I’d like to begin by thanking Chairman Koppell and Council Members Brewer, Cabrera, Halloran and Greenfield for this opportunity to offer testimony about Kendra’s Law at today’s hearing.
I’m Carla Rabinowitz and I serve as Co-Chair of the Public Policy Committee of the New York Association of Psychiatric Rehabilitation Services or NYAPRS. NYAPRS is a statewide partnership of people who use and/or provide community mental health services who have worked since 1981 to improve services and social conditions for New Yorkers with psychiatric disabilities in ways that advance their recovery, rehabilitation and rights.
NYAPRS has strong roots in New York City, regularly bringing together hundreds of City residents with psychiatric disabilities and community providers to both educate and get their input about initiatives and issues for which to advocate. We regularly send over 400 City representatives to NYAPRS’ Annual Legislative Day in Albany. And we work hard also to share our message with and to educate the community, most notably through our annual Mental Health Film Festival.
There are few issues that trouble our community more than the unwarranted or excessive use of force and as ‘lesser’ citizens with less rights, respect and responsibilities. We are a community that has suffered a long history of indignities. We have been wrongly feared by the public and ridiculed and unfairly characterized by the public as dangerous or permanently incompetent and dependent ‘wackos,’ as people who’ve been told by professionals and the general society that we had lifelong conditions that would prohibit us from ever making basic life choices, work or have families.
For many years, we have fought against those despairing stereotypes and prognoses and have also fought for our rights, including the right to choose the services we want and need.
For us, Kendra’s Law was predicated on the public perception we are violent and need to be forced into care that will help us. Yet, studies are clear that we are actually 11 times more likely to be victims of violence and no more violent than the general public. And time again, in the rare instances where a City resident with a psychiatric disability has tragically caused death, from Andrew Goldstein to David Tarloff, those individuals were already in treatment…but treatment that was not active enough, engaging enough, responsive enough to provide the help we expect from our local community mental health service system. For us, the strategy should not involve force but improved outreach, engagement and service delivery. We all should expect a lot more from our state and local $6 billion mental health system…and I’ll talk more about that in a minute.
First, I’d like to summarize some key points our community wants the Council to take into account as you review the use of Kendra’s Law in New York City:
Studies have Failed to Prove that Court Orders are Key to Better Results
A 1999 study of a Bellevue Hospital pilot compared treatment outcomes for two “high needs” groups, both of whom received intensive, enhanced discharge planning and follow-up services but with one group getting voluntary treatment and the other court mandated care. They found no significant differences between the two groups, leading most to conclude that “better coordinated and responsive services” were what made the difference.
In their 2005 review of the Kendra’s Law program, state legislators were troubled by state Office of Mental Health data that simply showed consumer outcomes without determining whether court mandates were a critical factor. Accordingly, the Legislature rejected proposals to permanently adopt Kendra’s Law and instead, extended the program an additional 5 years, ordering independent scientific research to compare voluntary and involuntary approaches and to examine program disparities.
Nonetheless, the 2009 Duke study failed to provide a comprehensive comparison of court ordered and voluntary treatment packages that are routinely provided in most other counties as “service enhancements.” The study conceded that “available data allow only a limited assessment of whether voluntary agreements are effective alternatives to initiating or continuing AOT.”
This past year, almost every leading mental health advocacy group joined in a successful effort to convince the legislature to reject Kendra’s Law expansion or permanence. They were joined by New York City’s Coalition of Behavioral Health Agencies, which wrote that “the report failed to prove that court-ordered treatment was more effective then voluntary programs. Although almost half of AOT recipients receive services voluntarily, the Duke study could not evaluate the efficacy of voluntary alternatives in comparison to involuntary models. Results were inconclusive.”
Only New York City Relies So Heavily on Court Orders
However, the Duke evaluation did confirm that once again, there were great geographic disparities in the implementation of Kendra’s Law, with 82% (8,275) of the statewide court mandated treatment orders emanating from New York City and Long Island. The study found that “…in other counties, largely outside of New York City, voluntary agreements are more frequently used before a…court order.” In fact, most other counties offered almost 7,000 individuals a variety of voluntary service packages, with 24 upstate counties using 5 or less orders in total since the program’s inception in November of 1999. The study quoted a psychiatrist from an upstate county: “We don’t do it like downstate…We use the voluntary order first. We don’t approach it in an adversarial way.”
Improved Outreach and Engagement, Esp. to Minorities, Should be Prioritized
The Duke evaluation further found “no change” in the longstanding overrepresentation of African Americans and Hispanic New Yorkers in the group receiving court ordered care. Just as in the 2005 study, 64 percent of involuntary orders were levied at those groups with one notable difference: court orders for Hispanic New Yorkers jumped up by almost half (from 21% to 31%). This striking imbalance continues to turn up even in areas of the state where those groups are vastly outnumbered. Examples include Rockland where African Americans and Hispanics receive 78% of the orders while they comprise only 20% of the population and Westchester where they get 50% of the orders as they comprise 29% of the population.
These findings continue to point to an unchecked systemic deficiency in providing effective outreach and engagement services to communities of color with psychiatric disabilities that remains unaddressed, even though these disparities were highlighted five years ago, leading Dr. Rosa Gil, Founder, President & CEO of Comunilife, Inc to assert that “culturally-centered innovative strategies for outreach and engagement must be first used when addressing the needs of Hispanics and other underserved communities.”
NYC Care Monitoring, Other Service Initiatives Are Providing Better Approaches
Following several tragic deaths involving New York City residents with psychiatric disabilities, a 2008 report conducted by a NYS/NYC Mental Health-Criminal Justice Panel found that, at the heart of these systemic failures, “poor coordination, fragmented oversight and lack of accountability in the (City’s and State’s) mental health treatment system” and “inconsistencies in quality of care within the mental health treatment system.” They recommended new tougher standards of care for mental health clinics and the establishment of care monitoring teams for high-need adults, working off of a new database to track the care provided to those individuals.
The Care Monitoring Initiative has been in operation since October 2009 and tracks the status and care given to individuals with no psychiatric medication prescriptions filled in prior 60 days, no community-based treatment contacts in prior 120 days and 2 or more psychiatric emergency room visits and/or hospitalizations in prior 120 days.
The CMI team routinely completes reviews on several hundred consumers each month who they deem “at risk for experiencing gaps in services.” They then assist relevant providers to, where appropriate, strengthen and improve their outreach, engagement and service delivery to those high need individuals, at risk for “falling through the cracks.” In doing so, they improve voluntary care to such individuals by improving provider performance without using the courts and court mandates.
Further, New York also can feel proud of being the home of several nationally recognized service innovations that have impressive track records of helping to engage and serve ‘high needs high cost’ individuals on a voluntary basis. These include Pathways to Housing’s Housing First model, PEOPLe Inc’s Rose House crisis respite house and NYAPRS’ Peer Bridger/Wellness Coaching initiatives, all of whom have successfully engaged the same profile typically given Kendra’s Law court orders and helped them to safely advance their own recoveries by emphasizing persistent outreach and engagement, the development of strong treatment relationships that start by directly addressing the individual’s own treatment and life goals.
In closing, It is our hope, and the hope of thousands of New York City residents with psychiatric disabilities, that City mental health policy will prioritize and come to favor increased use of voluntary outreach, engagement, service and care monitoring initiatives to high needs individuals, especially to communities of color. We seek a time when New York City does not lead the state in court ordered care but can boast of a system that is so responsive and effective that it lead the state and country in innovative voluntary approaches to help the neediest individuals in our community.
Thank you once again for the opportunity to address the committee.
Testimony on Kendra’s Law Oversight
before the New York City Council’s Committee on Mental Health, Mental
Retardation, Alcoholism, Drug Abuse and Disability Services
November 19, 2010
Teena Brooks, Past President, Consultant, NYAPRS Cultural Competence Committee
Thank you Chairman Koppell and Council Members Brewer, Cabrera, Halloran and Greenfield for this opportunity to offer testimony about Kendra’s Law at today’s hearing.
I’m Teena Brooks and I am a past President of the New York Association of Psychiatric Rehabilitation Services or NYAPRS and currently serve as consultant to the NYAPRS Cultural Competence Committee. As you may know, NYAPRS is a statewide partnership of people who use and/or provide community mental health services who have worked since 1981 to improve services and social conditions for New Yorkers with psychiatric disabilities in ways that advance their recovery, rehabilitation and rights.
NYAPRS has strong roots in New York City, regularly bringing together hundreds of City residents with psychiatric disabilities and community providers to both educate and get their input about initiatives and issues for which we advocate. Our Public Policy Co-Chairwoman Carla Rabinowitz has well explained how strongly we opposed involuntary outpatient treatment and our call to the Council and New York City government to dramatically expand the use of voluntary approaches to outreach, engage and serve people with psychiatric disabilities.
I’d like to focus my comments on helping the Council appreciate how the disproportionate use of Kendra’s Law court orders with communities of color is representative of a deeper failure of our community mental health system to properly engage and serve those communities.
I’d like to begin by referring to the findings of a 2001 special supplement to the Surgeon General’s landmark report on Mental Health that focused exclusively on “Mental Health: Culture, Race, And Ethnicity.” That report highlighted the following:
· “Even more than other areas of health and medicine, the mental health field is plagued by disparities in the availability of and access to its services.”
· “African Americans are overrepresented in vulnerable, high-need populations because of homelessness, incarceration, and, for children, placement in foster care. The rates of mental illness in high need populations are much higher.”
· “African Americans with mental health needs are less likely than whites to receive treatment.”
· “Mistrust of mental health services is an important reason deterring minorities from seeking treatment. Their concerns are reinforced by evidence, both direct and indirect, of clinician bias and stereotyping. Clinical environments that do not respect, or are incompatible with, the cultures of the people they serve may deter minorities from using services and receiving appropriate care.”
· “For certain disorders (e.g., schizophrenia and mood disorders), errors in diagnosis are made more often for African Americans than for whites.”
· “Increasing evidence suggests that, in clinical settings, African Americans are less likely than whites to receive evidence-based care in accordance with professional treatment guidelines.”
· “Hispanic American youth are at significantly higher risk for poor mental health than white youth are by virtue of higher rates of depressive and anxiety symptoms, as well as higher rates of suicidal ideation and suicide attempts.” Yet, “Hispanic Americans, both adults and children, are less likely than whites to receive needed mental health care. Increasing evidence suggests that Hispanic Americans are less likely in clinical settings to receive evidence-based care in accordance with professional treatment guidelines.”
Two years later, a 2003 landmark report by President Bush’s New Freedom Commission on Mental Health found that
· “the mental health system has not kept pace with the diverse needs of racial and ethnic minorities, often underserving or inappropriately serving them. Misunderstanding and misinterpreting behaviors have led to tragic consequences, including inappropriately placing minorities in the criminal and juvenile justice systems.”
· “Significant barriers still remain in access, quality, and outcomes of care for minorities. As a result, (minorities) bear a disproportionately high burden of disability from mental disorders. This higher burden does not arise from a greater prevalence or severity of illnesses in these populations. Rather it stems from receiving less care and poorer quality of care.”
· “African Americans are more likely to be overdiagnosed for schizophrenia and under-diagnosed for depression. To compound this problem, physicians are less likely to prescribe newer generation antidepressant or antipsychotic medications to African American consumers who need them.”
It also highlighted a finding that “racial and ethnic minorities are seriously under-represented in the core mental health professions, many providers are inadequately prepared to serve culturally diverse populations, and investigators are not trained in research on minority populations.”
The most tragic outcome of our failure to properly engage communities of color with culturally competent and appropriate services is the hugely disproportionate number of African-American and Hispanic prisoners with psychiatric disabilities who populate our state and city prisons and jails.
It is in this context that we ask that you appreciate how disturbed our community is that our system’s primary response to the challenge of improving access to care for communities of color is the disproportionate use of force under Kendra’s Law to coerce communities of color to forcibly accept the same often inappropriate treatment that failed them in the first place.
This pattern goes back to the program’s outset in 2000 and was first identified by John Gresham, then of New York Lawyers for the Public Interest, in a widely covered 2005 report that found that “there are major racial, ethnic, and geographic disparities throughout New York State in the implementation of Kendra’s Law. Black people are almost five times as likely as White people to be subjected to this law – which dramatically reduces freedom of choice over their treatment and their lives – and Hispanic people are two and a half times as likely as non-Hispanic White people. People who live in New York City are more than four times as likely to be subjected to orders as people living in the rest of the state.”
Gresham went on to conclude that “severe racial and ethnic disparities exist whether one compares those subjected to the law to the general population, or to the narrower group with severe and persistent mental illnesses, whom one might expect to be especially likely to be subjected to the law. In other words, these disparities cannot be explained away by some racial or ethnic difference in the distribution of serious mental illness.”
Gresham found that New York City accounted for 76% of court orders statewide, although it had only 42% of the state’s population. “Nevertheless, (he said) disparities cannot be explained away by the distribution of people of different groups across the state or by New York City’s heavy use of the law. While 42% of the people statewide subjected to court orders are Black, only 27% of New York City’s population is Black.” He concluded that “Both the State and the City have the ability as well as the obligation to probe what lies behind these numbers.”
Troubled by the disproportionate number of New Yorkers from communities of color who were receiving court ordered mental health care, the NYS Legislature ordered independent research to look into these and other disparities in the law’s implementation. The result?
The 2009 Duke evaluation further found no change in the overrepresentation of African Americans and Hispanic New Yorkers in the group receiving court ordered care. Just as in the 2005 study, 64 percent of involuntary orders were levied at those groups with one notable difference: court orders for Hispanic New Yorkers jumped up by almost half (from 21% to 31%). This striking imbalance continued to turn up even in areas of the state where those groups are vastly outnumbered. Examples include Rockland where African Americans and Hispanics receive 78% of the orders while they comprise only 20% of the population and Westchester where they get 50% of the orders as they comprise 29% of the population.
These findings continue to point to an unchecked systemic deficiency in providing effective outreach and engagement services to communities of color with psychiatric disabilities that remains unaddressed, even though these disparities were highlighted five years ago in the Gresham report, leading Dr. Rosa Gil, Founder, President & CEO of Comunilife, Inc to assert that “culturally-centered innovative strategies for outreach and engagement must be first used when addressing the needs of Hispanics and other underserved communities.”
In conclusion, over the past few decades, we’ve seen a the rise of exciting new innovative and increasingly effective approaches to mental health treatment that raise the bar beyond mere management of symptoms and a permanent life as a mental patient to a focus on recovery and rehabilitation, on improved outreach and engagement, on fostering hope and strong therapeutic relationships, and on focusing on choice and self determination to maximize consumer buy in and motivation to goals that include employment, education, friendship, family, independence and dignity.
We must ensure that the recovery movement isn’t just reserved for white people but that it extends fully to our most underserved, undertreated and, worst, most incarcerated and most coerced communities of color.
We call on the City Council to work with City government to replace the use of force with true state of the art voluntary approaches that research is showing is working throughout our City, state and country. Thank you once again for the opportunity to address the committee