Anita: Encountering Barriers in the Mental Healthcare System

In her sophomore year of college, an ACT (Assertive Community Treatment) team provided comprehensive, intensive services to Nina. A psychiatrist, social worker, and case manager came to their home to meet with her. At that time, Nina was not taking showers or changing clothes. The team struggled to create rapport with Nina. She rejected the case manager who was white and older. Although the ACT team provided structure and reduced some of the pressure, Anita was disappointed when the team dropped services because Nina seemed to be doing well. She described the system as “a roller coaster” and “frustrating.”

Note: ACT teams provide intensive rehabilitative in-home services to people living with a serious mental illness who live on their own or with family or friends. The team consists of a psychiatrist, case manager, and often a nurse for medication management. The goal is stabilization in a community setting and avoiding re-hospitalization.

Recently, Anita called a mental health crisis team when Nina did not sleep for five days, since she believed that not sleeping would make her more artistic. The crisis team decided to send her to the hospital and called the police and an ambulance. Because of recent negative events with police offers and people of color, Anita asked if officers of color or those trained in mental illness could come to help Nina. She asked for different officers but was told they were the only ones available. Anita reported, "They had their hand on their Taser. It was horrible. My other daughter, Serena, was there, crying. I’m holding her but I’m also ready to pounce.” Nina stayed in the hospital for six days, including a 72-hour hold. At discharge, mental health staff told Anita and Luke to call the police if Nina left their home.

Note: Mental health crisis teams are available 24 hours a day to respond to a mental health crisis at home, school, work, or other location. The team responds by phone and may choose to meet face to face with the person in crisis to assess and de-escalate a situation. The team contacts emergency services when needed and provides access to psychiatrists, healthcare navigators, mental health crisis beds, and makes referrals to community mental health providers.

Note: A 72-hour hold, authorized by state law, refers to the legal decision to hold an individual who is mentally ill, developmentally disabled, or chemically dependent and is in danger of causing injury to self or others in a treatment facility for 72 hours (excluding holidays and weekends) for evaluation. The facility must release the individual within 72 hours unless a court order is obtained to hold the individual for a longer time period.

Anita found that mental health providers did not always understand the challenges encountered by parents as they struggle to parent a child who lives with mental illness. For example, a psychiatrist shared his own difficult childhood; his father became extremely angry when he changed the thermostat from 68 degrees to 69 degrees.

I said to him, “What if you had changed it to 85?” Because that’s what my daughter does. Nina said, “Mom, I haven’t done that for a long time.” She hadn’t done it for a couple months since it was summer now. The psychiatrist said, “Good for standing up for yourself, Nina.” I get that. We want to validate her. But if she turned it to 69, I wouldn’t even care. I almost put a lockbox on the thermostat. She would take the vent box off in the basement so all the heat went into the basement when she was watching TV. Another time I was talking about how I worried about her going out at night. There were times we’d get a call from other parents. She’d be drunk at some boy’s house. Could we come pick her up? The psychiatrist responded, “I worry about my daughter too.” He has a 20-year old. I said, “Does she have mental illness?” He said, “No.” I said, “You know what, it’s different.” It’s not just this normal worry. It’s really different. It bugged me that he felt like his life was like my life. Because it’s not.

After her discharge from the most recent hospitalization, Nina was given a follow-up appointment for nearly six weeks later. Anita responded, “That’s not good enough, it’s not. It’s like saying, we can cast your leg in about a month and a half. Is that okay? I know you’re in crisis here. No, it wouldn’t be okay.”

Anita’s older daughter, Serena, is doing well on her medications, although both girls are concerned about the side effect of weight gain. Anita is critical of a mental healthcare system that does not address healthy nutrition and sleep cycles for persons who live with mental illness. No one has addressed wellness topics in decisions about treatment for her daughters.

Anita summarized the many diagnoses Nina has received in her encounters with providers--generalized anxiety, panic attacks, depression, schizoaffective bipolar disorder, and personality disorder. After taking no medications for a year, Nina started new medications with the side effect of sleeping all day. Anita observed, “It’s a very messy science.”

More of the Story: Engaging in Self-Care