There are times in life when one is exposed to a "perfect storm" of events that necessitates a serious and prolonged contemplation of the evoked issues. A death in one's family, another school shooting, a random stabbing in a Boston suburb, and the present political climate are events that have converged to inspire introspection about our lives and our society in general. 

The following paragraphs are very personal and reflect my own thoughts and feelings, based on my experiences, and do not reflect any official position of NAMI CC&I, NAMI Mass, or NAMI National.

Many of you are aware of the fact that I originally chose to volunteer at NAMI CC&I in response to my gratitude to NAMI Champlain Valley in Upstate New York and the many times and ways they helped me and my brother over the past 18 years. After volunteering at NAMI CC&I for several months, I eventually became a paid consultant, then the manager of the SLK Golf Tournament, and finally the second Executive Director. NAMI, a national grassroots organization with a mission that includes responding to the needs of families and friends of the mentally ill, relies on those with "lived experience" to teach NAMI courses and to run support groups.

 

Part I - Reflections On a Difficult Life and My Lived Experience

 

My only sibling, my younger brother, Lawrence Davis, died on February 16th at the age of 67, ending a life filled with the trauma and the pain of one living with serious mental illness. I was not informed of his death until after the event and after his cremation. (I am assuming that this was at his request.) Larry was a very bright and creative individual, graduating from Colgate University with high honors in 1970. During that period in college, at age 20, he showed his first overt signs of mania and paranoia, following a very typical pattern of diagnosis in this age group. It was also the time of LSD, pot, and general social upheaval and rebellion. It was easy for my parents to blame his mental health issues on illegal drug use and the prevailing atmosphere on campuses in that era. In reality, there were eventually diagnoses of Bipolar Disorder and Schizophrenia. I also suspect that Borderline Personality Disorder and Anosognosia (denial of mental illness) made him especially difficult to treat and to relate to.

 

During his lifetime, our family (from 1968 - 2000, the year of our father's death) and then myself from 2000 to 2018 dealt with every aspect and issue of a family with a difficult and mentally ill member. My parents dealt with having a child in a state mental institution for three years, having an adult mentally ill child living at home during their retirement, the inability to discuss his condition with his doctors, and having to call the state police and have him arrested due to a knife attack on my father. I have dealt with legal battles over a trust, arrests for arson, rape, drunken driving, possession of an illegal weapon, and threatening a person with a firearm. I have dealt with homelessness, inability to handle money, and the burning of bridges with social service workers and agencies providing care and help, and a competency hearing. I have also lived with frequent middle of the night, highly abusive phone calls and threats.

I have also seen the mental health system change over the span of 50 years, including the closing of many of the mental health hospitals, the advent of "half-way" houses, the development of "community-based service" models, and the application of the HIPAA laws as applied to the mentally ill. It has not been a successful transition or a "pretty picture," and in fact, many would say that the criminal justice system has become the mental health system. The homeless population (mostly mentally ill and addicted persons) has exploded creating another social issue with which to deal.

 

When I reflect on the life of my brother, I cannot help but ask, "Could it have been different?" Could this very bright and talented person have had a better and more successful life if we as a society were more cognizant and caring about mental illness? What if the mentally ill person were treated equally and was afforded the same quality of care as the person with cancer or a heart condition? I suppose, in the final analysis, I can say that in many ways my brother was luckier than some. With a managed trust fund, help and understanding from the people at NAMI Champlain Valley, Behavioral Health Services North, and the Clinton County Department of Social Services - Adult Protective, he had a roof over his head (his own home), food, and much needed medical attention until his death. My parents desire to "please do not let him die on the street" was fulfilled. But this was a life full of potential. We are not prioritizing mental health and we are not providing the necessary funding for services. We at NAMI CC&I attempt to help families with members like my brother every day and find it extremely discouraging as the resources and the answers are often elusive. We cannot continue to waste these lives! We all need to do better!

 

Part II - Civil Liberties and Public Safety - Where is the Balance?

 

In the past few days, we have experienced another school shooting and the usual finger pointing and political posturing that always takes place after such an event is raging. In addition, there has been a random stabbing fatality in the Winchester library. In both cases the perpetrators had been exhibiting signs of mental illness and violent behavior for some period of time. Authorities were aware of both young men and had had encounters with them. However, both remained free, and eventually their untreated mental health conditions led to violent acts and the tragic loss of life of innocent people.

 

Immediately the usual questions have been raised. In the case of Florida, the issue of gun control, especially banning of automatic weapons arose as well as the question of people with a mental illness background having access to the purchase of weapons. There have been calls to reopen the mental institutions and to come down hard on the mentally ill. In fact, the percentage of people with mental illness who commit violent crimes is very small and the mentally ill are more apt to harm themselves or be a victim of a violent crime rather than to commit one. Although, growing up in Northern New York, where the purchase of a long gun and going hunting is a rite of passage, as it is in many parts of the country, I see no reason for a civilian to have access to a military weapon which was designed for the sole purpose of killing adversaries in a combat setting. A gun crazed culture is not helpful; however, it is not the underlying issue.

In the case of the Winchester, Massachusetts library killing, a knife was used, negating the gun debate in this incident. However, if the young man had had an AR-15 instead of a hunting knife, many more would probably have been killed. Again, the young man responsible was known to have mental health issues, had been reported to the police, and was still at large and able to commit this heinous crime.

 

The common denominator in these two cases is the fact that both of these young men were obviously seriously mentally ill and known to authorities, yet they were untreated and free to act on their impulses. Not only are we dealing with a public which has not made mental health a priority, but we are dealing with a lack of services making it very difficult for families to access and afford treatment for ill family members. Additionally, our laws, designed to protect the civil liberties of the mentally ill and their privacy, make it extremely difficult for families, social workers, police, and even hospitals to mandate treatment for those in desperate need. Even if one is fortunate enough to get someone into a hospital or facility, that person often has the right to leave unless a court order can be obtained. Or perhaps the insurance company has limited the days that will be reimbursed for a hospital stay. Thus, the mentally ill person is released and if his family refuses or is afraid to take him back, often the best that is given is a list of shelters. The criteria for police to forcibly bring one into the hospital are very strict, defined as "being an imminent threat to oneself or to others" and are open to interpretation. All too often, the person can be released back onto the street with little or no treatment. This includes the very small percentage of the mentally ill who are violent.

 

First of all, there needs to be a national priority on addressing mental illness and the failing system of treatment. Additionally, there needs to be enforcement of equal insurance coverage for mental illness. Serious funding must be designated to implement mental health programs. And finally, there needs to be a reevaluation of both the HIPAA laws and the civil liberty rights of one who is mentally impaired and is not able to make rational decisions about treatment. At this time both agencies and families often feel that their hands are tied when it comes to getting a patient or loved one into treatment.

 

Are we doing a good job of balancing individual civil liberties versus the right of a society to feel safe? Do the rights of the individual trump the rights of a population to be protected? Where is the balance? What is fair to everyone? Perhaps these are some of the hard questions that need to be explored and answered by those in positions of authority in addition to providing and funding the services needed. Let's hope that we are able to rise to the occasion. This problem is not going to go away!