As the GOP-controlled Congress continues its efforts to “repeal and replace” the Affordable Care Act (ACA), the most dramatic potential impacts of repeal are what draw the most attention: the numbers of people who could be left uninsured, and the dollars that could be lost from Medicaid.

A less attention-getting—but just as important—consequence of repeal would be the loss of inventive, and often pioneering, improvements in the care given to many Medicaid patients living with the combination of serious mental illness (SMI) and chronic health conditions. These innovations, ushered in before and expanded through the ACA, have quietly rescued millions of patients from a downward spiral of declining health, and, in some cases, homelessness and premature death.

Part of a group known as the “5/50”—the 5 percent of patients who are responsible for about 50 percent of the nation’s medical costs—people with SMI face extreme health risks. They are likely to die, on average, twenty-five years earlier than the general population. For them, managing a chronic condition while living with mental issues such as severe depression, schizophrenia, or bipolar disorder can be nearly impossible. Patients like these may lack even the capacity to keep their daily lives on track, let alone handle a chronic health problem, like diabetes, that requires multiple trips to multiple doctors with multiple medications and treatments. All too often, they end up in the nation’s emergency rooms, after a chronic condition has become so severe that it may cause serious disability or even death. The resulting rise in health care costs is enormous. Ineffective care for these patients accounts for as much as $120 billion in annual health care costs. Reducing these financial and human costs and improving the lives of people battling chronic physical and mental health problems have long been priorities for public health experts, and addressing the issue became a central part of the ACA.

Pennsylvania was among the first states to test the effectiveness of coordinating care for SMI patients, so that all of a patient’s providers—physicians, nurses, psychiatrists, social workers, and others—consistently share information about the patient and, in some cases, develop a closer relationship with them. The result has been better health, as well as more compassionate, more effective—and more cost-effective—care.

For a patient who has not only a primary care doctor but also various other providers—a heart specialist, a kidney doctor, an ophthalmologist, a nutritionist, a physical therapist, a nurse practitioner, and others—in addition to mental health specialists, having someone to manage the moving parts can be lifesaving. Without the right coordination, for example, medications prescribed by one doctor for one problem could cause a reaction to other medications prescribed by someone else, putting that patient in the hospital and worse off than before.

Managing a chronic condition while living with mental illness can be nearly impossible. Patients may lack the capacity to keep their daily lives on track, let alone handle a complicated chronic health problem like diabetes.

Among the early examples of how coordinated care can improve the lives of patients with SMI and chronic health problems are two programs launched in Pennsylvania’s Allegheny, Bucks, Montgomery, and Delaware Counties in 2009. In the years following the 2007–08 financial crisis and the ensuing recession, Pennsylvania public health officials became increasingly concerned about the mounting health problems of people with coexisting mental and physical health challenges. More than one million Pennsylvanians live with mental illness, according to the University of Southern California, while the Kaiser Family Foundation found that more than 30 percent of residents report “frequent mental distress.”

To combat this problem, Pennsylvania officials added funds to a grant from the nonprofit Center for Health Care Strategies to help launch the SMI Innovations Project pilot, with the goal of dramatically improving the coordination of physical and mental health care for SMI patients. Each of the four participating counties would receive a share of the savings achieved.

Allegheny County, in southwest Pennsylvania, is the state’s second most populous county and was already a leader in the treatment of mentally ill patients, particularly with regard to their treatment by the criminal justice system. Studies by the Urban Institute estimate that a majority of state prisoners (56 percent) and jail inmates (64 percent) and nearly half of federal prisoners (45 percent) have mental health problems, and it is reasonable to assume that effective treatment could keep many of those people out of incarceration, with resulting benefits for the patient and lower costs for the state.

In Pennsylvania, the annual cost of incarceration is approximately $42,000 per inmate. Like most states, Pennsylvania addresses this challenge in part by participating in the federal mental health court programs, which tries to direct mentally ill offenders to treatment and other interventions to prevent recidivism. Despite mixed results around the country, Allegheny County’s mental health court program has been notable for its results, serving 209 people in 2016–17 and thousands since the program’s creation in 2001. In addition to a special “crisis intervention team” training program for police officers (who wear special badges indicating their expertise with mentally ill offenders) and protocols for diverting minor offenders to special units at local hospitals for treatment instead of to jails, the county also tries to ensure that appropriate mental health treatment is a regularized part of the county’s intake process. “We assess people, through questionnaires, to see if they need substance abuse treatment, primary care, or other services,” said Shannon Sommers, who coordinates resources, including health care, for the Allegheny County Department of Human Services and the court.

Given this track record, Allegheny County’s involvement in the SMI Innovations Project pilot—a care coordination effort called Connected Care—was a natural extension of its efforts to improve the lives of seriously mentally ill residents. Before Connected Care, physicians and other care providers discussed specific cases, but it was not a consistent, broad policy with specific checks and balances, according to James Schuster, vice president at Community Behavioral Health Care and the primary administrator of the Allegheny County program. What changed was expanding the reach of care managers to touch every case and to ensure that information about hospitalizations, medications, emergencies, housing status, and other details were shared with all care providers. “Health plans needed to exchange information and do it through joint treatment planning,” said Schuster, but the primary emphasis was on teaching physicians, health plan administrators, and behavioral health providers to work as a team.

Allegheny County’s model also offered lessons in achieving cost savings while working within an existing health plan structure. Unlike other counties, they did not bring on any new employees or increase direct outreach to patients or the homeless. They analyzed claims data on existing plan members to decide whom to enroll in the integrated care experiment.

“We worked to get consent to reach out to our mental health care patients’ primary care providers to let them know when a patient had been hospitalized, for example,” said Brandi Holsinger, a care manager with the Connected Care program. “If a patient had an emergency room visit, we would call their provider the next day to let them know so that they could follow up with the patient. In the past, we only did this sporadically in crisis situations.”

The results were excellent. The Allegheny County Connected Care program showed an estimated 12 percent reduction in mental health hospitalizations for patients in the pilot and a 10 percent reduction in hospital readmission rates, when compared with other Allegheny physical care plans that did not adopt the integrated care model. All three factors—ER visits, readmissions, and mental health crisis hospitalizations—are key drivers of health care costs. “The integration of health care, particularly physical health care and behavioral care, saves money,” said Estelle Richman, who was secretary of Pennsylvania’s Department of Public Welfare (now the Department of Human Services) from 2003 to 2009 and later a senior official at the Department of Housing and Urban Development under President Obama. “You treat the whole person, not just the mental illness and not just the physical body.”

On the streets of Norristown, a Philadelphia suburb along the Schuylkill River, Madelyn Pontari is a familiar sight as she ferries one of the twenty-five or so people in her care to the multitude of appointments needed to manage the chronic health problems they battle along with mental illness.

Preemptively apologizing for the bad reception on her flip phone—her clinic runs on a tight budget, and can’t afford smartphones for its employees—while negotiating the day’s plans, Pontari does a lot more than just get people to the doctor on time. “We start out reviewing profiles to figure out why these people are going to the emergency room so much,” she says. “And we ask, do they have the right type of doctor? What’s their relationship with that doctor?”

Pontari, a registered nurse, is a “wellness recovery team” (WRT) navigator, a position created by a program in Montgomery, Delaware, and Bucks Counties called HealthChoices HealthConnections. This program’s approach is slightly different from the pilot in Allegheny, but has led to equally impressive results. In Montgomery County, improvements were achieved through the creation of WRTs, an entirely new method of care that provides wraparound services to selected seriously mentally ill patients, often working with those who are homeless or in other crisis situations.

Spending a few days in the life of a WRT navigator makes it easy to see the difference between the fragmented care most of us receive and the coordinated services provided for an SMI Innovations Project patient. Once Pontari meets a patient, she concentrates on getting to know them a little better. She probes for clues that will assist her in designing a care plan that will help them recover whatever level of health and independence they can manage. “You don’t need to know what type of trauma a person has been through, just that there’s been trauma. You see those symptoms and figure out how to work with them,” she says. Being there at each appointment, sitting with patient and physician, being alert for moments that can help build a relationship between the two, making sure treatment instructions are understood and the right questions are asked and answered—these are just some of the essential elements of Pontari’s work.

No matter how complex the situation, Pontari takes a holistic approach. One of her patients is Sal Venezia, who suffered a cascade of events that left him sick and destitute, in just a little over three years, starting in 2014. “It was like a big bomb just dropped,” Venezia says. “I had everything—a home, a job. Then I sold my house to help take care of my elderly aunt and grandmother. I invested in their home and moved in with them because they were both ill and I didn’t want them to be alone. I figured I would get it back later when the house was sold, or live there.”

The Allegheny County Connected Care program showed an estimated 12 percent reduction in mental health hospitalizations for patients in the pilot and a 10 percent reduction in hospital readmission rates.

He did not foresee the work accident that would crush a disc in his back, eventually costing him both his job as a chef and his medical coverage. Nor did he know that he would need bypass surgery at about the time his aunt and grandmother died and he found out a reverse mortgage would take the house he’d invested everything in. He fell into a depression so deep he considered suicide. When a crisis intervention manager at the Coordinated Homeless Outreach Center of Montgomery County asked Pontari to help him, he had been in the shelter for months and his diabetes was wildly out of control. “[Madelyn] helped me get everything under control, blood pressure, diabetes, everything, but it was a hard ride,” says Venezia, who just turned fifty-three.

Many of Pontari’s patients are what she calls the “sickest of the sick.” Being homeless, the case for about 35 percent of those in her care, makes things even more challenging. “If they become homeless, they cannot take care of their health,” she says. “If you don’t have that base, you can’t do anything else.”

When things fall apart, as they did for Lea Cairns, another of Pontari’s current patients, emergency rooms often become the primary source of both physical and behavioral care. Repeated hospitalizations also pile up, as health conditions become acute because of a lack of early and regular treatment.

For those who think—as many in Washington currently seem to—that people living in poverty are somehow lazy or gaming the system, it’s worthwhile to note that the line between stable and severely depressed and on the streets can be shockingly thin. Cairns was just as surprised as Venezia was to find herself homeless. She was once a librarian and a schoolteacher, but after her husband’s death—followed by two heart attacks, a stroke, several bouts with severe depression, and other problems—her life unraveled. Pontari’s support for her includes keeping her three grown children, including one in medical school, updated on her progress. At fifty-five, Cairns is now in transitional housing. She has lost weight, her blood pressure is consistently below 130/80, and recent tests show improvement in her heart function.

The Montgomery County pilot was ultimately successful enough that all of the payers involved—Keystone First, Magellan Behavioral Health, and UPMC—are still caring for patients using the tested models and are planning to expand coverage. According to evaluations conducted by the Center for Health Care Strategies and Magellan, Montgomery experienced an 11 percent reduction in ER visits for SMI patients, while SMI patients visiting an ER spent 19 percent less time there. Overall admissions to medical facilities fell by 56 percent, and those admitted spent 37 percent less time there. Psychiatric hospital admissions also dropped by 43 percent, and the use of assisted residential environments—housing—declined as well, by 14 percent.

And in Allegheny County, the results convinced state officials that the system was a better way of caring for high-need, seriously mentally ill patients. “A few years ago, our state department of health felt so positive about it that they created a pay-for-performance model for all the behavioral health plans around the coordinated care model,” said pilot administrator James Schuster.

Pennsylvania’s integrated mental health care initiatives depend on Medicaid, a program controlled by a Congress increasingly hostile to caring for mentally ill patients and determined to turn Medicaid into capped block grants.

The benefits of the approach taken in Pennsylvania go beyond what is traditionally measured. Analyses of integrated care programs for SMI patients focus quite narrowly on the savings associated with keeping people out of hospitals. But researchers seldom include the additional savings that are likely to occur with improved physical and mental health.

The social services supports that have helped Venezia, for example, are not part of the integrated health care he received. But his improved physical health and recovery from clinical depression allowed him to take advantage of the job and housing opportunities Montgomery County’s social service agencies were able to provide.

The savings to state and federal governments incurred by keeping people out of homeless shelters and helping them return to work are an added bonus that should be considered in any evaluation of integrated care initiatives. The total cost of homelessness is calculated to be between $30,000 and $40,000 per person per year, depending on the city.

After years of research, and successful ACA-supported demonstration projects not only in Pennsylvania but also in Washington State, Missouri, New York, and others, the question is no longer whether integrated care for high-need patients saves money, but what model is the most effective.

Since all SMI integrated care programs depend on Medicaid, the other important question is whether these programs can survive in a federal climate that seems increasingly hostile to caring for mentally ill patients and is controlled by legislators determined to turn Medicaid into capped block grants.

For now, integrated care plans for people in Pennsylvania with serious mental illness should be relatively stable for the next two years, due, in part, to the success of the SMI Innovations Project. Using that evaluation data, the state applied for and was awarded a Certified Community Behavioral Health Clinic designation by the federal Substance Abuse and Mental Health Services Administration; this will supply as much as $10 million to continue to improve their integrated care models. The work began in July.

Montgomery County’s Madelyn Pontari emphasizes that it’s not just the money that makes her county’s program successful. “It’s getting people from not being able to do anything for themselves to being able to do at least some things independently,” she says. For Sal Venezia, the benefits have been clear. “Now that I’ve got my health together, I’m working a part-time job,” he says. It’s the first step into a second chance at a stable life.

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Sheree Crute

Sheree Crute is a health policy writer based in Brooklyn, and the author of Health Insurance, a Brief History: The Impact of Obamacare. Special thanks to the Staunton Farm Foundation.