Op-Ed: Find state funds for mental health care that works

Lexington Herald Leader Jan 2, 2012

Posted: 12:00am on Jan 2, 2012; Modified: 1:38am on Jan 2, 2012

By: GG Burns

A home, effective treatment and a chance to contribute to the greater good — that's what it takes to recover from mental illness.

2012-01-02T06:38:48Z

By GG Burns

Against the odds, people rebuild their lives after the devastation of illnesses like bipolar disorder, schizophrenia or depression, but finding effective treatment and wraparound services is key. Kentucky has some outstanding programs, but the dollars haven't increased since 1995. In fact, the dollars have shifted to the justice system.

Thanks to professional support, self-determination and a safe home managed by New Beginnings Bluegrass Inc., many people are on the road to recovery. New Beginnings, a non-profit agency, supplies housing and support services in Fayette County for people diagnosed with mental illness. From New Beginnings' success rates, we can learn how housing and treatment work and assist individuals to become productive citizens.

Consider the example of Peg. For more than 20 years, she survived a hellish existence trapped in the revolving door of jail, homelessness and hospitalizations. Now she is living a rewarding and independent life surrounded by friends, her pet and a support system, which includes treatment from the Bluegrass Mental Health-Mental Retardation Board. Today, Peg regularly gives back to the community by volunteering at Saint Joseph Hospital, her church and the National Alliance on Mental Illness.

According to a recent report by NAMI, Kentucky maintained state spending for non-Medicaid mental health services from 2009 to 2011. However, the state still shortchanges mental health, ranking 46th nationally in per capita spending. Nationwide, cuts in 2012 totaled $1.6 billion. NAMI appreciates the efforts of Gov. Steve Beshear and the Kentucky legislature to maintain the mental health safety net, but in this distressed economy, more people than ever need help.

The NAMI report "State Mental Health Cuts: The continuing crisis" (www.nami.org/budgetcuts) describes threats to Medicaid, the largest payer for public mental health services. Following the loss in June 2011 of "enhanced" federal Medicaid matching funds, part of economic stimulus legislation, Kentucky's budget was squeezed by an estimated $159 million.

To meet fiscal challenges, Kentucky Medicaid is moving to a managed-care approach where the state pays a set "capitation rate" for every person enrolled in Medicaid. NAMI is worried. Kentucky is saving money by contracting with for-profit, managed-care companies, but does this just push the problem downstream? Will community mental health providers be squeezed to enable the for-profit companies to meet the terms of the contract?

Lack of mental health funding leads many who don't get the care they desperately need to fall into the criminal justice system. According to a recent report from Clinical Psychiatry-News, more than 800,000 people with severe mental illness are jailed annually in the United States.

Mental illness is a disease, not a crime. It is wrong to allow the criminal justice system to be the default mental health safety net simply because we don't have the will to adequately fund mental health services.

The Kentucky Department of Public Advocacy reports that a large percentage of its clients appear to be suffering with some form of mental illness. This illness can take the form where the person is not competent to stand trial, or was not well enough at the time of an event to appreciate the criminality of the actions. Further, many clients still suffer from mental illnesses, but those illnesses do not qualify under the legal definition of insanity. However, their mental illness can many times explain the criminal action. Also, the Kentucky Department of Corrections runs a separate psychiatric facility in La Grange for offenders with mental illness.

On average, it costs taxpayers from $16,000 to more than $30,000 a year to house an inmate in a Kentucky prison.

Ginny Vicini, executive director for New Beginnings, reports that 40 percent of the people in its program had a history of incarcerations before moving into New Beginnings. In the past three years, none have been reincarcerated.

While best practices exist in some regions, the lack of adequate funding continues to plague operations. Efforts to spread good models to more communities are on hold.

Kentucky needs to strengthen effective mental health programs. People's lives hang in the balance. We have moved from de-institutionalization in the 1970s, to trans-institutionalization today. How humane is it to allow lives to be wasted in prisons instead of funding Kentucky's mental health budget?

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GG Burns of Lexington, is an artist and mental health advocate for the National Alliance on Mental Illness Kentucky. She volunteers as the NAMI State Advocacy Network Representative
and is the Founder of: Change Mental Health Laws in Kentucky Blog

Grappling with mental health's most vexing question: Who is dangerous? What is Imminent Danger?

If we are going to sincerely respect the dignity of ALL LIFE, the laws and treatment of individuals with severe and persistent mental illness. our laws NEED Changing for both the health and safety of the severely mentally ill and for everyone.

Part 1: A legal ruling gone awry
Forty years ago, a new legal standard for commitment rose from a Milwaukee lawsuit to become the law of the land. It has proved to be tragically inadequate.

Part 2: A search for solutions

As society struggles with how to determine who is dangerous, programs from special courts to crisis intervention training aim to make a difference.

Click here to view the documentary:
Stories of how the system has failed, and what we can do about it.

An Expert on Recovery ~ living a life to its fullest with a mental illness

I want to introduce you to one of my heroes. The story of Harold Jarboe's life inspires me each day to never give up hope. No one can be around Harold without feeling energized by his positive enthusiasm and zest for life. I am proud to know Harold and am honored that he wanted to share his "story of recovery" on my Blog.

Several years ago, Harold and I discussed my creating a website to help educate people about Assisted Outpatient Treatment, AOT. We talked about how some people who are surviving mental illness do not understand the need for AOT. One of the biggest misconceptions of AOT is that individuals are going to be forced to do something against their will. My conclusion regarding AOT is the lack of accessibility to housing, treatment and other resources for persons with mental illness, result in homelessness, incarceration or death. Harold's response was, "If I had not received assistance in the beginning of my journey, I would not be where I am today." Harold supports helping others learn more about the need for AOT in Kentucky.

My question to others who oppose AOT: Is it more humane to help a person over the bridge ... so they can gain access to "recovery" ... or allow them to waste their life? Read Harold's story and you decide. GG Burns, KY Mental Health Advocate
__________________________

My name is Harold Jarboe and I would like to share my successful story of recovery. It is my story of HOPE and resiliency.

Twenty-nine years ago, shackled like a wild animal, I was brought to the second oldest psychiatric hospital in the United States. The name of the hospital was Eastern State Hospital (ESH) in Lexington, Kentucky. I was in the throes of my first manic episode. I had lost control of my behavior, was in constant trouble and had even been arrested. It was like living in a horrible nightmare and I did not understand what was happening.

Since that time I have been hospitalized 9 times for manic episodes of bipolar disorder. Bipolar disorder is a chronic brain disease like diabetes, lupus or cardiovascular disease. It can start at anytime in a person's life and is a lifelong illness. It is not curable but is treatable with medications and psychotherapy. Many famous people live with bipolar disorder and have productive and successful lives. All those years ago I was too sick to understand that I even had an illness. I felt trapped. No one understood my situation.

In 1986 I found myself being transported, handcuffed, in the back of a police car again. Now I was homeless. What would I do? After 3 months I was discharged from ESH and went to a boarding home where I lived for over a year. It was just one small room but it was better than living in a cardboard box. During this time I often thought of suicide and wanted to end my miserable existence. I was depressed and lonely. I wanted to die to escape my pain. At times I was so horrified by the turmoil going on in my mind that I was not capable of seeing the light at the end of the tunnel. I had no hope. It was very challenging living in a large city, being so young, and dealing with a major mental illness with so few supports.

I finally decided to stay in treatment and realized that it was important to find the right medications. I tried living alone and on my own in an efficiency apartment for about a month. Later, I lived with roommates in a house owned by Mrs. Cruse. Attending individual therapy classes and having the support of Mrs. Cruse was a crucial turning point in my life. Later a counselor who worked at the Hope Center helped me find a job at Kroger. Next I moved into a supervised apartment program (SAP). I graduated from many programs because I wanted to get well. I hated being locked up, so I had to find a better way to live. The revolving door was not for me.

Had it not been for these programs and the assistance of people who believed in me, I might still be homeless today. Individual therapy helped me overcome my anxiety, my anger and other emotional challenges. It has all been worth it because I now feel relaxed and comfortable around people. I can now express my own personality. It feels so good.

Fast forward to 2011. My recovery has been an incredible journey; one full of many twists and turns. With the help of medications and therapy I have learned to live with a brain disorder. I know how to stay out of the hospital and have become a productive member of society. I always take my medicine and especially get enough sleep. I knew I needed to take responsibility for myself. I had dreams and told myself that I could never give up. I realized that I had to work hard and no one could do it for me.

Many people refuse to take medication for bipolar disorder due to excessive weight gain. I went to Weight Watchers® and learned how to eat healthy. I lost 40 pounds and know how to keep it off. I am a 19-month free lifetime member of the Weight Watchers program. I also smoked heavily for 13 years. With the help of the Cooper Clayton Method, I have not smoked in the past 16 years.

I feel so blessed every day. I have come a million miles in learning about my own recovery. One of my most proud accomplishments is that I have been hospitalized only once in the last nineteen years. I love my life and feel happy, productive and am glad to share my story with others. I do not drink alcohol or use drugs, but I do love to party. I am high on life and who needs more? I have worked at Kroger for 22 years and my financial situation is sound. The best part of my life is my wonderful wife, Angel. We have been married for 12 years. She is my angel! Her love and support mean everything to me. We just purchased our first home and really enjoy being homeowners.

I have learned the importance of giving back. I visit and give gifts to the elderly, cook special dishes for friends and volunteer as a photographer for a non-profit organization called the National Alliance on Mental Illness, (NAMI). I am also very honored to serve on the NAMI Lexington board, the past 3 years.

I am happy, optimistic, enthusiastic, energetic and confident about my future. I often say, "I am the happiest man alive."

My dream is for our society to accept that mental illness is just like other diseases. People diagnosed with mental illness are just like me. We are not a "mentally ill man" or a "schizophrenic woman." We would never label a person dying of cancer as a "cancerous" man or woman. My dream is for everyone who has a mental illness to be able to access treatment and housing, as I have been blessed to do. It seems horrible to know that now more people with mental illnesses live in jails and prisons than in other places.

Recovery is a life long journey, but it is possible.

My motto is: "Every day is a holiday, every meal is a feast and every night is New Year's Eve." We all need to work together to overcome the stigma of mental illness.
_____________________________

Published and produced by friends of the: Change Mental Health Laws in Kentucky Project, ALL RIGHTS RESERVED!

Clinical Psychiatry News Reports: estimates 1 million people with serious mental illnesses are housed in US's jails and prisons!

Severe Mental Disorders Highly Prevalent in Jails, Prisons : Clinical Psychiatry News

Ky. managed care a bureaucratic maze ~ OP-ED by Edward L. Smith Jr.

Back in May, I warned that Gov. Steve Beshear's move to managed care would have a substantial negative impact on Medicaid. My concern was that it will take existing dollars away from services to pay for a layer of bureaucracy between the Medicaid department and the Medicaid providers and that the bureaucracy would sop up about 20 percent of the Medicaid budget for fees and profits. I worried that any savings would come from cutting services.

Now that the program has been implemented, things look much worse. Many Kentuckians are going to be seriously hurt.

Beshear has contracted with three out-of-state for-profit managed care organizations — Coventry Health and Life Insurance Co., WellCare Health Insurance Co. and Centene Corp. Each has formed a Kentucky corporation and each is required to have offices in Kentucky. They are contracting with service providers.

In addition, Passport of Louisville, had its contract renewed for one year. It is owned by Louisville hospitals and covers Jefferson and 15 nearby counties.

WellCare and Passport had management problems and upper levels of management were terminated. WellCare had to pay a fine of $170 million for misdeeds in Florida. All of this managed-care contracting was done unilaterally by the administration; the legislature had nothing to do with it.

Usually, a contracting process takes a year to 18 months. However, Beshear gave the MCOs 90 days to sign up providers and organize their lists of people getting services. That period was extended to Nov. 1.

Under the program, providers of Medicaid services (hospitals, primary care physicians, behavioral health care centers and others) were required to contract with each of the three MCOs. This means each provider will have three service payers to contend with instead of just one as before.

Adding to the complexity will be the need to keep track of the people who move in and out of Medicaid and between each of the companies. This will cause poor continuity of care. People will be treated later in their illnesses resulting in more expensive types of treatment.

Beshear said Medicaid managed care would create about 550 new jobs. That will create a huge surge of hiring by the companies, the service providers and the Medicaid department. MCOs need staff to keep up with all of the payment, authorization procedures and their lists of clients. Providers need staff to keep up with the three MCOs, each with their own billing, client lists and authorization methods. And, Kentucky's Department of Medicaid Services staff will go up so it can review the work done by the MCOs.

The money going to Medicaid services will be reduced because of the MCO-related bureaucracies. Worst of all, the MCOs have instituted plans to deliberately reduce the number of people allowed to access Medicaid services.

The MCOs have said they plan to eliminate computerization for a time and require paperwork instead. The theory is paperwork will slow down the authorization process from days to weeks, which will discourage some people from applying for Medicaid. Hence, a "savings."

They plan to make the authorization process more stringent, thereby denying more people access to services. More savings.

They plan to tangle up the payment processes by denying coverage for people who have dropped out of Medicaid before payments are made, causing headaches for the providers of those services, and by refusing services to people who need to get back into the Medicaid program later. That will discourage people from applying. More savings.

Previously providers and the people they served only had to deal with Medicaid. Now, people are initially assigned to a MCO which contracted with the provider treating them.

But, providers may contract with all the MCOs. When people drop out of Medicaid, they have an option to go to a different MCO. People have until next January to switch. The cost of keeping track of all this will be staggering and deducted from services.

In sum, there will now be four bureaucracies, with each sopping up Medicaid money to pay for the bureaucrats needed to keep track of everything. Where will the money for the bureaucrats come from? From services, of course. On top of that, Beshear cut the Medicaid budget by 4.5 percent in May and has set a target of saving $40 million a month under managed care.

How can he do that? By reducing services again. Nice job, Governor.

Read more: http://www.kentucky.com/2011/11/28/1975305/ky-managed-care-a-bureaucratic.html#ixzz1f3mBwIfH

Insanity - the Definition of Kentucky's Mental Health Laws at Work

My Shattered Daughter, My Love!
Written by "a Mom" from Lexington, KY

The morning my sixteen year old daughter’s doctor called to tell me she had schizophrenia, will forever be burned into my mind. My life dissolved into a blur … of grief, anguish, fear, bewilderment and finally rage. She was a wonderful daughter, bright, kind and mature beyond her years. Her future had seemed bright. Researching everything I could find about her illness I read of horrible suffering, shattered lives, lost potential, homelessness, drug addiction, imprisonment and death. I read of shattered families, pushed to the brink, forced finally to abandon a loved one to their fate. Not my daughter, I vowed. NO. Never. Only over my dead body could this damned disease have my sweet and gentle girl. I put all my faith in the medication and waited for it to take effect, but she was rapidly going downhill. The delusions became stronger. The voices were demons tormenting her. More medications were tried, but nothing helped.

I tried, on her doctor’s advice, to get guardianship for her. I was denied. The ruthless voices intensified, endlessly screaming and tormenting her. She became increasingly confused, and forgetful, leaving food cooking on the stove. She would disappear, sometimes for days. Clozapine, an antipsychotic that often works when other meds fail, came to the rescue. She became hallucination free for short periods. Her obsession with religion abruptly stopped.

Her senses told her she was possessed. How could taking a pill help with that? She could hear them and feel them. How could she possibly trust anyone who said they weren’t there? No one understood her. She stopped going to therapy and stopped taking her medications. Instead, she began to self-medicate with alcohol and illegal drugs. She was an adult and I had lost all control. Seven hospitalizations followed over the next year. She wanted help … yet she lacked insight to her illness or the ability to follow up for treatment outside the hospital.

Next came the group home. It seemed like the answer to a prayer. My daughter needed supervision and I wanted her away from the bad influences on the street. I quickly realized my mistake. She was constantly criticized there, for not doing her chores on time, even for the clothes she wore. Her lethargy, forgetfulness, and lack of organization were interpreted as spiteful behaviors, not symptoms of her illness. The promised help to get her to appointments turned out to be a bus pass! The director stated, “My schizophrenics are all very smart and manipulative.” I found this ignorance disturbing in people who were supposed to be mental health professionals. They decided to evict her in spite of desperately needing help. The director stated, “It is my job to make sure she doesn’t die on my program.” It was not the only time someone would promise to help her, then, when the seriousness of her problems becomes apparent, back off and blame her.

I wanted my child back under the care of the doctor she’d had through adolescence, who had given her a measure of stability. She liked and more importantly trusted him. He had a way of getting through to her, but her Medicaid would not cover it, and she would not keep her appointments with a doctor at Comprehensive Care, nor would she take her medications. Yet again, she was hospitalized … this time at Eastern State.

Then came the expected downward spiral of her life, the self-medication, living on the streets and being raped twice! On a friend's advice, I had her admitted to Our Lady of Peace in Louisville. It had a long-term program for co-disorders; mental illness complicated by substance abuse. I hoped this time would be different, that they could engage her and somehow make her see she needed treatment. I prayed that she would be there long enough for treatment to begin to work. I knew how much she had suffered and hoped that she had finally had enough. She called within a week…demanding that I come get her.

One bitterly cold night, she left in anger, intoxicated. I knew that if she passed out outside she would freeze. I would rather see her arrested. I called the police. I was told that there was nothing they could do. She had the right to be as sick and self-destructive as she chose…whether she was able to make that choice or not. There was nothing I, nor they, could do. It seems Kentucky's policy on mental illness is almost as effective as Adolf Hitler’s.

Life at home was chaos. My daughter stopped making any effort to be a part of the family or to help out. She broke windows and doors and punched holes in the walls. Twice, she was arrested for shoplifting the alcohol she frantically needed. I tried tough love, although I doubted she had the ability to comprehend that her circumstances were the result of her own actions. I told her to leave.

Soon, my daughter was arrested for probation violation from the shoplifting arrests. Relieved, I hoped she would be court ordered into treatment. Yet instead, she spent two months in jail!

She was released in far worse shape than before. She truly believed she was surrounded by angels and demons .... and that I was a demon, and there was a man burning in hell right beside her. Another trip to Eastern State resulted in her being released, just a few days later. She attempted suicide. After two days in intensive care, she was sent back to Eastern State Hospital.

Insanity, I have heard, is doing the same thing over and over yet expecting different results. By this definition the system is insane. My child has had nineteen hospitalizations and four arrests and is sicker today than before it all began. It is a waste of time, money and resources to keep hospitalizing her time and again, and then releasing her, still as psychotic and symptomatic as on admittance. I vote to just give all that money to me and I will retire with her in the Bahamas. At least someone would benefit from the money wasted.

As I write this, my daughter is in jail and I do not know what will happen. Tough love failed … she is too sick and too suicidal for it to be effective. She has given up and simply does not care what happens to her now. And me? I am far closer to giving up than I ever imagined possible. The reality is that there may be no chance for her. If the pattern now set continues there is not. Her life is a living hell, a nightmare even Stephen King would have trouble imagining. The hospital cannot hold her or force her to accept treatment unless she is an imminent danger to herself or someone else. She has learned to lie about that. At 24, she is trapped in a vicious cycle and with no way of keeping her in treatment, nothing will change. If nothing changes it will end in tragedy. Then when fingers are pointed and blame placed, it will be too late.

I miss my daughter. She has been sick for a third of her life, but I still cannot accept what has happened; nor understand why it must be. I tried all I know to do, even giving up, but finally, I am unable to give up hope no matter how hopeless it seems. We need a miracle, and I cling to the hope that it is not impossible, and that one day she can have peace, and sit in the sun and hear only the wind.
____________________________

Published and produced by friends of ~
The Change Mental Health Laws in Kentucky Project
ALL RIGHTS RESERVED!

 

The law failed our son!

Schizophrenic son shot police - MENTAL ILLNESS POLICY ORG.

www.mentalillnesspolicy.org

Thanks to DJ Jaffe for sharing this:

Karen and James Logan's mentally ill son shot two cops. Here is their short moving testimony on how the law prevented them from getting treatment for their mentally ill son and how that led to the shooting. Please join Mental Illness Policy Org in supporting efforts to reform laws in your state so people with mental illness can be treated before (not just after) they become danger to self or others. Thank you for all you do. http://mentalillnesspolicy.org/firstperson/paranoid-schizophrenia-son.html

Personal testimony by Karen and James Logan

Our son James Logan began exhibiting signs of paranoid schizophrenia. We recognized the symptoms because this serious disease had already occurred in his paternal grandmother and his uncle. We had taken him to the emergency room of a local hospital for treatment that night; we were told he should come back in the morning.

On Monday, August 26, 2002, our son went to the hospital and was seen by the attending psychiatrist and was told he should be admitted immediately for diagnosis and treatment. However, due to the nature of the illness, our son did not feel he needed any treatment and he refused to sign any hospital admission forms. Under current law physicians can not admit an adult into the hospital against their will, even though the individual is gravely disabled and incapable of making a rational decision about their well being. Currently they must present a danger to the life or safety of the individual or others. The doctor did not believe James met this criteria at that time. However, if he became violent, the doctor said we could call the police and ask them to bring James back to the hospital.

We continued to look for alternative treatment for our son to no avail. He refused all treatment because at the time he could not understand that he had a brain disorder that needed treatment.

As our son's condition deteriorated; it became obvious that his life as well as others could be in danger. Peace officers were called on August 28, 2002, however they did not witness any dangerous aggressive behavior so they did not petition for an emergency evaluation. The only choice set before us was to file a "Petition for Emergency Evaluation" with the Court. The petition requires the ruling by a Judge before an emergency evaluation can be done. Our son's condition had now become so severe we thought we could convince a Judge that the danger was imminent. The petition was authorized by the Judge.

By the time we were able to obtain the proper authorization for an emergency psychiatric evaluation on August 29, 2002, our son's condition had extremely deteriorated. Two Deputy Sheriffs lost their lives while trying to serve the "Petition for Emergency Evaluation." Our son has been incarcerated since this time, and our family has suffered greatly because of this tragedy. The families of the two Deputy Sheriffs are suffering as well. We have kept their families in our prayers and we will continue to do so.

If the attending psychiatrist had the authority to admit our son involuntarily under the gravely disabled standard (which did not pass the legislature last year), perhaps this tragedy would not have occurred.

The emergency evaluation standard currently proposed in SB 273 could also have averted this tragedy. Although SB 273 does not propose a gravely disabled standard, it does require the dangerousness standard for an emergency evaluation to be the same as the dangerousness standard for involuntary hospital admission. This could also have averted the tragedy. SB 273 would have allowed the peace officers on August 28, 2002, to take into account other pertinent information, enabling them to make a better decision. This would also have eliminated the traumatic experience of pleading with a Judge to grant a petition. Also, under SB 273 we could have petitioned for an evaluation before the danger was imminent.

Please vote in favor of SB 273. Save the lives of people who are ill through no fault of their own and others trying to help them. Prevent needless tragedy from striking more Maryland families.