She fought for patients’ rights, then she was put in a hospital against her will

The Washington Post – by Annys Shin, January 31, 2015

The morning of the recommitment hearing, Alison Hymes sat in a small waiting area of a Virginia mental hospital in a navy blue sweatsuit, clutching a green composition book to her chest.

She’d scribbled down a list of arguments in favor of releasing her from Western State Hospital in Staunton, Va. They included: “Been here too long” and “Becoming institutionalized.”

“I don’t think they will listen to them,” she said.  

Hymes had said similar things at the six other recommitment hearings she’d had over the previous 17 months, after a judge ruled that she was a danger to herself and involuntarily hospitalized her for the second time in three years. Her bipolar disorder had landed her in institutions multiple times over three decades, but never for this long.

The day before the hearing last May, she posted on Facebook: “Afraid I will be committed for two more months.”

Hymes was no ordinary patient. Before landing at Western, she spent years urging others with mental illness and their families not to let doctors, judges and social workers make decisions for them. She was part of a state task force charged with reforming civil commitment laws at the time of the 2007 Virginia Tech massacre, serving alongside doctors, academics, and law enforcement officials.

The daughter of a prominent University of Virginia linguist, Hymes argued vehemently — and unsuccessfully — against loosening the state’s commitment criteria.

Hymes, now 58, believed those changes made it easier for authorities to involuntarily commit her in 2011 and again in 2013.

She was still at Western in November 2013, when local officials said they couldn’t find a psychiatric bed for Austin “Gus” Deeds, then 24, before an emergency protection order ran out, although it later turned out that two private hospitals did have beds. Gus attacked his father, state Sen. R. Creigh Deeds (D-Bath), with a knife the next day, then shot and killed himself.

His suicide dramatically exposed gaps in the state’s mental health system that Hymes and tens of thousands of other Virginians have endured for years. Amid the legislative soul searching that followed, most of the attention was focused on giving mental health officials more time and help finding beds for those in crisis. Hymes represented a different, less-talked-about dilemma: She was occupying one of those scarce beds because there was no appropriate place to discharge her to.

In May, as Hymes waited to find out whether she would be released, her right leg began to shake.

“I’m nervous,” she explained. Hymes then lay down on the bench outside the hearing room and closed her eyes. Strands of her light brown hair were pinned back from her face. There were food stains on the front of her sweatshirt.

To her doctors, her unkempt appearance was evidence that she was still not able to care for herself. On her list of reasons she should be released, Hymes had written, “Hygiene is a choice.”

A few minutes later, the clerk who handled commitment hearings poked her head into the room. The judge was ready to see her.

Anyone who knew Hymes from her days on the state’s commitment task force would not have recognized the timid woman in the hospital waiting room.

She had been a fixture at public meetings on mental health issues for years, with a reputation for challenging anyone, no matter how important.

Author Pete Earley, who served with Hymes on the state panel, described her as the loudest, fiercest voice against involuntary hospitalization and forced medication. “She wouldn’t give an inch and celebrated being an outsider,” he said. “She was relentless if you disagreed with her.”

Hymes was used to passionate debate. She grew up in Philadelphia in a family of accomplished academics. Her father, Dell Hymes, was a professor at the University of Pennsylvania until he took a position at U-Va. in the late 1980s. Her older brother teaches at Columbia University; her sister at the University of Kansas. (All three of her siblings did not respond to repeated requests for interviews. Her mother, Virginia, an anthropologist, is in her early 90s and in poor health.)

Hymes went to Bryn Mawr College, then to graduate school at the University of Pennsylvania. She was studying to be a psychologist when she was diagnosed with bipolar disorder after becoming, in her words, “psychotic.” It was a shock to her, she said, though she doesn’t like to talk about becoming sick. She got treatment and remained at Penn, earned a master’s degree, then decided she liked working as a counselor more than she liked sitting in a classroom and left.

She had never done mental health advocacy before moving to Charlottesville in 1997 to be closer to her parents. But Hymes was tireless, spending hours on the phone discussing strategy. “She never stopped, no matter how sick she got,” said Sherry Rose, a friend who was on the task force alongside her.

Years of taking lithium had ruined Hymes’s kidneys. She was on a transplant waiting list as she served on the task force, spending much of her free time going to dialysis. She coped with humor. A stickler for wearing seat belts, Hymes would chide an unbuckled Rose, saying, “Are we donating? I’ll take your kidney.”

She had less influence than she wanted on the commitment panel, which she believed was aimed at “the deprivation of what little civil liberties consumer/survivors in this state have,” even before Seung Hui Cho’s killing spree at Virginia Tech in 2007.

“It felt like 100 to 1,” Rose agreed.

Hymes supported voluntary treatment and did not see mental illness as a primary cause of violent rampages. The answer, she said, was to “get rid of all the guns.”

In the wake of the Virginia Tech shooting, lawmakers approved $42 millionto bolster community mental health services for about 160,000 Virginians — an amount that was eaten away by budget cutting during the recession. In 2009 and 2010, spending plummeted by $9.2 million for community mental health and by $13.1 million for state hospitals, state figures show.

More significant for Hymes, the state adopted the approach to involuntary hospitalization recommended by the task force. It no longer required that people pose an “imminent danger” to themselves or others before they could be committed, but it also allowed involuntary hospitalization of those who showed a “substantial likelihood” of harm because of an inability to protect themselves from harm or to provide for their basic human needs.

A few years later, that was the standard by which she would be judged.

Hymes was struggling, first with the physical drain of a successful kidney transplant in 2008, and then with the emotional toll of her father’s death in 2009.

In hospital records she shared with The Washington Post, she is described as articulate and well groomed in 2010. A year later, she arrived at U-Va. Medical Center disheveled and disoriented. When asked whether she was mentally ill, she replied, “I don’t really believe in mental disability.”

To clinicians, her answer was a sign of her illness, and they sent her to Western for what became a one-year stay. To her friends in what’s called “the psychiatric survivors movement,” her statement was a sign of sanity. She shared their view of involuntary hospitalization, forced medication and the use of restraints as traumatizing and a violation of civil rights. To them, she was not a patient but a political prisoner.

In September 2011, a fellow member of MindFreedom International, a coalition that works to protect people labeled with psychiatric disorders, issued an online action alert to “Free Alison Hymes!”

Those closest to her saw the situation in less militant terms.

“This is not ‘Free Alison,’ ” said Elizabeth Breeden, a mental health advocate and longtime friend. “The question is, ‘Can ­Alison take care of herself?’ ”

After she was released from Western in August 2012, Hymes was allowed to return to her Charlottesville condominium. For the first few months, Hymes cooked with her home health-care worker and walked to a nearby store for groceries. Then she started to stay in bed and stopped taking at least some of her 17 medications. Four months after her release, Hymes called the police, accusing her home care worker of stealing from her.

“When police arrived at the scene, they were unable to obtain logical answers from her,” read an account written later by her doctor at Western State, where she was committed a few weeks later. “She appeared not to have bathed in a week, smelt of feces and . . . the things she was accusing the worker of stealing were found on her counter.”

She spent her 56th birthday at a local hospital. Birthday wishes from friends and supporters filled her Facebook page. A few weeks later, Hymes replied, using an iPad that her younger brother had sent her for Christmas. Forget the birthday, she wrote, “life sucks and then you die.”

After what happened the last time she’d gone home, her doctors and social workers concluded she needed more support to live independently. Her younger brother lived in Charlottesville, but he was taking care of their elderly mother. The best option was a nursing home. But many are not equipped to handle younger people with mental illnesses, said Western’s director, Jack Barber.

“The more you need, the less there is,” explained Barber, who served on the commitment task force with Hymes but would not comment on her case, citing privacy laws.

The lack of discharge options ultimately affects the availability of emergency crisis beds, a 2012 inspector general report concluded. In September 2014, about 11 percent of adults in the state’s eight psychiatric hospitals were clinically ready for discharge but unable to leave because there were no appropriate place to put them, state figures show. The annual cost of serving someone in a state hospital is about $214,000, compared with around $44,000 in the community, the report said.

Virginia’s mental health system is “out of balance,” said Debra ­Ferguson, who heads the Department of Behavioral Health and Developmental Services. She described it as “overly reliant on emergency services and in-patient hospitalization” at a time when state hospitals have been downsizing.

Western, for example, moved from a cluster of low-slung, ­mid-century brick buildings to a $140.5 million glass-and-brick compound that is a monument to deinstitutionalization. At its peak in the 1960s, Western housed 3,000 patients at two sites. When the new building opened in November 2013, it housed 184, including Hymes.

At the new hospital, Hymes had a small room with a window that looked onto a basketball court. A red plastic bed frame was fixed in the center. Her clothes were strewn on built-in shelves made from the same plastic as the bed frame. Under the window, a plastic desk was piled with her stash of Dr. Pepper and Fritos.

Every day, there were tiny calamities that had the potential to hurt her chances of getting out.

One recurring issue was her habit of cramming food into her mouth. For months, she ate with a staffer who stood by with a suction device, in case she choked. Hymes said the problem was related to an ill-fitting denture. Doctors were also concerned about her resistance to regular showers, even when her clothes were soiled.

There were signs of progress. In April 2013, doctors described her as “agitated.” By year’s end, she was showering once a week and was “fairly articulate.”

When outside pressure against her hospital commitment did not work, Hymes grew dejected. A doctor described her as “feeling hopeless and helpless” and saying, “ ‘I give up.’ ”

By early 2014, she still was not doing everything that was asked of her — bathing three times a week, doing laundry once a week, 100 percent attendance at group therapy sessions — but her doctors were beginning to accept they might have to release her anyway.

“It might be that Alison is going to regress no matter what we do,” one wrote. “And our insistence that she not regress is us beating our heads against a stone wall.”

Social workers began a lengthy and frustrating search for a home that could meet her needs. At one point, they were told she could go to Trinity Mission Health/Rehab, a Charlottesville nursing home, only to be told later that its operators had decided to stop offering long-term care. Two more homes also turned them down, while others had no openings.

“It is going to be very difficult to sell Alison to any nursing home,” one caregiver wrote, “as she does indeed need long-term placement.”

Last May, as she took a seat in front of a judge and an evaluator, she didn’t really believe the outcome would be different from the previous six recommitment hearings.

But it was. Instead of her legal-aid attorney, she brought a Post reporter. The hearing was postponed to give her attorney a chance to attend. Then, the next day, Hymes got word that an ­assisted-living facility in Charlottesville had agreed to take her. She was told she could be out in a couple of weeks. For the rest of the day, Hymes said, she cried on and off, partly out of joy and partly out of fear. ­“I am afraid,” she said, “I will fall apart again.”

Hymes was discharged one morning last June. Her clothes had been haphazardly thrown into a row of boxes lining the right wall of her room. On the shelf was a watercolor Hymes had painted of neatly colored squares, featured in a gallery show of patient art that she wasn’t allowed to attend because of her behavior.

Hymes lay on the bed for a few minutes, then she made her way to a common area where she ran into social worker Wanda Saner, who would be taking her to Charlottesville.

“Here are your valuables,” said Saner, opening an envelope and taking out the artifacts of Hymes’s previous life: her condo keys, her Virginia driver’s license, three blank checks, a debit card and a smaller envelope marked “bracelet.”

While Saner loaded Hymes’s belongings onto a cart, Hymes and a community services board worker named Jennifer Lewis talked on a screened porch. Lewis, who works with patients returning to the community from Western, had already taken Hymes to see her new home, a small ­assisted-living facility located about two miles from her condo. She’d liked the look of the two-story brick building, which housed 20 women and men, most of whom appeared ­older than Hymes by 10 years or more. Her room next to the dining room was simple, but it had a private bathroom.

The morning of her discharge, though, she seemed less enthusiastic about the place. “I’m scared,” she said.

Lewis nodded. “What are you going to do with those feelings?” she said. “What coping skills have you learned? You were at Western before. How did it feel to be out? Just talk to somebody. Don’t hold it in.”

Hymes listened quietly. Then she had a question: “Can I lie down when I get there?”

A few weeks before Christmas, Hymes stepped out of a spitting rain onto the porch of a yellow Colonial in Charlottesville. She was bundled in a purple cardigan, a black winter jacket and pants. There were stains on her clothes, and she had started carrying a paper towel for wiping her face. She complained that her dentures were making her drool.

The house was a drop-in center called On Our Own. Hymes was familiar with it because, she said, she used to sit on its board. She’d come for a weekly peer support group on assertiveness.

Her adjustment to her new life had been difficult. She had not seen much of her mother and younger brother. The staff at the adult home nagged her to straighten her room, she said, and had scolded her once for not cleaning up after she’d vomited in her bed. She’d thought fleetingly about going to the emergency room, only to dismiss the idea out of fear of going back to Western.

At On Our Own, about a dozen men and women took turns introducing themselves and saying whether they had been assertive during the previous week.

When it was Hymes’s turn, she said: “My name is Alison, and I have not been very assertive in the past three weeks. I live in an adult home, and they yell at me, and I don’t say anything. I hide in my room.”

She looked out at nodding heads and sympathetic faces.

For the next hour, they discussed how to be assertive — with siblings, bosses, social workers — without being aggressive. While others talked, Hymes stared ahead or at a handout in her lap.

In the coming weeks, she would spend Christmas with her brother and mother, and she would improve enough that, by ­mid-January, there was talk among her treatment team of moving her back to her condo before winter’s end. But that day in December was about smaller milestones.

Hymes worked up the courage to tell the group that she was having trouble making eye contact with people. A younger woman said she’d had the same problem, and it helped to practice with friends first, before moving onto people she had just met.

When it was time to wrap up, people began putting away chairs and heading into the kitchen for food. Hymes lingered on one of the couches. Then she turned to the woman sitting next to her, met her eyes and slowly smiled.

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