50 Years After Willowbrook: Mental Disabilities and the Law in New York
11.22.2022
Fifty years ago, New Yorkers were shocked at television scenes from inside the Willowbrook State School in Staten Island. The images of residents crowded together in squalid conditions, with no access to humane treatment, sparked public outrage and calls for reforms. At the same time, conditions at institutions nationwide were also under attack and advocates pressed for new national policies.
But a half century later, are people with mental disabilities better off? The answer is mixed. While there has been notable progress – through the closure of institutions and the advent of community care – there is also a dark side that demands attention.
Take one example: Months pass as a young adult with complex developmental disabilities sits in a hospital bed in a local general hospital, waiting for housing in the Office for People with Developmental Disabilities (OPWDD) system.[i] Or take these examples: Across New York State, hundreds of people whose mental health needs are so severe that they lack capacity to participate in their own criminal defense face repeated state forensic hospitalization and attempts at “restoration,” delaying their overall recovery and justice while costing county government taxpayers a thousand dollars a day for the cost of their confinement.[ii] People with severe mental illness are increasingly incarcerated and punished rather than being afforded treatment with jails becoming de facto psychiatric facilities. In family court, adolescents with complex needs are juggled back and forth between the state’s mental health and developmental disabilities systems, often with each state agency (Office of Mental Health (OMH) and OPWDD) disavowing responsibility and asserting the other agency has jurisdiction.[iii] In addition, while local health departments strive to ensure the availability of Narcan throughout our communities, the number of people dying from opioid overdoses continues to grow.[iv] Fifty years after supposedly turning the corner, the intersection of mental disabilities and the justice system is still chaotic and in need of drastic reform.[v] As stated by the National Judicial Task Force to Examine State Courts’ Response to Mental Illness, co-chaired by New York Chief Administrative Judge Lawrence K. Marks, state courts are urged to initiate a thorough examination of the mental health crisis and its impact on fair justice.[vi]
Historical Antecedents to the Current Crisis
In New York, a turning point for the deinstitutionalization movement occurred in 1972, with breaking news of the inhumane conditions at Willowbrook, where thousands of children and adults with disabilities resided. Millions watched the news coverage and were horrified by the images.[vii] Brave litigants and dedicated attorneys forced dramatic change. Parents of nearly 5,000 residents of Willowbrook filed suit in federal court.[viii] The federal court ultimately found multiple failures by the state to protect the physical safety of the disabled children residing there, determined that its condition was deteriorating rather than improving, and deemed the institution “hazardous to the health, safety, and sanity of the residents.”[ix] Eventually, the court entered a consent judgment, which established guidelines and certain minimum requirements for the institution.[x] Yet, it would be another 12 years before the Willowbrook State School was shuttered in 1987.[xi] In that interim period, in 1977, legislation was enacted dividing the Department of Mental Hygiene into three autonomous offices ostensibly to better meet the needs of discrete populations under the auspices of the department.[xii]
Federal and state legislation has also advanced the mental health and addiction service system, but with mixed results. As far back as 1963, the federal Community Mental Health Act was adopted with great hope and promise.[xiii] President John F. Kennedy remarked upon passage of the act that “the mentally ill and the mentally retarded need no longer be alien to our affections or beyond the help of our communities.” The Community Mental Health Act accelerated the process of deinstitutionalization, but what was supposed to be a comprehensive, community-based health care system collapsed under the weight of the Vietnam War, the Watergate scandal and shifting federal priorities.[xiv] As noted by Dr. Thomas Insel, the former director of the National Institute of Mental Health, federal policy following the enactment of the Community Mental Health Act failed people with serious mental illness, contributing to homelessness, incarceration and early mortality for this population.[xv]
In 1993, New York State adopted its own Community Mental Health Reinvestment Act[xvi] in an effort to ensure that funds from steadily closing state psychiatric hospital beds followed people living with mental illness back to the community, but again results were mixed. For example, large numbers of people with mental illness were placed into other types of institutions, including nursing homes and adult homes. This was the result of a “conscious State policy” to discharge patients from psychiatric hospitals into these facilities “due to the absence of other housing alternatives at a time when psychiatric centers were under pressure to downsize.”[xvii] Tragedies also preceded reform efforts. For example, in 1999, following the death of Kendra Webdale, a woman who was pushed in front of an “N” train in New York City’s subway system by a man with a long history of ineffectually treated mental health needs, New York enacted an assisted outpatient treatment statute.[xviii] “Kendra’s Law” allows for court-ordered outpatient treatment for adults with serious mental health diagnoses when it is established by clear and convincing evidence that the person is unlikely to survive safely in the community without supervision, based on a clinical determination, and has a history of lack of compliance with treatment for mental illness, among other criteria.[xix] In 2007, following the death of Jonathan Carey, a 13-year-old who died in the care of staff while living at an OPWDD-operated developmental center, “Jonathan’s Law” was passed.[xx] The law established abuse reporting and additional accountability in the OPWDD system. Nonetheless, innumerable commentators and our own observations as lawyers lead us to conclude that the system of care is broken with unsustainable trends, particularly as they relate to workforce shortages. Incredibly, despite mental health expenditures annually in the billions of dollars, OMH maintains that 3.1 million New Yorkers live in federal and/or state designated “mental health shortage areas.” [xxi] OPWDD reports that stakeholder feedback consistently identifies sustaining the direct care workforce as the most critical issue to support people with developmental disabilities.[xxii]
Creation of Task Force on Mental Health and Trauma Informed Representation
A 50-year period of sporadic reform, founded in the unabated crises and tragedy continuing to this day, has brought New York State Bar Association President Sherry Levin Wallach to see an even greater role for attorneys to join the dialogue and identify solutions to improve the lives of people with mental disabilities. President Levin Wallach’s view is that it is the responsibility of the bar to help build a better, more forward-thinking way to address the intersection of law, justice and mental health. The task force’s mission statement embodies these principles and provides:
The Task Force on Mental Health and Trauma Informed Representation is created to explore, study, and evaluate the intersection between the mental health crisis and our civil and criminal justice systems. There is a well-documented crisis of mental health care in the United States that has failed to meet the needs of people with mental health challenges and/or histories of trauma. People living with mental health challenges or trauma histories are increasingly incarcerated, homeless, or boarded in hospital emergency rooms. They often bear additional burdens and stigma of racial discrimination, sex or gender identity discrimination, and poverty. The task force will focus on the need for the bar to better serve individuals with mental health challenges and/or trauma histories, both adults and children, through trauma-informed practice, such as informing attorneys and the judiciary of available resources to assist in the representation of clients, by raising awareness of intersectional stigma and trauma and by recommending education on best practices in the representation of these clients. Criminal diversion and civil processes will be examined to ensure that people living with mental health challenges and/or trauma histories are able to fully participate in legal proceedings that impact their liberty and well-being. State policy and budget priorities will be examined and appropriate recommendations made.
Creating the Task Force on Mental Health and Trauma Informed Representation has NYSBA seeking out practice areas and issues where mental health, trauma, lawyers and courts all find themselves connected. Examining the current construct of the intersection of justice and mental health, our association has the benefit of 50 years of medical advancement and research, as well as better prepared attorneys and a broad recognition that the services of these systems need improved and more formal integration.
What Is Trauma Informed Representation?
The American Psychological Association defines “trauma” as “[A]n emotional response to a terrible event like an accident, rape, or natural disaster.”[xxiii] It is important to note that comprehensive research has found that multiple childhood traumatic events have lifelong impact on those subjected to them. Known as ACEs (adverse childhood experiences), a study conducted in the mid-1990s by the Centers for Disease Control and the Kaiser Foundation determined the long-term impact of childhood trauma.
The collaborative study of hundreds of thousands of Kaiser Permanente patients, led by pediatrician Dr. Nadine Burke Harris and conducted between 1995 and 1997, was the first to examine the relationship between early childhood adversity and negative lifelong health effects. “The research found that the long-term impact of ACEs determined future health risks, chronic disease, and premature death. Individuals who had experienced multiple ACEs also faced higher risks of depression, addiction, obesity, attempted suicide, mental health disorders, and other health concerns. It also revealed that ACEs were surprisingly common – almost two-thirds of respondents, part of the largely white, well-off sample, reported at least one ACE.[xxiv]
And while the study demonstrated a high prevalence of trauma sustained by children, it must not be forgotten that adults can frequently be traumatized as well. And the impact of trauma manifests for years to come, especially if undiagnosed and unresolved.
Trauma is frequently considered to be connected to behavioral health needs, including “co-occurring disorders.” According to the federal Substance Abuse and Mental Health Services Administration, 40% of Americans living with an addiction disorder have a co-occurring mental health disorder. For those whose lives intersect the criminal justice system, the frequency is higher – in some cases, much higher. Formerly known as Mentally Ill Chemically Addicted (MICA) and other less “person-first” terminology, co-occurring disorders are now recognized as common – even more so among young adults and those involved in the criminal justice system.
In few places is this overlap seen more commonly than in the criminal justice system. The American Psychological Association estimates mental illness among today’s inmates to be pervasive, with 64% of jail inmates, 54% of state prisoners and 45% of federal prisoners reporting mental health concerns.[xxv] Substance abuse is also rampant and often co-occurring. According to the National Institute on Drug Abuse, 85% of justice-involved people have a substance use disorder. Many attribute this to “transinstitutionalization,” moving a population of people from one institutional setting to another – in this case from state-operated psychiatric hospitals to prisons and jails.[xxvi] Interestingly, this is not a new concept. As far back as 1939, the “Penrose Hypothesis” claimed an inverse relationship between the number of people in prison beds to psychiatric hospital beds. More than 80 years later, that hypothesis has neither been defeated nor confirmed, but the statistics are alarming. In 2012, for example, there were estimated to be over 356,000 people with severe mental illness in prisons and jails in the United States. In contrast, approximately 35,000 people were in state hospitals. Thus, the number of mentally ill people in prison and jails was 10 times the number of people with similar diagnoses in state hospitals.[xxvii]
These indicators all tend toward high prevalence, and practitioners of criminal law, both prosecution and defense bars, would do well for themselves and their clients to develop a thorough and usable understanding of the array of trauma and its associated manifestations, including the litany of mental health diagnoses, treatments and co-occurring disorders. One goal of NYSBA President Levin Wallach’s task force is to assist the bar in becoming truly competent in these areas.
Trauma manifestations are not limited to criminal law, or the compendium known as the Mental Hygiene Law. If criminal law is where the flash and fury of the collision of behavioral health and justice is most discernible, the impact of trauma and behavioral health adjacent to, and even remote from that intersection, is both audible and apparent. Distant from criminal law in such practice areas as elder law, contract law, tort and even real estate practices, individuals whose challenging and painful life experiences have affected them to the core will seek legal counsel.
Conclusion
As the co-chairs of the Task Force on Mental Health and Trauma Informed Representation, we are pleased to share the pages of this issue with our colleagues as we strive to help all our colleagues become more trauma-aware for themselves and their practices. Our work is informed by national and state leaders such as Stephanie Marqeusano, founder of the Harris Project. She reminds us that the use of community-based services to deliver clinical and therapeutic support to address a wide range of mental health needs can help stabilize, repair and strengthen our communities. There is considerable work to be done, and as members of the bar, we are dedicated to being part of the solution.
Sheila Ellen Shea has served as the director of the Mental Hygiene Legal Service, Third Judicial Department, since 2007. Shea is a member of the Elder Law and Health Law sections and is past co-chair of the NYSBA Committee on Disability Rights. She received the 2021 Bernard Carabello Award presented by the NYSBA Committee on Disability Rights and the 2022 Michele S. Maxian Award for Outstanding Public Defense Practitioner presented by the NYSBA Criminal Justice Section.
Joseph A. Glazer is deputy commissioner for the Westchester County Department of Community Mental Health. He served as the president and CEO of the Mental Health Association in New York State and as a sole practitioner representing people living with mental health needs and substance use disorders. Glazer previously served as counsel and chief of staff to former state Senator Cecilia Tkaczyk, the ranking member of the Senate Mental Health and Developmental Disabilities Committee. Glazer has also been an adjunct professor in the health services administration master’s program at the Sage Graduate School.
[i] Regrettably, there are abundant national and New York State examples of children and young adults with complex needs, including autism, languishing in emergency rooms waiting for inpatient psychiatric care or access to community services and supports that are not available to them. See William Wan, Autistic Teen in Mental Health Crisis Waited Weeks in ER for Psychiatric Bed, The Washington Post, Oct. 22, 2022, https://www.washingtonpost.com/dc-md-va/2022/10/20/er-mental-health-teens-psychiatric-beds/; Healthcare Association of New York State, The Complex Discharge Delay Problem (2021), https://www.hanys.org/communications/publications/complex_case_discharge_delays/docs/complex_case_discharge_delay_problem.pdf; see also MHLS v. Delaney, 38 N.Y.3d 1076 (2022).
[ii] The New York State statute governing the commitment of defendants who lack capacity to assist in their own defense is codified at Criminal Procedure Law (CPL) article 730. See People v. Schaffer, 86 N.Y.2d 460 (1995). The costs of article 730 commitments are a county charge. See Mental Hygiene Law § 43.03(c).
[iii] See In re Justin L, 56 Misc. 3d 1167, 1176 (Fam. Ct. 2017). Counsel for OPWDD and OMH appeared separately and “strenuously argued” that the child subject to the juvenile delinquency proceeding should not be placed with their agency.
[iv] As reported in the New York Times, more people are dying of drug overdoses in the United States today than at any point in modern history. The number of yearly overdose fatalities surpassed 100,000 for the first time ever in 2021. Halfway through 2022, the rate appears to be rising even further (the latest numbers come out to about 300 people per day, or 12 people every hour, on average). See Jeneen Interlandi, Experts Say We Have the Tools To Fight Addiction. So Why Are More Americans Overdosing Than Ever? New York Times, June 24, 2022, https://www.nytimes.com/2022/06/24/opinion/addiction-overdose-mental-health.html.
[v] See State Courts Leading Change, Report and Recommendations of the National Judicial Task Force To Examine State Courts’ Response to Mental Illness (October 2022).
[vi] Id.
[vii] See John J. O’Connor, TV: Willowbrook State School, “The Big Town’s Leper Colony,” N.Y. Times, Feb. 2, 1972, 78, available at https://timesmachine.nytimes.com/timesmachine/1972/02/02/79417203.html; See The Minnesota Governor’s Council on Developmental Disabilities, The ADA Legacy Project, Willowbrook Leads to New Protections of Rights, Moments in Disability History 9, 2013, http://mn.gov/mnddc/ada-legacy/ada-legacy-moment9.html.
[viii] Historical Society of the New York Courts, Willowbrook State School: How a Lawsuit Closed the Gates of a Notorious Institution and Opened the Doors of Opportunity to Thousands (Sept. 22, 2022). See https://history.nycourts.gov.
[ix] New York State Assn. for Retarded Children v. Rockefeller, 357 F. Supp. 752, 755–56 (E.D.N.Y. 1973).
[x] See id. at 768–70.
[xi] On Sept. 17, 1987, Governor Mario M. Cuomo declared the Willowbrook State School on Staten Island “officially and forever closed.” See https://opwdd.ny.gov/ willowbrook. In 1993, the Willowbrook Permanent Injunction was signed, which represents the current standard of services for Cass members.
[xii] 1977 N.Y. Laws ch. 978 The division of the Department of Mental Hygiene into three autonomous agencies – OMH, OPWDD and OSAS currently – may have had a laudable purpose, but many argue that the “O” agency silos have hindered the rendition of appropriate services and supports for people with dual or co-occurring diagnoses.
[xiii] Public Law 88-164.
[xiv] Thomas Insel, Healing Our Path From Mental Illness to Mental Health, 28–34 (2022).
[xv] Id. at 35.
[xvi] Subd. (b). 1993 N.Y. Laws ch. 723, § 9 included community mental health reinvestment services in five-year plan and annual implementation plans and budgets. See Mental Hygiene Law § 41.55; Swidler RN, Tauriello JV. New York State Community Mental Health Reinvestment Act. Psychiatr Serv. 1995 May; 46(5):496-500. doi: 10.1176/ps.46.5.496. PMID: 7627677.
[xvii] See Disability Advocates, Inc. v. Paterson, 598 F. Supp. 2d 289 (E.D.N.C. 2009).
[xviii] See Mental Hygiene Law § 9.60:
Assisted outpatient treatment is defined as categories of outpatient services which have been ordered by the court pursuant to this section. Such treatment shall include case management services or assertive community treatment team services to provide care coordination, and may also include any of the following categories of services: medication; periodic blood tests or urinalysis to determine compliance with prescribed medications; individual or group therapy; day or partial day programming activities; educational and vocational training or activities; alcohol or substance abuse treatment and counseling and periodic tests for the presence of alcohol or illegal drugs for persons with a history of alcohol or substance abuse; supervision of living arrangements; and any other services within a local services plan developed pursuant to article forty-one of this chapter,1 prescribed to treat the person’s mental illness and to assist the person in living and functioning in the community, or to attempt to prevent a relapse or deterioration that may reasonably be predicted to result in suicide the need for hospitalization)
[xix] Mental Hygiene Law § 9.60(c).
[xx] Mental Hygiene Law § 33.25; 2007 N.Y. Laws ch. 24, § 2, eff. May 5, 2007.
[xxi] https://omh.ny.gov/omhweb/planning/straegic-framework/index.html.
[xxii] The OPWDD 2023-2027 strategic plan reports a turnover rate of over 35% of the direct support personnel workforce and a vacancy rate of over 17% in these positions. See https://opwdd.ny.gov/strategic planning.
[xxiii] http://apa.org/topics/trauma.
[xxiv] https://burkefoundation.org/what-drives-us/adverse-childhood-experiences-aces/. Dr. Nadine Harris revitalized the original Kaiser study from the 1990 and brought ACEs into the world’s view from a pediatrician lens, but the original authors are adult docs, Vincent Felitti and Robert Anda. https://www.ajpmonline.org/article/S0749-3797(98)00017-8/fulltext
[xxv] http://apa.org-incarceration nation.
[xxvi] Sol Wachtler & Keri Bagala, From the Asylum to Solitary: Transinstitutionalization, 77 Alb. L. Rev. 915 (2014).
[xxvii] E. Fuller Torrey, et al, The Treatment of Persons with Mental Illness in Prisons and Jails: A State Survey (2014).
