It is with a heavy heart that we share our family experience and struggles while attempting to navigate a broken mental health system. Our son Alex suffered from a dual diagnosis of schizoaffective disorder and substance abuse. He was diagnosed seven years ago, although he had suffered much longer undiagnosed.
As Alex’s parents and advocates, we were constantly in search of support and resources. We found NAMI and attended support meetings and took NAMI Family-to-Family. We were eager to educate ourselves and speak with other families affected by mental illness to better understand how to help our son.
At a NAMI resource fair in 2016, we met representatives from a residential dual diagnosis program called Nevin House. We were provided with information regarding the requirements for admission into this program, which is the only dual diagnosis program sponsored by Contra Costa Behavioral Health Adult Services (CCBHAS). It felt like Alex’s life depended on him being admitted to a dual diagnosis program like Nevin House. We had a glimmer of hope as we began working on the steps to admission.
In January 2017, Alex had an intake appointment. The intake professional listened to Alex’s struggles with a compassionate ear and recommended a case manager who would help Alex navigate the CCCBHAS system and provide him with the right resources.
Three months later, however, as Alex continued to become more unstable, he still had no case manager. We were told he was 50th on their waiting list. We repeatedly called the CCBHAS residential program office, but no one returned our urgent calls.
Alex at Yosemite National Park in 2003We didn’t know where to turn for help. The county eventually told us that we, Alex’s parents, were responsible for navigating the CCBHAS system—we were his case managers. This was near-impossible, and we faced many roadblocks and feelings of isolation. Meanwhile, Alex was spiraling in and out of his addiction and continuing to experience psychosis. Our family was in crisis: Alex was a danger to himself and us.
We called several other residential programs for placement, only to be told they were not dual diagnosis programs, and could not effectively treat Alex’s psychosis due to his substance abuse.
Twice in early-Spring we called the police to request involuntary psychiatric holds for Alex. He was held for a day before being discharged with a diagnosis of schizophrenia with psychotic disorder and amphetamine abuse—a “revolving door diagnosis.” Again, we were told they could not help Alex due to his amphetamine abuse.
The two involuntary holds moved Alex up CCBHAS’s list for a case manager. Alex met with a CCBHAS social worker, who arranged an interview at the Niven House. Our family had hope again: Alex was going to get the treatment he desperately needed, and by April, Alex was clean from recreational drugs.
On May 10th, Alex received a call from his social worker: He was denied treatment at Nevin House. Apparently, they decided during his interview that Alex was not committed to the required six months of treatment. “Alex’s admission would be too disruptive to the other clients,” they said. Alex was willing and ready to go into treatment, but unfortunately, was never given a chance.
Thirty-two hours following that call, Alex died. He collapsed while walking on the side of a street in his neighborhood and was found by a passerby. Alex’s was rushed to John Muir Trauma Center, but the medical staff was unable to revive him. He died of acute methamphetamine intoxication.
As hard as we fought and advocated for our son, there were no resources for him. He was willing to receive treatment, but the system was not willing to help.
As mental health advocates, we are passionate about increasing access to resources and services to treat this vulnerable population. People with mental illness, particularly those with dual diagnosis, are in desperate need. As parents of an individual who experienced dual diagnosis, we cannot describe how important it is that mental health professionals work with patients and families, and provide help navigating the complex mental health system with expertise and compassion.
While we continue to mourn, we will always wonder, “What if?” What if Alex had received the support and treatment he needed? What if he was offered a stay in a residential treatment facility?
It is our hope that through reading our family’s experience, you will begin to understand the complexities embedded in the flawed mental health system. By offering a glimpse into how we struggled with the system, we hope to instigate change. As advocates. As parents. In honor of Alex.
Cindy and Don Gibbons are NAMI Donors and caregivers.
Note: This piece is a reprint from the Fall 2017 issue of the NAMI donor newsletter, Voice.
During Mental Illness Awareness Week, and in honor of those like Alex with experience dual diagnosis, you have the opportunity to make an even greater impact. A generous donor has offered to match donations, dollar-for-dollar, up to $100,000.
Donate today to double your impact and help build better lives for people affected by mental illness.