Thousands of anguished parents face a system that thwarts them at every turn.
There are countless unanswered questions about why Jared Loughner allegedly went on a shooting rampage, but of this we can be sure: across America there are thousands of parents of older adolescents and young adults who are terrified that their child’s strange behavior, paranoid rants, drinking, drug abuse, conspiracy fantasies, and other red flags of mental illness will lead to violence—possibly against a public figure like Rep. Gabrielle Giffords, possibly against a family member. That most of these parents have no idea what to do is frightening enough. It’s a national scandal that, even if they succeed in getting their child mental-health care before tragedy strikes, the system is set up to thwart them at every turn.
“The mental-health-care ‘system’ in America is a broken system,” says Michael Fitzpatrick, executive director of the National Alliance on Mental Illness (NAMI). “The system was already in crisis, and has become even less accessible over the last three years as state budgets for mental health—psychiatric beds [in hospitals], counseling, and other services—have been cut by $2 billion. States have eliminated 4,000 in-patient psychiatric beds.” NAMI’s Katrina Gay adds, “In many cases you can’t even get an evaluation for two to three months—and that’s assuming you know how to get one in the first place.
The nightmare scenario begins when an adult child refuses to acknowledge that he or she may be suffering from a mental illness. (Parents can force a child under 18 to go to a physician, though persuasion is always more effective than coercion.) Yet often the signs are clear. There are changes in behavior: the child no longer has friends or engages in any activities, becomes socially isolated, stops bathing, dresses inappropriately, stops working or going to school. In Loughner’s case, fellow students and faculty at Pima Community College were terrified of his rants and incoherence, with one woman making sure she always sat by the door in the classroom they shared so she could make a quick escape. A second sign of mental illness is that moods change: the child becomes more irritable, angry, or depressed, or simply loses his or her spark. Finally, thoughts change, turning to the delusional and paranoid, such as Loughner’s belief that former friends were stalking him at 2 a.m., as The New York Times reported. Don’t make the mistake of thinking that a child is too young to suffer from mental illness: half of all cases first appear by age 14, and three quarters by age 24, found a 2009 report by the Institute of Medicine of the National Academies.
The most effective approach to a child who shows signs of mental illness is to sit down and have a calm conversation about what you’ve observed, according to experts, make clear that you want to help, and assure him you will always be there for him. Tell a teenager that you know he wants you to leave him alone, but that as a parent you need to protect him. Say you just want to help him get his life back.
Now what? If the child—or, indeed, any family member—agrees there might be a problem, the challenge is to find competent care. But that is far from easy, as Dr. Lloyd Sederer, medical director of the New York State Office of Mental Health—the state’s “chief psychiatrist”—explained in a Huffington Post blog on how to find a psychiatrist. Getting an accurate diagnosis and finding help is such a challenge that the average lag time from onset of mental illness to treatment is nine years. Sederer and other experts recommend that parents start with the family physician, and also call the local chapter of NAMI, where they can speak to others who have helped a relative through a mental illness and who can offer information, referrals, and support.
When an adult child with signs of mental illness refuses to accept that possibility, parents have only a few choices, none of them good. You can withhold support: no extra money, no borrowing the family car, no anything (except food and shelter: experts do not recommend throwing a child into the street unless you fear for your safety). But in severe psychosis, the person may be mentally unable to perceive reality, so getting him to acknowledge he is ill is about as likely as his sprouting wings.
Ironically, Arizona’s Pima County has a mobile psychiatric unit that anyone—patient, family, acquaintance—can call on a 24-hour hotline and that will send a professional to evaluate or provide counseling to someone who seems troubled, says NAMI’s Fitzpatrick. “In Arizona, that’s your entry into the system,” he says.
A person with mental illness who refuses to seek or accept help is at risk of an acute breakdown, whether a suicide attempt in someone with major depression or a psychotic episode in someone with schizophrenia. In that case you may find yourself having to call 911, which will bring cops and, possibly, a trip to the ER. In this case a parent’s work has just begun. At a minimum, insist that the ER perform the standard screening and diagnostic tests for depression, bipolar illness, eating disorders, psychotic disorders, and drug and alcohol abuse. The ER staff can’t see the full extent of the patient’s behavior, mood, and thoughts, and “in case after case even a psychotic patient will pull it together in the ER and convince the doctors that he doesn’t need to be admitted,” says one leading mental-health expert (who asks not to be named because his employer prefers he not speak to the press). As a result, the ER is likely to settle for observing the patient for a few hours, and perhaps stabilizing him with medication before sending him home. “The system is stretched beyond capacity,” says NAMI’s Gay.
Recent history is full of examples of families desperately seeking help for a mentally ill adult child and finding none. In Minnesota, a 23-year-old man decapitated his stepmotherin 2005 after his parents struggled for years to get him help. The man refused to take antipsychotic medications, and although he was severely paranoid (he often stayed awake at night because he feared intruders, carried knives, locked himself in his room, and believed his tooth fillings monitored his thoughts) and a danger to himself (he once put a cord around his neck and incised the words “kill me” into his chest), when he was taken to an ER the doctors did not admit him, instead letting him walk out. Last year, he was found not guilty by reason of mental illness.
If you feel strongly that your child needs to be admitted, you need to speak to the ER doctors, describe all of the patient’s troubling behavior, and emphasize how scared you are for yourself (if so) and for him, experts say. The mental-health system’s default position is to provide the minimum amount of care that won’t get the doctor or institution in legal hot water. You may therefore have to escalate, asking the ER staff if they’re absolutely sure they want to discharge your child given what you’ve told them and “what can happen in cases like this.” All this pertains even if the child is willing to be admitted.
If he isn’t, then you are facing the daunting obstacles that stand in the way of an involuntary commitment. As I described in an earlier story, a patient can be involuntary committed if he poses a danger to himself or to others or is “gravely disabled” (Arizona allows a fourth route: if someone is “persistently or acutely disabled.”) A physician can make the call—in which case the patient is admitted for about 72 hours, depending on the state. During that time he will be observed and probably medicated. And then released—with little or no follow-up or counseling. “If you are feeling bewildered and lost, welcome to the reality of mental-health care in this country,” says the mental-health expert. “Our ‘system’ is no system at all. It is a collection of fragmented services.” In this case you are likely to be right back where you started, ready to repeat the whole 911/ER/persuade-the-doctors ordeal.
Unless you go to court. To have someone committed involuntarily by court order requires that you meet the same standards—danger to self or others, gravely disabled—but with the added hurdle that courts bend over backward to protect an individual’s right to freedom.
A New Jersey family discovered that over the holidays. Their elderly father has been delusional for years, believing that his wife of 44 years and his children are conspiring against him and that people are going to kill him in his sleep (so he doesn’t sleep more than an hour or two each night). He threatened to kill his wife and grown daughter, tried to jump out of a moving vehicle, and threatened to burn their house down. He gets lost a few miles from his house, was physically abusive to his wife, and suffers frequent blackouts, writing incoherent 15-page letters and not remembering doing so. “He spiraled out of control starting three months ago but refused all treatment,” says his daughter, who asked for anonymity to protect the family’s privacy. “Eventually, he collapsed in a store, and when he was taken to the ER he acted like a total lunatic, becoming violent with his wife and the doctors.” A psychiatrist determined that he met the criteria for temporary involuntary commitment, and he was admitted for about a month to a psychiatric facility, where he continued to call home and make homicidal threats. But at a commitment hearing—even though a doctor and social worker, as well as the family, asked that he be sent to a longer-term facility—the judge refused, giving no reason except to say that if the family fears for their safety “they should get a restraining order.” His terrified daughter, 31, says, “If they continue to refuse treatment, there is nothing you can do.”