infections and gastro-intestinal tract infections. The latter, she said, are more prevalent when “kids who are diapered are mixed in with kids who are toilet-trained.”

Reason for Concern

There is reason for some concern, too, she said, about children in child care who are below the recommended age for immunization against measles or mumps. And, she said, it is “statistically inevitable” that Sudden Infant Death Syndrome deaths are taking place in child-care settings. Noting that in Philadelphia two infants died within an hour of one another in the same center, she emphasized that child-care providers feel tremendous grief, and guilt, about SIDS deaths and need counseling as much as parents do.

(The state Department of Social Services is drawing up guidelines for care of sick children in child care).

For those who fear their child will be physically or sexually abused in child care, Calder had reassuring words: In 1985, only 1.5% (of cases) were in a child-care setting or at the hands of a baby sitter. However, Calder cautioned, “Institutionalized surveillance can never take the place of daily monitoring by parents.”

Dr. Richard J. Jackson, chief of the hazard evaluation section, state Department of Health Services, had come to talk about “covert” hazards to children’s health. “Drano left around the child-care center is a clear health hazard,” he said, but what about water (“One fourth of all the drinking water wells in California are contaminated”) and chemical and pesticide residues in fish?

Although “the ultimate environmental hazard” is an atomic explosion, Jackson said, he considers tobacco (and smokeless tobacco) as the second most hazardous substance, responsible for one third of all cancers.

An apple a day is dandy, Jackson said, but beware of those that have been treated with daminozide (trade name: Alar), a pesticide used on one one fourth of the U.S. red apple crop. Although the pesticide has induced cancer in test animals, Jackson said, the Evironmental Protection Agency has not regulated it.

Makers of baby food do not use these apples, he said, but in response to a question from the audience about the safety of applesauce and apple juice, Jackson said, “The risks are theoretical, mathematical. I don’t recommend that people necessarily change their dietary patterns. I’m still giving my kids apple juice but I’m raising hell with the EPA.”

Potential Hazard

Another potential hazard about which he is “very concerned,” Jackson said, is indoor foggers for combatting household insect pests. Citing an apparent risk of poisoning to infants crawling about on a carpet that has recently been treated, he said, “We expect a fairly big fight with the Department of Agriculture over this.”

Also pinpointed by Jackson as a hazard to children were school art supplies which, he said, have “very poor labeling” and are chosen largely on the basis of cost rather than safety. He expressed concern about asbestos in clays and cadmium in pigments and said that within a year his agency will have compiled a list of what’s safe and what isn’t.

Dr. John A. Harris, chief, California Birth Defects Monitoring Program, state Department of Health Services, reported some early findings from the three-year-old program now in operation in about half of California’s 58 counties. “The most dramatic finding,” he said, is that 60% of babies with birth defects are male--”We don’t know the reason for this.”

Differentiating among the three types of congenital birth defects--malformation (chemically caused), deformation (like clubfoot, caused by crowding in utero) and disruption (such as limblessness), Harris said, “Most birth defects have no known cause.”

What has been found in the monitoring program, he said, is that the rate of birth defects varies little from county to county (urban or rural), that race does not seem to be a significant factor, nor maternal age or number of prior pregnancies (except in the case of Down’s Syndrome).

Size does appear to be a factor. “The smaller you are, the greater your risk for birth defects,” Harris said, but which is cause and which is effect is not certain.

Cautioning about the hazards of drug use during pregnancy, including therapeutic drugs, Harris said there is ample evidence that “the fetus is more susceptible than either children or adults. The mother can be unaffected and the baby can be profoundly affected.”

“We are currently in the midst of dramatic changes in the economics of health care delivery,” said Dr. Joyce C. Lashof, dean of the School of Public Health, UC Berkeley, and “the picture is neither all good nor all bad.”

Lashof voiced concern that today “the emphasis on costs rather than access and quality may erode the progress we have made” in providing quality health care for everyone, noting that there are now 35 million people, or 15% of the population, without health insurance, a 25% increase since 1977. Many of the uninsured, she said, are children, a “natural result” of an employer-based health insurance system.

Further, Lashof said, “types of services that insurance plans cover often do not include preventive medical, dental and vision services that children need.”

Public programs that have filled in the gaps have made significant differences, Lashof said, citing as an example a 49% drop in the U.S. infant mortality rate between 1965 (the year Medi-Cal began) and 1980, compared with only a 15% drop between 1950 and 1965. But since 1980, she said, “the effectiveness of these programs has been severely curbed by federal budget cuts.”

Hardest Hit

Medicaid, as the program is called in other states, covered only 52% of the poor in 1985, Lashof said, compared to 65% in 1976, and “children (40% of the poor population) have been the hardest hit by decreases,” with only one third of them now covered. Concurrently, she said, there is a rise in infant mortality rates and in post-neonatal mortality rates and an increasing incidence of such preventable conditions as failure to thrive, anemia and measles.

“We have moved from an era in which we viewed medical care services as a public good,” she said, “to one in which we view it as an economic commodity.” With the introduction of a competitive market approach to providing health care, and Medicaid patient care being provided under state contract on a per-diem basis, Lashof said, some hospitals “have begun to look at patients as financial ‘winners’ or ‘losers.’ ”

There is “anecdotal evidence,” she said, that “high-risk obstetrical cases that are often costly are being shunned by some hospitals and are being referred to other voluntary hospitals or county hospitals--a practice commonly referred to as dumping.”

There is concern, too, she said, that fixed price health care “will adversely impact on quality of care. As hospitals are steadily squeezed, cutbacks in services may be expected.” Under a fee-for-service policy, she said, there is an incentive to provide unnecessary services but under fixed-price systems, “there is an incentive to decrease services.”

One of the concerns mentioned repeatedly during the conference was the dwindling number of physicians providing obstetrical services to Medi-Cal patients. Dr. Maribeth Sayre, who chairs the CMA committee on maternal, perinatal and child care, explained that, because of the cost of malpractice insurance, “fewer doctors are willing to practice obstetrics at all” and those who do are limiting, or eliminating, Medi-Cal patients.

Medi-Cal reimbursement for prenatal care and delivery is $519 per patient, Sayre said, whereas “what it actually costs the doctor is in the $700-800 range” and private insurers reimburse the doctor at the rate of $1,000 to $1,200.

This is one of the concerns being addressed by Californians for a Smart Start, a coalition of 70 organizations formed in January to protect existing services to mothers and babies and to open hospital doors to uninsured pregnant women who are not on Medi-Cal through a state-funded program of prenatal care for working poor women with family incomes less than 200% of the poverty level. A bill now in the Assembly would create a task force to analyze the costs and savings of such a program.

“Things tend to recycle,” said Dr. Maridee Gregory, chief, maternal and child health branch, state Department of Health Services, noting that at the turn of the century major concerns included infectious disease and a safe milk supply. “The problems that we thought we had solved still tend to be with us.”

But the new problems, she said, are not just medical but “social, economic, legal, ethical and political.” They cannot “just be solved with an antibiotic” and the solutions to these problems cause other problems.

Today, she said, the problems “have almost outrun the ability of our society to pay.” Gregory noted that when she began her residency, a premature infant was simply placed in an isolette and checked by a nurse three or four times a day. Today, she said, a team of 20 highly trained professionals is involved in that infant’s struggle for life. She asked--Who makes the decisions? How do we make sure not one life is compromised?

Above all, she said, health professionals must continue to “recognize the value of children in our society” and work to insure that pragmatism, cost effectiveness and economics are “balanced against kindness, caring and compassion toward the children we serve.”