Thursday, October 18, 2012

A man who helped shutter mental health facilities considers the effects on his schizophrenic son.

Read his story here.

My son is schizophrenic. The ‘reforms’ that I worked for have worsened his life.

By Paul Gionfriddo, Published: October 15

If you were to encounter my son, Tim, a tall, gaunt man in ragged clothes, on a San Francisco street, you might step away from him. His clothes, his dark unshaven face and his wild curly hair stamp him as the stereotype of the chronically mentally ill street person.
People are afraid of what they see when they glance at Tim. Policymakers pass ordinances to keep people who look like him at arm’s length. But when you look just a little more closely, what you find is a young man with a sly smile, quick wit and an inquisitive mind who — when he’s healthy — bears a striking resemblance to the youthful Muhammad Ali.
Tim is homeless. But when he was a toddler, my colleagues in the Connecticut state legislature couldn’t get enough of cuddling him. Yet it’s the policies of my generation of policymakers that put that formerly adorable toddler — now a troubled 6-foot-5 adult — on the street. And unless something changes, the policies of today’s generation of policymakers will keep him there.
How it went wrong
I was 25 years old in 1978 when I entered the Connecticut House. I had a seat on the Appropriations Committee and, as the person with the least seniority, was assigned last to my subcommittees. “You’re going to be on the Health subcommittee,” the committee chairs informed me. “But I don’t want to be on Health,” I complained. “Neither does anyone else,” they said. Six weeks into my legislative career, I was the legislature’s reluctant new expert on mental health.
The 1980s was the decade when many of the state’s large mental hospitals were emptied. After years of neglect, the hospitals’ programs and buildings were in decay. In my new legislative role, I jumped at the opportunity to move people out of “those places.” I initiated funding for community mental health and substance abuse treatment programs for adults, returned young people from institution-based “special school districts” to schools in their home towns and provided for care coordinators to help manage the transition of people back into the community.
Critical misjudgements
But we legislators in Connecticut and many other states made a series of critical misjudgments.
First, we didn’t understand how poorly prepared the public schools were to educate children with serious mental illnesses.
Second, we didn’t adequately fund community agencies to meet new demands for community mental health services — ultimately forcing our county jails to fill the void.
And third, we didn’t realize how important it would be to create collaborations among educators, primary-care clinicians, mental-health professionals, social-services providers, even members of the criminal justice system, to give people with serious mental illnesses a reasonable chance of living successfully in the community.
During the 25 years since, I’ve experienced firsthand the devastating consequences of these mistakes.
Every year, one in every five children and one in every four adults has a diagnosable mental illness. A quarter of all mental illnesses are considered serious. Until Tim came into my life in 1985, I had no experience with mental illness in my immediate family.

Problems in kindergarten

As with many other chronic diseases, the symptoms of mental illness often sneak up slowly. Beginning in kindergarten, Tim had persistent problems making friends, keeping his focus and following directions. He was usually gentle. But he also had a scarily short fuse. He slept poorly at night and reported that he “got yelled at a lot” in school.
I can’t point to a single time when I first realized Tim’s problems were not just normal. The day he lay down in the middle of the road — just to see if a car would run him over — comes to mind, however.
Tim’s mental illness turned out to be a serious one — schizophrenia — but the disease wasn’t diagnosed until he was 17, after he’d been sick for more than a decade. That’s pretty much the norm for serious mental illness: Typically, 10 years pass from the time people show symptoms of mental illness to the time they receive appropriate treatment.
When Tim entered elementary school, it took us three years to convince school officials that his symptoms weren’t caused by problems with Tim’s having been adopted, his racial identity (we’re white, he’s black) or our parenting. That by then we had three children younger than Tim who also were adopted transracially and were thriving helped make our case. The school’s evaluations suggested he had what was then called attention deficit disorder and some learning disabilities. He was admitted into special education, and the school drew up a mandated individualized education plan (IEP) for him. It focused mostly on helping with his organizational skills and, at the school’s insistence, his “self-esteem.”
Tim’s mental illness wasn’t being addressed, though. And it turned out that Tim probably didn’t really have attention deficit disorder. Soon his symptoms grew worse. On many nights, he wandered the house instead of sleeping. One day, after his 5-year-old brother had broken one of Tim’s prized toys, Tim pulled a knife from a kitchen drawer to attack him. It was a few weeks after that, on a cold winter night, that he suddenly raced out of the house wearing nothing but his underwear, strapped on a pair of in-line skates and went skating down the middle of a busy state highway. He began to report that he was hearing voices.
Tim was finally hospitalized as he turned 11, and he received a diagnosis of a sleep disorder, depression and, after a year of counseling, post-traumatic stress disorder.
Tim’s IEP clearly needed to be revised after he received his new diagnoses. But his principal told me repeatedly that “he just needs to follow the rules,” as if Tim could will away his illness. In a due-process hearing we then demanded, Tim’s special education teacher declared that Tim’s biggest problem was “overprotective parents.”
Blaming people with mental illness — or their families — for the mental illness isn’t new. And it carries a cost. The cost to Tim: Beginning in sixth grade, he would never complete another full year of school on schedule.
The fragmented years
What followed were many years during which one public school after another knew it couldn’t educate my son but had nothing to offer, holding him back in one case and bumping him ahead in another.
Trouble seemed to find him. Self-medicating with marijuana, Tim’s drug of choice for lowering the volume of the voices in his head, got him suspended from the first high school he attended — a public, vocational-technical school in Middletown, Conn. — and placed on court-ordered probation. Fighting with another student got him expelled from the next one, a private boarding school that the juvenile court and school system had sent him to in Idaho.
Back in Connecticut after being arrested for trespassing, he was placed in a teen mental-health inpatient program by the juvenile court. Fighting with another student also got him expelled from the fourth school, a small, private school that specialized in educating teenagers who had had trouble succeeding in regular high schools. A public high school in Austin, where I’d moved after his mother and I divorced, then admitted him because the law required it to, but only for the last six weeks of the school year. It provided no IEP and essentially lost track of him.
During a span of 30 months, those five schools were Tim’s “freshman year.” Had educators actively sought input from outside mental health professionals, they might have seen that Tim’s illness was beginning to overwhelm him: “I’m in a tired, tired state all day,” he told one counselor. “I worry about stuff a lot. I don’t like having friends; it’s hard to find people who are like me. When I’m really, really sad, I cry. When I’m a little sad, I sit and stare.”
Insurer made matters worse
On more than one occasion, my insurance company also contributed to Tim’s problems. Here are two examples among many:
●When Tim was 15 and needed to be hospitalized while in Idaho, my insurer forced his discharge to a non-secure residential drug rehab program in Connecticut — even though Tim wasn’t using drugs at the time. He ran away 72 hours later. That led to his arrest for trespassing and a six-week stay in juvenile detention.
●When Tim was 17, he was hospitalized while visiting his mother in Connecticut. My insurer refused to authorize more than a few days of inpatient treatment, and so the hospital discharged him before he was stable. Soon I found him camping outside my home in his underwear in near-freezing temperatures, and I had to hospitalize him again. Afterward, my insurer said that because of his history, Tim now was eligible for enhanced case-management services. It also said that he’d exhausted his lifetime benefits.
When Tim turned 18, he had no high school diploma, no job prospects and a debilitating mental illness. Legally an adult, he also decided he wanted to live on his own. With a brand-new diagnosis of schizophrenia, Tim was eligible for a variety of support services, but he now told us he didn’t want them. He was tired of counseling and he didn’t like the side effects of the antipsychotic drugs prescribed for him. He also didn’t want a caseworker checking in on him.
He got his wish. None of the overextended caseworkers assigned to him had time to devote to an unwilling client such as Tim.
I found him supported housing three times in three years, but he was evicted each time for various infractions. When Tim finally found a landlord willing to rent him a place on his own, the mental health agency’s housing personnel gave him a bad reference. That kept Tim living on the streets, and eventually he drifted into homelessness and incarceration. When he was in jail, with its regular routines and meals, Tim usually stabilized. But when he was released — because he went back to the streets instead of to a service provider — he destabilized right away, which in his case meant becoming highly agitated and paranoid, and hearing voices.
In 2008, at age 23, Tim moved to San Francisco and has lived mostly on the streets there ever since.
The last time I visited him, he was holed up for a while in a small room a caseworker had found him in a Mission District rooming house. His only furniture was a bare mattress on the floor; a rat and flies were his companions. Sadly, he seemed content.
This is the mental health delivery system that I helped build.

What I realize now

More than one educator has told me that I shouldn’t blame the schools: Their purpose is to educate children, not to treat them. I understand this. But I also learned from personal experience that ignoring a child’s special needs makes meaningless the special-education concepts of “appropriate” and “least restrictive” education that are embodied in the laws we passed.
These terminologies — and the realities they represent — were things that policymakers thought about too narrowly. The word “disability,” for instance, should have covered Tim and children like him. But as a friend who worked a generation ago on drafting the regulations for the federal government’s Individuals with Disabilities Education Act told me, “Paul, we were thinking of kids in wheelchairs.”
It’s no wonder that children like Tim graduate from one kind of cell to another when they grow up. On the basis solely of the numbers of people with mental illness who are incarcerated in them, the three largest “mental health facilities” in the nation are Riker’s Island in New York, the Cook County Jail in Illinois and the Los Angeles County Jail. The two most stable addresses in Tim’s adult life have been the Travis County Correctional Complex in Del Valle, Tex., and the San Francisco County Jail.
If I were a legislator today, I’d mandate — and provide funding to ensure — that every teacher receive training in recognizing symptoms of mental illnesses. I’d see that pediatricians are trained to make screening for mental health concerns a regular part of well-child exams. I’d require school administrators to incorporate recommendations from pediatricians and mental health professionals into students’ IEPs.
I’d put much more money into community mental health services. I’d integrate how services are delivered by funding collaborative community mental health programs and have them run by mental health professionals. I’d include services for chronically homeless people under this collaborative umbrella.
At the same time, to clear our county jails of people with mental illnesses, I’d get rid of laws targeting homeless people, such as those against loitering or sitting on a sidewalk. And I’d make sure that there was supportive short-term and long-term community housing and treatment for everyone needing them. Both were promised almost 50 years ago in the federal Community Mental Health Centers Act of 1964 — promises that were broken when it was repealed in 1981 and replaced by a block grant to states.
Mental illnesses cost as much as cancers to treat each year, and the National Institute for Mental Health notes that serious mental illnesses can reduce life expectancy by more than 25 years. That reduction is almost twice the 13 years of life lost, on average, to all cancers combined. When Tim needed hospitalization, an insurer sent him to drug rehab. Imagine the outcry if the insurer had tried to send a smoker with lung cancer who needed hospitalization to drug rehab.
Perhaps, even if Tim had gotten earlier, more effective and better integrated care, he still would have become homeless. But I don’t believe that. Tim is where he is today because of a host of public policy decisions we’ve made in this country. It took a nation to get Tim there. And it will take a national commitment to get him — and others like him — back.

A former legislator and mayor, Gionfriddo has worked for more than 30 years in the fields of health and mental health policy. He is author of the weekly blog Our Health Policy Matters. This article was excerpted from the Narrative Matters section of the journal Health Affairs and can be read in full at

Monday, October 15, 2012

Valuable Information to Have On Hand in the Event of Psychiatric Crisis, courtesy of the Treatment Advocacy Center

Psychiatric Crisis Resources Kit

The Psychiatric Crisis Resources Kit is a collection of tools and information for responding to - and helping others respond to - mental illness emergencies. All components of the Kit are linked from this page. A CD-ROM version is also available but requires Internet access because some components are available only on the website. The Kit components are: 
What to do in a Psychiatric Crisis” – a writable brochure tool that community organizations and agencies can use to quickly and economically create a local resource guide for use by families and caregivers in psychiatric emergencies
Illustrated step-by-step instructions to completing the writable brochure
NEW "State Standards Charts for Assisted Treatment - Civil Commitment Criteria and Initiation Procedures" (June 2011) - state-by-state summaries of the laws and criteria that determine court-ordered inpatient and outpatient treatment practices, emergency hospitalization for psychiatric evaluation and who can initiate a petition for court-ordered treatment
HELP sheets with practical strategies for responding to four specific crises scenarios
Crisis vocabulary with common terms defined
HIPAA at a glance with rules and exceptions of the Health Insurance Portability and Accountability Act of 1996 and its 2002 "Privacy Rule"
If you have questions, suggestions, problems or wish to request a copy of the CD version of the Psych Crisis Kit, please email us


New Report re: Anosognosia

A new backgrounder from the Treatment Advocacy Center identifies a growing body of scientific study confirming that the condition known as “anosognosia” – lack of awareness of illness – results from structural damage to the areas of the brain involved in self-awareness.

altered-preserved-insight-croppedAnosognosia has been described by neurologists for more than a century in occasional patients with stroke or other neurological conditions, including Alzheimer's disease. Its presence in some individuals with schizophrenia and bipolar disorder has only more recently been studied. The emergence of magnetic resonance imagining (MRI) and other advanced technologies has made it possible to investigate whether the condition is associated with identifiable changes to the brain’s structure.
“The Anatomical Basis of Anosognosia” identified 15 studies that reported statistically significant relationships between the anatomical structure of the brain and the neurological syndrome whose name comes from the Greek words for disease (nosos) and knowledge (gnosis) and literally means “to not know a disease.” Three studies were identified that found no connection.
The analysis by E. Fuller Torrey, MD, founder of the Treatment Advocacy Center, represents the first published summary of recent scientific research into lack of awareness (also known as "lack of insight") in individuals with psychosis in general and schizophrenia in particular.
Anosognosia is believed to be the single largest reason why individuals with the most severe mental illnesses do not take prescribed medications that would diminish or eliminate psychiatric symptoms. It affects an estimated 40% of those with bipolar disorder and 50% of those with schizophrenia.
Click here to read or download “The Anatomical Basis of Anosognosia.” For links to additional information about the syndrome, visit our anosognosia page. To see how anosognosia manifests in someone with active symptoms, watch our “Anosognosia” video on YouTube.

Friday, October 12, 2012

An AOT Law in Tennessee could have secured treatment for Darric Johnson 3 months ago. Instead he spent that time estranged from his family, vulnerable and homeless. Thank goodness he has been found.

Missing UC man found

A Union City man who has been missing for several months has been found safe in Indiana.
Darric Johnson was found Wednesday night sleeping on a park bench in Indianapolis, according to Union City police.
He apparently had walked there from Union City, police reported at midday Thursday.
Johnson, 43, had been reported missing to the Union City Police Department on July 2. His family last saw him at the end of May when he was evicted from his apartment on Washington Avenue, and he was last sighted July 31 around Nailling Drive in Union City.
It was reported that Johnson, a U.S. Navy veteran, may be in need of medical care and medications.
Johnson graduated from the Union City School System. He attended the University of Tennessee at Martin while serving in the Union City-based Tennessee Army National Guard unit. He served 11 years in the U.S. Navy on a nuclear submarine and various ships.
Johnson’s sister, Lynn Johnson-McBee of Smyrna, told The Messenger in July that her brother is “very intelligent, a gifted artist, a terrific cook by trade and a wonderful human being who just happens to suffer from bipolar, depression and schizophrenia disorder, as well as alcoholism.”
Johnson was released by the Navy as a result of unstable behavior; however, he never received treatment. Seven years passed before the Navy named him a disabled veteran of the armed forces, according to Ms. Johnson-McBee, who said her brother’s mental health had diminished by that time.
Ms. Johnson-McBee told The Messenger the family will now work to get Johnson back to the VA hospital to be stabilized and eventually into a residential care facility.
“I thank God that we are getting the opportunity to do that,” she said.
Published in The Messenger 9.28.12

"Legislation passed in April allows the Tennessee Department for Mental Health to fund a pilot program at the Helen Ross McNabb Center in Knoxville. The program can only serve 10 patients at a time for the next two years. The legislation went into effect July 1. Despite the program, families like the Johnsons want more to be done. Shes asks that you contact your state representative and ask them to support a law authorizing Assisted Outpatient Treatment for the state of Tennessee."

Family seeks information about missing son, veteran

Family seeks information about missing son, veteran | Darric Johnson
The family of a Union City man is looking for their loved one and needs help from the community.
Darric Johnson, a U.S. Navy veteran, was reported missing to the Union City Police Department on July 2. His family last saw him at the end of May when he was evicted from his apartment on Washington Avenue.
Local residents may have seen Johnson before without realizing it. Some people know him as “the black guy often seen on Reelfoot Avenue bouncing a basketball and talking to himself,” says his sister, Lynn Johnson-McBee of Smyrna.
Johnson graduated from the Union City School System. He attended the University of Tennessee at Martin while serving in the Tennessee National Guard based in Union City. He served 11 years in the U.S. Navy on a nuclear submarine and various ships.
She said her brother is “very intelligent, a gifted artist, a terrific cook by trade and a wonderful human being who just happens to suffer from bipolar, depression and schizophrenia disorder, as well as alcoholism.”
Johnson was released by the Navy as a result of unstable behavior; however, he never received treatment. Seven years passed before the Navy named him a disabled veteran of the armed forces, Ms. Johnson-McBee said, adding, “By this time, Darric’s mental health had diminished.”
The Department of Veteran Affairs handles Johnson’s living expenses and medical care and, according to Ms. Johnson-McBee, they have not returned calls asking for assistance or emergency help on his behalf.
“Darric, like others with service and non-service related mental illnesses, cannot differentiate between reality and delusion. Rather than believe that they are ill, they choose to believe the voices in their head and are reluctant to seek or accept help,” his sister said.
“Since Tennessee law does not authorize assisted outpatient treatment, it is difficult for families to force individuals like Darric to seek medical attention although the illness may be obvious, these people often become the homeless ‘crazy’ no-name, no-face individuals wandering our streets, responsible for violent acts or wrongly incarcerated, when they should be in a hospital or on medication.”
She said because of the lack of medical help with his condition, Johnson has been held in the Obion County jail at least five times.
“Unfortunately, Darric is only one of many U.S. veterans to have his life forever altered by mental illness,” she said.
Tennessee is one of six states that does not authorize Assisted Outpatient Treatment, which is court-ordered treatment for individuals who have a history of medication noncompliance.
Studies from states with AOT show it is effective in reducing the incidence and duration of hospitalization, homelessness, arrests and incarcerations, victimization and violent episodes.
Legislation passed in April allows the Tennessee Department for Mental Health to fund a pilot program at the Helen Ross McNabb Center in Knoxville. The program can only serve 10 patients at a time for the next two years.
The legislation went into effect July 1.
Despite the program, families like the Johnsons want more to be done.
“Waiting around for the governor to approve a two year wait-and-see program is not enough,” Ms. Johnson-McBee said.
She asks that residents contact their state representative and ask them to support a law authorizing Assisted Outpatient Treatment for the state of Tennessee.
If anyone sees Johnson or has information about him, they are asked to contact the Union City Police Department at 885-1515.
Published in The Messenger 7.26.12

Tuesday, October 2, 2012

Shootings Expose Cracks in US Mental Health

CARLA K. JOHNSON - Associated Press (AP)
Monday, October 1, 2012

MINNEAPOLIS (AP) — Andrew Engeldinger's parents pushed him for two years to seek treatment for what they suspected was mental illness, but even though he became increasingly paranoid and experienced delusions, there was nothing more they could do.

Minnesota law doesn't allow people to be forced into treatment without proof that they are a threat to themselves or others. Engeldinger's parents were horrified last week, when their 36-year-old son went on a workplace shooting spree that led to the deaths of a Minneapolis sign company's owner, several of his employees and a UPS driver. Engeldinger then killed himself.

"They wanted him to get treatment. They wanted him to get help," said Sue Abderholden, the executive director of the Minnesota chapter of the National Alliance on Mental Illness, who has acted as a family spokeswoman.

She added: "You're not going to convince someone they're ill if they don't want to believe it."
This is a problem faced by many friends and relatives of people suffering from mental illness, along with the police officers and health care providers to whom they turn for help. While a small number of people with mental illness commit acts of violence, the difficulty of securing treatment and ensuring it is successful — and the catastrophic consequences of failure — are common threads that often link such outbursts.

"These are not random acts of violence," said Dr. E. Fuller Torrey, a psychiatrist at the nonprofit Stanley Medical Research Institute in Maryland. "It is my personal belief that these episodes will increase in number and severity and will continue until we figure out what to do about it."

Engeldinger was never formally diagnosed with a mental illness, but his family was concerned enough by their son's behavior, which included claims that he was being followed, to enroll in a free, 12-week course for loved ones of people with mental illness before he cut off contact in late 2010.

His willful estrangement kept his parents from the basement of his small bungalow, where police said he stockpiled 10,000 rounds of ammunition and a second gun on top of the 9mm Glock semi-automatic pistol he used in Thursday's shooting. Without evidence that he was a threat to himself or others, they were unable to force him into treatment under Minnesota law.

A successful patients' rights movement in the 1970s made it difficult — and illegal in some states — to force a person into treatment unless he or she was homicidal or suicidal. Dr. Darold Treffert, a Wisconsin psychiatrist, coined the phrase "dying with their rights on" in 1974, after collecting stories of people who didn't qualify for involuntary commitment and later killed themselves.

In the years since, 41 states have added "need for treatment" standards to their laws that allow more individuals to be placed into court-ordered treatment programs. Minnesota is not among them.

"The pendulum is slowly returning to a reasonable balance," Treffert said. "I have comforted myself on this long mission with the realization that some things can be learned and can't be taught. We do seem to be learning slowly from tragedies."

A sly suggestion from a police officer led Kevin Earley's father to lie and say the young man was violent so that he would get treatment. Earley, then 23, was arrested after breaking into someone else's house to take a bubble bath.

"He said, 'Unless you tell them your son threatened to kill you, they won't admit him and we'll take him to jail, and you don't want that,'" said Pete Earley, an author in Fairfax, Va., who has written about his son's experience in the mental health care system.

Kevin Earley was seeing secret messages all around him, but his father never heard his clearly psychotic son threaten himself or others.

"I went in and I lied. And that got him into the hospital," Pete Earley said.

But just getting patients diagnosed or enrolled in treatment often isn't enough. Virginia Tech gunman Seung-Hui Cho was ordered into outpatient treatment before he killed 32 people in 2007.

This summer, prosecutors say, James Holmes killed 12 people at a midnight premiere of a new Batman movie in Colorado. His attorneys say he had an undisclosed mental illness, and his psychiatrist tried to report him to a campus behavioral and security committee.

Experts say it can take years before patients agree to stick with a prescribed treatment. Elyn Saks, a law professor at the University of Southern California, has schizophrenia and, without medication, starts to believe she can kill hundreds of thousands of people with her thoughts. Until the mid-1990s, when she was in her 40s, Saks tried periodically to skip her drugs.

"I felt so ashamed," said Saks, a MacArthur Foundation "genius grant" winner for her contributions to mental health law. "It's an internalized stigma. I wanted to be whole, I wanted to be well. Each time I tried to get off medication, I did it with great gusto and failed miserably." Now, she takes her pills. "Frankly, I'm sorry I wasn't smarter sooner."

Earley initially didn't stick with treatment after his father lied to get him into a hospital. He became violent — he was shot with a Taser by a police officer at one point — and was hospitalized five times before he realized he couldn't live without his medication.

"I know I have a mental illness and if I leave it untreated it will destroy me," said Earley, who now works full time as a peer counselor in Fairfax County, Va., helping others with severe mental illnesses. With treatment, he said, "I have my own apartment, a car ... I'm able to do things with friends and family. I have a job I can go to that gives me pride."
AP Medical Writer Carla K. Johnson reported from Chicago. She can be reached at:
Condon can be reached at: