5According to information provided by the NASMHPD (National Association of State Mental Health Policy Directors) Research Institute, some 40 state psychiatric hospitals closed their doors between 1990 and 1997.

Two remarkable individuals contributed their personal stories for this issue of the Catalyst. We are grateful for their willingness to share with others their experiences that so effectively illustrate the need for assisted treatment reform. Donnie Buchanan was diagnosed with schizophrenia fourteen years ago. His non-compliance with treatment nearly cost him his life. He is a role model for others not only because of what he has learned about his illness, but because he is brave enough to share his story in order to help others. Unfortunately, those most vocal in the "consumer movement" tend to oppose assisted treatment. But, studies reveal that the majority of those who receive assisted treatment retrospectively agree that they needed it. Donnie is among those who give a voice to that silent majority whose lives have been enriched or even saved by assisted treatment.

Dick Taylor's testimony chronicles the tireless battle that he and his wife Judy waged in order to save their son. Although I hear similar stories repeated every day by other families across the country, I was literally reduced to tears by their story. The account of their son's descent into psychosis illustrates the madness of a system that withholds treatment from those who cannot realize their need for it. They must become dangerous to get help. It also illustrates how difficult and painful it really is for families to help loved ones who do not realize that they are ill. Clearly, it would have been easier for the Taylors to do nothing than to exert the tremendous effort that was required to get help for their son. Anyone who asserts that families derive perverse pleasure from hospitalizing a loved one has no inkling of the torture that is involved in making these decisions. The Taylors' perseverance probably saved their son's life. It may be even easier for mental health professionals to do nothing when a client refuses treatment. Too often we hear the mantra "it is his choice to refuse treatment" when the client is not even aware he needs help. Thankfully, some truly caring professionals do not use such excuses and, like the Taylors, do everything in their power to get their clients the treatment they need.

Donnie and the Taylors hope that others will learn from their experience. Last month Dick Taylor told his story to a Delaware commission of lawmakers, policymakers and administrators. He and a myriad of other families across the country are finally sharing their stories because they know that they must do so if they are ever to have any hope of effecting change. We thank Donnie and the Taylor family for their courage.

[Editor's note: Donnie's story previously appeared in the NAMI Advocate.]

My name is Raymond "Donnie" Buchanan. I'm 39 years old, and I've had schizophrenia since I was 25. I live in the Atlanta area and grew up there. I also have an identical twin brother with schizophrenia. He got sick at age 21. I have another brother (younger) with severe epilepsy and a mother with bipolar disorder. My dad and one sister, who is the oldest sibling, seem to be the only "normal" people in the family.

I was thinking to myself the other day that I've suffered through fourteen years of pure hell; that I feel like I've lost a large part of my life to schizophrenia. I feel like these years have been taken away from me by this illness. Sometimes it feels like I'm trapped by this spirit so strong inside of me that I don't know what it is at times. I was raised fundamentalist in the South, where people sometimes associate unusual behavior with demons and the devil. I don't want to think my problem is demonic, and yet I don't want to think it's mental--but it is. One thing I have to accept is that I have a mental illness; that doesn't mean I'm different from anybody else. But I think sometimes that if I hadn't become ill, I'd be working full time somewhere. My illness started in 1985 when I was working in Houston, Texas, driving a truck for some soft drink companies and serving machines. I began to feel very paranoid about the Teamsters Union, and thought that they were threatening me and going to hurt me. I might have misinterpreted things, but the paranoia and fear felt very real. Shortly afterward I started to hear things like "I hate your g_damn guts," "You're going to die," etc. I also had religious delusions, like thinking I was Jesus.

I was hospitalized in Atlanta a couple months after the symptoms started. This was to be the first of about 30 to 40 hospitalizations I've had in the last fourteen years. I've also been put in jail for symptoms of my illness. Fortunately, in the last few years I've been on Clozaril (the highest dose possible), which hasn't controlled all of my symptoms, but worked better than other antipsychotics. I take about four other medications too.

I was put on outpatient commitment because of an incident that happened about a year after getting schizophrenia. I experienced an auditory command hallucination that told me to get a gun and kill myself. However, I shot myself in the chest and didn't die. It was at this point that I was sent before the county probate judge and was ordered into treatment (outpatient civil commitment). The judge required me to attend day treatment on a daily basis and take medication regularly. The judge offered to help me obtain a lawyer/advocate that would help me follow through with the outpatient commitment plan and help me report progress back to the judge.

The day I first went to see the judge, I was nearly a vegetable from the illness. I hadn't been participating regularly in treatment, including taking medication. I could barely function. At the first review in front of the judge a year later, when the lawyer saw me, she told me that I looked a lot better. I continued to get better over the next few years. After about five years, I think, I was participating in treatment so regularly that the outpatient commitment order was discontinued.

Almost all the time I got sick I ended up in the state hospital, but there was one time I remember where I ended up in jail. A voice commanded me to go to a part of Atlanta to look for Dorothy Stratten, and I was arrested for criminal trespassing at a hotel. Instead of taking me to the hospital, they took me to the county jail, where I was beat up twice by other inmates and taken advantage of.

The outpatient commitment order helped me a lot. It prevented me from getting into trouble and got me on a regular schedule. I knew I had to take medication and become involved in some type of daily activity to deal with the voices and paranoia. Since I've been on Clozaril and the other medications, I've been able to work part-time and attend day treatment. I've worked at a restaurant now for about six months, which is about the longest time I've held a job. The voices don't tell me what to do anymore. I ignore them and tell them to go to hell and leave me alone, especially if they're bad voices.

As far as advice to someone facing an outpatient commitment, I think the best thing for him or her to do is to use it to become educated. They need to realize that they have a chemical imbalance; that they DO have a brain disease. It's not just their fault--they were genetically born with it, or that it came on through age, or whatever.

If people don't take their medication, they're going to get into trouble. As a person who's had bizarre thoughts and feelings, I know what people are going through--I've been through the same thing. Some people who deny that they're ill become either homicidal, suicidal, or both. I haven't been homicidal but I've been suicidal, and I got help. I learned that when those feelings started, it was part of my depressive part of my illness, and I needed to seek help before I got worse and reacted again. I learned this largely through outpatient commitment, and the education I got through treatment. Sometimes outpatient commitment is needed--I would say in limited circumstances--it would be based on what the person did or what they do.

I hope that people realize that individuals with severe mental illnesses need help before they get into trouble and commit a violent act like homicide or suicide. To wait until a violent act occurs often can be too late, and isn't a compassionate approach for people who have severe mental illnesses like mine.

[Editors note: Mr. Taylor presented this testimony on February 28, 2000, before a commission of Delaware state legislators, policymakers and mental health administrators.]

Four years ago my wife and I did not know anything about mental illness. We began to learn in an agonizingly slow and emotionally draining process with the onset of our then 29-year-old son's first psychotic break. Our son was making plans to attend Tulane Law School, when he began talking about satellites in his head, the sick American Society, the F.B.I., and later, voices.

Because he was convinced there was nothing wrong, my wife and I signed a complaint to have him involuntarily committed based on a threatening statement he made to us. We successfully got court-ordered commitment and medication to be given at Rockford Center. We thought we were on our way to helping our son have a chance for a normal life. We were at best na�ve and had no idea what the next four years would have in store for our family.

After 10 days our son's private insurance refused to cover him. After being diagnosed with schizophrenia, not given any medication or neurological tests, he was discharged into our care. The doctor's last words to us were, "Your son is a tragedy waiting to happen." It was the next day that our son became a missing person--his 30th birthday.

He turned up three weeks later in the Philadelphia railroad station after having spent a night in jail and living in a car in the Philadelphia International Airport parking lot.

After two more years of psychotic episodes and small periods of time where he could actually keep a job for about three weeks, we thought an opportunity presented itself to get him help again. On a complaint of violence directed at me, the police came to our house, but viewed it as a domestic dispute since our son did not pose a threat of danger to himself or others. Since our son had only the choice of jail or signing himself into Meadowood, he chose to go to Meadowood. Before, we could even think about feeling good about our son's chances for treatment, he was diagnosed with a mild personality disorder and discharged after five days because the HMO would no longer cover inpatient treatment.

Another year passed before we attempted to have our son committed for treatment again, but despite his statements about satellites in his head and the sick American Society, the crisis counselor and police told us that since he did not pose a danger to himself or others, that they could not take him for commitment. He was left once again to struggle with his voices that degraded him, talking about the evil American Society and calling every embassy in DC to have his citizenship changed and asking if they could give him money.

Our son continued to divide his time between living at our house in Riverdale, and our home in Montclare. He could no longer hold a job longer than two weeks because "people were being mean to him." Eventually, he could not work at all. His sister who is fighting breast cancer, his brother, Judy and I continue to grieve for our son every day--a son who is alive, but has no life. Until Saturday morning, February 12th at 3:30 a.m., our biggest barrier to getting our son help was Delaware State Law. Our son was committed to Rockford Center, but it was not pleasant, and it was not easy.

At 3:00 a.m. my wife and I were awakened by screams. We knew it was our son, and I left our bedroom to see if I could help calm him down. He was screaming about "interdictal" satellites and that they were coming through his eyes. He wanted me to stop them.

When I told him I could not, but was there anything else I could do, he became more irritated and pushed me. I continued to try to calm him down, but then he picked up a chair and threw it at me. He ran for the phone and pulled it out of the wall so I could not call the police. I ran into the bedroom, locked the door and told Judy to call 911 from our bedroom phone, while my son was banging on our door trying to get in to stop us from making the call. After he heard us place the 911 call, he grabbed his belongings and took off in a car that virtually had no brakes.

With the help of the state police and the Milton police, our son was apprehended and taken to Beebe Hospital at about 4:30 a.m. After a psychiatric evaluation, it was determined he needed to be transported to Delaware State Hospital and arrived there about 9:00 a.m. At 10:00 a.m. my wife called to check on the status of our son and was told by Delaware State Hospital that he had escaped from the security guards and was never admitted to Rockford Center. My son was listed on the police report as psychotic, delusional, and violent, yet no measures were taken to be sure he was delivered successfully and safely into a locked facility at Rockford by Delaware State Hospital.

There was a search but he was not found. My wife and I drove to our home in New Castle County because we were sure our son would go there. When we arrived, our son was indeed in the house, but when he saw us, he grabbed his back pack and ran out the door on foot. I called 911, and they said they would send someone immediately. After 5 minutes I called again and they assured me someone was coming. No one ever came. After checking with the state police later, we were told they never got either of these 911 messages from dispatch.

My wife and I drove around for two hours looking for our son, but with no success. Our son was missing again. It seemed like there was a state conspiracy to keep my son from getting the treatment he needed.

My son eventually called my brother in Allentown, Pennsylvania to come and pick him up. My brother saw this as an opportunity to have my son apprehended. He called me, and we set up a meeting time for 10:30 a.m. on Sunday, February 13th in the St. James Church parking lot. My son thought that his uncle would take him over the Delaware state line and live with him at his home in Allentown.

Afraid to trust dispatch again, my wife and I called the state police directly and went to Troop 6 to explain our plan. Arrangements were made to have state police pick up our son. My son's paranoid antennae was up. He saw a state police car and ran through the church parish house, where he had broken into the night before and stayed. The state police gave chase and the search continued in the nearby neighborhood with the state police helicopter, five police cars and seven troopers. They finally apprehended my son at about 11:30 a.m.

After some medical treatment for cuts and abrasions at Christiana Care, the state police transported our son to Rockford Center at about 1:00 p.m.

Chad began taking medication on February 14th and receiving psychiatric care. On Wednesday, February 16th in a session with the social worker we were told that the insurance company was putting pressure on them to discharge him by Friday February 18th. This would have been prior to a court hearing scheduled for Wednesday February 23rd to have court-ordered medication and outpatient care for our son.

Having been through this twice before, we knew it was time to hire a lawyer. Our attorney sent three letters on February 18th: one to the center's executive director, one to the doctor treating our son, and one to the insurance company's case worker. The letter made each one aware that if our son was discharged prior to getting enough treatment to rid him of his psychosis that we would hold them responsible and major contributors to any harm that came to our son. On February 21st we were assured by the doctor that he would appear at the court hearing to recommend further inpatient care and court-ordered medication and outpatient care.

I will have flashbacks for the rest of my life to serve as painful reminders of how my son has suffered, and how we have suffered as a family. It has been one long nightmare of instant replays of court hearings, my son being led away in handcuffs, and waking to screams in the middle of the night.

We will have memories of panic each time he was missing and wondering if he was safe, memories of a father's tears caused by love for a tortured son who is unable to recognize his illness, memories of deep despair each time an attempt to get my son treatment was thwarted by Delaware Law and an ineffective Health Care System--all memories that did not have to be repeated over and over again.

Judy and I are asking the state legislature to pass the kind of legislation that would allow parents like us to get help for their children, as adults on a Need For Treatment Basis. It is ironic that the present law protects my son's right to accept or refuse treatment, but that because of my son's inability to recognize his illness, he is unable to practice the most precious of our civil liberties--the right to pursue happiness and success and lead a productive life in society.

In February 1999, the Supreme Court of Appeals of West Virginia appointed the Commission on Mental Hygiene Reform for the express purpose of updating and improving the State's assisted treatment laws.¹ In making its recommendations for reform, the Commission recognized that there have been profound changes since the enactment of West Virginia's mental hygiene laws. In 1974, the average length of stay in a West Virginia psychiatric hospital was 15.91 years; today the average stay is 15 days. There were thousands of individuals in the state's psychiatric hospitals 25 years ago, while today there are less than 250. Most significantly, "there has been a revolution in the understanding and treatment of mental illness, including the use of modern medications that can dramatically ameliorate the symptoms of many mental illnesses."

The Treatment Advocacy Center was honored with an invitation to make a presentation to the Commission at its first meeting on April 7, 1999. The Commission also collected information about the need for reform by conducting public hearings, surveying jail officers and court personnel, polling other stakeholders in the system, conducting telephone interviews of consumers of mental health services and consumers' families, and accepting submissions via mail and e-mail.

On December 15, 1999, the Commission issued its Final Report that contained thirteen recommendations falling into three categories: 1) standards and procedures; 2) services; and 3) accountability, oversight and education. Most notably, the Commission unanimously recommended modifying the "dangerousness" standard for assisted treatment with a "need for treatment" standard. West Virginia law currently requires proof that an individual is "likely to cause serious harm to himself or herself or to others if allowed to remain at liberty." The Commission recognized that the "dangerousness" standard "drives the 'criminalization' of the involuntary commitment process. ... Many persons with mental illness ... do not recognize the existence or extent of their illness. Before receiving treatment, persons with mental illness must often spiral to the depths of their illness, to a level that they are declared, in a legal proceeding, likely to cause serious injury to themselves or others." The Commission recognized the benefits of early intervention in preventing further deterioration that can occur if symptoms are left untreated and in being cost-effective by treating the illness at a less advanced stage.

The Commission recommended that the Legislature amend the standard for assisted treatment so that it encompasses persons with mental illness whose judgment is impaired and those who exhibit similar behavior to that which previously resulted in court-ordered treatment. The proposed "need for treatment" statutory language includes the following criteria:

"the person has behaved in such a manner as to indicate that the person is unable, without supervision and the assistance of others, to satisfy the person's need for nourishment, personal or medical care, shelter, or self-protection and safety, so that it is probable that death, substantial physical bodily injury, serious mental decompensation or serious physical debilitation or disease will ensue unless adequate treatment is afforded."

The Commission's Report provides a comprehensive review of West Virginia's civil commitment process and a thoughtful and thorough model for reform. Included among the Commission's other recommendations were the need for: procedures to improve medication compliance in and out of the hospital; strengthening of the continuum of services for severe mental illness from preventive services in the community to long-term care; accountability and monitoring of services providers, courts and state agencies; and education. The Final Report can be viewed on the Treatment Advocacy Center's web site: (), or West Virginia's web site: (www.state.wv.us/wvsca/mentalhyg/finalmh.pdf).

The Treatment Advocacy Center is grateful to Chief Justice Larry V. Starcher of the Supreme Court of Appeals of West Virginia, and his staff, particularly Staff Attorney Tom Rodd, for their dedication to improving treatment for individuals with severe mental illness in West Virginia. The Center commends the Commission for its insightful report and recommendations.