HATE IS NOT A MENTAL ILLNESS by Pete Earley

I’m reposting Pete Earley’s blog with his permission.

(8-8-19) I felt compelled to interrupt my vacation and write an Op Ed for The Washington Post about President Trump’s recent comments about mental illness and mass homicides.

No, Mr. President. Hate is not a mental illness.

Pete Earley is the parent designate on the Interdepartmental Serious Mental Illness Coordinating Committee, created by Congress. He is the author of “Crazy: A Father’s Search Through America’s Mental Health Madness.”

“Mental illness and hatred pull the trigger, not the gun,” President Trump announced when he condemned shootings in El Paso and Dayton, Ohio, which together left at least 31 people dead and dozens wounded.

Mr. President, what you said about hatred rings true. But you are wrong in blaming mental illness.

As the father of an adult son with a mental illness and one of 14  nongovernment experts appointed by your administration to a panel that advises Congress about serious mental illnesses, I’d like to recount some well-established facts.

It’s easy for the public to assume that anyone who commits mass murder is mentally ill. How could he or she not be? And several shooters in recent high-profile mass killings have had a serious mental disorder.

But your implication that the 46 million American adults estimated to have a diagnosable mental illness and the 11.2 million thought to have a serious mental illness, such as schizophrenia and bipolar disorder, are dangerous and potentially mass murderers is as wrongheaded as declaring that the 329 million Americans who are white are capable of committing mass homicide. After all, being white is one of the most common traits of a mass shooter. Data from Mother Jones shows that between 1982 and 2017, 54 percent of mass shooters were white men. Research also shows that many of them struggle with a sense of entitlement attached to their white, heterosexual identity as well as economic anxiety in the post-industrial economy.

Other research, meanwhile, highlights that a very small portion of all gun-related homicides in the United States involve mass killings by people with serious mental illness. In fact, only 3 percent of violent crime can be attributed to people with serious mental illness.

As Amy Barnhorst noted in Psychology Today: “Most of the time, mass shooters aren’t driven by delusions or voices in their head. They are driven by a need to wield their power over another group. They are angry at the perceived injustices that have befallen them at the hands of others — women who wouldn’t sleep with them, fellow students who didn’t appreciate their talents, minorities enjoying rights that were once only the privilege of white men like them. It’s not an altered perception of reality that drives them; it’s entitlement, insecurity, and hatred. Maybe some of them also have depression, ADHD or anxiety, but that is not why they opened fire on a group of strangers.” This dovetails with profiles of such shooters as Dylann Roof, the then-21-year-old white supremacist who killed nine African Americans in a Charleston, S.C., church.

Mr. President, hate is not a mental illness. Nor is white nationalism, as acting White House chief of staff Mick Mulvaney suggested. It is taught. It is promulgated. The FBI describes a hate crime as a “criminal offense against a person or property motivated in whole or in part by an offender’s bias against a race, religion, disability, sexual orientation, ethnicity, gender, or gender identity.”

As forensic psychiatrists James L. Knoll and George D. Annas warn, “Gun restriction laws focusing on people with mental illness perpetuate the myth that mental illness leads to violence, as well as the misperception that gun violence and mental illness are strongly linked.” Hate is fueled by such myths.

They further noted that “laws intended to reduce gun violence that focus on a population representing less than 3 percent of all gun violence will be extremely low yield, ineffective, and wasteful of scarce resources. Perpetrators of mass shootings are unlikely to have a history of involuntary psychiatric hospitalization. Thus, databases intended to restrict access to guns and established by gun laws that broadly target people with mental illness will not capture this group of people.”

Mr. President, I am not a psychiatrist, nor am I an academic or a sociologist. I am a father, just as you are. I have witnessed how bias has and continues to make my son’s life difficult. I have seen how it encourages fear and prejudice against him and others who have an illness that they did not choose.

Conflating mental illnesses with mass shootings hurts people. It stigmatizes, marginalizes and creates bias. So please, Mr. President, just stop.

The post Hate Is Not A Mental Illness: I Respond in Washington Post Today To President Trump’s Words appeared first on Pete Earley.

I SEE CHANGE COMING by Channin Henry Williams

Growing up in a small middle-class town in Washington State, I had very little knowledge or understanding about mental illness, our criminal justice system, and the homeless or how these issues were connected. It wasn’t until I was an adult, living in the Houston area, that my eyes were opened to the larger problem. It was not until my own personal experience left me with no doubt that the American mental health care system is insufficient. I believe the inadequate and flawed mental health system plays a large part in why our loved ones end up living on the streets or living in our prisons. 

Not long ago, I ran into an old friend, Linda, who lives in a high-rise apartment in downtown Houston. We hadn’t talked in years. Because the topic of my daughter came up, Linda told me about her mornings and walking her dogs at 5:30 am.

Linda talks passionately about the homeless people she chats with. She describes a man who carries a cardboard box that is used for his bed. Many tell Linda about their loved ones but their stories are incoherent. She makes healthy muffins for them because she doesn’t know when they’ll get their next meal. It breaks her heart that she can give them walking directions to a hot meal, warm clothes, and a few other services, but nothing for their mental health needs. Many nights she watches, from her window, as the police escort a homeless person away in a police car. 

Those strangers, whom society has written off, belong to someone. What if I lose my own daughter to her mental madness? The optimism in me wants to deny that could happen, but the laws and the mental health system I have lived with remind me it’s a real possibility. Would my daughter be harmed or feared by those rushing past her? Would there be someone kind enough to smile at her and feed her a muffin? It gives a bit of comfort knowing there are more Lindas out there who value all human life. We don’t hear about them because they don’t seek recognition.

My daughter, Raven, is an amazing person whose early childhood was anything but easy. She was removed from her biological family and two foster homes, and was admitted to her first psychiatric hospital before her 4th birthday. She was then placed in my foster home. When the parental rights were terminated, I adopted her. Shortly after, I got married and she was adopted by my husband and we became a family. She brought so much joy to our lives even when things were difficult.

Raven received a bipolar diagnosis before her 4th birthday, but I didn’t believe it. We treated her behaviors as symptoms of post traumatic stress disorder, ADHD, obsessive compulsive disorder and reactive attachment disorder. She went to therapy and family sessions over the years because of the difficulty of raising a child with so many problematic behaviors. Even so, Raven was a cheerful child, who wanted to behave and make the people in her life proud of her. Her quirky personality helped her friends overlook her frequent outbursts, but the peers, who couldn’t understand her, were often unkind. When I saw small improvements in her daily life, I believed, one day, all the past abuse would be behind us. 

When Raven was 12, one single event seemed to “awaken” mental illness. Our life was suddenly spinning out of control. During the next nine months she was hospitalized eight times. She began experiencing deep depression which led to manic episodes. Her bipolar diagnosis was confirmed but later changed to schizoaffective disorder. It seemed likely that borderline personality disorder would also be added. Each time the doctors changed her medications and sent her home new symptoms appeared. She began expressing delusional thoughts and her fantasy world was mixed with what was real. When her hallucinations and obsessions became homicidal, we were advised to get her into long-term treatment. 

Then came the most perplexing Medicaid law that did nothing but add to the chaos. In my state, Medicaid wouldn’t cover long-term treatment for mental illness unless parents gave up guardianship to the state. Caseworkers who specialized in child abuse (CPS) would determine my child’s medical care. We first turned to a local post-adoption agency for support and funding. When their funding ended, and it was clear my daughter couldn’t return home, we had no choice but to give up guardianship.

CPS agreed to keep Raven in the first residential treatment center (RTC). She lived there for a year, but wasn’t getting better. CPS recommended that she go to a long-term psychiatric hospital. I was told, “Your daughter’s prognosis looks bleak.” While it was hard to hear, it was what I needed to keep me grounded. I knew that it was okay for Raven not to achieve all the dreams I had for her. I was proud of her for working hard and not hating me for sending her away. 

The state workers disregarded the recommendation of Raven’s medical team and sent her to another RTC. This was a deplorable facility that specialized in treating teen girls who’d been in trouble with the law, not psychiatric patients. The treatment of Raven and me was anything but nice. Raven lasted about 16 days before she tried to strangle herself and was sent to an acute psychiatric hospital. My husband and I hired a lawyer. Because Texas didn’t have a long-term psychiatric hospital willing to take Raven, the judge granted an intercontinental compact. In this case, Texas negotiated an agreement making it possible for Raven to receive psychiatric care in Florida. This process would take time, but the judge ordered that Raven was not to return to the RTC. CPS ignored the referral.

Raven was returned to the RTC. Despite my warnings that Raven would crack in that environment, CPS workers did nothing. Besides making my outrage clear, my legal rights to act were gone. Raven did crack about 18 days after being returned. She had a psychotic, manic episode. The RTC staffers refused to call the crisis Intervention team to have Raven assessed. They intended to press criminal charges against her and were uninterested in using the Harris County diversion program. 

This arrest added more tension as we scrambled to figure out what would happen next. Would Raven go to Florida or would she stay and face criminal charges? Within 72 hours of her arrest, CPS removed my daughter from the juvenile detention center and put her on a plane to Florida. All charges were dropped. She was 13 years old.

With a different kind of treatment and environment, my daughter improved significantly. She faced consequences if she were defiant, but the approach was different for enforcing the rules and consequences. She learned how to calm herself and learned strategic skills for communicating when she was becoming, psychotic. She learned how to express herself when the hallucinations were too loud. Through weekly therapy sessions, my husband and I learned new parenting skills to use when she returned. We were given reasonable expectations to help us set appropriate goals for her.

When Raven returned home from Florida, the transition from being institutionalized for almost two years was extremely difficult. CPS offered little support and, in many ways, made thing more difficult. At times, it looked like Raven wouldn’t survive outside the security of locked doors and 24-hour monitoring. Most of her suicidal attempts were wrapped in psychotic thinking. One day, for example, while she appeared happy, she swallowed a battery and a few trinkets. She thought, if her friend was going to kill himself, she didn’t need to live either. These kinds of thoughts and behaviors were common on her good days. 

As my husband and I began to anticipate the obstacles we’d be facing when Raven turned 18, we decided to move to our weekend cabin in the hill country at the end of Ravens 10th grade year. Raven was excited about this move. We set up new school accommodations before moving and made plans to slowly transition her medical care.

It didn’t take long for the police to know us and, for the most part, they understood the seriousness of Raven’s mental condition. One event, which happened several months before my visit with Linda, left me realizing how easy it would be to lose my daughter to her madness. 

After 5 months, when Raven’s illness seemed to be in remission, her paranoia became progressively more problematic. When I agreed to a small medication change, I didn’t know it would set off another downward spiral and lead us back to CPS. While an inpatient, Raven’s medication changes happened abruptly. Doctors added and subtracted new medications every few weeks while she was withdrawing from her previous therapeutic combination. Meanwhile, they sent her home even when I expressed my concerns. It was no surprise that, each time she was released from the hospital, she became sicker and more psychotic. I had the first doctor removed from continuing to treat Raven. He told me the therapeutic level of medication wasn’t good for her and he wouldn’t prescribe it, even though it had kept her home for almost two years. The second doctor wasn’t much better. Raven had a total of six hospitalizations in a six month period. 

Ravens biological father had contacted her on social media while her life was going relatively well. At first, she expressed no desire in knowing him, but her interest was suddenly peaked during the downward spiral. She was enrolled in the partial hospital program on the day she decided to leave our house on foot. Because she was acting strangely, I called the police. When the police assessed her, they determined she didn’t meet criteria for a commitment, but admitted she didn’t sound coherent.

I’ll never understand why the police drove Raven 15 minutes to a local restaurant so she could use the internet to contact her biological father. She wanted him to pick her up so she could live with him. She hadn’t seen him since she was three years old and CPS had terminated his rights. I was told, because she was 17, I couldn’t stop her regardless of her severe mental illness. Her biological father lived four and a half hours away. He was only thirty minutes away from getting Raven before the hospital administrator, the police in the next county, and I shut down her plans. Soon we learned she was being commanded by her hallucinations to kill my husband, me, and her pets, but she didn’t want to act. The only solution she could think of to protect us was to find a new home. She was committed back to the psychiatric hospital. My daughter could have left with anyone that day and I might have lost her forever. 

When the severity of Raven’s symptoms became more dangerous for her to live outside a secure living facility, my husband and I made it clear we could no longer bring her home. Her psychologist agreed. During another psychiatric hospital stay, the doctors finally put in a few requests for long-term hospitals to help get her medications working properly. San Antonio State Hospital did an assessment but declined treating her. Cedar Crest Hospital declined because of “aggression” so Raven was sent home. I was not yet willing to call CPS, so we decided to take another chance, hoping the meds would finally be right. 

Less than two weeks later, showing signs of being very sick, our daughter started a fire in our cabin. We were able to put the fire out quickly. When police picked her up, it was clear she needed long-term medical care. They didn’t even hint about pressing charges. Only the doctor treating her asked if we were doing to press charges, suggesting that might be the best way to get her help. He psychologist didn’t agree with the doctor. 

That evening, my husband and I went to the hospital to talk to the doctors and to check on Raven. We were shaken by the events of that day, but we weren’t angry with her. She’d been medication compliant. When I entered the hospital room, Raven was entertaining herself with peanut butter and a spoon. After we hugged, I saw that she was behaving like a 5 year old. She showed me her neat trick. She could put the spoon and peanut butter on her nose, and giggled because it wouldn’t fall off. She seemed oblivious to the events that had just taken place. The next morning, I called CPS and explained why I was unable to bring my daughter home. My heart broke.

In spite of everything, I see hope. I see more people, like Linda, who care. I see more of us telling our stories so we can make a difference. I see social support groups available online to give advice and support. I see a movement of people who are tired of fighting a system that fails us and has no accountability, and tired of finding our loved ones incarcerated or homeless. I see people educating our politicians and trying to make improvements. I see change coming. 

I’m excited to play my small part in fighting for one of the most vulnerable groups of people in our population. I share my story because it needs to be heard. 

UPDATE: Raven is back in an acute psychiatric hospital and the doctors have yanked the medication combo that keeps her from the behaviors that we can’t live with. Again, they claim the medications are not "good for her" — as if being lost in her psychosis leaves her better off. Raven is begging for ECT or brain surgery —anything to prevent her from loosing touch with reality. Anything so she can come home. This brings us full circle as we watch her decline. Her prognosis is looking dim. The meds that keep her functioning the best are being denied to her.

HAPPY PIC

Steps to somewhere.

Hope you have a good weekend everybody!

MENTAL HEALTH ADVOCATES PUSH REFORMS by Gary Warth

San Diego Union Tribune 8/7/19

Coalition seeks support for new laws and policies from presidential candidates

By Gary Warth

POWAY

A grassroots coalition of nationwide and local mental health advocates is asking all presidential candidates to support reforms in laws and policies that they say will make it easier for people to get treatment and for families to help their troubled loved one.

“The first thing you need to do is educate the candidates, because most people don’t understand serious mental illness,” said Poway resident Linda Mimms, a National Alliance on Mental Illness-trained advocate who helped craft a five-point platform that is being presented to candidates.

Mimms has called for reforms to mental illness laws for the past several years, arguing that parents of adults with mental problems should have more rights and courts should have more flexibility to mandate treatment.

Among the proposals in the platform are a call to create a cabinet position exclusively focused on serious mental illness and changes to laws that would ensure mental health professionals are permitted to share and receive diagnostic information with and from parents or caregivers.

Laws about mental illnesses became part of a national discussion this past week after mass shootings in Texas and Ohio. Mimms said she was encouraged when President Trump called for reforming mental health laws to better identify and even involuntarily confine people who may commit violent acts while also ensuring more patients receive early treatment.

She cringed, however, when he referred to “mentally ill monsters,” and noted that a small percent of mass shooters had been diagnosed with mental problems.

There are connections, however. A Wall Street Journal editorial this week cited studies between 2000 and 2015 that suggest a third of mass killers had untreated severe mental illness, while an FBI study found 40 percent had received a psychiatric diagnosis, and 70 percent had other mental health issues.

The platform was drafted after a monthlong online discussion among about 70 people who were not associated with any one group and were from 30 states. Mimms, who has a degree in public policy, wrote the final version that was adopted by organizer Dede Ranahan, author of “Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family, and Everyday Life.”

Other local advocates who worked on the platform were Katherine Smith-Brooks and Bob Brooks of Carlsbad and Mary Sheldon of Poway.

The platform’s first topic calls for reclassifying serious mental illness from a behavioral condition to a neurological medical condition, which will unlock more research funding and help in insurance reimbursement, according to the advocates. It also calls for a cabinet position on serious mental illness and the inclusion of schizophrenia in a Centers for Disease Control program that collects data on risk factors of neurological conditions.

The second topic calls for reforming the Health Insurance Portability and Accountability Act, or HIPAA, which the platform writers said creates barriers that shut out parents and caregivers from the treatment of family members.

The third calls for the repeal of a rule that prohibits Medicaid payments to facilities with more than 16 hospital psychiatric beds for people ages 21-65, which the advocates argue has created a national shortage of treatment options.

The fourth platform topic calls for long-term care of people with severe mental illness, including early detection and follow-up treatments after release. The platform calls for federal incentives to states that address a full array of services and supportive housing care.

The final topic is about decriminalizing serious mental illness and includes reforms that can lead to more involuntary treatment, which Mimms said was her personal top priority.

“Serious mental illness is the only disease where the doors to treatment are shut unless a crime is committed,” the platforms reads. Specifically, it calls for redefining criteria for involuntary commitment with terms that are objective and based on scientific, medical needs.

A letter that will be sent to all candidates asks each to address the topics in their campaign appearances and debates, Mimms said. 

gary.warth@sduniontribune.com

Click here to read the article in the San Diego Union Tribune 8/7/19 about our 5 part plan for SMI.

NOTE FROM DEDE: If it takes a village to raise a child, it takes a country to help a child with SMI. This coalition is from across our country. Let's keep the momentum going. As Linda has done, contact your local media outlets and send them our plan. Unfortunately, our effort is manifesting in a time of wrenching, national grief. Fortunately, our plan is ready to go. If you'd like a copy of the plan, the cover letter, and an addendum of additional ideas, post your email address in the comments section below, or send it to me at dede@soonerthantomorrow.com. Then forward the documents to people in your sphere of influence. Thanks to everyone participating.

http://www.bit.ly/soonerthantomorrow

Yamileth Lopez holds a photo of her deceased friend Javier Amir Rodriguez at a makeshift memorial for victims in El Paso, Texas. (Mario Tama Getty Images)

PLEASE FORWARD TO THOSE IN YOUR SPHERE OF INFLUENCE by Dede Ranahan

I believe that serious mental illness (SMI) should not be a footnote to other issues, i.e., gun violence, and that it needs to be recognized and addressed as its own issue. I'm reposting the 5 part plan developed by grassroots advocates from across the country. It's not comprehensive but it's a beginning.

Before SMI becomes the victim — responsible for gun violence — and before politicians use it more and more as a scapegoat, please join us. Send copies of this plan to local, state and federal representatives. They need to be educated. They need to step up and help 10 million SMI individuals and families who fight every day for life and death services.

Post your email in the comments section below, or send it to me at dede@soonerthantomorrow.com. I'll send you the cover letter, plan, and additional ideas so you can forward them to those within your sphere of influence.

A FIVE-PART PLAN TO ADDRESS SERIOUS MENTAL ILLNESS (SMI)

FOR ALL 2020 PRESIDENTIAL CANDIDATES

PLEASE ADDRESS THESE TOPICS IN YOUR CAMPAIGN APPEARANCES AND DEBATES

1. RECLASSIFY SERIOUS MENTAL ILLNESS (SMI)) FROM A BEHAVIORAL CONDITION TO WHAT IT IS, A NEUROLOGICAL MEDICAL CONDITION WHY RECLASSIFICATION IS IMPORTANT
Reclassification will unlock more research funding and help eliminate discrimination in treatment, insurance
reimbursement, and the perception of SMI as “behavioral” condition. SMI is a human rights issue. NIMH ranks
SMI among the top 15 causes of disability worldwide with an average lifespan reduction of 28 years.
PRESIDENTIAL ACTION
* Create a cabinet position exclusively focused on SMI.
* Push for Congressional appropriations to include schizophrenia in a CDC program that collects data on the
prevalence and risk factors of neurological conditions in the US population.

2. REFORM THE HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT (HIPAA)
WHY HIPAA REFORM IS IMPORTANT
Overly strict HIPAA laws make it extremely difficult for families and caregivers to partner in the treatment of their loved ones, resulting in important life-saving medical information gaps. By eliminating this barrier, family support will be strengthened, reducing the chance of relapse, homelessness, imprisonment, and death.
PRESIDENTIAL ACTION
* Work with legislators to change HIPAA law to ensure mental health professionals are legally permitted to share and receive critical diagnostic criteria and treatment information with/from parents or caregivers of SMI.

3. REPEAL MEDICAID’S INSTITUTES FOR MENTAL DISEASE EXCLUSION (IMD)
WHY IMD REPEAL IS IMPORTANT
IMD repeal will increase the availability of psychiatric inpatient beds. The IMD exclusion is not only discriminatory of those suffering from neurological brain disorders, it is also a leading cause of our national psychiatric hospital bed shortage. It prohibits Medicaid payments to states for those receiving psychiatric care in a facility with more than 16 beds who are 21-65, the age group with the most SMI.
PRESIDENTIAL ACTION
* Work with legislators to repeal the IMD exclusion.

4. PROVIDE A FULL CONTINUUM OF CARE
WHY A FULL CONTINUUM OF CARE IS IMPORTANT
A continuum of care ensures that SMI patients receive early intervention at all stages of their illnesses, longterm care when needed, and follow-up treatment (medications and therapies) when they’re released. It reduces visits to jails, ER’s and hospitals, homelessness, and morgues. A continuum of care provides life-time management.
PRESIDENTIAL ACTION
* Create federal incentives to states which are addressing a full array of inpatient, outpatient, and supportive
housing care.

5. DECRIMINALIZE SERIOUS MENTAL ILLNESS (SMI)
WHY DECRIMINALIZATION OF SMI IS IMPORTANT
People suffering from other neurological conditions like Alzheimer’s and dementia can get treatment promptly without being kicked out of their homes to wander the streets until they are arrested and put in jail or prison rather than a hospital. Serious mental illness is the only disease where the doors to treatment are shut unless a crime is committed. This is pure and simple discrimination with the disastrous results we see in our country today — homelessness, incarceration, the disintegration of families, and death.
PRESIDENTIAL ACTION
* Work with legislators to change “must be a danger to self or others” criteria.
* Work with legislators to change involuntary commitment criteria, alleviating the subjective nature of “gravely
disabled” and redefining it in objective terms based on scientific medical need for treatment. Psychosis, like a stroke, is a traumatic brain injury and needs immediate treatment for the best outcome.

HAPPY PIC

Water lillies at sunset.

Hope you have a good weekend everybody!

OUR SON'S PREVENTABLE DEATH by Pat Wood Sterling

On March 22, 2019, our son, Brian, took his own life. My husband and I believe that Brian’s suicide could have been prevented if the first group of medical responders and sheriff’s officers, who we called, had acted appropriately.

What follows is a reconstruction of events to the best of our recollection, and a question as to why officers, who responded to our 911 call, didn’t exercise their authority to use an Emergency Custody Order ( An ECO allows a person to be taken to a hospital against their will in Virginia) to assist our son who didn’t have the clarity of thought to act in his own interest.

As Brian became increasingly delusional and paranoid over a period of months, he called the Loudoun sheriff non-emergency number several times. Brian had called them when he lived in an apartment in Leesburg and continued to do so when he moved to our house in Sterling. Officers had come to our house in Sterling to investigate imagined break-ins and “suspicious people” loitering around the house several times in the few weeks prior to Brian’s suicide.

Deputy P. Brick (#3198) responded to these calls and became acquainted with Brian and his mental health status. Because Brian didn’t present himself as being a danger to himself or others during these calls, Deputy Brick told us, “I can’t take Brian in for a mental health evaluation.” We agreed with him at that time.

The last time Brian asked officers to come to the house, Deputy Brick suggested that we try to get an ECO ourselves from the magistrate on the grounds of “inability to care for self.” Please note, Brian had been hospitalized in Loudoun County several times over a 7 year period and had a history of being taken in by the sheriff’s office through ECOs issued on our behalf by the magistrate. He’d also been taken for mental health evaluations several times directly by the sheriff’s officers because of complaints by neighbors. In one case, because of a domestic assault. We’d asked, many times, for the Loudoun County Community Service Board to give Brian Assisted Outpatient Treatment (AOT). They always refused. The basis of their refusal was that Brian had private insurance which we were able to obtain for him through his father’s job with the State Department and because he’d become ill before the age of 22.

On March 22, we were occupied most of the day in supervising the upgrading of our home security system. Because of Brian’s paranoia, we thought it might help him feel more secure if we activated an old security system that already existed in the house when we purchased it. We had a technician from the security company in our house from 11:30 AM until 5:00 PM.

We were aware that our son wasn’t feeling well and had been vomiting, but we didn’t really start paying attention to his condition until after the technician left at 5:00 PM. Our son had locked himself into an upstairs bathroom and had the water turned on. We assume he hoped the sound of water would camouflage the sound of vomiting. We were able to open the door with a screw driver and found our son crouched on the bathroom floor vomiting into the toilet. His eyes were glazed, and he could barely stand up to walk to the adjoining bedroom. He continued to vomit into a bucket as he sat on the bed.

When we saw his condition, we thought he’d perhaps taken a street drug or overdosed on one of his psychiatric medications. We asked him and he denied it. He said, “I have food poisoning. I’ll be fine.” We could tell it wasn’t food poisoning. Brian’s voice was high pitched and abnormal, and his eyes and the ability to walk weren’t normal. His vomit was black and looked as though it had blood in it.

We decided to call 911. When the responders to our 911 call arrived, it must have been about 5:45-6:00 PM. Two sheriff’s officers accompanied the medical responders. Our recollection is that there were 3 or 4 medical responders. We learned from one of the sheriff’s officers that Officer Brick was not available because he was sick that night. We were upstairs with my son so we didn’t see what kind of vehicle the medical responders arrived in. We don’t know if it was an ambulance or fire truck.

An older man seemed to be in charge of the medical personnel. He asked my son if he could take his vital signs and my son refused. He asked if they could take him to the emergency room and my son refused. The two sheriff’s officers noted to each other that my son had a red mark on his neck where he’d pulled off a chain that he always wore. The older medical person informed us that he could do nothing since my son was refusing treatment. He told me, “Try to persuade your son to be hospitalized.” I was also unsuccessful.

It was clear to me that my son was very ill and delusional. I don’t believe that the medical people ever examined the contents of the bucket my son continued to vomit into in their presence. Shortly thereafter, they all left. They were probably in the house about 15 minutes total.

To us, at least, it was obvious that Brian wasn’t in a mental state where he could make an informed decision about his own health. He was beyond understanding what anyone was saying to him or urging him to do. The question of whether he had taken some self-harming drug was never addressed. The officers certainly must have been aware of his mental health record from past visits. The red mark on his neck that indicated self-harming behavior was ignored.

We know that police and sheriff’s officers are trained to take people in distress into custody and we can’t understand why this was not, at least, considered. We pleaded with them, “Please take Brian to a hospital for medical treatment.” They didn’t exercise their authority to issue an ECO. With hindsight, we think our son was already well along the road to endeavoring to end his life.

Our questions are:
-Did the officers not understand their authority to act in a crisis?
-Had the officers completed the training that is required for this type of situation?
-Did they consider one or more of the three criteria (danger to self, danger to others, inability to care for self) that allows them to act without the consent of an adult?

After the medical responders and the officers left, my husband and I debated about what to do. My husband left the house about 6:30 PM to go to the magistrate in Leesburg to try to obtain an ECO . While my husband raced to Leesburg, my son stumbled down the stairs into our office where I was sitting. He sat down and, a few minutes later, had a convulsion. His body went rigid and his eyes rolled back. He’d never had a convulsion before.

I grabbed my cell phone and called 911 again. My son walked into the living room and fell onto the living room couch continuing to vomit into a bucket. He had another massive convulsion. He ended up with his head on the living room floor and his feet pointed at the ceiling. He had no control over his body. When he was able to sit up again. I was still on the phone with 911. I saw a knife poking out from one of his pants pockets. I asked him, “What is that knife was for?”

Brian started having another convulsion. As his arms and body began to get rigid again, he pulled the knife out of his pocket and slit his throat. I told the 911 person what had happened and begged her to get someone to the house quickly. She told me, “Get towels to try to compress the wound on his throat.” I ran to the kitchen to get towels but my son pushed me away when I returned to him. Running back to get more towels, I turned around and found Brian standing in the kitchen looking through the trash can. I can only guess that he was looking for the knife.

The 911 lady asked me, “Are there any weapons in the house?” I replied, “No, only kitchen knives.” When I said that, my son’s attention went to the drawer where we keep the kitchen knives and he started moving toward it. This whole time he was bleeding profusely from the wound in his neck. 

I stood in front of the drawer. Brian was getting weak and couldn’t push me aside. An officer burst through the kitchen door from the garage and started wrestling with my son trying to handcuff him. My son struggled against being handcuffed and asked the officer, “Why are you doing this?" The officer saw the blood pouring from the gaping wound on my son’s neck. He replied, “I’m trying to save your life.”

After several minutes, the officer was able to handcuff Brian. He threw him down on the dining room floor. At that point, medical personnel came into the house. It was too late since my son had lost so much blood. Medical personnel worked on him for thirty minutes with no success. We believe he died on the dining room floor.

Brian was taken to Reston Hospital in an ambulance. My husband arrived back from Leesburg and we rushed to the hospital where we sat in a waiting room for 45 minutes. A doctor came out and told us, “We weren’t able to save Brian. He lost too much blood and we weren’t able to get a heart beat.”

We so wish that the first call to 911 had resulted in getting my son medical treatment and then mental health treatment. The medical examiner’s office stated on the death certificate that the “Immediate cause of death is pending.” We’ve asked for, but haven’t received, the results of any toxicology screening. With the constant vomiting and the convulsions, it’s possible that some drug or overdose of medication was involved.

We hope, in the future, the mental health of the ill person and his/her ability to make informed and rational decisions be taken into consideration by medical responders, and that they defer to sheriff’s officers regarding a possible ECO. The possibility of an attempt at suicide must also be taken into serious account when deciding whether or not to leave the scene. An opportunity to save my son’s life was missed and resulted, in our opinion, in a tragedy that could have been avoided. Our family is devastated by Brian’s loss. He was 38 years old.

We hope our story will prevent this kind of heart-breaking outcome for another family.

Brian’s mom and dad - Pat & Jerry

WE'RE THINKING INCORRECTLY ABOUT SERIOUS MENTAL ILLNESS by Mary Rossell

Eight-hundred-ninety-seven days. That’s how many days it’s been since my son Kevin died. I remember when I counted the number of days after his birth, then transitioned to months and then to years. Now, when asked by others about his death, I give the socially appropriate answer of nearly three years, but I still think 897 days.

Kevin suffered from a serious mental illness. I’m not certain which one as he was given at least two dozen diagnoses during the years of his treatment, often two to three diagnoses at the same time. Even while we cycled through different diagnoses, we assured ourselves that he had good odds to do well. We were pro-active with early intervention. How naive we were.

Through the years, we were often told to wait and watch. The child psychiatrist said, “He’s okay, just a bit anxious. A smaller school should help.” The prodromal psychiatric assessment clinic said his symptoms were “not clearly psychotic, although he seems to have some odd beliefs. His presentation is consistent with an autism spectrum disorder.”

At the later stage of his illness, one of his doctors candidly said to me, “Diagnosis is just a label and doesn’t really help. What we really do is treat symptoms.” From then on, I silently called his team of doctors the “Symptom Chasers.” With the absence of biological markers, all practitioners can do is interview, watch, and categorize based on what they observe. And so, we continued to wait as Kevin continued to be watched.

As months passed, Kevin didn’t respond to the usual treatment protocol of pharmacological combinations, behavioral therapy, and daily structure of activities. One day, when he didn’t want to go out for his daily routine, he asked me, “Would you make a person, with a compound leg fracture, run laps around a track field before you’d fix his leg? No, you wouldn’t. So why are you making me run laps when you haven’t yet treated my disease?” With tears in my eyes I said, “I’m sorry, this is all we have.”

We continued to search for treatment to help him. Over and over, we told ourselves the odds remained in our favor. We had access to the “best” medical care, and we had compliance from our child. We just hadn’t found the right treatment yet. We traveled to San Francisco, to New York City, and, finally, to Boston. In the end, all we really had to offer Kevin was medication, the effectiveness of which has not progressed since 1959, endless talk therapy, and mind-numbing structure.

After 333 days of intensive treatment with a psychiatric hospital in the Boston area, Kevin died in a residential home associated with the hospital. Kevin was 20 years old.

After Kevin’s death, one of his doctors compared his illness to that of end-stage cancer. Perhaps he said it to help make sense of what was otherwise a senseless illness and horrifying death. But he was wrong. Kevin’s illness and death were nothing like cancer. You can accurately diagnose cancer. You can see if treatment is making it better or worse. And you can explain how the patient died. None of this happened for Kevin.

When some time had passed after Kevin’s death, I began engagement with the mental health advocacy community. Each time, I found myself with immense respect and admiration for the tireless commitment of the parents who care for their children with serious mental illness. But I was also disheartened by the fact that, as we enter the third decade of the twenty-first century, the prominent advocacy work for the seriously mentally ill is about treating this community as patients rather than inmates.

How sad that those, who are most vulnerable among us, cannot be treated with basic dignity by our society. While we fight to make progress in releasing people from prisons and placing them in hospitals, we cannot forget that many, if not most, will remain incarcerated within the confines of their serious mental illnesses until we make real progress in diagnosis, prognosis, and treatment.

In one of Kevin’s last emails to his doctors he said, “If you want to understand my experience better, start by thinking about the ways you are thinking incorrectly about it.” There remains a lot for which we are thinking incorrectly when it comes to serious mental illness.

HAPPY PIC

Photo credit: Dede Ranahan

They’re first cousins. Do you see the resemblance?

Hope you have a good weekend everybody!

PLEASE HELP US BRING SERIOUS MENTAL ILLNESS INTO 2020 POLITICAL DISCOURSE by Dede Ranahan

This is the grass-roots effort of serious mental illness advocates from across the country. If you’d like to join us and send these materials — letter, Five-Part Plan, and an attachment of SMI needs to your political representatives and others in your spheres of influence, send me an email and I’ll email these materials back to you. Thanks so much for your help. Dede

dede@soonerthantomorrow.com

TO: All  2020 Presidential Candidates
SUBJECT: Serious Mental Illness (SMI)

So far, 2020 political candidates make rare mention of serious mental illness (SMI — schizophrenia, schizo-affective disorder, OCD, bipolar disorder, and major depression), and the lack of mental illness care in the US.

* The SMI population represents 4-5% (10 million) of the mentally ill in the US. That’s 10 million families and extended families (voters).
* Ten times as many people with SMI are incarcerated as are hospitalized.
* Some SMI individuals are so sick they don’t realize they’re sick (anosognosia), don’t respond to treatment (if they get it) and end up incarcerated, homeless, missing, suicidal or dead.
*It will cost billions to create a viable mental illness system. It’s costing billions, now, in prison over-population, homelessness and cities under siege, lost workdays, family disintegration, suicides, untimely deaths, inundated ER’s and hospitals, violence caused by untreated SMI, overwhelmed police, and in uninformed and misinformed criminal justice systems.

The Five-Part Plan enclosed is the collaborative work of grass-roots advocates from across the country —individuals, professionals, writers, journalists, caregivers, and mothers (always the mothers). Our intent is to put this plan in front of every 2020 presidential candidate. Right now, no candidate is talking about SMI. It’s as if it didn’t exist.

The steps in our plan are baby steps. We can’t immediately address everything that needs to be addressed in our messed up mental illness system, but we have to start somewhere. We’re trying to help 2020 candidates — we know you have a lot on your plates and we appreciate your energy and efforts to make our country better. We’ve created this Five-Part Plan to give you a starting point and a way to introduce SMI into political discourse and public conversation.

We’re asking you to take four initial actions:
1. Please read our plan and make it your own.
2. Put your SMI plan on your campaign website.
3. Talk about SMI on the campaign trail and in campaign debates.
4. Talk with members of the SMI community. We’re willing and able to help you as you move forward.

The SMI community is searching for its 2020 presidential candidate. We’re a large, passionate, motivated, frustrated, hurting, and determined block of voters. We look forward to hearing from you.

Marie Abbott — Waterford, Michigan,
My grandson has autism, bipolar disorder, and development delays. Has his civil 
rights intact.

Jane Anderson — Illinois
My 38 year-old son has paranoid schizophrenia. He was diagnosed at 18. My husband and I are 
caregivers.

Tim Ash — Arcata, California
Caretaker of a volatile, unstable SMI family member because there are no options besides jail and the bushes or doorways.

David Bain — Sacramento, California
I’m living with chronic depression and epilepsy and working to divert SMI from prison into treatment.

Marti Rhoden Bessler — Alexandria, Kentucky
My son’s been suffering from schizoaffective disorder for 19 years within our failed mental health system.

Alisa Bernard — Jupiter, Florida
I have children with SMI.

Judy Bracken — San Ramon California
My  30-year-old son has schizoaffective disorder.

Katherine Smith-Brooks and Bob Brooks — Carlsbad, California
Our SMI son is now stable and working following effective treatment and the same psychiatrist for 20 years. We were his only advocates for many years.

Regina Gipson Burns — Hoover, Alabama

Leslie and Scott J. Carpenter — Iowa City, Iowa
Our son’s been suffering from under-treated schizoaffective disorder for 12 years. He lives in a group home with too few services. He’s been hospitalized 20 times.

Sue Chantry — Vacaville, California
I’ve lived here for many years and watched Mark Rippee, SMI and blind, on the streets of Vacaville with no mental health services.

Barb Cobb — Iowa
My SMI daughter’s been under-treated and under-supported by the current system. She’s endured over 20 hospitalizations and is barely surviving.

Christine Cushing — Vacaville, California
There are no resources or places to live for those who suffer from SMI. For a country that’s so progressed, we’re so far behind taking care of those with SMI.

Lori Daubenspeck — St. Croix, US Virgin Islands
My SMI son is a US Army vet. There’s no SMI facility here and one psychiatrist for the island. We’re in desperate need of facilities, doctors, and federal action.

Kathy Day — Folsom, California
My godson’s been discharged from hospitals many times while considered to be gravely disabled. Laws need to be based on need for treatment rather than time.

Katherine Flannery Dering — Bedford, New York
My brother, Paul, suffered with schizophrenia for 32 years of dwindling care. He died at age 48.

Lois Earley — Phoenix, Arizona
I’m the mother and legal guardian of an adult SMI daughter. I've been battling the behavioral health care system in Arizona since 2004. 

Darla Eaves — Everett, Washington
My husband committed suicide.  My son died in our psychiatric hospital. My daughter, thank God, is here with me and stays on her medication.

Donna Erickson — Abington, Massachusetts
My 34-year-old son has bipolar disorder. He’s been hospitalized 25+ times and cheated out of the life he wanted through no fault of his own.

Sonia Fletcher —- Mount Shasta, California
My daughter’s SMI was untreated when she shot and killed her father in a psychotic break. Our family is heartbroken and literally broken apart.

Anne and Tim Francisco — Orange County, California
Our SMI son was sentenced to prison for a nonviolent offense while he was in a state hospital. He ended his life by suicide while in solitary confinement.

Lynne Gibb — Ojai, California
My daughter’s suffered with schizo-affective disorder for 20 years. She’s been missing, homeless, and hospitalized, but never out of her family’s hearts and thoughts.

Elaine D. Gilliam — Myrtle Beach, South Carolina
My eldest son has paranoid schizophrenia. My eldest daughter committed suicide. Two children are wonderful retired military families.

Jeanne Gore — Shapleigh, Maine
Family member, Coordinator, National Shattering Silence Coalition

Pat Guinn — Lincoln, California
I have an adopted son with SMI.

Catherine (CJ) Hanson
Linda (Rippee) and Joseph Privatte
Lou Rippee — Vacaville, California
SMI blind son, brother, and brother-in-law. No mental health services for 3 decades. Solano County refuses to conserve.
Betty Plowman — I was a neighbor who observed this tragedy for 32 years and tried to help when no one else would.
Chris Plowman — I’ve watched this man waste away on the streets for 30 years untreated. Some people need our help and tax dollars; not be abandoned to rot.
Pam Wilcoxson — Mark’s family’s been fighting for help for him for many years and still have not gotten anywhere. 

Mark and Laura Harreld — Strawberry Point, Iowa
Our SMI son was caught in the criminal justice system for non-violent crimes. He ended his life, to avoid another prison sentence, while in a hospital under armed guard.

Dianne Harris — Grove City, Ohio
My son died of a co-occuring vascular condition before a treatment was found for his negative symptoms of schizoaffective disorder. More research is needed desperately.

Janet Hays — New Orleans, Louisiana
I created Healing Minds NOLA to bring residents, families and stakeholders together to explore alternatives to incarceration, homelessness and death for those suffering with SMI.

Amy Kerr and Paul Cox —- Pasadena, Maryland
We’re caretakers for a 23-year-old son who has schizophrenia and a friend with major depression and end stage renal failure. 

Jeannie Kneisly-Manley —  Elizabeth City, North Carolina
My son has schizophrenia. He has a criminal charge and no court date to get him in the hospital. If I hadn’t bailed him out, he’d still be in  jail waiting.

Stacy Kollias — Henderson, Nevada
I’m the mother/caregiver of a 30-year-old son suffering from schizoaffective disorder.

Dianne Lam — Oakland, California
My son has a dual diagnosis and schizoaffective disorder.

Carole McAfee — Salem, Oregon
My son is living with schizophrenia.

Sherri McGimsey — Morganton, North Carolina
My son is a Marine Veteran with schizoaffective disorder.

Gerri Mele — Cleveland, Ohio

Linda L. Mimms, MA, — Poway, California
The inability to get our ill family member prompt treatment has led to a worsened condition and uncertain prognosis which was totally avoidable.

Alison Monroe — Oakland, California
My 24-year-old daughter is a meth user who has schizophrenia. I’ve tried everything to keep her alive and off the street, with some success.

Nancy Moody — Cambridge, Ohio
My son has schizoaffective disorder.  He’s suffering from withdrawal, seizures, tremors, cognitive impairment, and hallucinations. No one wants to help him.

Mary Murphy  — Springfield, Oregon
My son has schizoaffective and bipolar illness.

Lyn Nanos, LICSW — Natick, Massachusetts
Author: Breakdown: A Clinician’s Experience in a Broken System of Emergency Psychiatry.

Karen Newton — Vacaville, California
My son has bipolar-schizoaffective disorder. While homeless, voices told him to hurt someone. He’s incarcerated while waiting for a bed in Napa State Hospital.

Kelly Nidey — Vincennes, Indiana
My son has struggled with bipolar/schizoaffective disorder for almost 15  years.

Teresa Pasquini — Contra Costa County, California
I’m mom to Danny who is surviving 20 years of suffering, suicidality, solitary, and schizoaffective disorder. There’s no federal action plan for families like mine.

Darlene Patrick —Farmington, Maine
My 32-year-old son has paranoid schizophrenia. He’s been in jail, the hospital, release, repeat.

Gema Pena — Hialeah, Florida
My son, Kristopher, was in solitary for 10 years. He attempted suicide, ate his own feces, was catatonic, and lost over 100 pounds.

Ron Powers — Castleton, Vermont 
Pulitzer prize winner, author of No One Cares About Crazy People
I’m the father of two sons afflicted with schizophrenia. One took his life in 2005.

Paula and Bruce Quertermous — Clinton Township, Michigan
Our 39-year-old daughter has bipolar disorder and cognitive disability from birth.

Dede Ranahan — Lincoln, California
Author: Sooner Than Tomorrow—A Mother’s Diary About Mental Illness, Family, and Everyday Life (2019). soonerthantomorrow.com. My son died in a hospital psych ward in 2014.

Margaret Reece and Greg Gazda — Butte County, California
Our SMI son has been hospitalized 5 times, arrested, and is currently in a mental health court program and living in Yolo County with his grandparents.

Arlene Renslow — Modesto, California
I have two sons with brain damage. One son has schizophrenia. Unless someone does something, things will get worse for everyone.

Mary (Courtney) Sheldon — Poway, California
Mother of 24-year-old SMI son. We’ve winged it for 5 years. My SMI brother died, with his “civil rights intact” behind a dumpster in Anaheim, California.

Martha Mccollister Sroka — Dunkirk, New York
My son has schizophrenia. It’s horrible watching your child change, struggle, and suffer. I request that SMI get the same attention and resources as any other medical illness.

Joanne Strunk — Lexington, Kentucky
My daughter’s been raped, homeless, hospitalized (40+times), and almost died lost in the woods for weeks. She’s dying of neglect due to SMI.

Shelly and Scott Switzer — Sandpoint, Idaho
We’re parents of a 33-year-old son with inadequately treated schizoaffective disorder in Missoula, Montana. SOS We’re barely hanging on.

Diana Mandrell Troup — Texas
My daughter spent 16 years in delusion and psychosis because of bad mental health care. She suffered 50+ involuntary holds, multiple tazings, and traumas.

Laurie Turley — Maine
My sister died due to HIPAA restrictions. One of the last things she said to me was, “They should have let you help me. I wasn’t in my right mind.”

Monica and Kimmo Virtaneva — Hamilton, Montana
Our son, Mika, took his life after the disease schizophrenia took his brain and the criminal justice system took his dignity.

Cheryle Vitelli — Newark, Delaware
I lived with my SMI son for 6 years while he was dangerous with only he and I in the house. Finally, a compassionate police officer pushed to get him help.

Darlene Been Watkins — Moulton, Alabama
My son, Shane, was denied treatment, while in psychosis, because there weren’t enough beds. Two days later, he was shot by police while I watched.

Anna Wellnitz — Oro Valley, Arizona
I’m diagnosed with SMI.

My son, Pat, before our world came undone. Read our story. Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family and Everyday Life. On Amazon. http://www.bit.ly/soonerthantomrrow