Schizophrenic Homesick Blues

03/18/2010 05:12 am ET | Updated Nov 17, 2011

The expression, "I had a bad childhood," has never seemed sufficient for describing the horrors visited upon many youth. The expression's inadequacy becomes apparent when one hears the story of Jani Schofield, a seven-year-old, who has been diagnosed with schizophrenia and has already been hospitalized seven or eight times in psychiatric wards. Typically, psychotic disorders afflict people no earlier than their late teens.

Though we live in an era where too many have been over-diagnosed and over-medicated, the case of Jani Schofield makes one realize that not all diagnoses are created equal and some diagnoses, like child-onset schizophrenia, will never be fashionable.

The Schofields, who were the subject of a feature story in the L.A. Times several months ago, have battled not only their daughter's illness but also an inadequate health care system that provides residential facilities for developmentally disabled and autistic children but not for children with schizophrenia, at least not until the age of 16 or so.

Nor has the education system in this country been of much help to the Schofields. They are now home-schooling their very bright daughter, at least partly because public school teachers were ill-equipped to handle her. The teachers wrongly assumed that Jani was a fraud and a bratty child who was manipulating them with her tales of rats talking to and biting her.

On a recent Sunday, I visit Susan Schofield, mother of Jani, at the offices of L.A., a radio station which streams its programming on the Internet and iTunes. Along with her partner Bert Hamaoui, Schofield hosts Bipolar Nation, a talk radio show on Sundays. Once a month, Schofield, who was laid off a year ago as a radio and traffic reporter for Metro Networks, devotes her show to mental illness.

Though on this Sunday she is interviewing a singer/songwriter who takes the poetry of others and sets it to music, the subject of mental illness remains prevalent, from her constant refrain that "we're talking back to the voices in your head" to the references she weaves in about her daughter, who is institutionalized right now at the Resnick Neuropsychiatric Hospital at UCLA.

Schofield and her husband, Michael, always knew that Jani, short for January, was different. They just thought that she had a gifted imagination. It wasn't until Jani turned five and her baby brother, Bodhi, was born, that the Schofields found out their daughter's imaginary friends were in fact not just products of her imagination but also hallucinations.

In the past two years, Jani has had to be physically restrained from jumping out of a window at their home. She has also become violent on occasion with others, including Bodhi.

Like most psychotics, Jani has never planned her violence. It has always been "impulsive," says Schofield, who enunciates her syllables quite well, as befits one with a degree in speech communication.

Remarkably, Jani has also shown remorse. After hitting her brother, she offered him a plastic, pink toy in the shape of a bear.

That level of insight into her errant behavior is astonishing. As Schofield says, her daughter is brilliant and always has been. She first talked at the age of eight months and, according to Schofield, has an IQ of 146.

Of course, Jani's brilliance has not helped her and her parents navigate the bureaucratic nightmare of the health care and education systems.

When I ask Schofield what advice she has for President Barack Obama, she says that he must computerize medical records. She points out that every time she goes to a new social worker, she has to tell the same story about her daughter again and again, a story that keeps getting written down on notepads and filed away in folders.

Schofield also says that emergency rooms need to have "trained people" ready "right away" to meet the needs of a schizophrenic child. Too often she has gone to ERs and waited hours before getting the proper help, which sometimes never arrives.

She also says that public schools need their teachers to be "NAMI-trained."

As for the proposal for a public option in a new health care system, Schofield says that she, like most of the public, is for universal health care. Though the numbers have varied over the past few months, a poll conducted by the New York Times and CBS earlier in the year indicated that 72% of Americans, who were questioned, support government-run health insurance. But there appears to be less of a consensus on mental health, which has been largely ignored during the health care debate.

The Senate Health Education, Labor and Pensions committee's bill, which had grown at press time to an 839-page opus, contains only six pages on mental illness, and buries that section on pages 678-684.

Nor is the bill generous in its allocation of funds on this vital issue.

The Affordable Health Choices Act, which the Congressional Budget Office has estimated will cost roughly $1 trillion, allots only $35 million in grants to mental health workers. This strikes me as a sad oversight given that mental illness afflicts 26.2% of Americans aged 18 and over, according to the National Institute of Mental Health. Moreover, the World Health Organization's Global Burden of Disease study revealed that mental illness accounts for "over 15%" of the cost of disease in this country, a higher cost than cancer.

Perhaps, the issue still comes down to stigma.

It is true that Jani, even when medicated with clozapine and lithium, still sometimes becomes violent with people, including her actual friend, Becca, another schizophrenic girl, who has been hospitalized at the UCLA psych ward. But they typically get along well, and they both feel remorse when they become violent.

Schofield has been told that Jani's prognosis is 50/50.

If we are to give Jani and Becca and others like them a chance to succeed, then we need to be more generous in our funding for mental health. We also need to hear President Obama's voice on this issue.

Given the toll that mental illness exacts on this nation in suicides, lost days of work, broken marriages and, in WHO's phrase --"time lived in states of less than full health"-- it should be discussed openly in a public forum, not buried in legalese in an 839-page document.