Not Thinking About Schizophrenia

Nobody really knows why the universe exists or how it came into being. But people through the ages have felt obliged to come up with theories and came to call them truth.

Nobody knows if our belated efforts to slow global warming will make any difference in the long run, but great efforts are made in the name of science

Nobody knows what will happen to our spirits at death. But people through the ages have devised theories and called them revelation.

Nobody knows – – so many things.

Do you know how a squirrel can manage to leap six feet through the air to get to the top of my bird feeder?

Or why mothers and daughters argue and so often carry resentment like a badge?

Or how to face caring for a parent or sibling who is slowly dying?

Do you know why 1.1% of the world’s population develops schizophrenia? Or why my little brother Paul–he, of the ten of us siblings–was one of the unlucky ones? Or why as a society we have abandoned people like Paul? Why is out of sight, out of mind, unless it’s your brother? Why are our mentally ill brothers and sisters dying in the streets? Why aren’t we doing more?

Nobody knows.

What I do know is that it is easier to try to figure out how to reduce carbon emissions or to theorize how the Big Bang may have reverberated through space, than it is to search for answers to what drives the human psyche. That may forever be what nobody knows.

 

Mother’s Day

My younger brother Paul suffered from severe and treatment-resistant schizophrenia. He developed the illness at age 16, in 1976, and never really recovered. He was frequently delusional and paranoid, and sometimes threatened violence. But our mother never gave up on him, always believing that one day soon, a cure would be found. It was our job to keep him safe until then.

At the onset of Paul’s illness, psychologists still tossed around terms that blamed the mother in some way for the condition. The terms “smothering mothering” and the “schizophrenic mother” were bandied about in pseudo-scientific literature. At other times mental illness was often blamed on repressed homosexuality or an Oedipal complex – Freudian beliefs still popular in some circles. And in many people’s heads, it was linked to the sufferer’s own sinful ways or to some God-assigned stigma. Mother knew this was nonsense – or tried to believe it was nonsense, and carried on, determined to do her best for her son.

Paul’s care was often hampered by lack of funding and accessibility to good care. Because of the many false beliefs in the general population, insurance companies were permitted to set lower lifetime limits for expenditures on medical care for mental illness and higher co-pays – often 50%. This is how my parents reached the point that they could no longer afford to care for Paul themselves. After about 18 months, after mortgaging the house to the hilt to pay hospital and doctor bills, they were forced to sign him over to be a ward of the state, and he was committed to a state psychiatric hospital. But no sooner was Paul admitted, than hospitals began to close. Little by little, the less severely ill were released.

The nineteen seventies and eighties saw a public zeal to release all mental patients from mental hospitals. I had been living in Minnesota when Paul became ill, but in 1981, I moved back to New York State to be closer to my family after a divorce, and I began to become involved in his care. I found that New York had already begun to empty and close all the state mental hospitals. This wasn’t unique to New York; it was a national trend. Beginning as a trickle, the great emptying had become a torrent by the mid-1980s. The United States had 340 public psychiatric beds available per 100,000 people in 1955; by 2005 there were only 17 beds per 100,000. And hospitals still continue to close every year, across the country. Much of this shrinkage in capacity at psychiatric hospitals during these years was a result, direct or indirect, of the introduction in 1954 of chlorpromazine (Thorazine), the first effective antipsychotic, which made it possible, for the first time, to control the symptoms of schizophrenia and thus discharge some patients. Paul was on Thorazine and similar medications for many years.

By the mid-1980s, the doctors treating Paul were well aware that a neurological component was primary to the disease; it was not a behavioral issue. Doctors were also well aware that not everyone benefitted from the new medications; some still needed long term, supportive care. But despite the rapidly growing body of knowledge that pointed clearly to biological, neurological causes, old stereotypes persisted, and they took form in efforts to release all patients from mental hospitals.

During this time, well-intentioned do-gooders, as my father called them, had sued New York State to close down the huge state institutions, made infamous by investigative reporting on places like Willowbrook, on Long Island, where developmentally disabled people had been mistreated. This movement was intensified by an aspect of Medicaid: its reimbursement schedules were written to withhold payments to large mental institutions, accelerating the closures nationwide. New laws called for smaller, more humane, community-based residential facilities for patients needing long term care. One by one the old hospitals closed; a few homes were built for people with Downs Syndrome and the like, but no one wanted crazy people in their neighborhood. Almost no smaller facilities were built for people like Paul.

The shrinking population of those suffering from the most serious mental illnesses rattled around on a few floors of hulking, ancient hospitals, many of them built a hundred years before as sanitariums for people with TB. Paul’s hospital was one of them, with bars on the windows and double sets of locked doors. We felt bad for him, but we knew he would be unable to care for himself on his own. The former patients who were released often ended up in slumlord- operated single room occupancy buildings (SRO’s) and adult homes, where they were still confused and unable to care for themselves and now had no supervision. The streets of New York and other big cities suddenly were full of mentally ill homeless people wandering around, sleeping in doorways, dying of exposure or getting arrested. Eventually, our prisons filled with mentally ill people who, only twenty-five or thirty years before, would have been humanely cared for in an institution—people who by law should have been cared for in new, smaller, community care facilities.

Every time there was a story in the papers or on TV about one of them, Mother cringed. A mentally ill man pushes someone off a subway platform. A mentally ill homeless person wanders the streets of New York City pestering passers-by, is killed in a bar fight, is found frozen on the streets…

Mother would steel her mouth into a thin line. This will not happen to my son. I couldn’t stop him from going mad, but I can try to make his life as good as possible, within its limits. She volunteered at the hospital library. She stopped by the ward on non-visiting days. My son is not alone, her presence said. I am watching. She joined NAMI, the National Alliance on Mental Illness, a new organization which advocated for both patients and their families. Her focus at that time was always on making the remaining hospitals comfortable for Paul. We couldn’t imagine that he would ever be released.

Determined to keep her son safe, Mother stayed tuned in to public hearings and release meetings – sort of like parole hearings – at the hospital. She showed up for all of them, ready to insist that Paul stay hospitalized. “You can’t just release him. Transfer him to a nicer, smaller place, yes. But I can’t handle him. He’ll set fire to the house. He’ll get into bar fights. He’ll hurt someone,” she told anyone who would listen. She wrote letters to our Congressman and State Assemblyman.

Sunday after Sunday, Mother made the one-hour, forty-five mile, drive up Routes 684 and 22, from White Plains to Harlem Valley Psychiatric Center so often, she could recite every gas station, restaurant, fitness center, farm, antique shop, motel, bank, diner, lumber supply store, army surplus store, church, fast food joint, office park, bakery, school, ice cream stand, car dealership, nursery, and garden supply store along the two-lane state road. My house was about halfway between Paul’s hospital and Mother’s home in White Plains. She would visit Paul in the early afternoon, then stop off at my house for dinner. Her Sunday visits to Paul and me became a ritual.

Mother also made sure we included Paul at all our family gatherings, often making the long drive to pick Paul up for Christmas and Thanksgiving dinner herself, and ferrying him to my house or my sister’s house for the afternoon. For his birthday she made cupcakes for the ward. He’s your brother, she would say to us. We can’t abandon him. He needs us.

Our mother died in 1993—too young, at only 71, leaving advocacy for Paul in the hands of his siblings. I  have often thought that if she had taken half as good care of herself as she tried to do for her son, doctors might have dealt with her cardiac condition before her sudden death. I’m ashamed to say we were not as diligent about Paul’s care as she had been; within a year after she died, Paul was released—delusional, confused, and unable to care for himself. We siblings tried to advocate for him with social services agencies, etc., but what he needed was supervised care. It didn’t need to be at the hulking psychiatric hospital, perhaps, but there were no smaller, community-based long term care facilities for him. And so began his downward spiral—group home to ER to group home. We siblings did what we could for him, tried to make sure he got medical care, and stood by him when he developed cancer. Unfortunately, he died at age 48, in 2008. Eleven years later, we still advocate for better care and speak out in his memory.

And on Mother’s Day, I remember my mother and thank her for not only her unstinting efforts to care for her son, but also for teaching her children our responsibility to care for those who need help.

Afterword

When Medicaid was passed into law in 1965, it took on from the states about 50% of the burden of caring for indigent people like Paul, who until this time had been housed in institutions funded completely by the states. But a little known part of Medicaid was something known as the “IMD exclusion.” Medicaid will make no payments to any institution for mental disease, or “IMD.” An IMD is defined as any facility of more than 16 beds where more than 51% of its patients between the ages of 21 and 65 are being cared for by reason of severe mental illness. Nursing homes caring for elderly Alzheimer’s patients are not impacted, nor are institutions caring for young patients suffering from mental retardation or illnesses.

While the IMD exclusion may have been meant to ensure that mental patients were not warehoused in huge institutions, in practice it made it impossible economically for state facilities to care for the people most severely afflicted with diseases of the brain. Not only is a facility precluded from being reimbursed by Medicaid for the individual’s day-to-day care, but individual patients’ eligibility for Medicaid is canceled while they are inpatients in an IMD. Consequently, to receive treatment for medical disorders not related to their severe mental illness, they must be discharged from the IMD, have their Medicaid eligibility reinstated, be treated in a medical/surgical setting, and then be readmitted to the “IMD”  Not do-able.

The number of people still needing hospitalization did not shrink as much as the hospitals did. Many people, like my brother, were not helped significantly by the new medications. They remained delusional and unable to take care of themselves, and often too prone to violence to permit their care at home.  Experts in 2016 estimated the U. S. still needs about 50 beds per 100,000 people to care for those suffering from the most severe forms of mental illness. With a population of 310 million, that means the United States needs 155,000 psychiatric beds but had only 53,000. Those seriously ill people have no residential setting to care for them. Many of them have ended up in prison.

In 2014, as part of the implementation of the Affordable Care Act (ACA, or Obamacare), demonstration projects in 15 states temporarily lifted some of the IMD restrictions. Under new leadership at SAMHSA, the Substance Abuse and Mental Health Services Administration, more temporary stays are underway. Hopefully, the relaxation will help demonstrate that our current system of non-care, pretending that people like my brother Paul don’t exist, makes no sense. What needs to happen is a complete elimination of this arbitrary exclusion.

Who knows? Perhaps one day soon, a cure will be found. It is our job to try to care for our loved ones until then.

Further information regarding the status of Federal legislation and treatment standards for serious psychiatric illnesses may be found at  SAMHSA and The Center for disease control CDC

More information can be found at Mental Illness Policy Org. MIPO

To join the effort to advocate for better care for our mentally ill loved ones, visit the National Shattering the Silence Coalition website NSSC

Note: This essay draws from The Great Emptying, a chapter of my memoir about taking care of my brother, titled Shot in the Head, a Sister’s Memoir, a Brother’s Struggle.

Ten Things We can Do to Help People with a Serious Mental Illness

Here are ten things which could be done to get people with serious mental illnesses– like schizophrenia and serious bi-polar disorder– the care they need BEFORE they hurt themselves or others.

My brother suffered with schizophrenia for 32 years. He, like about a third of all people with that diagnosis, did not get better with existing treatment methods, and lived out a sort of half-life, cycling through hospitals and adult homes. The following steps could have made a big difference for him and our family, and could make a big difference for those still suffering with disease symptoms.

1. Repeal the Medicaid IMD Exclusion, which prevents Medicaid funds from being used at “institutions for mental disease.” This prevents mentally ill people from getting the inpatient care they need at psychiatric facilities. It is discriminatory and is behind much of our failure to care properly for people with SMI.  For more information on the IMD, please see the website of the Treatment Advocacy Center and/or the position statement on the IMD at the website of the National Shattering the Silence Coalition.

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. Treading that fine line between loose commitment laws and a person’s civil rights is sometimes difficult to manage in a broad law. In recent years, the laws have been interpreted so narrowly that even when someone is obviously disturbed, authorities don’t believe the person is dangerous enough to commit. People who are falling apart with the onset of serious mental disease are not committed, and we end up with many private tragedies, as well as the more publicized ones, like the shootings in Thousand Oaks, California or Parkland, Florida.

3. Reform use of HIPAA  privacy laws so that valuable family care givers aren’t left out of treatment plans. Parents are often expected to take in their dangerously ill adult child, yet are denied access to changing diagnoses or treatments.

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. For people diagnosed with schizophrenia, use Clozapine earlier in treatment rather than having a person wait until they’ve failed on other drugs…it works! The medication has been linked to a dangerous side effect, but that link has come under serious scrutiny. Again, as with HIPAA implementation and commitment laws, well-meaning restrictions on this medication cause it to be very much underutilized, and lives are being allowed to suffer when they could be greatly improved. My brother finally was treated with Clozapine and it did help him.

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. Municipalities should make sure that training such as that included in LEAP training is provided for all medical and police personnel, to prevent tragedies when they are called to help.

8. Follow up repeal or serious modification of the IMD exclusion, with permanent supportive housing–-not just once-a-week social worker visits–-for those most seriously disabled from mental illness, people like my brother.

9.  Make sure your school system has trained counselors and senior staff in how to recognize the signs of onset of schizophrenia and bi-polar disorder, and that they maintain a list of professional to refer parents to for help. The onset of these diseases is usually late adolescence, and educators are often in a position to help parents seek help and the student’s inclusion in programs such as the RAISE program, noted above.

10. Petition legislators to provide funding for education of 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. The shortage leads to care for the SMI being administered through well-meaning, but ill-equipped social workers, etc. 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.

Be aware. Tell your representative you want them to do something to fix this. Call your members of Congress. Congress has set aside a large pool of funding to help deal with the opioid crisis. Make sure they know we want them to work on improving the care of people with serious mental illness, as well. Click here: Link to find your representative’s contact info

Please note that this list  builds on one developed by my sister, Ilene Fannery Wells, and which is posted on her website, Paulslegacyproject.org. (Note: the legislation she was advocating for here, was passed and included in the 20th Centuries Cure Act passed in 2016.)

I have written about my family’s efforts to care for my brother. The book is called Shot in the Head, a Sister’s Memoir, a Brother’s Struggle.

 

What Survivors Do

Four years ago this past January, a close family member, a teenager, died of a heroin overdose. As you can imagine, the whole family was terribly upset. The boy’s parents were overcome with grief. We’re a large family, and we were all stunned. I knew that the boy had been dealing with an addiction issue, and that he had dropped out of high school; his parents didn’t know what to do with him. But I didn’t know much more that that. His parents had put on a brave face and said he was in this rehab or that rehab and they were hoping for the best. But their hopes were dashed when, less than a month after a year long – and very expensive – stay in a rehab place, he OD’d. (I’ve written about that loss in Aftermath.)

The story is way too common. According the the Center for Disease Control, opioids were involved in 42,249 deaths in 2016; opioid overdose deaths were five times higher in 2016 than 1999. By 2018, deaths rose to over 70,000, almost double 2016. Where does it end?!  And every one of these drug-related deaths left behind many more grieving friends and family. People suffering from addiction slip in and out of rehab centers and detox programs, but they very often relapse. Think of someone like Amy Winehouse: such a promising performer; she entered several treatment programs but didn’t make it. Is this the best our medical establishment can do?

A couple of months ago, I was speaking with a representative of my college alma mater—we’ll call him Allen—who was trying to convince me to donate some money to the university.  Allen knew of the book I wrote a few years ago about caring for my brother, who suffered from severe and treatment resistant schizophrenia. We talked for a while about the advocacy work I’ve been doing to try to improve care for people with serious mental illnesses. And then I described my new poetry collection, Aftermath, which was written in the months after my young relative’s overdose death.  

Allen nodded his head a few times as I spoke, then said that I was the first person he’d met who actually knew anyone who was mentally ill or had died from a drug overdoseHe’d read about the “opioid epidemic” in the newspaper and on line. At our country’s all-too-frequent mass shootings, or in stories about homeless people, there is often a reference to people being mentally ill. But he said he’d never been directly touched by it, himself. Our conversation drifted from one topic to the next, as conversations often do. And then, out of the blue, Allen said, “You know, a cousin of mine committed suicide a couple of years ago. And we had an uncle who suffered from terrible depression and was in and out of the hospital.”  

In half an hour he went from being “not directly touched” to describing two close family members who suffered from mental illness. 

It is likely that in his universe of friends and family there is also someone with an addiction problem. I don’t wish it on him, or anyone, but statistically, it is likely.  Still, people don’t talk about it. Addiction and mental illness are judged as if they are the result of weakness–a lack of willpower or simply a behavioral issue that victims can work their way out of if they would just try harder. And so people don’t talk about it; they are ashamed to talk about it. Only when my conversation had normalized the topic did Allen remember the uncle and cousin. We don’t like to even think about it.

Where we are at the federal level

SAMHSA – the Substance Abuse & Mental Health Services Administration—the government agency assigned to deal with these problems—is overwhelmed and underfunded. And one of the persistent problems they face is limiting their funding to evidence-based practices for treatment.  Elinore F. McCance-Katz, MD, Ph.D., the new Assistant Secretary for Mental Health and Substance Use, issued a statement in January of 2018 regarding the National Registry of Evidence-based Programs and Practices (NREPP) and SAMHSA’s new approach to implementation of evidence-based practices (EBPs). 

She said that SAMHSA has used the NREPP since 1997 to help them decide what to fund. For the majority of its existence, NREPP vetted practices and programs submitted by outside developers – resulting in a skewed presentation of evidence-based interventions which did not address the spectrum of needs of those living with serious mental illness and substance use disorders. They presented programs they knew how to run, rather than the programs people might need more. These needs include screening, evaluation, diagnosis, treatment, psychotherapies, psychosocial supports and recovery services in the community. In other words, programs previously defined as successful don’t, on further study, really get to the heart of the problems. So what is a successful program? 

Defining “Successful Rehab”

I’ll let professionals analyze the entire spectrum of community needs. But I think I share my definition of a successful drug rehab program with most people. A successful program would be one which treats anyone in the community who needs it. One where at least three-quarters of the participants complete the program, and where 80% or 90% of those who complete it are still drug free five years later. Sounds reasonable, don’t you think? But my young relative who relapsed, to deadly effect, was not an outlier. What happened to him is the rule, not the exception.

Treatment results are not impressive. According to one online site, (which I picked because they seem proud of their efforts)

  • Inpatient treatment (combining medication and counseling with an average stay of 31 days) costs $3,200 on average.*** 73% of addicts complete treatment and 21% (of the ones who complete the course) remain sober after five years.
  • Residential treatment (average stay 71 days) costs $3,100 on average. 51% of addicts complete treatment and 21% remain sober after five years.
  • Detox—which is medically assisted, and can go on for and average of  227 days—costs $2,200 on average. 33% of addicts complete treatment and 17% remain sober after five years.
  • Outpatient drug-free treatments—lasting 164 days— cost $1,200 on average.*** 43% of addicts complete treatment and 18% ( of the 43%) remain sober after five years.

     (***I’m not sure what these costs refer to: weeks? the complete program?)

These statistics, as weak as they are on their face, are even worse than they first appear. For example, 21% of 73% is 15%. That means that only 15% of people who start an inpatient treatment program are still clean after five years.  And the stats for detox are much worse: 17% of 33% is 5.6%. In other words, under 6% of people who go into detox are clean five years later. And so on. How can anyone consider this a successful program? And is it the program itself or follow up care in the community? What is going wrong?

In McCance-Katz’s statement, after some analysis she concluded,  “We know that the majority of behavioral health programs still do not use evidence-based practices: one indicator being the lack of medication-assisted treatment, the accepted, life-saving standard of care for opioid use disorder, in specialty substance use disorder programs nationwide.”  What I read her to be saying is that people around the country are paying for, and placing their hopes on, programs that often do not use the practices that actually work. This has to change.

Of course, we can all wish that the drug companies would be more responsible and that criminal drug cartels didn’t exist.  In the meantime, we can put pressure on the medical research establishment to figure out why some people seem to become addicted so easily, while others don’t. We can also ask those researchers to identify treatments that have been proven to actually work. And we can help our addicted loved ones find a treatment program that has been proven to work better than most. 

To do that, we have to talk about it. We have to be willing to face up to the problems we see around us. If we knew a relative or friend had cancer, we wouldn’t hesitate to mention a reputable treatment center for the disease. We can do the same for substance abuse and brain disorders.

And we can demand that our lawmakers fund research to discover causes and better approaches to cures. We voted for them. Our taxes pay their salaries. Let’s demand that they support Dr. McCance-Katz’s efforts to find evidence-based practices that work for the big problems. Sometimes those of us who have already lost our loved one have a valuable perspective on what works and what doesn’t. Those who have seen someone turn their life around also have learned much from the process. Let us all speak up.

Follow Up 

This is the official SAMHSA website that will direct you to a treatment program that at least has a chance of working:  https://www.samhsa.gov/find-help

And this is SAMHSA’s National Helpline

1-800-662-HELP (4357)
TTY: 1-800-487-4889

Website: www.samhsa.gov/find-help/national-helpline

Also known as the Treatment Referral Routing Service, this Helpline provides 24-hour free and confidential treatment referral and information about mental and/or substance use disorders, prevention, and recovery in English and Spanish.

The Center for Disease Control also has several valuable links about substance abuse disorder and an outline for ways for reduce overdose deaths.

 

For more information on my book, Aftermath, click here.

 

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.