Families Grapple With Costs of Childhood Schizophrenia

Hospitalizations and tracking antipsychotic meds among challenges families face.

ByABC News
March 9, 2010, 2:47 PM

March 10, 2010— -- Thirty miles north of Los Angeles, in a community in the Santa Clarita Valley, Michael Schofield rushes home at 5 p.m. to meet his wife Susan. It's the time of day when Michael and Susan swap their two young children.

Michael has been taking care of the couple's 2-year-old son, Bodhi, since the previous night. Susan has been in charge of their 7-year-old daughter, Jani. They convene in the parking lot of the apartment complex where the couple rents two separate apartments -- one for Jani, and one for Bodhi. United for a brief moment, the family hovers as Michael and Susan discuss their schedules. Then Michael leads Jani back to her apartment, while Susan carries Bodhi back to his.

Since the age of 5, Jani has experienced violent and commanding hallucinations, in the form of numbers and animals that instructed her to hit, kick and bite her parents and baby brother.

Early in the summer of 2009, the Schofields started living apart as a way to help manage Jani's battle with childhood-onset schizophrenia. After several years of living with the disease, Michael and Susan decided that to protect both children, they had to live in separate spaces.

"She was 5 years old, and she came up to me and said, 'Mommy, I -- I can't tell the real world from my imaginary world,'" Susan Schofield told ABC News correspondent Jay Schadler.

By 2009, Jani's schizophrenia was so debilitating that she spent a total of 207 days in UCLA's child and adolescent psychiatric ward. Her doctors said they believe she hallucinates during all of her waking hours.

Jani's parents must stop her from obeying the commands of her hallucinations. They monitor her daily intake of powerful antipsychotic medications, and protect themselves and Bodhi from Jani's occasional bouts of violence.

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The Schofields face a financial fight as well. Keeping the two apartments has put immense economic strain on the family. Susan was laid off from her job as a news and traffic reporter in September 2008. Michael took a leave from his job at a state university in the fall of 2009 to help care for Jani. Paying for two rental properties, various medications, psychiatric therapy and food stretched their finances to such a limit that at one point, Michael resorted to asking for financial help from friends online.

Michael and Susan Schofield have also battled insurance companies to help pay for their daughter's hospitalizations. Jani's hospital stays have been covered jointly by state and private insurance. The Schofields said that before they took their story public, their private insurance company would frequently refuse authorization for hospital stays after two weeks, no matter what Jani's condition.

Fourteen-year-old Brenna Wohlenberg understands all too well the daily demons Rebecca and Jani face. ABC News documented several of Brenna's psychotic breakdowns, where voices she calls "spirits" were telling her to become a serial killer.

Her diagnosis is still uncertain, says Dr. Mark DeAntonio, director of the child and adolescent psychiatric ward at UCLA.

"She gets very explosive and out of control. She hears voices at times," DeAntonio told ABC News. "I would say with her, it's -- there is something disturbed about her."

'There's Something Disturbed About Her'

Brenna's family has not one but two children in the throes of mental illness. Her younger sister, 12-year-old Ailish, also struggles with hallucinations, violent tendencies and the possibilities of schizophrenia. The youngest daughter, 9-year-old Kieran, is healthy.

On top of hospital bills and therapy sessions, the monthly co-pays for both Brenna's and Ailish's medications are approximately $300 a month for the family. All three Wohlenberg girls are covered under their father Brad's insurance, but their mother, Wohlenberg, told ABC News that getting appointments with an overwhelmingly busy local psychiatrist is nearly impossible.

The financial burdens faced by these families are only one facet of the struggle. After almost a year of rotating between two separate apartments, the strain of the arrangement shows in the Schofields' relationship. The couple opened up to ABC News about the times when things have looked so bad that one or both have considered having affairs, or moving away. On the most difficult days, they admit to having contemplated suicide.

"Living apart is hard," Michael Schofield told ABC News. "We are not able to be with each other constantly and there is a lot of mixed messages...it is kind of like living as a divorced couple."

He says they get little relief when friends offer to take care of Jani and Bodhi.

"They have the best of intentions but it is still stressful," he said, "because unless Jani is at UCLA, we are never confident of her safety."

Jennifer Wohlenberg laments the strain placed on her youngest daughter because of Brenna and Ailish's ailments.