Thursday, October 27, 2011

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



  1. If we had another 100 like you there would be no problem. KY needs an AOT law. Instead of spending money making worried-well worry less, they need to focus on severely ill. Mental health departments engage in reverse prioritization: send least ill to front of line, and most ill to streets, jails, shelters, and too often morgues. Keep up great work.

  2. I pray for this mom & for her daughter. Kentucky needs court ordered treatment for people like this young woman. There is no reason she should be left to suffer & her loved ones to be left with so much heartbreak and worry. People opposed to court ordered treatment will cite civil rights as a reason against it, but I see a society that allows someone with a brain disorder who has no ability to help themselves to simply fend for themselves as quite uncivilized. Kentucky needs to adopt AOT laws & take care of it's most vulnerable citizens.

  3. Kentucky's AOT should include a more defined early intervention plan. A parity law for health insurance should be added along with a longer hold period based on the individual's need, to help to stabelize an individual who is having a first time episode. Health Insurance should provide this service under behavioral care since it is a medical brain disorder. This should be part of the AOT law.

  4. Wow, my heart goes out to this woman, and the hundreds of thousands, if not millions of family members Iike her that have been dealing with this dysfunctional system.

    I wrote an essay called "I WAS A PERSON", in memory of my brother, who, as I tell everyone I talk to, was one of the lucky ones. Although his life was very difficult after his release from the state hospital system (where he had been an in-patient for over 20 years, and was released into this dysfunctional community mental health system, still delusional, with severe cognitive impairments) he was never homeless or incarcerated. That was his "luck"...a sad testament to the mental heath system. I think about the anguish my siblings and I felt over Paul's recurring trips to the ER, being picked up by police, going back to the state hospital, then released to a grimy adult home that did not monitor his medication very well...then I read just breaks my heart.

    I wrote about the Medicaid Institutes for Mental Diseases Exclusion, but Paul's Legacy Project is also a staunch supporter of Assisted Outpatient Treatment (AOT) laws and the need to change civil commitment laws to include "gravely disabled".

    Here is my "I WAS A PERSON" essay written in Paul's voice...

    My name is Paul Flannery, and I was one of the 4% of US adults with severe mental illness. We do not seem to have a voice in this whole "Occupy" movement. The call to save Medicaid funding once again leaves my fellow 4% out in the cold. For some, that is a literal statement.

    You see, Medicaid funding for long-term, in-patient treatments is denied to Medicaid eligible adults who are unlucky enough, like I was, to have an illness in their brain, instead of their heart, or lung or some other organ in their body. There is even a law against us, it is called the Medicaid Institutes for Mental Diseases (IMD) Exclusion.

    Because people with severe brain disorders, like schizophrenia and bipolar disorder, are denied access to appropriate long-term, in-patient treatments, 200,000 of us are homeless, 500,000 of us are in prison, we cycle in and out of the local emergency rooms, psych wards, and jails by the millions, and we die, on average, 25 years sooner than you, the other 96%, due to medical neglect. You traded state hospitals for homelessness, incarceration, and death. This is not protecting our civil liberties.

    I died three years ago; I was only 48 years old. You could be my voice, and the voice of the 4%. Please tell Congress to repeal the discriminatory Medicaid law that puts long-term, in-patient treatments out of our reach. It is literally killing us.

    Repeal the Medicaid Institutes for Mental Diseases (IMD) Exclusion and support AOT laws.

  5. I agree with the longer hold. A recurring theme in so many stories are that a loved one is released while still psychotic, or gravely disabled. AOT laws will only go so far though, as would increasing the hold time or even repealing the IMD Exclusion. It all has to come with providing proper discharge/ step-down criteria, transition planning, and follow up. There needs to be a process upheaval. My business experience is implementing changes to business processes, and I want to apply that to this process. It is part of what I am going to talk to someone on NAMI National staff next week, actually.

  6. Your story is exactly what I fear for my 17 year old son, diagnosed at age 14. He is in residential treatment now and it has saved his life - so far. We will be going for guardianship as well next year and I pray we are approved. But even then, the law does not allow us to COMPEL him to stay in the hospital, past the 72 hour hold we can impose if his doctor agrees he is a danger to himself or others.

    Why must we wait until our children, too out of their minds with psychosis, end up dead or in prison? Does the government REALLY feel it's better to have 60% of the prison population with diagnosable mental illnesses? Prisons are the de facto state mental institutions now.

    We must get Laura's Law passed in every state if we are to save our children.

  7. The label schizophrenia, like most other labels of mental illnesses, obscures the fact that these individuals have some combination of gluten and other food sensitivities, vitamin B1, B2, B3, B5, B6, B12, D, folate, magnesium, glutathione and/or zinc deficiencies, copper or heavy metal toxicity, hypoglycemia, vitamin B2, B6, B12, D, folate & glutathione polymorphisms, histamine impairment, hormone imbalance, impaired nicotinic receptors that need choline, intestinal dysbiosis, chemical toxicity, prescription toxicity, digestive impairment, autoimmune, inflammatory, lifestyle, infectious, brain injury, and electromagnetic field sensitivity/toxicity. In the early 1900s when hospitalized schizophrenics in the South were given vitamin B3, 10% walked out of the hospital normal.

    When individuals are initially diagnosed or first get into trouble, a complete assessment can require CBC, CMP, homocysteine, heavy metal screen, MTHFR, Hgb A1c, intracellular micronutrient profile (looking at functional levels of all vitamins, top six minerals, key amino acids, key nutrients, and antioxidant status), IgE and IgG food sensitivities, HLA-DQ2&8, and stool analysis (screening for parasites, yeast, dysbiosis, digestive impairment).

    This followed by nutritional counseling to eliminate sugar, processed foods, all grains, nuts, and milk products, instruction in a physical activity protocol, and a nutritional support protocol that promotes brain growth and healing. And a followup program to tweak and assure ongoing progress.

    This could, when addressed at time of initial diagnosis, could prevent untold monetary cost and restore these individuals to happy, productive lives.

    This needs to be law. At our Healing Young Brains conference at the downtown Lexington Hilton we will have many experts from around the country, in the best brain conference of the year, explain how 'mental' disorders are misunderstood, how antipsychotics shrink brains and over time worsen brain function (though may be necessary for acute management), and how to go about fixing brains. While targeted as a continuing education program for health professionals, our intention is to fill every seat. Anyone in the health, education, or social work fields is especially encouraged, but parents can attend. Partial scholarships are available for those who might need it.

    One-third if not one-half of children now have suboptimal brain health. Brains can be thoroughly assessed, growth can be promoted, and healing can occur.

    I heartily support efforts to get these young individuals thoroughly assessed, instructed, and guided with a legal system that insists that this must happen with parents being in a position to insist that this happens. I applaud the work of those seeking to get this accomplished.

    Jim Roach, MD

  8. I agree that the laws need to be changed. A mentally ill individual who doesn't know they are ill aren't going to seek help. It's hard when their family members can't do anything to help them get much needed treatment. Our laws should be set up to help rather than hinder.

  9. I have bipolar disorder and have struggled with it since I was nineteen years old. I have been hospitalized a total of nine times. Today I am stable and have a strong support system through NAMI, comprehensive care, and my wife. I am one of the fortunate ones. I am now living a wonderful, happy, and productive life. My wish is that everyone can do the same.

    Kentucky desperately needs court ordered treatment for mentally ill people who don't realize they are ill. You cannot begin on the road to recovery if you aren't allowed the needed help.

  10. Kentucky ranks 44th in the nation, spending $55.06 per capital on mental health - less than half of the national average of $122.90.

    Much education is needed to help Kentuckians understand why AOT is needed. It will save state funds, help people stay off of SSI, and help people like this young woman from wasting her life in jail, prison or perhaps from an early death. Recovery is possible, only in those who understand they have an illness! For more info read about "anosognosia" on this blogsite.

    The solution to this problem is: 1.) Encourage KY leaders to adopt national policies that demonstrate what have been proven to be effective:
    * Assertive Community Treatment (ACT),
    * Assisted Outpatient Treatment (AOT),
    * Jail Diversion Programs,
    * Mental Health Courts and Re-entry Services

    2.) Invest KY state funds in services and supports to develop programs that serve the 20 percent of the clients who are using 80 percent of the current resources! Sufficient resources for supported housing, employment and other recovery oriented services could be obtained with the money saved from money wasted in the criminal justice system!

    3.) The solution is not to work" harder" but rather "smarter"................ stop making the same mistakes, support the Behavioral Health budgets and stop growing the budget for the
    Kentucky Justice and Public Safety Cabinet (JPSC).

    Civil libertarians would not agree with supported outpatient treatment, but they would change their minds if they lived in this Kentucky Mom's shoes. We would not expect a person with Alzheimer's to make their own decisions, so why a young person trapped in a psychotic episode? What is the difference?

  11. As a person with Bi-Polar disorder I understand the tragedy of failed treatment and the complexity of the legal issues associated with Mental Health. Doctor Roach's comments above are on target. Early, compassinate and inclusive evaluations are critiical.

    More research, better more indepth education for therapists to encourage care givers to recognize and treat the "whole person," and interaction with qualified Peer Support Specialists are elements that will move us toward better treatment. Compassionate understanding and training for involved persons are also needed.

    I favor the movement for intensive drug courts and and expanded role for guardianship as part of our solution. We need person centered, strength based inclusive treatment grounded in Hope. Laws are, buy their very nature, inpersonal, calloused and often uninforceable.

  12. Lexington mom, I feel your pain and I will put you on my pray list, permanently. I was introduced to the reality of mental illness 42 years ago when my beloved and unique sibling was diagnosed with a mental illness. My widowed mother and I dealt with the heartbreak for the last 22 years of that sibling's life. I have been an advocate since the beginning and applaud the continued efforts for the realization of Assertive Community and Assisted Outpatient Treatment. The roadblock of the civil liberties reference comes from ignorant uncaring people. Mental Health advocates will NEVER go away.

  13. How especially brave of the Lexington Mom to share her story. Your family will remain in my thoughts and prayers.

    The October 30 post from GG Burns includes valuable information. Please encourage everyone to follow the three steps Burns mentions. These are (1)encourage Kentucky leaders to adopt national policies that have been proven to be effective, (2) invest Kentucky state funds in services and supports to develop programs that serve the 20 percent of the clients who are using 80 percent of the current resources, and (3)support the Behavioral Health budgets and stop growing the budget for the Kentucky Justice and Public Safety Cabinet (JPSC). There is a tremendous need for changes within Kentucky's current mental health law.

  14. GG Burns is a courageous, intelligent, mother. Her arguments are absolutely correct. So many people are living in hell and we continue to do our best to ignore them and their realities.

    Why not re-direct our energies to ensuring appropriate treatments for people with brain diseases? We would never allow someone not to have a broken limb set and cast...

  15. Two key fiscal actions are needed:

    1. Shift funds from the Justice System to develop front end diversion services that send persons with SPMI to treatment rather than jail. ( CIT and MH Courts)


    2. Prioritize/Shift Medicaid spending to include Acute Behavioral Healthcare ( Crisis Units)that will be used to divert people from of jails and hospitals.

    In addition, legislative change is needed in KRS 202A to allow for the outpatient civil commitment for two distinct populations....forensic clients and those who are repeatedly hospitalized and havent engaged in outpatient treatment.

    Treatment Works.......Access must be enhanced!

  16. Your story is heartwarming. I encourage you to accompany your child to her appointment regularly and find a cure together. Always be there for her.

  17. The child we raised came from a very neglectful background the first 5 yrs of his life. He has a long history of mental illness, and a diagnosis of MR along with other disabilities. He was treated for brain injury as an infant. He was hospitalized several times as a child for his behavior and we were able to get the help and resources we needed. After he turned 18 he was found to be incompetent by the court and we were granted guardianship. He became more belligerent, got on drugs and was arrested 8 to 10 times over a period of 2 yrs . He would not take his medication and on several occasions was violent. Several times I would take him to the ER for drug or alcohol abuse. I filed a MDO and he was transported by the police to Eastern State. At 2am I received a call to come and pick him up that he had calmed down and was fine. Less than a wk later he committed a violent crime and was found to be competent to stand trial. The fact that he was found competent surprised everyone that knew him. He was given a 10 yr prison sentence. The system failed us because after he turned 18 I couldn't get the help he needed.I turned to the guardianship office and that was a joke. I begged them to help and to place him in a supervised home. I am very upset his life has taken this turn and pray God will protect him. I continue to advocate for him. Any prayers for this young man are welcome.

  18. Dear Anonymous December 11, 2012 7:19 PM

    please contact me:

    Your and your son's experiences are indeed important, as we work with legislators to improve KY's mental health laws and change the budget spending. Follow us on Facebook also.

  19. The mental health laws in KY are the worst. I had not idea about the mental issues until my beautiful 34 year old daughter had to be taken to Eastern State Hospital. I can't even talk to her psychiatrist! Her Dad and I are devastated, it's one of the worst nightmares a parent can face. I pray and hope that something can be done soon.

  20. Dear Anonymous, Please send an email to for more info on how your story can make a difference in changing public policy in KY. Thanks, GG Burns