Friday, January 28, 2005
Treatment Advocacy Center Newsletter Dec. 24, 2004
TREATMENT ADVOCACY CENTER
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December 24, 2004
1. SUFFERING MINDS ? Miami Herald, December 12, 2004
2. MENTAL ILLNESS PUSHES FAMILIES TO THE LIMIT - Miami Herald, December 19, 2004
3. WHAT TO DO WITH THE FUNCTIONAL BUT NOT SANE ? Miami Herald, December 19, 2004
1. MIAMI HERALD, December 12, 2004
[Editor?s Note: In the last two weeks the Miami Herald has turned to those most overcome by severe mental illness and left without treatment by laws that promote psychosis over care and a system that ignores many of the sickest until a law is broken or about to be.
This irrational dichotomy leaves Castleberry Mejias ? about whom a store owner laments, ``But he has no sense'' ? adrift in psychosis. At the end of this piece, you learn on what shore he lands.
This article includes commentary from Rosanna Esposito of our Center.]
The Amount Of Money Spent On Mental Health In Florida Is Among The Lowest In The Country, Leaving The Seriously Ill To Drift Into Oblivion
By Joe Mozingo
He roams his corner of Little Havana, cursing, drinking, pulling his pants down in the street -- a menace with nothing to show for 54 years on Earth but his schizophrenia.
In the small, disordered world of Castleberry Mejias, there is no barrier between real life and the sound and fury of his own imagination.
Mejias has followed the distortions of his mind to jail at least 35 times and an additional two dozen times to Jackson Memorial Hospital's mental health crisis center. He was once arrested trying to light a Dollar Discount store on fire because he wanted a cigar to heat up his ``frozen lung.''
Across Florida, there are at least 25,000 people like Castleberry Mejias -- lives reduced to homelessness and jail by a mental illness that many of them do not understand they have.
Two decades of broken promises and budget cuts have made the untreated poor an accepted staple of life in Florida -- filthy apparitions sleeping in the shadows, muttering aloud, smoking crack to fight off the disembodied voices in their minds.
''The mental healthcare system is in shambles,'' said Michael Mathes, former president of the National Alliance for the Mentally Ill in Florida and current chair of its legislative committee. ``The most needy, the most seriously and persistently mentally ill, fall through the cracks. And people just turn their heads and ignore it.''
Per capita spending on mental health in Florida is lower than in 45 other states, and getting lower. New York spends five times what Florida does. Only New Mexico, Utah, Arkansas and West Virginia rank lower, according to 2001 figures analyzed by the Henry Kaiser Family Foundation.
At a time when psychotropic medications are more effective than ever, an estimated 171,000 people with serious mental illness in Florida do not get the publicly funded treatment they need.
Those with the condition known as anosognosia -- the inability to recognize your illness -- suffer the most, because they often refuse treatment. Only when they commit a crime or pose a threat can they occasionally be forced on medication.
The wretched reality behind the numbers is startling.
Rodney Brown is 51 years old and wears a spaghetti strainer on his head to keep the ''bubble men'' from stealing his thoughts.
He has made a home office out of the oil-stained parking lot behind a Speedy Food drive-through, right next to Interstate 95 near North Miami.
''I put my notes in there,'' he said, pointing to a trash bin. He wears the plastic guard of an old fan as a shield.
Brown has been homeless since he was 18. He has never been treated and is surprised when a visitor asks if he has ever been diagnosed with schizophrenia.
''Like you're crazy or something?'' he said, twirling his finger around his ear. ``Nah.
``When I was walking by the church, an invisible person stuck something in my ear. One of the bubble people. They come in a flying saucer.''
Day and night, burning heat, driving rain, Brown sits in the same spot, flattening cans, smoking cheap cigars, tending a group of kittens. When two of them are hit by cars, he dutifully buries them in the weeds with a spoon.
Sami Ahmed, the owner of Speedy Food and a native of Pakistan, looks after Brown, but can't understand how someone can get so stuck in such a wealthy nation.
''He isn't causing trouble for anyone,'' Ahmed said. 'He needs help. I ask the police, `Why don't you take him to the shelter and get him some treatment?' They say they can't if he doesn't want to go.
``But he has no sense.''
Brown says he would go to his mother's house in Carol City, but the Speedy Food needs him to look after the place.
``I'm going to go see her. I ain't been there for so long.''
He doesn't know the house is vacant. His mother died in June.
Brown is just one of the many psychiatric castaways drifting in the neighborhood.
Three blocks away, Alexander Horn chews a wet cigarette after a heavy storm in July, resting on a sponge of a mattress under a tree off Northwest Seventh Avenue. He has one shoe on, his pants are tied together with electrical wire, and he is typing furiously on a battered husk of an old keyboard.
Horn is 50 years old and has been homeless since his mother died in 1992, the saddest day of his life.
His hands tremble and his tongue circles heavily in his mouth. He is thin as a scarecrow and disoriented, his eyes half-lidded.
''I'm just sitting here reading my Bible,'' he said. `I don't mean no harm.''
The Bible is a crumpled, water-stained Jehovah's Witness magazine. He is reading it upside down.
''I got good sense,'' he said. ''If I want to go to a shelter, I'd go find one.'' When people stop to help him, he thinks they are police trying to put him in jail. He has been there as often as he has been to a shelter, and he likes neither one.
``That's just the way it is, I'm alone. I ain't got no problem being by myself.''
A few minutes later, he is bellowing and slamming at the broken keys of his keyboard, sprawled on a sidewalk as the sane world streams by down on the avenue.
In the eyes of those who try to care for them, people like Horn and Brown are modern-day versions of 19th century lepers, forsaken by society because of a false stigma.
''It's a banishment of people whose symptoms are considered so repugnant and fearful they are judged to deserve their fate,'' said Mathes of the National Alliance for the Mentally Ill.
With more people going untreated, the state's mental health budget is increasingly consumed by crisis.
Under Florida's Baker Act, authorities can involuntarily commit people to a crisis center for 72 hours, at the most, if they are a threat to themselves or others.
Back On The Streets
For most homeless people, this is the only exposure to behavioral healthcare, and it is usually very brief, with no follow-up. The moment the patient is calmed down, he must be released.
Police are appalled to find that the person who was raising hell on their beat in the morning is back on the streets in the afternoon. Families sigh as their tormented son or daughter arrives on their doorstep -- untreated -- hours after being taken away.
''It's a terrible drain on resources, not to mention continued suffering, for people to be cycling in and out of crisis care and never getting treatment,'' said Rosanna Esposito, a staff attorney for the Treatment Advocacy Center, a Virginia-based nonprofit organization.
In 1997, 69,235 Baker Act commitments were initiated in Florida. By 2002, the number had climbed to 105,062.
Tragically, some of those hospitalizations involve the same people going into crisis over and over again. A study by the University of South Florida found that 540 people in the state were hospitalized at least eight times each during a two-year period. And still, no one could force them to take medication.
Psychologists say there is a solution. They point to various ''assertive community treatment'' programs around the nation in which case managers are assigned to the persistently ill and make sure that they find housing and stay in treatment.
But such programs are costly because they require constant follow-ups. And states, including Florida, have provided only limited funding.
''What's really sad is recovery is possible,'' said Xavier Amador, a Columbia University psychology professor and author of a book on anosognosia.
No one witnesses the futility of the revolving door more than street cops.
''You more or less know the addresses already when the call comes in,'' said Miami police Officer Mario Garcia.
One January afternoon, Garcia is on patrol in Little Havana. He is talking about a particularly troublesome case.
''You Baker Act him, you Baker Act him, you Baker Act him,'' he says. ``His name is Castleberry.''
Within hours, a call comes from the Fronton Bar at 12th Avenue and Flagler Street. It is 6:30. Garcia knows the address. He knows who it is.
Castleberry Mejias is already in custody when Garcia gets there.
He threatened to kill the woman who owns the bar with a knife he did not have.
He is charged with felony stalking and taken to the Miami-Dade County Jail.
Paranoid schizophrenia has laid waste to Mejias' life since he arrived from Cuba during the Mariel boatlift of 1980.
He has nothing else left.
He was once a mechanic and father and husband.
Now, he doesn't have a single friend. He has not seen his four children, Claris, Ana Iris, Wilfredo and Gladis -- their names tattooed prominently on his arms -- for 24 years.
`She Never Writes Back'
If he could arrange his thoughts into an unbroken line, he could call 411 and find Claris in New Jersey or his aunt Iluminada in Puerto Rico, for whom he has been searching for more than a decade.
''I wrote to her, but she never writes back,'' he says in jail after his arrest. He shuts his eyes and sobs.
Mejias has heard voices since he was 19. He has been medicated only while in custody, convinced that the doctors give him pills for ''sleeping problems.'' He stops taking them the moment he is free.
''When he takes his medication, he's under control,'' said Miami police Officer Jose DaPena, who has played a cat-and-mouse game with Mejias for years. Without it, ``he's a time bomb.''
Mejias has thrown chunks of concrete at moving cars, lunged at people with broken beer bottles, slammed windows with a metal pipe. A lump on his head commemorates the time a bartender subdued him with a pool cue.
DaPena takes Mejias to the hospital whenever he sees him start to act up.
'I go to the crisis center and they say, `How come you keep bringing back this person?' '' DaPena said. ``I say, `Why do you keep releasing him?'
``The citizens call me. They say he's throwing rocks. What am I supposed to do?''
After his arrest this January, Mejias' stalking charge was dropped, but he stayed in jail on a probation violation as prosecutors looked for a way to get him into treatment. He stayed for nine months. Still, there was no program to accommodate him.
On Oct. 5, Mejias did what so many other Floridians with severe mental illness do.
He went to prison, where he will stay for 4 ½ years.
2. MIAMI HERALD, December 19, 2004
[Editor?s Note: In the first piece above the Herald?s Joe Mozingo concentrated on those who are homeless because of a severe mental illness. In the one below, he takes a graphic look at several people stuck in the ?back bedroom.? As is often said, serious psychiatric disorders strike not just individuals but whole families.]
MENTAL ILLNESS PUSHES FAMILIES TO THE LIMIT;
Across The Country, The Families Of The Seriously Mentally Ill Are Stuck In An All-Consuming Struggle To Save The Sick From Themselves.
By Joe Mozingo
Bill Weaver Jr. could see the devil in his old man's eyes. Weaver lashed out at his father's every move and turned his retirement into an endless misery.
Alone together in their condo in western Miami-Dade County, they were locked in a pitched psychological war. One night, Bill, who is schizophrenic, leapt out of the dark and tried to smother 77-year-old William Weaver with a blanket.
Weaver escaped his son and called police, hoping the criminal justice system would help him -- a move he will forever regret.
In the psychiatric ward of the Dade County Jail, Bill dived headfirst from his bunk bed in a manic fit, hit the rim of the toilet and broke his neck. Doctors don't know if he will walk again.
Like so many others, the tragedy lays bare the perils of untreated mental illness and highlights the desperate struggle of relatives to get a disturbed family member into treatment.
Florida's poorly funded and fragmented mental-health system, combined with laws that protect the rights of people to refuse treatment no matter how dysfunctional they are, all but block the path to sanity.
''The law protects the right to be psychotic,'' said Rachel Diaz, who runs a group in Miami called Families of Untreated Mentally Ill Persons. ``Even though, by definition, they are not able to think clearly, we give them that choice.''
At a time when new medications can do more than ever, an estimated 92,000 adults and 79,000 children in Florida with serious mental illness do not get the treatment they need.
The social consequences are disastrous: rampant homelessness, suicide, drug abuse, prostitution, overcrowded jails, tragic police shootings.
But one consequence of a deficient system is kept vigilantly behind the closed doors of thousands of homes: the ceaseless, all-consuming battle families fight to keep those they love from becoming a part of these statistics.
They give up jobs and personal lives. They secretly slip their children medication. They battle to convince the afflicted that they are sick, only to be berated, accused of persecution. They pray when their troubled children disappear for weeks and brace for the storm when they come back.
Years and decades pass and their adult children are still at home going through the same tortured cycles.
''It's living with a person who insults you, who doesn't obey you, who doesn't appreciate you, who doesn't love you,'' said Diaz, 80, whose husband is schizophrenic. ``It's a miserable life.''
Weaver tries to roll with his son's hostility. Since the accident last year, he visits Bill, now 44, at a nursing home in Allapattah three times a week.
Thursday, he took him a lottery ticket. Bill appreciated the visit at first. But his thoughts quickly took a turn.
''I wish you would die,'' he said, rasping through a dry throat. ``Go home and die. You ruined my life. I really think you are the devil.''
The two argued for a half hour.
''Maybe I'm wasting my time,'' Weaver sighed. ``He doesn't seem happy to see me.''
Nationwide, an estimated 4.5 million people suffer schizophrenia and manic depression. Half do not have the ability to understand that they are sick, experts say.
''It's a real dramatic inability to see what's so obvious to everyone else,'' said Xavier Amador, a Columbia University psychology professor and author of the book I Am Not Sick, I Don't Need Help!
``You hear the same stories over and over and over.''
The last year of Maria Santos' life has been a case study in how a family gets stuck in a psychiatric sinkhole.
No matter how many people tell her 28-year-old son Frankie that he is schizophrenic, no matter how many times he ends up in a crisis center, no matter how many times he is locked in jail for disorderly conduct, he refuses to believe he is sick.
''They call me a schizo,'' he whispered to a reporter in November. ``I think I'm just thinking outside the box.''
He lives at his parents' Southwest Miami-Dade home, cannot hold a job and considers himself a ''scholar warrior.'' He thinks God ''inserted'' him on Earth for a divine intervention. He is festooned with grandiose tattoos -- the words ''King One'' cover the side of his neck.
Frankie experienced his first psychotic episode at 18, and he lay naked in a fetal position in his bedroom for days.
Santos is at her wits' end. She watched Frankie's schizophrenic father drive himself into homelessness.
To keep Frankie from the same fate, she is a full-time mom with no end of her work in sight. She has no friends, no hobbies, no job. She's always strategizing, slipping him medication, anticipating the next eruption. The schizophrenia never rests.
And on Dec. 5, 2003, it detonated out of her reach.
A Painful Case
The family was flying back from a wedding in Spain. Frankie began acting up on the plane. Before anyone could restrain him, he punched a passenger in the face several times.
The U.S. attorney indicted Frankie for assault. He was placed under house arrest until his sentencing, scheduled for June 1 of this year.
But for someone with a deteriorating state of mind, rules and court conditions are abstractions easily lost in the throes of psychosis. And that's what happened to Frankie just weeks before his hearing.
''He started going crazy,'' said his stepfather, William Santos. ``He was convinced he was Jesus Christ.''
Frankie stormed through their home, kicking walls, slamming doors, screaming at voices. He took a steak knife to the electronic monitoring device on his ankle.
William called 911.
When police arrived, Frankie shouted obscenities and kicked in the air, as if he were a martial-arts master. Miami-Dade police shot him with an electrical stun gun, handcuffed him and took him to Jackson Memorial Hospital's crisis center.
U.S. marshals removed him the next day. Frankie's acts of psychosis violated the terms of his house arrest.
He spent the next five months in federal custody -- shipped from Miami to Atlanta to North Carolina to Oklahoma -- getting psychological evaluations for an illness everyone knew he had.
His time in custody cost taxpayers at least $10,000, and Frankie came out unmedicated and on the same destructive trajectory he was on before.
At his sentencing hearing on Oct. 15, Maria Santos took the stand and begged the judge to not give Frankie probation. She knew he would violate it.
''He is very, very sick,'' she cried in broken English. ``He is crazy. He need medication for a long, long time. Please, please.''
She wanted the judge to commit him to a state hospital.
She continued: ``For 10 years, he goes to the jail. He goes to my house. He goes to jail. He goes to my house.''
But U.S. District Judge Alan Gold didn't have a legal reason to hospitalize him, and he didn't want to release him altogether. Gold gave Frankie 2 ½ years' probation and ordered him to see a psychiatrist and call his probation officer every day.
He was released that day.
''Back to square one, back to square one,'' William Santos sighed.
At home, Maria Santos immediately began slipping medication into Frankie's Malta Goya drinks. She had no other choice. This kept Frankie marginally in control. But by the end of the month, he spotted some sediment in the glass. He stopped eating and drinking anything his mother gave him.
Earlier this month, Frankie holed up in his room, blasting music. Maria opened his door. Beer was all over the place. He had defecated on the floor.
He was yelling and cursing.
``Get out of my life! Leave me alone! I'm sick of this life!''
''We don't know what to do,'' said William Santos. ``Nobody seems to know what to do.''
Frankie landed -- again -- in Jackson's crisis center, where doctors forcibly injected him with Depakote, a mood stabilizer. His mother took him pizza and clothes, but he glared and blamed her for his confinement.
He was released Wednesday -- back home.
Even as science increasingly reveals that schizophrenia and bipolar disorder are medical conditions, mental illness still carries the false stigma of moral defect, flawed character, weak emotions, murky souls -- Boo Radley locked up in his home in To Kill a Mockingbird, a shame to his family and a boogeyman to everyone else.
''We're a religious society,'' said Irene Darmstedter, of Miami. ``A lot of people think it's evil, that it could be demon possession.''
Darmstedter has to fight to make people understand that her daughter Denise, once an honor student and drill-team leader, didn't choose to drop out of college and sleep on the streets of South Beach.
'My mother is always saying, `Why don't you just give up? She's a bad girl,' '' Darmstedter said.
Denise first showed signs of schizophrenia as a freshman at Florida International University. Her thoughts became bizarre and paranoid. She told her mom one day that the clubs in Miami Beach were drugging young people so the government could control them.
Within weeks, she plunged into psychosis and took off on a bicycle in the night.
No one knew where she was until someone found her, days later, walking along Florida's Turnpike covered in blood. She had cut her wrists.
Denise was taken to the hospital, where she was diagnosed with schizophrenia.
''All she would do is pray Hail Marys and Our Fathers and stare at light,'' Darmstedter said.
Denise was given medication, but she refused to take it. After her release, she drifted into homelessness.
There was nothing Darmstedter could do to stop the decline. She was still grieving over the loss of her son, who died of bacterial meningitis at 15. Now her daughter was dirty and homeless, her nails long and curled ``like a troll.''
''It was a horrible time,'' Darmstedter said. ``We'd see her muttering to herself on Lincoln Road.''
Only when Denise became totally psychotic could Darmstedter get her briefly hospitalized under the state's Baker Act. But each time she calmed down and was no longer a threat, she was released, as the law requires.
Back on the streets, she hurtled toward the next breakdown.
''My son's death was devastating, but this is harder,'' Darmstedter said. ``It goes on and on and on.''
Up And Down And Up
The most painful part for Darmstedter is that she has seen how well her daughter does on the medication. Three years ago, Denise was injected with a long-lasting antipsychotic, Prolixin, and the results were dramatic.
She came back home, applied for a federal Pell grant, went to Miami-Dade Community College and was back to getting A's.
Then a boyfriend convinced her to stop taking medication. ''He told her diet and exercise would take care of it,'' Darmstedter said.
Denise ran away, moved back home, ran away again. She blamed her mother for everything. She broke into her house, vandalized her car, had fits of forced vomiting.
''It was like the scene in The Exorcist,'' Darmstedter said.
Denise bottomed out in November. As Darmstedter and her husband were heading out to a prayer group, she showed up at the door saying she wanted to come home.
Denise, now 29, agreed to take medication. This month, she got a job as a waitress.
Darmstedter is hopeful, but always wary. Lucidity brings its own brand of pain.
''Now she's just so embarrassed and ashamed of everything she did,'' Darmstedter said.
3. MIAMI HERALD, December 19, 2004
[Editor?s Note: The preceding stories clearly detail the plight of those homeless with mental illness and the families who give so much to seek treatment for loved ones. The Miami Herald editorial board added its voice, calling for better assessments and increased funding to help those detailed in the previous stories.
We've heard from the Herald?s Board in previous editorials; it weighed in several times for Baker Act reform. Starting on January 1, 2005 those Floridians with severe mental illness who need treatment, have repeated admissions for treatment, and whose illness prevents them from accessing services will be supported by a new law that is designed to offer them more effective treatment. Assisted outpatient treatment will be available in Florida. We are hopeful that this reformed law will bring a happier new year to those it touches, which may very well include one or more of the individuals included in the preceding stories.]
WHAT TO DO WITH THE FUNCTIONAL BUT NOT SANE
Our Opinion: Start With Assessments And Funding For Mentally Ill
Throughout Florida -- and especially in South Florida -- thousands of people roam the streets in a perpetual state of psychotic confusion. They rant and rave, hallucinate, react to strange voices and behave inappropriately. To ordinary passersby, they are clearly insane and in serious need of care and treatment by trained professionals.
But to the state of Florida, these homeless wanderers aren't insane enough to be committed to a state psychiatric hospital nor are they violent enough to be sent to a forensic institution. Many of them suffer from a condition called anosognosia -- an inability to recognize one's own illness. To the state, that denial of illness translates to a rational decision by these wandering psychotics to act in their own best interest. Civil libertarians defend the practice as a positive right to be free and independent in our free society.
But something is seriously wrong with this picture. At minimum, these psychotic nomads -- estimated to number more than 25,000 in Florida -- are a nuisance to themselves and to others. They bellow in the streets, bang their heads against walls, frighten children and the elderly, ingest too much alcohol and drugs, and expose themselves in public.
The Herald described the lives of some of these people and Florida's meager spending on care for them in stories last Sunday by reporter Joe Mozingo. One conclusion is inescapable: These victims are a danger to themselves and, potentially, to anyone who comes near them. The disregard shown to them by a wealthy state in a powerful nation that calls itself civilized is a shameful disgrace. That we don't take better care of these marginally functional but clearly disturbed people reflects our own failure to cope with an inconvenient reality.
What is needed is a comprehensive review and reassessment of mental illness in Florida, a kind of statewide audit of needs and services, followed by enough funding to treat all of Florida's mentally ill. Leadership must come from state lawmakers and the governor.
Florida's recent history of dealing with the insane is a story of good intentions and bad, with some good results and some colossal failures. Until the 1970s and '80s nearly all of Florida's mentally ill were placed in state mental institutions dedicated to their treatment. Abuse was rampant in many of the facilities, and demands for change led to an overhaul in which treatment of mentally ill people was shifted primarily to private community mental-health centers, the system that exists today. Meanwhile, the state continues to treat violence-prone and severely mentally ill in state-run institutions.
Unfortunately, state funding of the community centers hasn't kept pace with either inflation or the growing number of patients with mental illnesses.
With more precise assessments and appropriate funding, Florida can do a better job of identifying and treating persons with mental illnesses, including those on the margins who think they are sane.
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