Allison Kilkenny: Unreported

Children in the Mental Health Void

Posted in health by allisonkilkenny on February 20, 2009

Judith Warner

Protesters of Nebraska's safe-haven law hold signs in front of the Creighton University Medical Center

Protesters of Nebraska's safe-haven law hold signs in front of the Creighton University Medical Center (Nati Harnik /AP)

Remember the Nebraska law meant to keep desperate new mothers from abandoning their babies in dumpsters by offering them the possibility of legal drop-off points at “safe havens” like hospitals?

As was widely reported last year, the law neglected to set an age limit for dropped-off children, and eventually led to 36 children – mostly between the ages of 13 and 17 – being left with state authorities. Most of these children had serious mental health issues. Some were handed over to the state by relatives who had no other way of securing for them the heavy-duty psychiatric care they needed. Seven of the children came from out of state, including one who’d been driven 1,000 miles to Lincoln, Neb., from Smyrna, Ga.

Recently, The Omaha World-Herald acquired 10,000 pages of case files concerning these children from the state’s Department of Health and Human Services. They paint a portrait of desperation – of out-of-control kids, overtaxed parents and guardians, and an overstretched health care system – that really deserves more widespread national notice.

Because even though the mentally ill “safe haven” children had extreme needs, and some of their parents and guardians had extremely limited capabilities (one grandmother said her charge had “demons inside of him”; a mother who dumped her two teenagers in an emergency room said they were “mouthy,” “too much work” and “need to be voted off the island”), what their stories have to say about children’s mental illness, parental limitations and the paucity of care available in our country is altogether typical. They illustrate how a lack of good care early on can create much bigger problems, for families and for society, in the long run.

Their example also serves as a necessary corrective to the popular view that children being labeled mentally ill today are just spirited “Tom Sawyers” who don’t fit our society’s cookie-cutter norms, with parents who are desperate to drug them into conformity.

The children abandoned in Nebraska had big-deal problems. An 11-year-old boy, hearing voices since the third grade, had punched his fist through a glass door and smeared another child with his feces; other children had started fires, tortured pets, sexually abused younger children and made murder and suicide threats. Some of the adults charged with their care had problems, too, mental health issues that made them incapable of properly seeking help. Some parents and guardians had blocked earlier efforts by the state to provide care for their children, by not taking their children to Medicaid-funded therapy sessions or not picking up free psychiatric medications.

Others had tried hard to get help for their children; Matthew Hansen and Karyn Spencer, reporters for The World-Herald, noted that the 29 Nebraska “safe-haven” children alone had received nearly $1.1 million in state-financed mental health services. But these services “were not provided in a coordinated and cohesive way,” Kathy Bigsby Moore, executive director for the advocacy group Voices for Children in Nebraska, told me. She reviewed the state case records and found that some children received too little care too late and some, in desperate straits, were spending months on waiting lists for spots to open in residential treatment programs.

One Oklahoma woman who had been frustratedly trying to get her adopted son into a residential treatment program phoned a Nebraska official and threatened to bring the boy to his state unless she received help. The boy was admitted to a psychiatric program almost immediately.

“Why on God’s green earth does it take all that to get help?” she asked The World-Herald.

This problem of lack of access to care – and lack of access to truly good care – is the real mental health “epidemic” affecting children in our time.

Insurance companies will no longer pay for long-term inpatient care for mentally ill children; as a result, psychiatric hospitals have been steadily closing, and residential treatment programs for the most difficult children, whose tuition is most often paid with public funds, are packed.

And yet the care available for children at home with their parents is severely lacking. Outside of big cities, where even under the best of circumstances there can be a two- to three-month wait to see a child psychiatrist, there is a severe shortage of children’s mental health specialists.

In 1990, the Council on Graduate Medical Education estimated that by 2000, the United States would need 30,000 child psychiatrists; there are now 7,000. Many rural areas have no child psychiatrists or psychologists at all. Often, pediatricians end up providing mental health care, but they aren’t trained for it and often aren’t reimbursed for it by health insurance. The American Academy of Child and Adolescent Psychiatry is currently working with the American Academy of Pediatrics to try to formalize ways to collaborate on caring for children with mental health needs, but models for such joint care are scarce. And doctors have no financial incentives to talk to one another on the phone.

Programs that could help support mentally ill children and their families – therapeutic after-school care, community-based outpatient services, transitional care for children with chronic mental illness who sometimes suffer dramatic flare-ups of symptoms that send them to emergency rooms or to adult psych wards unequipped to help them – are also very poorly developed around the country, and generally not reimbursed by health insurance.

The result of all this fractured, fragmented, chaotic or non-existent care, said Christopher Bellonci, a psychiatrist who is the medical director of the Walker School, a nonprofit residential treatment program in Needham, Mass., is that children with psychiatric problems get steadily worse, and eventually “fail up” through repeated trials of medication and short-term hospitalizations until they can no longer be kept at home. Getting these children into good treatment programs requires “significant advocacy on the part of parents who have to be extremely sophisticated,” he said. And the cost of those programs is so great that, as was the case in Nebraska, some parents are actually forced to make their children wards of the state in order to get the child welfare system to pay for their care.

“Parents who have not been abusive or neglectful are put in the untenable situation of having to surrender custody,” Bellonci told me. “It’s criminal, frankly.”

In Nebraska, where access to child mental health services is particularly poor, child advocates had hoped that last year’s headline-making child abandonments would shock lawmakers into spending more money to develop better child mental health services. But that isn’t happening.

So far, Moore says, the only legislation likely to win passage would create a uniform state hotline and provide “navigators” to help parents find mental health services for their children. There isn’t, however, any increased funding for actual care. And without access to services, she said, “We fear it’ll be a hotline and navigators to nowhere.”

“Navigation to nowhere” perfectly sums up the experience of many parents I have interviewed about their attempts to secure mental health services for their children. As a country, it’s really in our interest to provide them with a compass.

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