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

As Jennay Ghowrwal and her brother prepared to leave their mother’s house in Bethesda, Maryland, in March 2011, they prepared themselves 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 where 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 tears. Then 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 US government to improve access to mental health treatment. This weekend’s violence in Santa Barbara has reignited the issue. But behind these headline-grabbing mass killings is 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 in the same way as other 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 an expert on legal and ethical issues in medicine and psychiatry, uses a simple phrase to sum up the biggest problem.

“Right to care does not mean access to treatment,” he says. “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.”

‘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.



Facebook Twitter Pinterest 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 Washington working for the government, the family of four relocated to Virginia. There, they lived an uneventful life, until 1995, 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, Afghan culture was always an important part of her mother’s life. 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 Afghan women’s organization and even hosted her own public access television show about Afghan 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. 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 difficult.



“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 reached 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.”

Paul 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,” Appelbaum 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 in-patient 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.’”