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.

Accidental Advocate

Accidental advocate

Four years ago, I published a memoir about taking care of my Schizophrenic brother. When I was working on the book (Shot in the Head, a Sister’s Memoir, a Brother’s Struggle), I did research into national statistics on mental illness, and I was horrified. My family had always thought the poor care my brother received was a horrible mistake. We thought that his social workers must not have realized that the modern psychotropic medications—reputed to virtually cure psychosis—didn’t really help him. They must not have realized that he needed to live in sheltered, supervised housing, not be expected to take care of himself. But, to the contrary, we found this abandonment of people with serious mental illnesses (SMI) to be a nationwide scourge. He was one of hundreds of thousands, even millions of people suffering from serious mental illness, abandoned by the country’s mental health system, destined to a miserable half life of delusions, homelessness and victimization. More than one percent of our population suffers from schizophrenia (that’s over 3 million people), and more than half of them need the kind of care my brother needed. And they’re not getting it.

Most people with a serious mental illness cannot keep a job. Their families often try their best to help them, but they simply can’t handle them when they’re as difficult as my brother. They depend on social services, notably Medicaid, for health care coverage.  Medicaid does a decent job of  providing medical care to the least fortunate of our fellow citizens if they suffer from diabetes or bronchitis, cancer or eye infections. Medicaid pays for their care for physical ailments, even if it involves a multi-week stay in a hospital. But Medicaid funds, from its inception in the mid 1960’s, were barred from caring for people with a psychiatric illness on an inpatient basis. The legislation prohibits its use in the treatment of adults (persons between the ages of 21 and 64) in facilities having more than 16 beds for the specific treatment of mental disorders, a.k.a. institutions for mental disease (IMD). It also effectively prevents the management of long term supervised housing for people whose mental disabilities prevent them from living independently.

Congress included coverage for Alzheimer’s disease and intellectual disabilities in Medicaid legislation; many of us have a grandmother or other senior relative being cared for in a nursing home because of their dementia, the care being paid for by Medicaid. But when the Medicaid legislation was passed there was a concern that if IMD’s were included in the Medicaid program, the states would continue to warehouse people in hospitals instead of providing services in the community, which was their goal. That reasoning has not lived up to the promise, however. Without funding, most IMD’s have closed. Yet communities have failed to provide adequate comprehensive community-based services to take their place, leaving those with serious mental illnesses without adequate care.  No institutions are helping families care for their seriously mentally ill loved ones anymore. Those who are ill are ferried into ERs, then released with a bottle of pills and no real help—if they are lucky. In many cases, they end up in prison, or shot by police called to help the family when their loved one is acting out.

My brother Paul, luckily, never ended up in jail or shot by police, but he was given desultory care, at best.  He was too dangerous for us to let him live at home with us, yet the “adult homes” he was placed in were inadequate for the severity of his symptoms.

I determined that this had to change. I joined up with organizations of family members like me who were lobbying Washington DC for improved care practices. Organizations like the Treatment Advocacy Center, and advocates from Baltimore, Sacramento & Los Angeles, New Orleans—all over the United States. And things have begun to change. With the implementation of the 20th Century Cures Act last year, the Substance Abuse and Mental Health Agency (SAMHSA) has a new, cabinet level head of the subagency that deals with serious mental illness, and they are revamping its activities to make sure those who are most seriously ill get the treatment they need. I now serve on the communications committee of the National Shattering the Silence Coalition, an organization of activist like my self who are fighting to have the IMD exclusion to Medicaid repealed.

There is much more work to be done.  

And now I have added another cause to my advocacy, another response to my writing.

When my teenaged nephew died of a heroin overdose, I had no intention of getting involved in any further advocacy work. I wrote the poetry which eventually became my chapbook, Aftermath, from my sense of sorrow, not with any didactic interests. I found I had to slow down and let the grief sink in. Everything I saw around me was tinged with loss. I had to make sense of this, and of the changed circumstances of my family.  When more sorrows arose—the deaths of two people close to me—it compounded my grief. The collection became a kind of meditation on loss and a search for renewal. 

Yet again, I have found myself immersed in advocacy. I am appalled at the greed and ineptitude that have contributed to the opioid crisis. I am mystified at how little current treatment standards do to help people with substance use disorder (SUD) overcome their addiction and move on to a productive life.  I now speak out for tighter regulation to hold rehab centers accountable for the efficacy of their practices, including evidence- based practices for rehab treatment.  And I encourage efforts to hold accountable the drug companies whose aggressive marketing of drugs like OxyContin contributed to the crisis.

The news is filled with articles about lives lost to opiates. West Virginia and Kentucky may be the epicenter of the plague, but no town in the U. S. has escaped the scourge.  About 75,000 people died of an opiate overdose in the past year. We also, all too often, are horrified to read about yet another mass shooting, many of them involving a shooter with untreated mental illness.  And for every life lost, an entire family suffers.

Congress appears to have come to the realization that the IMD exclusion is preventing the funding of care for people trying to overcome their SUD, as well as those with a SMI.  So people who cannot afford inpatient care try to deal with their issues using outpatient services. There is legislation in the works that may, at least temporarily, allow Medicaid funds to pay for up to a month of in-patient treatment. The legislation is incomplete, however, as it does not take into account how many people with SUD are also suffering from a severe mental illness. Both conditions need inpatient medical care, using verified treatment methods and holding the treatment facility accountable for statistically positive results.

I speak out whatever chance I get about the need for better treatment of both SUD and SMI. (I’m becoming a master at acronyms!) All kidding aside, I am reminded of the parable of the Good Samaritan, who found a man from another town beaten and robbed in a ditch. He took the man home and nursed him back to health. Growing up, we were taught that we must care for people who suffer, help them back on their feet. I guess the lessons sunk in.

One of my poems in Aftermath includes the lines:

Even then you and I sensed this could happen only once. Our lives/ 

would now have a before and after.

Caring for my brother was an experience like that. Losing my nephew was an experience like that.  Sometimes we go through a difficult time in our life and we are changed. In my case, I became – quite by accident – an advocate. 

***

Katherine Flannery Dering is a writer and mental health advocate and serves on the communications committee of the Shattering the Silence Coalition, (http://www.nationalshatteringsilencecoalition.org) an organization that seeks to highlight the need for better care for the millions of people suffering from serious brain disorders. She believes words can effect change, and she hopes her words help in this effort. She also blogs on behalf of sensible controls over illegal opiates and results-proven rehab programs.

Her chapbook, Aftermath, began during the weeks following the death of her teenage nephew from a drug overdose. During the ensuing months, two other close friends died, as well. This collection is, in part, reflections on the question, How do I make sense of my life in the face of death’s inevitability? How do any of us?  She empathizes with other victims of the country’s opioid epidemic and encourages family survivors to speak out for better, evidenced-based treatment. These poems delve into the sorrow of losing someone to drug addiction and asks the question, where do I go from here?

Ms. Dering has lived in Westchester county, New York for over thirty years. Currently, she serves on the executive committee of the Katonah Poetry Series, is on the board of the local chapter of the League of Women Voters, and is an active member of the Pound Ridge Authors Society.  She blogs at www.deringkatherine.wordpress.com.  Visit her website at www.katherineflannerydering.com.  Her chapbook, Aftermath, is available at  https://www.finishinglinepress.com/product/aftermath-by-katherine-flannery-dering/   and at Amazon. Her memoir, Shot in the Head, A Sister’s Memoir, a Brother’s Struggle is available at Amazon.

Schizophrenia and family caregiving   

A Book Club Discussion Guide to Shot in the Head, a Sister’s Memoir, a Brother’s Struggle

This story can impact the reader at several levels. However you approach it – as personal memoir, curiosity about the reality of schizophrenia, or as a simple story of how a family came together to care for a loved one with a serious mental illness,  I hope these questions will help to stimulate some good discussions.

1.    Some of the scenes in Shot in the Head take place more than fifty years ago.  Others involve emotionally-charged situations.  The author states that the book’s dialogue and sequence of events are her “best efforts to present what really took place.” How is its accuracy important to your experience of the book?  What do you expect when you read a book classified  as memoir?

2.    The author describes her lack of involvement in Paul’s care in the first few years of his hospitalization.  What factors contributed to that distance?  How does she change over the course of Paul’s illness?

3.   As much as this book is about Paul and Katherine, it is also about the whole family, especially the other siblings – Monica, Ilene, Patrick, Sheila, etc.  Did you identify with any of the siblings? Which one?  How did ​their relationship with their brother change during the course of his illness?  Where do you see the changes?

4.     Paul’s care changes dramatically over his lifetime.  How do Federal and State legislation impact his care?  What role do you think public agencies, the medical community and insurance companies should play in the care of someone like Paul?  What role should be played by the family – parents, siblings, children? What help do family caregivers need?

5.    How is the care received by people who suffer from brain diseases different from the care received by people who suffer from malfunctions of other body organs such as the kidneys, heart or pancreas?  What factors have led to these differences?  Do you think a person with serious mental illness should be forced to accept treatment? 

6.    Society also deals with brain disease differently than other types of illness.  For example, if your neighbor has breast cancer or a heart attack, you bake the family a cake or offer to help get the patient to medical appointments.  How do you react if you find out a neighbor has bi-polar disorder or schizophrenia?  Why?  How can this change?  

7.    Which of the stories about Paul- things he did, things that happened to him – touched you the most?  

8.    When Paul begins to suffer pulmonary problems, he is diagnosed first with pneumonia.  How do you think his cognitive impairment impacted the level of care he received?  How did it impact his care from the oncologist?

9.    How did his care change when his sisters had him transferred to a nursing home?  How did his behavior change?  Why do you think it changed?

10.    The author uses several genres to put forward her story – narrative, emails, poetry, pictures.  How do these different genres impact the reader’s enjoyment and understanding of the issues and the characters?

11.    Do you believe Paul is better or worse off when he is released from the state hospital?  Give examples of how his life changes.  How do we balance the trade-offs between a person’s desire for freedom and the knowledge of the medical establishment that he or she needs supervision?  Where else in our lives do we see similar trade-offs?

12.  Has your perception of mental illness changed since reading Shot in the Head?  If so, how?

 

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.

 

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.