I have been very open about the personal tragedy that has unfolded for our family and in particularly my son Elliott, who has spent the last four years incarcerated for an unfortunate event that happened during his first psychotic break with Schizophrenia. Over the past 4 years we have been up and down the mountains of suicide & decompensation. Delusions that haunted and terrified him – these delusions made everyday feel like it was his last. As a family, the trauma of this event has left lasting imprints on each of us. Depression, suicide, and anxiety, creeped outward into each of us. This disease blindsided our family with a blunt force blow that we are still feeling the effects of it…but our journey has just begun.
Over the past 4 years I have met many a mother who has buried their child because of this disease. Others have lost their children to the streets. The search relentlessly trying to locate the son or daughter who wondered off in search of whatever their voices were telling them to find. Some of them have watched as the Police have killed their children, others have come home to find their child had murdered other family members. The stories are all so tragic, so overwhelming…and almost every single one of them could have been avoided.
The standard of care in the United States for those that live with Schizophrenia or other serious mental illnesses, like schizoaffective disorder or bi polar disorder is non-existent. You do not know this unless you are an insider. I used to not be an insider, I thought that there were special places for those that were mentally ill to grow old and be cared for. I thought the people who talked to themselves at the traffic light and danced around with imaginary partners were on drugs. I lived in this kind of delusionary reality, where all was well – and the US was doing what the US does best caring for its most vulnerable. I was so wrong.
Unless you are an insider, your child gets sick or you are born into a world with a parent or sibling that is suffering these diseases you don’t know. The truth is that right at the prime of their lives, everything falls apart. There is absolutely no support system for the family set up, and they frantically start learning everything they can do to help. It is a trial by error, searching in the dark for a light kind of frantic feeling around for someone or something that can help you. And it doesn’t ever end – we are always searching for something. A doctor, a lawyer, a better medicine, a hospital bed, a conservatorship, a psychiatrist, an AOT program, a shot, a pill, a therapy, a group, an organization, all the way up to a president that gives even a shred of care to our plight in life. We search and search and search and we never find the answers it seems, its eluding us constantly. Too many of the mothers and fathers that I now know are searching for a way to continue to care for their children even after they leave this world behind – because they know once they pass on their children are going to be left to fend for themselves – and without the intervention of a loved one – most seriously mentally ill have three choices – jail, homelessness, or to depend on family.
The saddest part of this all is that it could be different. If a brain were looked at like a heart, or a kidney or a liver. If I am having chest pains I can go to the ER and they will clear everything out of my way to save my life. But if my brain breaks, I have to try to complete suicide or kill someone else before anyone will even remotely listen to me.
There are 5 things that could completely change the lives of millions of people and their families. These simple 5 steps could reform the entire Mental Health System in the US. The point i just made touches on #1, we have to come up with a new point at which we will intercede on the behalf of a human being who is in psychiatric crisis. This current standard is barbaric. We need to be proactive, not reactive. Anyone in a mental health crisis should be able to receive immediate medical attention, that should be the standard.
Secondly, make mental health care as easy to obtain and pay for as physical health care is. Politician after politician has claimed to bring about a parity of the two, and it just hasn’t happened. What do we have in place? Many parents are calling 911 for help and this ends badly for the child. Mentally ill people are the highest demographic killed by police because calling a police officer to provide medical care for someone in psychosis, is not what the person needs. They need a crisis intervention team, they need someone trained to deescalate the situation . If someone is having a heart attack they send an ambulance filled with paramedics. If someone is having a psychotic episode, they deserve an ambulance with paramedics trained in crisis diversion. Emergency medical attention should be available via psychiatric staff instead of police officers.
Thirdly, if the money that was sunk into the judicial system, trying to turn it into the default mental health care system could be redirected into actual psychiatric hospitals, assisted outpatient programs, club houses, etc. 50% of people with schizophrenia will end up in jail. Why? Because this disease affects the portion of the brain that controls their behavior. When in psychosis someone with schizophrenia cannot control their behavior, no more than a non-verbal autistic person could be made to speak. So they do things, even outside of their morals and beliefs, that ends up having them clash with police and thus once that nightmare begins they can be stuck for years, just trying to be made competent to stand trial. We are talking about billions of dollars that could better serve this population elsewhere. Those with serious mental illness belong in a hospital not a jail cell.
Fourth, this population is vulnerable and it needs special protections. We need to have an oversight committee that does nothing more than find ways to protect them. There needs to be an ombudsman in every situation, or place, that a mentally ill person may find themselves in order to protect them. I used to work as a CNA in a nursing home. The elderly are a very vulnerable demographic. In nursing homes many atrocities have happened, I am sure they still do. But there is a checks and balances system there that helps protect the residents from sexual, financial and physical abuse. Those living with serious mental illnesses need that same protection – they need a greater presence with power – outside of themselves making sure that organizations, systems like the judicial system, and even the medical systems are not abusing them and their rights. They need someone in their corner that has the responsibility for them to oversee their care .
Which takes us to the final step that would completely change the landscape of the mental health care system in the US. We need to come up with a way to intervene into the care of someone who is so sick they do not even realize that they are in danger. Instead of allowing people to roam around the streets, talking to themselves, eating from dumpsters we need to be able to assist these people. We need to make sure they are receiving appropriate care and shelter. In America we call it dying with your rights on. I have read horror story after horror story of children losing their parents to the elements. Can you imagine having your mother freeze to death because she refused to go to a shelter because she was too ill to understand that sleeping outside in the snow would kill her. Imagine your daughter, in full blown psychosis, telling you she is leaving to go live on the other coast – she plans on hitchhiking across the country but she never makes it out of town. She meets a man downtown who sells her to strangers for drugs and she is out of her mind and there is nothing you can do to help her. There has to be a long hard look at what anosognosia is and we need to see if we are in fact being inhumane by allowing people undue suffering by allowing them to slowly kill themselves on the streets. We need to care for those too sick to understand how to care for themselves.
I have been now advocating for those who are justice involved. I have seen, heard, lived some of the most awful experiences you could imagine. There is a human rights issue here on American soil. There are great big issues that we need to face. After 60 years of sweeping these issues under the rug we can no longer run from them. Gratitude and Grace is going to be my light to the world. I have had my blog now for some time but I want to do this podcast for those out there like me, that have a son like my son, that know what it is like to have to add money to the phone to speak to him – I have faced this with both gratitude – I am grateful he is still here and alive and with grace – knowing that this can happen to anyone and we need to apply grace to them, to their situation, to their illness – not punishment and persecution. I do believe by gratitude and grace we can make this a better place for those living with Serious Mental Illness in America.
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