Families in mental health crisis feel abandoned by NY’s care system. Can it be fixed?


January 19, 2023

By David Robinson

Key Points

  • On average, New York mental health patients spent five and half hours in emergency rooms per visit in 2021
  • Some of the longest waits across the Finger Lakes, Hudson Valley, Southern Tier, and Mohawk Valley stretched up to 12 hours
  • New York ranks 10th-worst nationally in terms of longest emergency room wait times for mental health patients

Inside NY mental health crisis: Hours in the ER. Calls to police. Waiting months for care.

An emotional mix of guilt, shame and fear gripped Sara Taylor each time she considered calling police to help resolve her 11-year-old daughter’s mental health crisis.

As a Black woman, she knew responding officers may hold some form of racial bias and be ill-equipped to handle the high-stakes interaction at their Rochester home.

But Taylor had no choice, she said, because New York’s mental health system had failed them.

Cycling in and out of psychiatric emergency rooms, they often spent hours awaiting a doctor’s evaluation, only to be dismissed as a behavioral issue and sent home to await the next crisis.

Feeling helpless, Taylor found herself dialing 911 a total of six times for mental hygiene arrests of her daughter in recent years. Instead of a patient, her daughter was treated like a criminal, Taylor said.

“The level of trauma and pressure that puts on the family is devastating,” she added.

These types of stories, however, appeared to reach Gov. Kathy Hochul, who last week revealed a $1 billon plan to fix New York’s mental health system.

“The barriers are seemingly endless,” Hochul said, detailing mental health care deserts, insurance coverage gaps and long waits for psychiatric hospital beds during her State of the State address.

“As a result, people have been forced to suffer in silence,” she said. “Illness grows when it isn’t treated. And so, it is no surprise that the number of people suffering from mental illness has continued to grow.”

How bad are mental health ER waits in NY?

Taylor’s harrowing experience is far from rare, as New York ranks 10th-worst nationally in terms of longest emergency room wait times for mental health patients, a USA TODAY Network analysis of federal data found.

On average, New York psychiatric patients spent five and half hours in emergency rooms per visit in 2021. Some of the longest waits across the Finger Lakes, Hudson Valley, Southern Tier, and Mohawk Valley stretched up to 12 hours, the data show.

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Advocates and patients have also reported months-long waits for access to residential psychiatric programs, some of them forced to travel hundreds of miles for a bed. They’ve described spending days in hospital wards without the proper level of mental health care.

One of them is Jenn O’ Connor, who spent countless hours sitting in emergency rooms with her teenage daughter, awaiting her psychiatric placement during suicidal episodes that benefited little from the constant medical alarms, glaring lights and chaos of the ER.

At one point, the teen was placed at Four Winds Hospital, an inpatient psychiatric facility in White Plains, about a two-hour drive from the family’s home in the Albany region.

Unable to visit her daughter for up to a week at a time due to work and logistical challenges, O’Connor, director of policy at Prevent Child Abuse NY, recounted her sleepless nights and traumatic phone calls during the days apart from her daughter.

“That distance damages a relationship and makes it very, very difficult for everyone,” she said.

How will NY officials act on mental health crisis?

Hochul’s plan, in part, calls for adding 1,000 inpatient psychiatric beds to the system, as well as other measures aimed at shoring up services, outpatient care and housing for mental health patients.

But the plan, so far, lacks key details about addressing issues such as inequality and racial disparity in mental health, as well as acute bed shortages for children and rural communities, advocates and health leaders say.

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Hospital leaders also raised concerns about Hochul’s plan to issue $2,000 fines per day for hospitals that fail to re-open psychiatric beds closed during the pandemic, citing the ongoing struggles in some communities to handle rising patient loads, staffing shortages and budget shortfalls.

“I’d like to see more of a carrot approach where funding is provided if there are beds closed,” said Kathy Parrinello, chief operating officer at Strong Memorial Hospital in Rochester.

Debate over Hochul’s push to reverse decades of disinvestment in mental health care will be part of the state budget process, which typically ends in early April.

Data on waits for psychiatric beds unclear in NY

Yet, strikingly, specific wait-times for mental health patients to access inpatient psychiatric beds remain unclear because that data is not tracked, according to state officials.

In response to USA TODAY Network questions about the issue, state Office of Mental Health officials said recently that they plan to create a “new reporting system, which will increase accountability and oversight to ensure consistent and accurate hospital reporting” on inpatient psychiatric bed wait times.

The move comes after a prior state system launched with a $150,000 federal grant in 2019 to help reduce psychiatric bed wait times, in fact, did not track wait times. Instead, it required hospitals to report psychiatric bed availability twice daily before being shelved in 2020 due to pandemic demands taking priority, state records and official statements show.

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Matthew Shapiro, senior director at National Alliance on Mental Illness-New York State, described accessing psychiatric services as quickly as possible as a “key component to recovery.”

“This is especially true when one’s condition is serious enough to require hospitalization,” he said. “The fact that there does not seem to be sharable data to demonstrate the true enormity of this issue is disappointing.”

What we know about NY mental health failures

Still, the systemic failures in New York’s approach to mental health, in some ways, are revealed through the information that is publicly available.

The access and affordability gaps, for example, left 911,000 adult New Yorkers who reported unmet need for mental health treatment in 2019, according to a Kaiser Family Foundation analysis.

Put another way, about 6% of adults ages 18 and above lack essential mental health care, which is slightly below the national unmet need average rate of 7.4%.

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The pain and suffering caused by untreated mental illness is most acute for parents and caregivers of children, according to the Campaign for Healthy Minds Healthy Kids advocacy group.

Among the statistics:

‘Our children are dying, our families are suffering’

Taylor’s daughter, now 14, is currently getting the treatment she needs in a residential program, but Taylor still has concerns about access hurdles and racially biased care in the future.

“I can’t even imagine, for me, that we’re still breathing and alive after everything we’ve been through,” she said.

Their mental health odyssey also prompted Taylor to start the Partners in Community Development BIPOC PEEEEEEK Mental Health project, which seeks to improve mental health care in communities of color in Rochester, Buffalo and Syracuse.

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“It’s not just how my family was treated,” she said, “but how other parents who called me saying ‘Our daughter is cutting herself, but we won’t call the police or go to the hospital because child protection is called on us.’”

“Our children are dying, our families are suffering,” Taylor added.

Some of the problems are obvious, such as lengthy wait lists for beds and racial biases deeply entrenched in American medicine. But some lesser-known mental health care failures can be something like providing culturally appropriate hair care and food in programs.

“When you talk about my daughter, who already had self-esteem issues, not getting her hair done in residential is really important,” Taylor said.

For O’Connor, whose daughter is now 19 and relying on outpatient mental health services, the struggles to access pediatric mental health have left them skeptical about what they can expect from the adult system.

“We know how to navigate it better now, but we also know you can’t just make a phone call and get care that you need,” she said.

NY region acts to shore up its mental health care

During the pandemic, rising demand for mental health care in the Finger Lakes region has already prompted Strong Memorial Hospital’s health system, UR Medicine, to invest $7 million in expanding inpatient beds for adults and children, Parrinello said.

That spending includes about $1 million per year to lease 50 rooms for transitional housing for mental health patients. The system also launched a mobile mental health van for underserved kids and is poised to open a walk-in urgent care for child behavioral health to ease pressures on the ER.

Parrinello described the diverse mix of mental health services being expanded in the Finger Lakes as an example of the complex web of social, medical and financial supports needed to address New York’s unmet mental health needs.

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While supportive of the governor’s initial plans, Parrinello said she is awaiting to see more details about funding and support for expanding other types of behavioral health services.

“We have large psychiatric program and it is extremely important to have it well supported,” she said. “We do applaud that the governor is focused on this.”

Attorney General Letitia James addressed the statewide mental health care crisis during a hearing Wednesday in Buffalo. The event came after a viral social media post that shows a nurses’ union member confronting Erie County Medical Center officials about understaffing in the regional psychiatric emergency unit.

“We’re told stories of children left behind at the emergency department because communitybased alternatives and services are inadequate and understaffed,” James said.

“We know where some of them end up; some of them end up with run-ins with police,” she said, but “police report they have nowhere to take them.”

During more than three hours of testimony from New Yorkers on the frontlines, including parents and providers caring for those with mental illnesses, pleaded with James and other officials for more resources and support for mental health services.

“The same people are ending up in the same situations over and over again, and oftentimes we find them in our correctional facilities,” James said. “It will take years to reverse the impacts of the lack of accessible long-term psychiatric care in our communities.”

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