Navigating the Mental Health System with Dual Diagnosis

By Cindy and Don Gibbons | Oct. 04, 2017

 

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 2003
Alex at Yosemite National Park in 2003

We 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.

Comments
Gloria
I'm so upset to read how the system failed your son. I know you're grieving but please file a compliant to the Ca. Health Division on the CCBH system that failed your son so CC will be forced to improve so this doesn't keep happening to others.
11/11/2017 8:55:46 PM

Lauren Rettagliata
Thank you so much for having the courage to write and share your story. Your story is an unnecessary tragedy. I am living a very similar story--however, my son is still alive. I pray daily that we can repair the broken mental health system that allows very ill people to go without treatment. My son because of his illness does not engage in treatment. Please know that I try daily to get Contra Costa County to repair the system that lets people with a serious mental illness linger in the revolving door that does not open to meaningful treatment.

Please know that you may contact me. Google my name and you will see that I am a Mental Health Commissioner for our County that is always advocating to repair and build a system that works for those with a serious mental illness. I thank you for your advocacy and hope that we can join forces to make a better system.
11/11/2017 4:26:05 PM

Helen
Hello Cindy & Don, I give my deepest sympathy to you both! I don't know where to start, when I went to the mail box today I had an envelope from Nami, I opened it and on the first page was your story! It was like reading my life with my 32 year old son Joshua! I can't begin to tell you how identical our stories are except my son is still spiraling downhill and my biggest fear is he will not be here tomorrow because he too is not getting the proper treatment and has been hospitalized at least 6 times in the past 3 months and he to is released after being held for 3 days! Please if you can refer me to any agencies where I can get help for my son or anything at all I'm desperate and broken hearted! Thank you so much for sharing your story it really means so much! God Bless you both!!
11/4/2017 8:00:59 PM

Michelle
My son has had varying diagnoses over the years. As a medical writer I think he is bipolar with psychotic features. He also has OCD and grandiosity. So naturally, he doesn't think he needs any help, he's just fine, thank you, and in fact SUPERIOR to everyone else. And of course, I can't speak for him because he's an "adult," so called. Meanwhile he is spiraling out of control and has alienated everyone in his life. No one can live with him, no one wants to be around him and because he self-medicates (as do most people with mental illness), no treatment center will take him. He seems to be too ill to help -- ironically, you gotta be much healthier to get help in those group homes. In this backward country, the only way you can get help for the mentally ill seems to be when they shoot up a school.
10/23/2017 3:17:41 PM

Lisamarie Torres
I am so sorry for your loss. I believe that if there were as many people willing to advocate as there are to disregard it would lessen the stigma. I have a mental illness and people who don't know are quick to make assumptions disregarding the seriousness of the illness causing the ill person suffer more. You wouldn't disregard someone's need for insulin and the difficulty they are going thru learning to live with the illness. It's nearly impossible to achieve lasting wellness and balance with the stigma behind mental illness. We are set back especially when you feel disregarded. I'm super in crisis right now and feel shame.
10/20/2017 10:53:28 AM

Audrey Flores
I need help for my 23 year old son he’s an exodus admitted yesterday

Do diagnosis has never participated with a psychologist

I have the psychiatrist as of four months ago Dr. Siebert Randy 😉 have the psychiatrist as of four months ago Dr. Siebert Randy 😉 Cohan medications that he does not take or abuses hard alcohol suicidal hung himself in front of me Friday I want the magic word so he could be transferred to Kewannee mental health through our private insurance what to say
10/11/2017 9:12:51 AM

Ellen
I struggled with this issue in Sacramento for a decade. When she had a baby she overheard the nurses call her "the heroin mom." So much education needs to be done! Thankfully she is well and raising her son now. But as a nurse myself, I have to say that it is not just the system itself, but also the professionals who work in the system who need awareness about the reality of dual-diagnosis. I am so sad for your loss. And, although I was miraculously spared a loss such as yours, I'll never forget those days and nights when I feared the worst. And then, when my daughter wanted help, I will not easily forget how shabbily she was treated. I am very active with NAMI but after reading about your experience, I will do more.
10/5/2017 2:54:40 AM

linda
So sorry to hear your story. I think there are many similar stories. We live in Orange County, CA, and there don't seem to be any programs here. My son his only been in the "hospital?" once. It was a horrible place, no hope for treatment, but it scared him enough to co-operate at home. It's us or the street. Don't know what will happen to him when we are gone. There should be money from a proposition for more treatment facilities, don't know where the money goes in Orange County.
10/4/2017 9:40:55 PM

Maureen
Cindy and Don,
I am so sorry for the tragic loss of your son Alex. My heart breaks for you and families like yours who try to get the help their loved one needs navigating the broken system we currently have. Reading your story I could feel the despair and shock that there was no medical help for Alex's medical emergency.

Thank you for your continued efforts to help change the way we treat addiction and mental illness. And what a beautiful testament of love and honor for your son Alex. May God bless you both.
10/4/2017 8:52:49 PM

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