Preventing the Next Waffle House Shooting

Have you noticed the lack of attention about the Wafflehouse Shooting? There is scant media attention for the wonderfully brave James Shaw Jr., who stopped the shooter before the death toll rose and has raised money to help bury the victims. And I’ve seen almost no new clamor for changes needed–gun control and/or mental illness care–to prevent the next shooting. I think we’re becoming numb to mass shootings. The police captured Travis Reinking, the mentally ill young man behind this shooting, at the Wafflehouse in Tennessee, pretty quickly.  I feel so bad for the four young men who were killed, and for their grieving families.

You may wonder, how could Reinking, the shooter, have been arrested last year, identified as seriously mentally ill, and be walking around a year later with four guns?  I am not surprised. After my family’s connection to serious mental illness, I know that our system of mental healthcare is more confused than the people it is supposed to help. Also, it is pretty obvious that the 300 plus million guns floating around our population are out of anyone’s control. They are like the terrible virus spreading in a disaster movie, and it may be too late to eliminate the threat.

But there are ways to help contain it.

Obviously one way to reduce shootings is to make it more difficult for people to get guns. And I hope Congress will put forward and enforce legislation on gun control. Here, though, I want to focus on serious mental illness (SMI). These are people with schizophrenia and serious bi-polar disorder and the like. People with SMI make up about 4% of our population, but are behind about half of mass shootings.

Mental illness

Our care systems for mentally ill people do not take into account the fact that SMI is a chronic, and usually worsening condition. Someone who is mentally ill needs not only emergency care in an ER when they are having a psychotic episode, but also long term follow up care for the duration of their life. There is often an ebb and flow to the illness, and without monitoring and intervention when necessary, it can quickly escalate. Think of diabetes. A shot of insulin helps for today, but tomorrow someone with diabetes needs another dose, and the next day, and the next.

My brother had his first psychotic episode when he was sixteen. Over the next thirty plus years, he got worse and worse, despite all the hospitalizations, consultations, and medications he was given. Sometimes manifestations of his schizophrenia lessened, and if he didn’t talk, you might think he was OK. And then he’d speak, and within ten words you were well aware there was something really wrong with this man. Yet our psychiatric hospitals refused to keep him in their care; he was assigned to live in a so-called adult home–a terrible place that was like a mental hospital without any medical personnel–and told to show up at some clinic for help if he thought he needed it (which he never thought he did). He wandered around on his own recognizance, often scaring people in the streets and stores he frequented. Others like him live with their families, who may be terrorized and not know what to do.

As I wrote in the book about trying to take care of him (Shot in the Head, a Sister’s Memoir, a Brother’s Struggle) families are simply not equipped to care for someone who is delusional, ranting and raving, refusing to bathe, perhaps, or bathing 25 times a day. My brother was afraid of the people he saw in the streets or in restaurants; he was sure that anyone who caught his gaze for more than a second was trying to steal his soul. He would shift his eyes constantly, so that no one could succeed. He lost all his teeth in his thirties, his hair varied between shaved (in which case he usually thought he’d been scalped) or long and dirty. His thrift store clothes seldom fit and were even less seldom washed. But hospitals would not keep him more than two or three days, as there is no public mechanism for them to be paid for more than that.

People like my brother–and this shooter– need long term followup care after a hospitalization such as Reinking’s last year, after he was caught trying to climb over the White House fence with an AR-15.  Luckily, my brother never developed any delusions about a need to kill a bunch of people. But I often cringe at incidents like the Waffle House or Parkland shootings, knowing that if he’d had access to an AR-15 when he was in one of his delusional states, I don’t know what would have happened.

What to do about it

My sister, Ilene Flannery Wells, has put together a concise list of what needs to be done to improve the  treatment of people with serious mental illness in the U. S. (which I have amplified with suggestions from another mental illness care advocate, Kathy Day)

If you are part of an advocacy group, or if you would like to learn more about this issue or would like someone to speak to your group, please contact me. See also the wonderful work being done by the Treatment Advocacy Center, and the educational efforts of the Mental Illness Policy Org.

10 ways to improve care for people with serious mental illnesses

1. Repeal the Medicaid IMD Exclusion, which prevents Medicaid funds from being used at “institutions for mental disease.” It is discriminatory and is behind much of our failure to care properly for people with SMI.

2. Modify commitment laws to include grave disability instead of dangerousness. Treat people before there’s a tragedy. Recognize that the sufferer’s own need for treatment is as valid as the danger he might pose to others. This is especially true for those who lack insight and therefore can’t/won’t seek treatment voluntarily.

3. Reform use of HIPAA  privacy laws so that valuable family care givers aren’t left out of treatment plans.

4. Implement nationally the RAISE program, an early intervention program with wrap around services that is now in use in some parts of the country.

5. Use Clozapine earlier in treatment rather than having a person wait until they’ve failed on other drugs…it works! (Not for everyone, but it isn’t used enough and lives are being ruined because if it.)

6. Use cognitive enhancement therapies as soon as possible. Get it covered by insurance. Most of the difficulties a long-term sufferer of serious mental illness encounters, even after psychosis has subsided, is due to cognitive damage. CET  may help them recover.

7. LEAP training for all medical and police personnel, to prevent tragedies when they are called to help.

8. Permanent supportive housing–not just once a week social worker visits–for those most seriously disabled from mental illness.

9. Use telehealth for those who can’t get in to see a psychiatrist. First line care providers should link families to this source of information and counseling.

10. Funding for more neuropsychiatrists! This could include straight out funding and/or school loan debt subsidies. Often families can’t find a therapist who can take on another patient.

Be aware. Tell your representative you want them to do something to fix this. Call your members of Congress. Click here: Link to find your representative’s contact info

We can all make a difference. Advocate. Lobby your state and federal representatives. If each of us does one little thing, all the little things will add up.

 

 

 

 

Following up on Parkland

If the past is any predictor of the future, the horror of the Parkland school shootings will now slowly recede into the sunset.

How do we get lawmakers to do what needs to be done to make America a country we are proud of and feel safe to live in?  Or, will Parkland–like New Town, Connecticut, Aurora, Colorado and all the others–continue to cause a few moments of discomfort when someone mentions it, but nothing changes?

Our United States Congress – people we elected to represent us, do nothing. They blather and bluster and argue, Russian bots put out false narratives, and the NRA lines their supporters’ campaign chests with money. And nothing changes. Well, we voted our Senators and Congressmen and state legislators into office. We can vote them out. Let’s call, write, and demonstrate that to earn our vote, we don’t just want them to “do something,” we want them to do the following:
Improve care for people with a serious mental illness. It’s not clear whether the Parkland shooter suffers from a mental illness like Schizophrenia or Bi-Polar Disorder, but he is certainly a very troubled young man. The Aurora, Colorado shooter definitely suffered from a mental illness. Following my experience of taking care of my mentally ill brother, Paul, who suffered with severe and persistent schizophrenia, I have identified the following ways we can improve care to not only improve their lives, but also save lives:

Reinstate federal and state funding for psychiatric hospitals. Most people with a serious mental illness can’t hold down a job and must be cared for using the Medicaid system. The Medicaid system excludes funding for care in an institution for mental disease (IMD). It will pay for emergency room care if someone is in serious psychosis–raving in the street, but only for a short hold. Congress can change that, eliminating the IMD exclusion and enforcing compliance with the Mental Illness Parity Act, which governs mental health coverage by private insurance companies. My brother cycled through treatment, release, decline, re-admittance, over and over again. Many people who are severely ill end up in jail, through no fault of their own. Wouldn’t it be better if they had #abedinstead in a medical facility or supportive housing?

Review and update the definition of when we may intervene when we see that someone in our community is mentally ill. If a person must have already proven themselves to be a danger to others before they may be committed, then by definition social workers and doctors can’t hold someone like the Parkland shooter until after they have already done something horrible. Both Federal and State lawmakers likely have to address this, and then fund and enforce it.

Revise HIPAA—the patient privacy laws—to allow families to play a greater role in their loved one’s care. Families can support the care process and be the early warning alarms, both to onset of problems and to worsening of them. Congress again.

Fund—and support in other ways—community out-patient mental health care and long term supportive housing. This includes anything from early intervention in schools and having more school counselors, to follow-up support for patients released from hospitals. Dr. Stephen Seager’s second documentary (link below) describes a system in practice in California that seems to be working post release. The main thing to remember is no one single thing will help the mentally ill homeless get off the streets and out of our prisons, except treatment and providing long term housing.

See also Paul’s Legacy Project  by my sister, Ilene Flannery Wells.

Secondly, Congress must act to reduce the availability of dangerous guns.  There is mental illness all around the globe, but no other first world country suffers from the gun violence we have, with our lax gun laws. Try googling “mass shooting statistics” or “gun violence.” It is  intuitively obvious that we don’t need to have so many guns floating around, so easy to buy, especially not semi-automatic assault rifles. Remember, President Reagan was shot, and he was surrounded by trained Secret Service men. Giving a gun to the good guys is not necessarily a recipe for safety.

Anyway, is owning so many guns really bringing people life satisfaction? When they have to worry if they will be shot while at church, or their children shot while in school? Or be shot while innocently sitting in a car at a stoplight, caught in the crossfire of a gang  gun battle? (which happened in NYC a couple of days ago)

Call, write, demonstrate. Let them know that we want better background checks, enforcement of laws already on the books, and sensible new gun laws, including restrictions on where guns may be sold, restrictions on who can buy, licensing, etc.

And let our elected officials know that accepting contributions from the NRA = our vote for their opponent.

Another way to reduce gun violence is by educating and supporting the people our economy is leaving behind. Automation is taking many of the jobs people without much education have performed over the years, leaving them feeling hopeless and angry.

We must fund our community colleges and trade schools to prepare people for real jobs of the future.
We must also develop and implement curricula to teach young men how to deal with setbacks in life and that their masculinity is not defined by shooting powerful guns. (See a recent article on toxic masculinity)

Our federal and our state legislators can be working on this. (Call, write, demonstrate.)

If you go through a list of the mass shootings, you can see that no one thing would have stopped every shooting. And no one thing will stop the shootings that take place in our streets on a daily basis. Focusing only on mental illness is not the answer. It will take a multi-pronged attack to slowly turn this around.

Wishful Thinking
In my essay “Wishful Thinking about Mental Illness” I discuss how our tendency to hope for the best has contributed to the perfect storm of gun availability as well as untreated mentally ill people going without care and getting access to those guns. I have also read some insightful opinion pieces by others—about male feelings of entitlement and how many men may be feeling left behind by our economy—that are a disturbing read. That trend, also, will not just right itself on its own. It will need attention.

We don’t like it when reality does not comply with our dreams; we tend to hold onto them, believing instances that don’t match our dreams were anomalies. But facts are facts. We need to face them and develop realistic strategies to fix things.

Over the years after my book about my brother was published in 2014, I participated with many family activists in many group efforts to support legislation to change the Federal approach to the care for Mental Illness and Substance Abuse. The 20th Century Cures Act was passed about a year ago, and some of the improvements are just starting to be felt. It was a start, and it took several years and the efforts of many, many people. And much more needs to be done.

My Family’s Story
When my brother was released from the New York State Psychiatric Hospital in Wingdale, New York, back in the early 1990’s, I thought the hospital administration had simply made a mistake. I thought that, unlike everyone else the hospital was releasing in the deinstitutionalization effort, my brother was still profoundly ill, too troubled for me to care for him in my home yet unable to take care of himself. I thought the authorities would see their error and move him to a facility where he could be cared for humanely. It didn’t need to be an enormous brick Dickensian hospital with bars on the windows—this was the 21st century, not the 19th—but he should not be on his own.
Over the next 20 years, I learned otherwise. Many of the mentally ill people released from hospitals—or, as the years passed, who were never admitted to hospitals—were just as confused and delusional as my brother. Our country had crossed through the looking glass; anyone who should have been helping to reopen appropriate facilities was, instead, reciting platitudes about self-directed care and consumers adhering to medication schedules, as if schizophrenia was like having high blood pressure. Take this little pill every day and you will be fine.
Many people do respond to treatment. But not the rest. And without adequate psychiatric care, hundreds of thousands of Americans are sentenced to a cruel cycle of crashing, ER visits, release, and decline, till returned to the ER – or to jail.

Finding Solutions That Fit
The first step in finding solutions is to face the truth about the problem. What possible solutions have we not yet tried? Sometimes the solutions are not perfect, but they’re the best we can do. The Iraqi Vet who can walk with her prosthetic leg is happy to have the prosthesis. She knows it is not the same as a real leg, but she is thankful for it. She doesn’t pretend she doesn’t need it. (And no one tells her to just hop.)

Care for people with mental illness is like that. Taking action on gun regulation is like that. Helping our fellow citizens who need job skills for the post robotics world is like that. We need to keep trying solutions. The problems will not just go away if we don’t think about them.
Follow up

For a personal account of my family experience, read my book, Shot in the Head, a Sister’s Memoir, a Brother’s Struggle.

D. J. Jaffe, in his book Insane Consequences: How the Mental Health Industry Fails the Mentally Ill, goes through the cold hard facts of America’s mental health disaster in a way everyone interested in public health policy should read. It also proposes some of the possible avenues of recourse that can be followed to take better care of the approximately 10 million people in the USA unfortunate enough to be afflicted with serious mental illnesses like schizophrenia or serious bi-polar disorder. So if you want to understand what happened to our mental health system, and what can be done about it, read Jaffe’s Insane Consequences.

Also consider reading Surviving Schizophrenia, by Dr. Fuller Torre, which is out in a new, up to date edition. It is the bible of knowledge about the American mental health care system.
And/or watch Dr. Stephen B. Seager’s two documentaries:
Shattered Families, the Collapse of the American Mental Health System, and
Roadmap, Making a Mental Health System That Actually Works

Our societal problems will not just go away on their own. Wishing won’t change anything.

Ireland 2006107

Wishful Thinking about Mental Illness

In the wake of the Parkland school shooting, we hear a lot of references to mental illness. But many accounts confuse mental health and personality disorders with serious, crippling mental illness. Because we are unclear about what constitutes serious mental illness and what is some other behavioral issue, our country is conflicted about what and how much to do for whom. So we do very little, and usually too late. I know; my brother suffered from schizophrenia, and I have seen how difficult it is to get care for those who are seriously ill.

D. J. Jaffe, in his book Insane Consequences: How the Mental Health Industry Fails the Mentally Ill, goes through the cold hard facts of America’s mental health disaster in a way everyone interested in public health policy should read. His own sister-in-law suffers from a mental illness, and he has experienced first hand the insane maze of ineffectual systems that our country has amassed in the past 60 or 70 years that do not do what we want them to do. They don’t help us care for our mentally ill brethren the way that science and social programs could be doing it. And every year it gets worse. Mr. Jaffe points out where it is all going wrong and some ways it might be improved. It is an impressive volume of information. He gives us many facts we don’t really want to hear, but need to.

Wishful Thinking

There is an overwhelming desire in the American public to believe that any obstacle can be overcome, that with enough grit and determination, each of us is capable of vanquishing demons. We applaud wounded Iraqi vets and victims of the Boston Marathon pressure cooker bombing as they struggle to manage their new prosthetic legs. We hold up images of the amazing handicapped athletes at the Paralympic Games and say, “See? Anything is possible. You can do anything, no matter what life has thrown your way.”
This wishful thinking fuels the supporters of the NRA to believe that an armed English teacher can fight off a determined mass shooter with an assault rifle. They want to believe that a series of interlocking and complex regulations involving fifty states as well as federal agencies regarding background checks, will combine with vigilant and well funded social workers and local police (whose usual duties involve chasing shoplifters and ticketing speeders) to stop the next angry would-be shooter. Not to mention arming teachers. They want to believe that something can be done that will stop this horrible epidemic of shootings and still allow them to keep easy access to firearms. In reality, even people as mentally ill as my brother are seldom admitted to hospitals except for 48 or 72 hour holds. And people as ill as my brother would likely never have the logical planning ability to plan an attack such as those we’ve seen at schools. In the meantime, people dealing with anger issues or other behavioral issues that seem to drive many of these shooters would seldom be caught by existing background checks.
It is wishful thinking that also fuels the so-called recovery movement in mental health circles, a movement that holds that anyone, even the most severely psychotic individuals afflicted with schizophrenia, can recover, given the right cocktail of medications, special diet, yoga for stress relief, faith in God, and/or the latest computer training program. Close all the psychiatric hospitals, they say. Perhaps hearing voices is simply another way to experience the world. Perhaps people like living in filth under highway overpasses and on subway grates in the dead of winter. They are entitled to live as they want, to have the freedom to follow their own dreams. Most memoirs or other personal narratives I have found about dealing with a mentally ill family member reinforce the recovery/anything is possible belief system. They were stories written about the lucky few who did recover; this is what we all want to believe will happen. Unfortunately, that result is achieved by very few.
We don’t like it when reality does not comply with our dreams.

My Family’s Story

When my brother was released from the New York State Psychiatric Hospital in Wingdale, New York, back in the early 1990’s, I thought the hospital administration had simply made a mistake. I thought that, unlike everyone else the hospital was releasing in the deinstitutionalization effort, my brother was still profoundly ill, too troubled for me to care for him in my home (he alternately thought he was James Bond or a recently scalped Mohican Indian, and had threatened to rape my daughter) yet unable to take care of himself. Surely the authorities would see their error and move him to a facility where he could be cared for humanely. It certainly didn’t need to be an enormous brick Dickensian hospital with bars on the windows—this was the 21st century, not the 19th—but he should not be on his own.
Over the next 20 years, I learned otherwise. Many of the mentally ill people released from hospitals—or, as the years passed, who were never admitted to hospitals—were just as confused and delusional as my brother. Our country had crossed through the looking glass; anyone who should have been helping to reopen appropriate facilities was, instead, reciting platitudes about self-directed care and consumers adhering to medication schedules as if schizophrenia was like having high blood pressure. Take this little pill every day and you will be fine.
Many people do respond to medication, but only if first — they actually get treatment,  and second– also with a great deal of community support. Perhaps 50% of people diagnosed with a serious mental illness can achieve a modicum of recovery this way. But not the rest. And without adequate psychiatric care, hundreds of thousands of Americans are sentenced to a cruel cycle of crashing, ER visits, release, and decline, till returned to the ER – or to jail.

But how do we relate to these cold statistics? Clinicians and researchers can recite statistics and probabilities all they want. The problems families like mine face are personal. It is personal when your brother is released from the hospital and you find him hours later in the bathroom, blood all over the place, trying to cut the radio out of that spot in his head just behind his ear. It is personal when a loved one cannot care for him or herself, and no one will help, and when you fear what they might do next.

So if not quite anything is possible; what should we do?
With knowledge, such as that compiled in Mr. Jaffe’s book, we can approach an approximation of that mythical anything if we build the right mix of that knowledge and humane care into our mental health policies. And the first step in finding the right care is to face the truth about what is possible and how to achieve it. The Iraqi Vet who can walk with her prosthetic leg is happy to have the prosthesis. She knows it is not the same as a real leg, but she is thankful for it. She doesn’t pretend she doesn’t need it. (And no one tells her to just hop.)Care for people with mental illness is like that. With the right mix of medicine and supervision, many more of the people currently suffering might have a much better life. And for the most seriously ill, comfortable supervised long term housing would make their lives much, much better.

Follow up
Mr. Jaffe’s book goes through many of the obstacles and wrong turns and some of the possible avenues of recourse, that can be followed to take better care of the approximately 10 million people in the USA unfortunate enough to be afflicted with serious mental illnesses like schizophrenia or serious bi-polar disorder. So if you want to understand what happened to our mental health system, and what can be done about it, read Jaffe’s Insane Consequences.
For a personal account of my family experience, read my book, Shot in the Head, a Sister’s Memoir, a Brother’s Struggle.
Also consider reading Surviving Schizophrenia, by Dr. Fuller Torre, which is out in a new, up to date edition. It is the bible of knowledge about the American mental health care system.
And/or watch Dr. Stephen B. Seager’s two documentaries:
Shattered Families, the Collapse of the American Mental Health System, and
Roadmap, Making a Mental Health System That Actually Works

Learn more about the health problem afflicting 10 million Americans that no one want to deal with. It will not just go away on its own. And wishing won’t make it go away. We have to face it, with a mix of remedies tailored to the type and severity of illness.

 

We’re Better than This -II

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I watch the hatred and small mindedness of the Republican nominee in disbelief. Blocking all Muslims?  Really? This candidate is the best the Republican party can come up with? And our legislators cannot pass much-needed gun controls, out of fear of losing funding for their next election?

I am suddenly drawn back to the time when we baby boomers were protesting the treatment of Negroes (positive word used at the time) in the South, or the Vietnamese War, or Dow chemicals and the use of Nepalm in that war, or even the military-industrial complex in general – it seemed to rule everything.  Back when we opted out of business schools and studied art. Back when we said there’s a better way to live.  No more war.  Make love not war.  The orange haired freak who I will not name is heir to these same possibilities. But he and his followers seem not to have listened. What happened?

In the eyes of many of us growing up in the fifties and sixties, our parents were not the greatest generation – Tom Brokaw hadn’t written his book yet.  They had fought or sacrificed to save all for the boys at the front, true. And Hitler was a monster. Also true.  I’m glad he was finally stopped.  But why did no one stop him much earlier?

My parents believed in the just war.  My generation believed no war was justified.

After WWII the men came home, tossed the women out of their jobs and took the jobs for themselves, and proceeded to turn into Mad Men.  My generation looked at what we had inherited and said NO.  No to war.  And we didn’t want gender specific rules for how to behave or how to earn a living, or telling us who to love. With the pill, we women were free to experiment, just like the guys.  And we all wanted to do something meaningful, something to make the world a better place.  But then we got married and everyone fell into traditional roles like taking their assigned seats in a classroom.  Men called watching their own children “babysitting.”  Men our fathers’ ages did their best to impose the old rules, and largely succeeded.

But women fought back. Helped by new legislation, many women like me managed achievements undreamed of in the nineteen fifties.  Some of us clung to our 60’s ideal notions longer than others. Gays stood up for their rights, and the LGBT rainbow flag became part of our consciousness.

Gradually, though, these efforts toward equal treatment got taken for granted. And now we have throw-back macho-loving wildcatters blaming anyone except the country’s incredible proliferation of guns for our endless mass shootings.  And we have really scary fundamentalists dreaming up rules to limit women’s reproductive freedom and intimating that the gay people in that nightclub deserved what they got.  At least 35 U.S. cities are reporting a startling rise in murders or other violent crimes this year, ending decades of declines in most cases, but the orange-haired candidate is either silent on it or blame it on immigrants. And he is supported by many.

When will people learn? They attack women’s rights.  They say we can’t afford to help our teens get a better education or help poor children have better health, or do something meaningful about the plight of people with serious mental illness. They have proposed no way to get at the root causes of our young men’s fascination with violence. But there’s always enough money for another war. They allow billionaires to run roughshod over us all.

There is nothing wrong with earning a living, but there is something wrong when the short-term profit motive drives everything we do, when we lose charity and caring, when pursuit of the almighty buck gives a person license to try to wipe out the civil rights legislation and progress of the past fifty years, when desire for power and self-aggrandizement trumps humanity.

We’re better than this.

We can be so much better than this.