It is now known that some mental health care providers in New York City can fail some seriously mentally ill people. Some people try to get treatment and can’t. Others, who have been getting treatment in a program, are dropped without warning or apparent reason. Some people stop taking their medications because their prescription runs out and their provider fails to renew it—or there is a glitch with their Medicaid. Some people stop taking their medications because they think they’re cured. Others sometimes go to the pharmacy for a refill only to be sent away empty handed because their Medicaid has been cut off. Some people with serious mental illness just disappear: they become homeless, and no one knows where to look for them. Some people end up in jail, or in the hospital. They are forgotten or ignored, and have no family or advocate to speak up for them when their treatment back in the community has been terminated. And, usually, nobody seems to know— until something terrible results from these breaks in service.
A Tragic Wakeup Call
That’s what happened in 2007 and 2008, when violent incidents took place in New York City: the incidents involved people with serious mental illness as either victims or perpetrators. In perhaps the most widely reported incident, David Tarloff, a man living with schizophrenia for decades, killed a psychologist on the Upper East Side. Tarloff had not been engaged in the care he needed. His attack may have been the tragic outcome of a befuddled plan to get his aged mother released from a nursing home.
In another notorious incident, during a domestic disturbance, a woman called the police on her mentally ill 18-year-old son. He was believed to have a gun; but it was only a hairbrush he was holding. He was shot to death by the police.
The Governor and the Mayor responded to the crisis boldly and humanely, appointing the New York State / New York City Mental Health and Criminal Justice Panel to investigate the problem. The Panel spent a year investigating individual incidents and systemic problems before issuing its report.
Findings of the Panel
The system failed Mr. Tarloff. The panel found poor coordination, fragmented oversight, and a lack of accountability in the mental health treatment system. The panel found inconsistencies in the quality of care within the system. And it found that the mental health and the criminal and juvenile justice systems weren’t sharing information. Here’s a direct quote from the report: In the cases it examined, the Panel saw tragic outcomes resulting from fragmented care and a failure to detect and respond to signs of in- adequate care, deterioration in mental health, and increasing signs of potential violence.
Although people with serious mental illness are less likely to be violent than the general population, the panel’s research showed that the risk of violence is in- creased among “high-need” individuals with mental illness who do not receive adequate mental health care.
The panel found that the system was not getting care to the people who needed it most. For example, the average length of treatment 32% of the time was one session. Sixty percent of the time, people were getting only one to four sessions. This is hardly adequate treatment for anyone—particularly for “high need” people.
Perhaps it’s no wonder that Tarloff, like others, had disappeared off the radar of the system. No one was paying attention, and no one was held accountable when this “high need” patient was reportedly refused treatment. For most individuals who slip through the cracks of the system, the consequences are only increased suffering. In this case, the lack of coordination, accountability, and provider oversight led to tragedy. Receiving less, if any, media attention are “high-need” individuals who commit suicide.
Recommendations of the Panel
The panel then proposed progressive, humane, and practical recommendations for plugging up the gaps and fixing the inadequacies in the mental health system.
The most important of the Panel’s recommendations: It mandated the development of new standards of care for providers, with a focus on periodically assessing risk for violence and suicide; it also mandated the creation of a database to track aspects of provider performance, such as patterns of use. The panel urged better communication among providers working with the same mentally ill individual and those who are court-mandated to receive treatment, as well as those who cycle in and out of emergency rooms and hospitals.
The panel also recommended the development of a Mental Health Care Monitoring Initiative. Its mission is to improve quality and coordination of care for people with serious mental illness aged 18 and older. The project involves identifying “high-need populations,” including people receiving Assertive Community Treatment or case management services, as well as those with recent histories of involvement with the criminal justice system or frequent emergency room visits and/or psychiatric hospitalizations.
Care Monitoring Teams
The Mental Health Care Monitoring Teams (CMTs) were created to do the actual monitoring of service providers, to make sure client needs are being met.
The method is creative and simple. In- stead of tracking client compliance (which is difficult, intrusive, and costly), it tracks the client’s service use and link it to providers—and reach out to providers, as necessary, to have them reach out to clients.
A vendor, Community Care, was contracted to use Medicaid claims data to identify patterns of service use, and to identify service lapses, which would signal the need for prompt intervention.
The aim of the Mental Health Care Monitoring Initiative is to close gaps in the system by reaching out to providers to encourage them to re-engage clients in treatment, thus improving communication, coordination and provider accountability.
Monthly provider reports will list individuals whose patterns of use or lack of use indicate that they are not getting needed services. The patterns, or “flags” include: (1) No psychiatric medication prescriptions filled in the prior 60 days, (2) No community-based treatment contacts in the prior 120 days, and (3) Two or more psychiatric emergency room visits and/or hospitalizations in the prior 120 days.
When these situations are flagged, the monitoring team will consult with the provider about reaching out to the individuals so they don’t become lost to the mental health system. These interventions aim to engage the individual in continuing treatment, and to prevent individuals from dropping out of care or from being dropped.
In other words, the goal of the Care Monitoring Teams is to locate, then reach out to “high need” people who have not been getting adequate service, and correct the problem—before people deteriorate to the point that they become a danger to themselves or others.
What Causes Loss of Service? Some Examples
If Medicaid records show that a psychiatric medication or an antipsychotic has not been dispensed in three months, a Care Monitoring Team intervention is triggered. The investigation may reveal a problem with Medicaid. In that case, the provider is encouraged to help the client solve the problem with Medicaid.
Likewise, if Medicaid records show that the individual has not had any clinic visits in four months, the cause may be found to be that the individual’s case was prematurely closed. In that case, the team endeavors to assess risk with the provider and to encourage outreach to the client.
Psychiatric hospitalization, itself a sign of “high need,” can further increase the risk of falling through the cracks. The lack of a mailing address may cause vital mail not to reach the individual. The same is true of homelessness and imprisonment. Urgent requests for Medicaid recertification may be missed, causing services to be cut off. No Medicaid? No clinic, and no pharmacy services, either. When Medicaid is cut off, the Care Management Team will reach out to the provider to encourage it to help the client solve the problem with Medicaid, and re-open lines of communication between Medicaid and providers in the community (clinics, drugstores).
Though the initiative focuses on “high-need” individuals, its increased oversight of providers will benefit the entire client community. It will help providers become more efficient and accountable. It will improve service and make service failures rarer throughout the entire system.
The initiative aims to find providers who give good care, who are helping consumers, and to identify where the system is breaking down. The first Care Monitoring Team started at Kingsboro Psychiatric Center in Brooklyn in October 2009, and a second team began in the Bronx in Fall 2010.
Individuals and family members are encouraged to become an active part of the mental health treatment team, and to reach out to the provider whenever there is a gap in service. In addition, if a provider is failing you or a family member— if your family member has been dropped from his or her program and wants to be reinstated, or if his or her meds have been cut off for no clear reason, or if you or a family member is refused treatment, you are encouraged to contact the NYC Office of Consumer Affairs at 347) 396-7194, or call 1-800- LIFENET.
Nora Weinerth is an independent advocate and consultant with the Office of Consumer Affairs, New York City Department of Health and Mental Hygiene.