Health Care Reform Part II: Emily’s story

In his recent email asking for my support for health care reform, President Obama encouraged me to write about my personal experience with health care in America. My story is long and complex, but I will try to be concise.

My 18-year-old daughter was first diagnosed with schizophrenia in July of 2001 when she was involuntarily committed to Eastern State Mental Hospital in Williamsburg, VA.

Due to America’s limited health insurance coverage, the severe lack of therapeutic psychiatric programs and an unscrupulous for-profit legal system, her first year of illness became a nightmarish ordeal from which there was no escape.

I hope her story will truly influence the Congress to pass single-payer national health insurance just as the Physicians for a National Health Program recommends.

Another Lost Child

Emily age 8

In July of 2002 I wrote:

When I hear breaking news about desperate parents searching for their missing daughters, I feel their agony and silently plead, “Help. Please help me! My little girl is lost. She has disappeared. Isn’t there anyone who can help me rescue her?”

Emily was a willowy young woman with long, thick chestnut curls that swirled around her waist as she danced. Her soulful gray eyes viewed the world with wisdom and compassion. She dreamed of being a healer. Now she is the one who is hurt and in need.

A volunteer search party won’t be necessary, but it will take a massive effort from people of conscience everywhere to help save my daughter and to protect others like her.  For you see, some perverse, faceless stranger didn’t kidnap my sweet child from her bedroom. She was assaulted and taken captive by those whom she had frantically called for help: the Virginia Beach Police.

In January of 2002, with no insight into her impairment from the recent onset of mental illness, my 19-year-old daughter lost her way in the tangled labyrinth of her own mind. Seized by a terror created by a chemical imbalance in her brain, searching for safety in the freezing winter rain, my frightened child called the police for help.

Emily, age 18, heavily medicated at home after being diagnosed with schizophrenia. She's holding a stuffed bear she found at the hospital and named Baby Bear. The small pic is her at age four long before the onset of her illness.

But the Virginia Beach police officer who responded to Emily’s call wasn’t trained to recognize the acute symptoms of mental illness. The officer simply assumed my daughter was another drug-dazed teenager, a criminal. In her delusional state, Emily imagined that the police officer was trying to strangle her and resisted being restrained. In her mind, she was fighting for her life. She didn’t understand why the officer was hurting her and not helping her.

My daughter’s attempts to push past the officer were not an assault. She was desperately trying to reach a telephone to call friends for help when the large female officer shoved her, knocked her down, grabbed her around the throat, sat on her and handcuffed her behind her back while holding her face down on the floor.

Instead of being taken to a nearby psychiatric hospital for an evaluation, this confused and terrified young woman was arrested for felonious assault of a police officer, which carries a mandatory prison sentence of one to five years.

Two days later, when family members first visited my daughter at the jail, the bruises and scrapes were clearly visible around her throat, arms and legs. Emily told us she didn’t understand why she had been attacked and jailed. On the day of her arrest, she thought that someone had placed a butcher knife under her pillow while she was asleep, and she had called the police for help.

In the nightmarish maze of mental illness, her distorted perceptions of the knife seemed completely real. She thought one telephone was infected with anthrax. She believed she could hear people’s thoughts, taunting and threatening. She couldn’t comprehend that her mind was sick. At times, even my loving smiles would seem to turn into terrifying leers. Desperately in need of intensive psychiatric care, she was now locked in a jail cell without medication.

The day she was arrested, I had called the Virginia Beach Police Department and asked them to search for my daughter who had last been seen walking in the freezing winter rain on a busy thoroughfare.  I explained that she was experiencing an acute schizophrenic episode and needed to be transported to a psychiatric facility.

Unfortunately, my call was made a few hours too late. She was already in jail, and the Virginia Beach prosecutor refused to drop the charges or to allow her to be bonded out of jail so her family could help her obtain medical care. Instead of being treated like a lost, confused and terrified child, she was being treated like a dangerous criminal: guilty until proven innocent.

That day, both of us had called the Virginia Beach police for help. Instead of help, we found ourselves in a glassed-partitioned jailhouse visiting stall with her weeping piteously, begging for help and telling me how afraid she had been when the police officer assaulted her. I tried to console her, but she was trapped. And there was nothing I could do. I couldn’t even put my arms around her.

At the Virginia Beach jail, the social work staff knew she was sick and tried to help by placing her in an isolation cell on the medical unit. They understood that someone who is experiencing a paranoid break with reality might become a danger to themselves or to others. These are criteria for involuntary psychiatric commitment. Yet I was prevented from hospitalizing my child.

I was informed that because Emily was locked in a cell the normal criteria for hospitalization were null and void. They said their “hands were tied.” They told me she had become an inmate, and that they were doing all they could do to help her.

The medical staff at the jail also knew that Emily desperately needed medication to treat her symptoms. But, extremely delusional and paranoid, she was too afraid to take the medicine they offered.

After several days of this isolation, Emily panicked and began screaming and begging to be released. She was punished for her outcry by being stripped naked and placed in an empty cell for several days without a mattress or a blanket to protect her from the winter weather.

Even worse, this standard form of jailhouse discipline was imposed during her monthly menstrual cycle without giving her any sanitary supplies. She was forced to sit on the cold cell floor bleeding, while various male deputies and jail house staff watched her on security cameras.

I know her story is true because one deputy let it slip the next time I came to visit.  When I asked to see her, he laughed and said, “Oh, that’s the one who was buck naked and screaming.” When he saw the shocked look on my face, he said, “Don’t worry. We got her some clothes.”

So for the first two months she was held alone in a cell with only her delusions for company. With nothing to read and little human contact, she grew sicker each day from the trauma of her arrest, the isolation and the lack of medical care. Still, I found no one in the medical unit at the jail who could help me get her admitted to a hospital.

And I couldn’t afford an expensive lawyer for her defense. After taking a few thousand dollars I was able to scrape together, one good old boy lawyer told me point blank, “You don’t have enough money to prosecute this case.”

The social workers said that there were hundreds just like her in jails everywhere. “This is how the state of Virginia treats the mentally ill,” I was told. “She’s lucky to be on the months-long waiting list for a bed in the forensic unit at Central State Hospital.” They assured me that they were doing all they could to help my child.

Since this tragic episode, I’ve learned much about how grossly inadequate American private and public health insurance coverage is for these most fragile members of our human family.

Private insurance companies, Medicaid and Medicare severely limit the amount of care and services they will cover for mental illness. And the paltry, underfunded programs that do exist are scarce and poorly managed. Given the lack of options for medical care, the US legal system criminalizes the mentally ill for profit.

Sadly, I’ve discovered that my child has joined hundreds of thousands of other American citizens with serious brain disorders who are abused by the health insurance and legal systems that should be caring for and protecting them.

Perhaps even crueler, I learned that if you have enough money to pay fees like $245 per day there are some excellent “private pay” facilities that provide exceptional residential care for mentally ill consumers.  As usual, having enough money is the key to acquiring good health care.

Taken during the Christmas holiday in 2008, this is one of the buildings on the state mental hospital grounds where Emily now lives.

Seven years later, she’s being held involuntarily in a state mental hospital, over-medicated with little hope for better care. The small pittance of income Emily receives from Social Security Disability Insurance (SSA) Supplemental Security Income (SSI), $674 per month, doesn’t cover her basic needs. And, if it wasn’t for SSI and SSA, her parents, Medicare and Food Stamps, Emily would be in prison, homeless or dead.

Republicans call these payments “entitlements,” and they are fighting to eliminate them while they are also lobbying Congress to permanently repeal what they call the “death” tax, which would ensure that the heirs of the super wealthy won’t have to pay any estate taxes on their gargantuan inheritances.

The GOP and several wealthy-pandering Democrats are also working overtime to derail national public health insurance.  These legislators allocate billions of taxpayer dollars to pamper the rich and to wage war, but they want to block access to adequate health care coverage for the American people.

President Obama, this is only a small part of Emily’s tragic story. And I hope that you and others who may have taken the time to read it will do all they can to pass single-payer health insurance legislation that we so desperately need.

~Nancy Logsdon Mandelkorn