How Do We Protect Our Adult Children With Serious Brain Disorders In a Broken System?

Anonymous

​As parents, we bring children into this world knowing it is our job to protect them. Unfortunately, when my young adult son, Jack, was diagnosed with a serious brain disorder (SBD), commonly referred to as serious mental illness (SMI), I found myself helpless to keep him safe. The current laws in my home state of Massachusetts frequently result in incarceration, violence, and homelessness, leaving many of those with SBD to die prematurely, rather than receive the treatment they desperately need.

As I watched multiple gut-wrenching tragedies unfold on the news over the past year, so many related to untreated SBD, I knew there has to be a solution. With a Google search, I found the Treatment Advocacy Center and learned about Assisted Outpatient Treatment (AOT). I’d never heard of it. 

AOT provides community-based psychiatric treatment under a civil court commitment. It is a means of engaging an adult with SBD who struggles with voluntary treatment adherence. It focuses the attention of treatment providers on the need to keep the person engaged in effective treatment. I have become a strong advocate for AOT, the compassionate care credited in helping so many with these devastating illnesses in their ongoing recovery. Yet, AOT is something my state of Massachusetts does not have. Maryland and Connecticut also don’t allow AOT. 

As a master-level nurse who knows how to navigate the healthcare system, the options  available to get my son, Jack, the help he needs when experiencing a manic episode are non-existent. I am left watching his condition deteriorate as he becomes increasingly psychotic, that is, until he actually becomes a danger to himself or others. The irony is that it then becomes a law enforcement issue.

The night the police were called to his apartment building, Jack was roaming the halls with a pocket knife in hand, paranoid and fearful that someone was after him. He was a danger to himself and others. This situation could have ended very tragically, and so I vowed to never again let his psychosis escalate to that level.

Being in close contact with the Crisis Intervention Team of the local police department, the perspective they shared was that Jack would need to be arrested, preferably before he was a danger, so that the court might commit him involuntarily to a psychiatric hospital. 

In the summer of 2021, when Jack became manic again, I knew that the paranoia and delusions were beginning to set in. He could become a danger again. I was convinced that I needed to get him arrested to get him help. I found my opportunity.

Jack had scratched a swear word on the trunk of our car. I called the police and told them that I wanted him arrested for destruction of property, even though I wasn’t positive he did it. I believe the police only arrested him because they knew he needed help. 

I thought that having Jack arrested and involved in the criminal justice system would be the best way to ensure that treatment would be provided. And he did get help. I was grateful for the 30+ days that he spent in an inpatient state facility after he was evaluated by the court clinician. Earlier intervention of his psychosis was extremely beneficial in that he recovered and returned to baseline much quicker than he ever had.

But that’s not the end of the story. The reality of what I had done set in soon after Jack’s release from the hospital. It was very clear the moment we stepped into the courthouse that he was being criminalized for having a SBD. Despite his time spent in the psychiatric hospital, the District Attorney charged him with felony vandalism because the damage was over $250. There was no compassion or understanding around the needs of someone living with a SBD. Instead, he was treated no differently than a criminal would be, with punitive probation, random, often daily drug and alcohol testing, and the authoritarian nature of the judge (because of the lack of knowledge of his SBD). None of this helped. In fact, it only added to his instability despite taking his medication. My job as a mother is to protect my son. But in order to do so, I was put in the horrible position of having to engage him in nine months of punitive treatment. I still feel extremely guilty for putting him in a system that was unable to recognize that having a SBD is not a crime, and shouldn’t be treated as such. 

This experience is one of countless examples of how broken our mental health care system is, and how marginalized those with SBDs are throughout the United States. The harsh reality is that those living with SBDs are too sick to fight for their rights. 

As Jack’s mother, I am compelled to keep fighting to protect my son. Our loved ones deserve better. They deserve the compassionate and effective treatment approach of AOT in every state across the United States!  

I have learned that to affect real change, I can’t do it alone. I joined the National Shattering Silence Coalition so that collectively we can make our voices more powerful. Support and join us #ShatteringSilence and #InspiringChange for the 22 million people who live with these devastating illnesses. They too deserve a life of compassion, purpose, and hope.


#justiceforSBD #righttotreatment #HIPAAhandcuffs #lifelongcare4SBD #parityforsbd #fundingequity #abedinstead #treatmentbeforetragedy 
#ShatteringSilence