Late at night, when the phone rings, Eleanor Williams braces herself.
"Please take me out of here. Don't let them keep me here," pleads her son, Gary Williams, 34. He has lived at Clifton T. Perkins Hospital Center, a maximum security state facility in Jessup for the criminally insane, for seven years. But he isn't a criminal, and he isn't mentally ill.
He is the victim of a split-second tragedy -- a hit-and-run accident in 1980 that caused a traumatic brain injury, leaving him with little control over his impulses and few options. Mr. Williams is one of about 50 brain-injured people in Maryland who have been sent to state mental hospitals because there is nowhere else for them to go.
He and other patients are suing the state under the Americans with Disabilities Act, asking to be placed in supervised group homes. They say they don't belong in state hospitals whose staffs aren't trained to help them, where the crowded and noisy environment worsens their behavioral problems, where they are restrained for days and sometimes assaulted by other patients.
"I'm not bad. I'm a good man," Mr. Williams said. "I should be out of here. I should have a girlfriend. I can take care of myself. I can cook my own food. I can wash my own clothes."
The state pays $30,000 a year for him to attend a work program in Columbia on weekdays, but each night he must return to be locked in the hospital.
Across the country, countless other patients also find themselves living out their lives in mental hospitals while grappling with the knowledge of what was and what might have been -- vivid memories of a cool swim on a hot day, of the respect some commanded in their professions, of youthful aspirations forever denied after a car crash or a serious fall.
Each year, of the 2 million Americans who suffer traumatic brain injuries, one-third die and another third suffer permanent impairments, from seizures and headaches to short-term memory loss and mood swings.
A small number of the victims are left with behavioral problems such as constantly interrupting conversations, acting inappropriately with the opposite sex, stealing or hitting. That's because the part of the brain that controls impulse and inhibition -- and makes distinctions between right and wrong -- sits just behind the forehead and is particularly vulnerable in head injuries.
Mr. Williams, for example, used to bite his wrists and try to grab women's breasts. Most of that behavior has been controlled over the years, so now he remains institutionalized primarily because he needs help with basics, like being reminded to take showers.
Another victim kept trying to pet dogs -- despite the fact that the dogs were in moving cars. Bobbie Kemble, 24, improved during specialized treatment paid for by private insurance but worsened after spending several years in state mental hospitals, said her father, Robert Kemble of Myersville. His once fiercely independent daughter was hit by a motorcycle at 16.
'Very profound injuries'
"We are seeing more people survive with very, very profound injuries because of new emergency treatment. People are living who in the past would have expired," said George Zitnay, president of the Brain Injury Association of America, a national advocacy group. "If we have a policy in this country to save everybody, then we have a responsibility to provide them with the tools and the rehabilitation to lead a productive life."
When private insurance runs out, or a family can't handle an injured relative at home, an altercation with a sibling or a sales clerk, for example, may land a person in a state hospital. Often these patients are difficult to manage, have complicated diagnoses and need round-the-clock supervision. Community placements are scarce, state health officials say, and mental hospitals are the logical alternative.
But advocates and families say patients end up staying much longer than necessary and their conditions deteriorate.
A group in Connecticut has filed a class-action suit to push that state to provide appropriate services. Locally, the Maryland Disability Law Center (MDLC) has filed a lawsuit with Mr. Williams as the lead plaintiff, and attorneys expect the suit to get class-action status. Similar advocacy groups in several other states are also planning legal action modeled on the Maryland and Connecticut suits.
A few states, such as Massachusetts, have developed day programs, counseling services and, for those with the worst behavior, a specially designed locked unit staffed by trained personnel. Meanwhile, a bill has been introduced in Congress that would establish uniform reporting of injuries and force states to adopt plans to provide residential care and proper treatment.
That's exactly what attorneys contend the patients need but don't get. A study commissioned by the MDLC of 14 institutionalized patients found their physical health or practical living skills have been hurt by their confinement. Nancy K. Ray, an expert on quality of care for the mentally disabled and a former New York mental health official, found:
* Twelve of the 14 individuals shouldn't remain in the institutions, according to the hospitals' own treatment teams.
* Nearly half of the patients suffered from recurring falls or assaults by other patients. A woman, 46, fractured her hip after such an assault, and a man with severe vision and gait problems fell four times from his wheelchair or bed, twice requiring trips to emergency rooms.
* Six didn't get timely medical treatment for serious conditions, including fractures, tuberculosis and respiratory problems.
* Half were frequently and inappropriately restrained or put in seclusion rooms, often in violation of accepted standards. Four patients were kept in restraints and seclusion for days at a time, even after extended periods of showing no dangerous behavior.
* At least half didn't get basic therapy to help them with their unsteady gaits or other physical handicaps.
But officials at the state Department of Health and Mental Hygiene say the patients are getting the therapy they need.
Dr. Georges Benjamin, deputy secretary for public health services, said he wants to see the patients in the least restrictive setting deemed appropriate. A $2 million fund has been set aside to create a range of services, but officials don't want a court telling them to move the patients out of the institutions.
"We think the decisions ought to be made by individual treatment teams, not the lawyers," Dr. Benjamin said. "We're concerned that the patients won't get what is in their best medical interest."
'They need a lot of support'
Dr. Benjamin also said he doesn't know that taking these people out of state hospitals would prevent abuse of the patients. "I suspect I could go into the community and find all of those problems occurring," he said. Dr. Benjamin said his staff has moved out 32 patients over the past few years but are hampered by a lack of providers, neighborhoods that don't want group homes and the complicated nature of the patients' illnesses.
"You just can't let them walk out the door," he said. "They need a lot of support."
For years, Robert Kemble tried unsuccessfully to get his daughter out, but for a while, he was only allowed short trips to McDonald's on Saturday nights. After pressure associated with the MDLC lawsuit, and months of work by state staff to place her, Bobbie Kemble is scheduled to leave the state hospital in Cumberland today to live in a group home.
Many others are waiting.
Connie Jackson, 43, says she dreams of a place in the country, where she could have a dog. She could crochet afghans without having to get permission from the nurse to use the hook. She could make herself fried green tomatoes.
Since Ms. Jackson was hit by a car nine years ago, her family has struggled to find somewhere safe for her. At Springfield Hospital Center, a mental institution in Carroll County, she has three meals a day and a roof over her head, but she often can't go outdoors, her sister says.
'A vicious cycle'
"She's cooped up here. That causes her to act out," said Mary Pescatore, adding that her sister is then put into seclusion. "It's like a vicious cycle."
Ms. Jackson, who struggles with impulsiveness and sometimes makes inappropriate suggestions to men, does much better with one-on-one attention, which is hard to get at the hospital.
Recently, while trying to protect a nurse from another patient's assault, Ms. Jackson said she was punched. In another incident, a gold cross necklace, a Christmas gift from Mrs. Pescatore, was stolen.
"I call my sister a lot, and then I cry," Ms. Jackson said. "It's very RTC boring and very frustrating. I don't belong here."
Ms. Jackson and those like her are even taunted by the other patients, who know the brain-injured patients are different.
Many of the brain-injured patients are "involuntary," meaning they have been committed by physicians. Others with these injuries can sign out but must give notice to the hospital first, at which point a hearing is held, and advocates say they often end up being denied permission to leave anyway.
Ms. Jackson was once allowed to sign herself out. After a hospital van took her to a bus station, she made her way to a homeless shelter, where her medication and belongings were stolen. A few days later, she showed up at a local emergency room looking for medicine and was shipped back to Springfield.
Experts believe that many of these people could live outside of institutions if they were given the proper therapy.
"They need a more soothing and controlled environment. What sets these patients off is often something very predictable. You can intervene at that level and solve the problem," said Dr. James Kelly, director of the brain injury program at the Rehabilitation Institute of Chicago, regarded as one of the country's best. "Nationwide, there is very little understanding of this problem that people would just as soon forget about."
Yet the human and financial toll is significant.
The latest data, not yet published, show a rate of 100 per 100,000 Americans hospitalized or killed by traumatic brain injuries every year. Firearms, car accidents and falls are the main causes. That's a significant drop from about 15 years ago, according to the U.S. Center for Injury Prevention and Control. More people are surviving, experts say, because of improvements in trauma care and motor vehicle safety.
Nationwide, the annual cost of these injuries is estimated to be about $48.3 billion.
'Wasting their money'
"They're wasting their money on these people. They're just in there, and they're getting worse," said Andy Penn, the MDLC attorney who first began trying to get Mr. Williams out of Perkins seven years ago and filed the lawsuit almost two years ago. Mr. Penn cites an economic review done in October by Johns Hopkins University Professors David S. Salkever and Christine Spencer showing state institutional care runs from $108,000 to $273,000 per patient annually, compared with a community placement cost of $87,600 to $110,000.
Still, some say that some of these patients may need to be in an institution.
"I strongly believe Gary needs to be out. But there are some people who need to be in the hospitals," said Cindy Plavier-Truitt, director of clinical services at Developmental Services Group, where Mr. Williams spends his weekdays. "One on one, Gary does well, but can we afford to do that for everyone? The state is between a rock and a hard place."
At the center, Mr. Williams is paid $4.25 an hour to do simple tasks, such as sorting inexpensive jewelry into plastic bubbles for vending machines. He has his own counselor, Scott Deadrick, who works to curb Mr. Williams' inappropriate behavior and tries to strengthen his poor memory.
Each afternoon as Mr. Williams prepares to leave, Mr. Deadrick must persuade his client to take off the treasured Timex wristwatch his mother gave him. He's not allowed to have it at Perkins, and anything his mother wants to give him -- from a candy bar to a book -- must be approved.
He does get to keep a worn, pocket-size copy of the New Testament. This day, he's reading Mark's Gospel, Chapter 4. He believes God will help him get out of the state hospital.
"Sometimes I read it," he said. "Sometimes I cry."