Tag Archives: USA

Guardian: Housing the mentally ill in the US

A safe place to stay: the struggle to find housing for America’s mentally ill patients

Geraldine, 64, has spent the past 20 years trying to find a safe place for her son. But a chronic shortage of ‘supportive housing’ for people with mental illness has taken its toll, and, as she tells Amanda Holpuch, ‘I know what happens. He ends up in jail’

 Thomas Dart: America’s jails are the new mental health asylums

 Are you a caregiver for someone with mental illness?

Estimates suggest somewhere between 70,000 and 96,000 homeless people have severe mental illness.

At any given time, there may be a few hundred homeless people in Seattle’s Pioneer Square neighborhood, huddling under the overpasses from the persistent Washington rain. It’s a familiar place for Geraldine, who has spent the past 20 years caring for her 38-year-old son, who is mentally ill.

When her son is not in prison or in hospital, Geraldine, 64, makes daily visits to a three-block area to bring him food, drink and warm clothing. She knows the color of his sleeping bag, and seeks it out among the dozens of others in between the shopping carts and trash bags. Sometimes he rejects her help. Other times, he gives her gifts to other people on the street.

Often, her son has lost more weight, and his hair is more unkempt. His eyes look distant and strained.

These days, however, instead of going to Pioneer Square, Geraldine makes aweekly trip to a psychiatric hospital, where her son is being treated for schizophrenia.

It’s the longest Geraldine’s son has been stably housed since his initial diagnosis nearly 20 years ago, but she’s afraid he will end up back on the streets, in prison, or dead – because of the lack of safe, long-term housing available to people with severe mental illness.

“It’s all-consuming. I think about it all the time, even when I’m doing things I enjoy,” Geraldine told the Guardian. “Then I think about him and how he is living.”

Ever since her son disappeared from home as a teenager, he has ping-ponged through jails, homeless shelters, halfway houses and the streets, and Geraldine has spent that time working to find him a safe place.

She emails, calls and meets advocates, politicians and administrators on her son’s behalf. She is not comfortable providing her surname – her complaints within the system have caused her to be a recognized name, and she is afraid those complaints will affect her son’s chances to receive adequate care. She also asked that her son not be named.

Geraldine, who has two other children, believes stable housing is the only way her son can manage his schizophrenia and lead a safe, healthy life. Despite being her son’s primary caregiver, Geraldine doesn’t have the resources to provide him with the so-called “supportive housing” she believes he needs, and which, research shows, could keep him from returning to jail or the emergency room.

Gretchen Locke, at social policy thinktank Abt Associates, has researched homelessness for more than 20 years, and is a firm believer in the power of supportive housing.

“It really does facilitate stable housing, and also reduces the use of expensive crisis care, which is often where homeless people end up. If [people with mental health problems] are not stably housed, they’re more inclined to end up in the emergency room or jail or detox and those kind of expensive safety net services,” Locke said.

“Stable housing can provide a platform for addressing mental illness that may not have been addressed in the past.

Once in supportive housing, mentally ill people rely less on other expensive services, according to a University of North Carolina Charlotte study from February this year.

Researchers found that the total hospital bill for 61 chronically homeless adults – 38 of whom had a mental illness – decreased by $1.8m over one year that they spent in supportive housing. Once in housing, residents had a 78% reduction in emergency room visits and a 79% reduction in days spent at the hospital.

Supportive housing programs don’t always pay for themselves, but because mentally ill people tend to use more expensive services, the costs of putting them in supportive housing are often offset by decreases elsewhere, said Dennis Culhane, a professor of social policy at the University of Pennsylvania and the director of research for the National Center on Homelessness among Veterans at the US Department of Veterans Affairs.

“Being homeless involves a range of dehumanizing experiences, and also greatly puts people at risk of victimization and exposure to injury – as well as being marginalized,” said Culhane. “Housing, by its nature, affords people protection: socially, physically and emotionally. So its really about transforming people’s quality of life.”

Geraldine is an expert on these type of supportive housing programs, and is a familiar face to workers at one of the programs in Bellevue, which she hopes her son can get into when he’s discharged.

In January 2013, more than 387,800 people were homeless, according to government estimatesA 2006 study shows that 20 to 25% of the single adult homeless population has some form of severe mental illness. That suggests somewhere between 70,000 to 96,000 homeless people have severe mental illness.

The amount of supportive housing is increasing, but turnover is relatively low in those units, and the demand is high.

Left without reliable housing, Geraldine’s son has been hospitalized involuntarily at least four times. Hospitals are often overwhelmed by the number of people seeking psychiatric care, in part because the amount of psychiatric beds available decreased by 14% from 2005 to 2010, according to the Treatment Advocacy Center.

The alternative to hospital care – prison – terrifies Geraldine. “People tell me to stay away and see what happens,” she said. “I know what happens. He ends up in jail.” Her son has been incarcerated at least 20 times.

Incarceration is a fairly common fate for people with severe mental illness. Jails house 10 times as many mentally ill people as state hospitals,according to an April 2014 Treatment Advocacy Center report. The three largest state-operated mental health facilities in the US are Cook County jail in Illinois, LA County jail, and New York’s Rikers Island jail, where a homeless veteran on anti-psychotic medication was “baked to death” in March.

 Speaking to a congressional panel in March, Cook County sheriff Thomas Dart explained how his jail was an example of the way mental illness has been “criminalized” in the US.

“While some mentally ill individuals are charged with violent offenses, the majority are charged with crimes seemingly committed to survive, including retail theft, trespassing, prostitution and drug possession,” Dart said.

Dart said that in 2013, more than 1,200 men were in the mental health dorm of his jail for an average stay of 87 days before they even went to trial. At that rate, it cost more than $12,000 to house each personfor a total of more than $14m.

“Far too many times, they are released to the community, where the vicious and predictable cycle starts over,” Dart said.

The first time Geraldine’s son went missing, she called jails and hospitals across the western US, eventually finding him at a jail in Arizona, where he was being held on an assault charge. He had been missing for nearly a year by then. Geraldine still doesn’t know how he made it from Washington to Arizona in that time – he left home without money.

She bailed him out of the jail and put him in a hotel room, where he made calls in the middle of the night and flooded the bathroom because, convinced the shower curtain was covered in germs, he refused to use it. Geraldine could tell her son was afraid of her, but she didn’t know anything about mental illness, and assumed his behavior was drug related.

Geraldine, mental health
 Geraldine has been looking after her son for 20 years. Photograph: Amanda Holpuch for the Guardian

She left; he ended up in jail again. She came back; he was put in a hospital. She moved to Arizona; he was discharged to a halfway house. Then he violated probation by having marijuana in his system and was put in jail again.

“That’s the beginning, and it hasn’t changed,” Geraldine said. “Wherever he is, I fly there, and try to get him help.”

Geraldine is now an unofficial expert on how to get prison guards, hospital staff and municipal workers to give her information they swear they aren’t supposed to tell her. She routinely skirts government bureaucracy to get her son basic necessities, like an identification card he needed in order to apply for benefits.

“I’ve been fortunate – would he push that hard? Or know to? Would he have anyone in his life to do that? Would my sons do that? Even if they want to, I don’t think they would. It’s taken 20 years to learn what to push and what not to push.”

Geraldine conservatively estimates that she’s spent $100,000 on her son in the past 10 years. That money does not include his hospital stays, which are absorbed by the hospital, or jail time, which is paid for by taxpayers.

Geraldine has lost a self-created business and had cancer four times. She started to see a therapist for the first time in March and recently took up exercising again. She works seven days a week, in part because this has been her most difficult financial year ever, and in part to try to take her mind off her son.

In December, Geraldine went to Seattle’s mental health court in an attempt to keep her son institutionalized. While there, she had to take the stand and testify about her son’s mental health. She had to recount the times he attacked her, his stints in jail, the early hours he’d spent pacing outside her suburban apartment and his delusions, including the times that he has believed he is Jimmy Carter, or Jesus. And she had to talk about the premonition he had that, in 2015, he killed his mother.

“You have to say all the worst things you could possibly say or they’re not going to hold him,” Geraldine said. “It’s heartbreaking. It’s betraying. It’s the worst [thing] in the world and you lose all trust.”

While she was in the courthouse, she held the elevator door for a person pushing a wheelchair. When she turned to look at the man in the wheelchair as it came up next to her, she realized it was her son. Seeing him vulnerable and disheveled, she began to cry. That’s when, she said, he told her: “You asked for this, mom. This is what you wanted.”

Of course, that was not what she wanted. Her dream is to be able to afford a home with a guest house, so her son can be in a safe, stable situation and still have some sort of independence. Since that’s a financial impossibility, she hopes she can at least get him a safe place to stay when he is discharged from the psychiatric hospital, a prospect that terrifies Geraldine and could happen any time.

For now, the judge hearing Geraldine’s son’s case ruled that he must stay in hospital. Still, he’s at the best place he’s been since his initial diagnosis. He works at the hospital cafe and is reading books on how to become a peer counselor. While he is safely off the streets, her biggest preoccupation is where he will end up next and how long he will be able to work towards the life they both want for him, one in which he can manage his symptoms before his progress is halted or reversed.

“As a parent you think, I mean, I know I made a lot of mistakes, I worked all my life … Everybody wishes they had done certain things differently,” said Geraldine. “I just feel like, with all of this I still can’t, I still can’t change anything. I don’t believe in living in fear, I believe in being optimistic and hoping that there is an answer and believing in something.”

 

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Let families sort it: Mental health care in the US

The first instalment in a series on the state of mental health care in the US finds a system grossly insufficient to handle demand, leaving many patients, and their caregivers, to fend for themselves.

America’s mental health care crisis: families left to fill the void of a broken system

The first instalment in a series on the state of mental health care in the US finds a system grossly insufficient to handle demand, leaving many patients, and their caregivers, to fend for themselves

 Share your story: are you a caregiver for someone with mental illness?

Woman striking a match in a dark room
‘There wasn’t a single moment of horror,’ Jennay Ghowrwal said of her mother’s health. ‘It was kind of like a slow burn.’ Photograph: Chloe Cushman/Guardian

As Jennay Ghowrwal and her brother prepared to leave their mother’s house in Bethesda, Maryland, in March 2011, they got ready for an ugly conversation.

For nearly two years, the Ghowrwals’ 65-year-old mother had been living alone with untreated schizophrenia. She refused medication. She wouldn’t see a doctor. The Ghowrwals’ Sunday visits were a critical part of the makeshift care system they’d created around their mother. And it was when they gave her a weekly allowance.

“That was the worst part,” says Jennay Ghowrwal, 28. “She always asked for more than she was going to get.”

But that spring afternoon, their mother’s demands were more extreme than usual. She demanded $2,000 because, she said, she needed a haircut. Frustrated, and weary of her mother’s emotional instability, Ghowrwal refused. “I said, ‘No, Mom. I’m sorry. We can’t give you that.’”

Her mother went quiet.

When she started to talk, her speech was quick and difficult to decipher. The CIA was after her. Her kids were out to get her.

“If I can’t have control over my life, then they can’t either,” she screamed through tearsThen she grabbed a box of matches from the kitchen table, and lit one. As the match burned in her mother’s fingers, Ghowrwal remembers being relieved, thinking:

“Finally. The moment we’ve been waiting for.”

In the last several years, national tragedies like the shootings in Newtown have put pressure on the government to improve access to mental health treatment in the US. This weekend’s violence in Santa Barbara has reignited the issue. But behind these headline-grabbing mass killings, there’s a much broader crisis.

The most publicised reform came in November 2013 when the Obama administration issued regulations directing all private American insurance plans to cover mental health care equally to other kinds of medical care. These regulations mean, among other things, that co-payments and caps for mental health-related treatment cannot be more expensive or restrictive than for any other type of medical care.

There’s just one problem: while Obama may have expanded access to mental health benefits, the reach of the services those benefits theoretically provide hasn’t kept up. The availability of mental health care in the US remains woefully inadequate to handle current demand, never mind a potential influx of new patients.

Paul Appelbaum, a Columbia University psychiatrist and expert on legal and ethical issues in medicine and psychiatry, used a simple phrase to sum up the biggest problem facing US mental health care.

“Right to care does not mean access to treatment,” he said, adding that “tens of millions of people who did not have insurance coverage may now be prompted to seek mental health treatment. And the capacity just isn’t there to treat them.”

“There really is no mental health system in the US,” Appelbaum said.

“A system requires a vision. What we have is a shapeless void.”

Appelbaum’s blunt assessment was echoed by dozens of doctors, patients and caregivers with whom the Guardian spoke for an investigation into the US mental health care system. Inadequate access to treatment services and providers all over the country, has left families of the mentally ill picking up the burden, and the cost, of providing care.

The Ghowrwals are one such family.

Jennay Ghowrwal
 Jennay Ghowrwal at home in Baltimore, Maryland. Photograph: Ruth Spencer for the Guardian

Jennay Ghowrwal’s mother hadn’t always been sick.

In 1976, she came to the US from Afghanistan on a prestigious Fulbright scholarship. She first settled in Ohio, where she met her husband. In the early 80s, Ghowrwal and her brother were born.

When Ghowrwal’s mother got a job in DC working for the government, the family of four relocated to Virginia. There, they lived an uneventful life, until 1994, when their father died following a series of strokes.

Over the next few years, Ghowrwal’s mother poured herself into her work and rose through the ranks in the Defense Department, and eventually gained a high security clearance position at an intelligence agency. “Nothing seemed to throw her off,” Ghowrwal says.

Though she lived in the US for years, Afghani culture was always a vital part of her mother’s life. While in Virginia, she became a fixture in the Afghan community. “She was always taking on new challenges,” says her daughter. She started a non-profit Afghani women’s organization and even hosted her own public access television show about Afghani culture. In fact, in retrospect, one of the first signs something was wrong, Ghowrwal says, was that she stopped doing her show. But not everything was so obvious.

Passing comments about ever-present government surveillance were justifiable, Ghowrwal reasoned, because her mother worked at an intelligence agency. When her mother complained of workplace harassment, it again made sense; the Ghowrwals were Afghan immigrants living in post-9/11 America.

But her mother’s behavior at work soon became stranger, harder to ignore. She started having crying fits at her desk. She lashed out at colleagues. It didn’t take long before her co-workers reported her to their supervisor, and her employer began investigating her, eventually assigning a psychologist to review her mental state.

“Personality disorder,” the psychologist wrote on the report, and recommended treatment if she wanted to keep her high-security clearance – and her job.

At first, Ghowrwal sided with her mother. “I read the report with the sense that her employer wasn’t being honest – and less with a suspicion that any of that was true. I don’t know why I was so skeptical other than I had never had a sense that my mother was detached from reality,” she says.

Still, although Ghowrwal didn’t yet believe that her mom was ill, she encouraged her to seek treatment for the sake of getting her job back. “But when we talked about it, she laughed and said ‘I’m not doing that,’” Ghowrwal remembers.

After she refused to follow the psychologist’s instructions, Ghowrwal’s mother was fired. She’d been making a six-figure salary, and had premium health insurance. Both were now gone.

Ghowrwal, who had just returned from a semester abroad in Chile, was now faced with an unemployed, unstable mother and burdened with the task of finding out what was wrong – and how to deal with it.

She moved out of her dorm on campus, and back into her childhood bedroom. Without an income, Ghowrwal’s mother was blowing through her savings. Ghowrwal took a job and helped with mortgage payments, bought groceries and paid utility bills. She cooked, she cleaned, she tried to keep her mother calm. Her life as a carefree college student was over.

“I don’t think I realized how messed up I was. I was emotionally unstable and angry all the time,” Ghowrwal says. “I would blow off assignments and my grades really suffered. I failed a few classes. And yet I was unaware that at the center of all this confusion was something truly life-changing.”

Living at home, Ghowrwal watched as the woman who raised her became someone else entirely. She was obsessed with finding a job, but would make up excuses for why she couldn’t follow through on her applications. She demanded her children spend time at home, but her unpredictable behavior made their time together untenable.

“Everything was becoming about the delusions. She started to throw plates during arguments. She once threatened to kill my brother if he married a woman she didn’t approve of,” Ghowrwal says. As their mother became more unstable, Ghowrwal and her brother realized they needed to get her help.

“There wasn’t a single moment of horror,” Ghowrwal says, describing her mother’s deteriorating mental state. “It was kind of like a slow burn, building up to a flame of terribleness that eventually did reach a breaking point.”

First, they tried a tactical approach, asking their mother to seek treatment for their sake. “We told her seeing a therapist might help her be ‘less stressed’”, Ghowrwal says. “We didn’t even bring up medication.” But her mother refused. Time and time again. “We kept asking her, but eventually she started to get angry with us for bringing it up. There was no use,” Ghowrwal says.

Eventually, Ghowrwal and her brother looked into other options. “We started to realize that she needed to be forced into treatment.”

“Involuntary commitment was just sort of a thing we thought logically existed in society for people who needed it,” Ghowrwal says. She and her brother went to court to try and get an order for their mother’s hospitalization. But because of high commitment standards, their petitions were refused.

“The judge basically told us she would have to be wielding a knife in someone’s face at the moment that the petition was made. Or, alternatively, dying of hypothermia in her car.”

Appelbaum says the “dangerousness” standard, which means a patient must be at risk of hurting themselves or others before they can be hospitalized against their will, makes it difficult for the families of seriously mentally ill people to get them into treatment. In order to get their loved ones the help they need, they often have to stand by and watch them spin out of control.

“The most agonizing calls I get are from family members who clearly are very worried about a loved one with a serious mental illness,” he says. “I have to tell them that unless you can make a case that your loved one is likely to harm themselves, or likely to harm other people, or you’re willing to throw them out on the street, there’s no way to get them into the system. The involuntary system is very tightly constrained by these dangerousness criteria.”

Dangerousness was not always the standard for involuntary treatment. Up until the 1970s, a mentally ill person only had to be “in need of care” in order to qualify for involuntary hospitalization. But as the deinstitutionalization movement gained momentum, attitudes toward mental health care evolved. One by one, states found “need of care” to be unconstitutionally broad, and unconstitutionally vague, and narrowed their standards to dangerousness. At the time, it made sense.

“These decisions were issued in an era when a majority of people were being hospitalized in large state institutions, which were typically underfunded understaffed and provided poor care,” Appelbaum says. “The courts were responding to that as well as the more theoretical constitutional argumentation.” One consequence of this change is that today, families have to wait for their loved ones to reach, as some call it, “rock bottom” before they can receive the care they need.

For help understanding the intricacies of the mental health system (and why it was so difficult to get her mother hospitalized) Jennay Ghowrwal turned to her local chapter of NAMI’s Family2Family support group, for people with mentally ill loved ones.

“Hitting ‘rock bottom’ was a theme people would raise [in the group],” Ghowrwal says. “That’s what it takes. Let them fall hard enough and then they’ll get treatment’, they’d say.” For many of these families, this meant letting their loved ones become homeless, suicidal or homicidal.

When Ghowrwal watched as her mother stood in her kitchen, burning match in hand, she knew it was her chance. She picked up the phone and dialed 911.

 After she lit that match, Ghowrwal’s mother was, as Ghowrwal had hoped, admitted to a hospital. But two weeks later, she was out again.

“All the doctors agreed with us that she needed to be there,” Ghowrwal says. “I couldn’t understand how she could be let out.”

With the match incident, Ghowrwal’s mother had finally met the dangerousness standard, which was enough to get her committed. But it wasn’t enough to get her treated.

In Maryland, at the time Ghowrwal was hospitalized, a patient had to be deemed dangerous in his or her community to be admitted involuntarily. But, to be medicated involuntarily, a patient had to be deemed dangerous a second time, while in the ward itself. And, of course, a patient who might be very dangerous on the street could potentially pose no issues while hospitalized.

The problem with this, Rebecca Birnbaum, a clinical researcher at the Lieber Institute for Brain Development in Baltimore, notes, is that anti-psychotic medication is critical to treating schizophrenia.

“Without medication and therapeutic sessions, patients and families endure a lot more suffering,” Birnbaum says.

Recognizing the barrier to treatment that the law presented, officials in Maryland finally changed it this year.

Even with treatment, however, some experts say that patients need to be spending more time in the hospital than wards permit.

“In the 1980s, average length of stay was probably 20-30 days, whereas today it’s a week or less in most places,” Appelbaum says. “That’s not a lot of time to stabilize somebody in a psychotic condition or somebody with severe depression.”

For the 15 days Ghowrwal’s mother was held in the hospital, she did not exhibit acts of aggression considered dangerous enough to merit medication. Without the medication necessary to treat her delusions, she was released in essentially the same state that she was in when she was admitted.

Appelbaum says the fall in the length of stay on inpatient units is driven by two important factors: one, a drastic drop in inpatient beds over the years, and two, as demand for beds has increased, psych wards haven’t expanded.

“The public sector in this country has shrunk to just a mere ghost of its former self,” Appelbaum says. “In the mid 1950s there were over 555,000 people at any given time in psychiatric hospital beds. There are fewer than 55,000 [beds] in service today.”

Moreover, psychiatric wards lose money. Their patients are, more often than not, on Medicaid, which has a very low reimbursement rate for care providers. “The returns are just not enough to cover the cost of care,” Appelbaum says. According to him, no matter how many patients cycle through the beds, or how long the waiting line is behind them, psychiatric wards are rarely, if ever, expanded. As a result, patients are let go too early, making it even more likely that they’ll cycle through the system again.

When Ghowrwal went to pick up her mother at the hospital, she says the doctors understood her predicament. “They were like: We get it. It sucks. Here’s what we can offer.” They sent her mother away with prescriptions for antipsychotics and referrals for community mental health centers.

“We asked our mom, ‘Are you planning to do any follow up treatment?’ and she laughed it off,” Ghowrwal says. Left without any other option, Ghowrwal drove her mother home, which is where she remains today. “As far as I know she threw the prescriptions in the trash,” Ghowrwal says. It’s been three years since she was released, and she hasn’t seen a psychologist or a psychiatrist since.

Faced with few options, and unwilling to watch their mother bottom out again, the Ghowrwal children have taken matters into their own hands.

Jennay Ghowrwal and her brother have, at great personal expense, created a world in which their mother can live on her own and be safe. They check in on her regularly. They pay all her bills. They’ve learned to handle her delusions. It has not been easy.

Her persistent distrust of the government means she refuses to accept any assistance from it. Attempts to relieve some of the financial burden have included tricking their mother into signing up for food stamps. “We got her to sign a random piece of paper, just so we could get her signature,” says Ghowrwal.

Ghowrwal estimates that in the last six years, she and her brother have spent upwards of $140,000 on her care. “Each month, my brother and I spend about $2,000 on her.” she says, adding that her mother has been relying on those funds for about six years. “She’s our mother. I don’t want to imagine what would happen if she was living on the streets.” Throughout her years caring for her mother, Ghorwhal has become passionate about improving mental health care. Just this year, she took a job working for the Treatment Advocacy Center.

If the Ghowrwals lived in one of the 45 states that offer outpatient commitment (also called Assisted Outpatient Treatment), things might be different. Outpatient commitment is a policy in which certain patients are ordered by a court to continue treatment, like visiting a psychiatrist or taking medication, while living outside the hospital. Connecticut, Massachusetts, New Mexico, Tennessee and Maryland are the outliers.

Paul Appelbaum says studies of outpatient commitment programs shows that they do a lot of good for the people who need them. “The data suggests that with that sort of structure, with a court order in place and the services made available, people are much less likely to be re-hospitalized, they are much less likely to end up in jail and less likely to be homeless. All of the major outcome measures that you’d wanna look at for this group are moved significantly in the right direction by outpatient commitment.”

This year, the Maryland House defeated a bill proposing outpatient commitment. But according to Jeffrey Janofsky, director of the Psychiatry and Law program at Johns Hopkins University in Baltimore, making it law wouldn’t be enough to guarantee the program’s success anyway.

“There’s no point in passing legislation if you’re not going to provide the funds to back it up,” he said. “New York has a particular kind of outpatient civil commitment law, but that law comes with millions of dollars of funding for necessary services. The real question in Maryland is, are we as a society going to spend the money to treat patients with significant mental disorder? And we’ve decided, ‘No, we are not.’”

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