Disability Rights California & Coalition's Letter in Opposition to CARE Court

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Disability Rights California & Coalition's Letter in Opposition to CARE Court

The California Legislature has declared that, “In the absence of a controversy, a court is normally not the proper forum in which to make health care decisions.” Yet, SB 1338 seeks to establish a new court system in which health care decisions will be made. Despite SB 1338’s use of the terms “recovery” and “empowerment,” CARE Court is a system of coerced, court-ordered treatment that strips people with mental health disabilities of their right to make their own decisions about their lives.

The Honorable Anthony Portantino 
Chair, Senate Appropriations Committee
1021 O Street, Ste. 6730
Sacramento, CA 95814

RE: SB 1338 (Umberg) – OPPOSE

Dear Senator Portantino:

The organizations sending this letter advance and protect the civil rights of Californians living with disabilities, experiencing homelessness, and involved in the criminal legal system. Respectfully, we oppose SB 1338. The CARE Court framework that it seeks to establish is unacceptable for a number of reasons, including major fiscal concerns:

  • It does not guarantee housing as a solution to address homelessness;
  • Evidence shows that adequately-resourced intensive voluntary outpatient treatment is more effective than court-ordered treatment;
  • It will perpetuate institutional racism and worsen health disparities;
  • There are flaws in SB 1338’s reliance on a person’s lack of capacity to make medical decisions;
  • Use of the terms “Supportive Decision-Making” and “Supporter” reflects a misunderstanding of the concepts behind the terms and obscures the involuntary nature of CARE Court; and
  • Critical terms and concepts are not defined by SB 1338 or elsewhere in California law.

We believe that a transformational proposal like CARE Court should be thoroughly vetted by stakeholders and informed by research and data before it is adopted. That has not happened here. Because CARE Court will harm Californians with disabilities, experiencing homelessness, and involved in the criminal legal system, we cannot support this proposal.

I. Background

The California Legislature has declared that, “In the absence of a controversy, a court is normally not the proper forum in which to make health care decisions.”1 Yet, SB 1338 seeks to establish a new court system in which health care decisions will be made. Despite SB 1338’s use of the terms “recovery” and “empowerment,” CARE Court is a system of coerced, court-ordered treatment that strips people with mental health disabilities of their right to make their own decisions about their lives.

CARE Court is antithetical to recovery principles, which are based on self-determination and self-direction.2 The CARE Court proposal is based on stigma and stereotypes of people living with mental health disabilities and experiencing homelessness.

While the organizations submitting this letter agree that State resources must be urgently allocated towards addressing homelessness, incarceration, hospitalization, conservatorship, and premature death of Californians living with severe mental illness, CARE Court is the wrong framework. The right framework allows people with disabilities to retain autonomy over their own lives by providing them with meaningful and reliable access to affordable, accessible, integrated housing combined with voluntary services.

II. Ending homelessness for all Californians living with mental health disabilities requires guaranteed housing provided with fidelity to principles that prioritize voluntary services.

Instead of allocating vast sums of money towards establishing an unproven system of court-ordered treatment that does not guarantee housing, the state should expend its resources on a proven solution to homelessness for people living with mental health disabilities: guaranteed housing with voluntary services. Given that housing is proven to reduce utilization of emergency services and contacts with the criminal legal system, a team of UC Irvine researchers concluded that it is “fiscally irresponsible, as well as inhumane” not to provide permanent housing for Californians experiencing homelessness.3

To effectuate guaranteed housing, California should use the funds targeted towards CARE Court to instead make large-scale investments in low-barrier, deeply affordable (15% of area median income or less), accessible, integrated housing for people experiencing homelessness.   This housing should be made available with access to voluntary, trauma-informed, culturally-responsive, evidence-based services such as Assertive Community Treatment, Intensive Case Management, Peer Support, and substance use disorder services that follow the Harm Reduction approach.

Informed by Housing First Principles, California has recognized that it is crucial to use housing as a tool rather than a reward for recovery, and to provide or connect unhoused people to permanent housing as quickly as possible. Housing First principles, as an evidence-based model, require offering services as needed and requested on a voluntary basis, and not making housing contingent on participation in services.4 By statute, state programs that provide housing or housing-based services to people experiencing homelessness or at risk of homelessness must adopt guidelines and regulations to incorporate the core components of Housing First.5

Evidence shows that housing provided with fidelity to Housing First principles leads to the types of positive outcomes for unhoused people that the state is misguidedly proposing to attain via CARE Court. For example, a recent UCSF randomized controlled study of unhoused high utilizers of public systems in Santa Clara County found that permanent supportive housing (which incorporates Housing First principles) combined with intensive case management, significantly reduced psychiatric emergency room visits and increased the rate of scheduled outpatient mental health visits compared to the control group.6 In addition, Housing First programs that closely adhere to the evidence-based model result in positive housing and substance use outcomes for chronically homeless people with substance use disorders.7        

CARE Court flies in the face of any evidence-based approach to ending homelessness. It requires a person to be court-ordered into a treatment plan that includes a “housing plan,” without any guarantee that the plan will ever lead to permanent housing. As the Health and Human Services Agency recognizes, “finding stability and staying connected to treatment, even with the proper supports, is next to impossible while living outdoors, in a tent or a vehicle.”8 On this premise, a person should be offered housing before they can be reasonably expected to engage in mental health services. Because SB 1338 specifically precludes a court from ordering housing and does not require a county to provide housing, CARE Court will create a system of distrust and further hinder participants from obtaining appropriate treatment and services by employing a coercive model. With SB 1338’s built-in presumption that “failure to comply” will lead to a “factual presumption that no suitable community alternatives are available” to treat the person, CARE Court is a fast track to conservatorship and re-institutionalization of people with mental health disabilities, exactly the outcomes that SB 1338 purports to avoid.    

III. Evidence shows that adequately-resourced intensive voluntary outpatient treatment is more effective than court-ordered treatment.

Despite SB 1338’s use of the terms “recovery” and “empowerment,” CARE Court sets up a system of coerced, involuntary outpatient civil commitment that deprives people with mental health disabilities of the right to make self-determined decisions about their own lives. Evidence does not support the conclusion that involuntary outpatient treatment is more effective than intensive voluntary outpatient treatment provided in accordance with evidence-based practices.9 Conversely, evidence shows that involuntary, coercive treatment is harmful.10

In 2000, the California Senate Committee on Rules commissioned the RAND Institute to develop a report on involuntary outpatient treatment, with a primary objective to identify and synthesize empirical evidence on the effectiveness of involuntary outpatient treatment and its alternatives.11 The findings of the RAND report remain relevant today. Then and now, no studies exist to prove that a court order for outpatient treatment in and of itself has any independent effect on client outcomes.12 Studies show that any positive effects that result from outpatient commitment are due to the provision of intensive services, and whether court orders have any effect at all in the absence of intensive treatment is an unanswered question.13 In addition, a well-resourced treatment system with the appropriate infrastructure to deliver high-intensity services is critical for the success of any outpatient commitment program.14

On the other hand, the RAND study provided strong evidence of the effectiveness of Assertive Community Treatment (ACT), a multidisciplinary, community-based intervention that combines the delivery of clinical treatment with intensive case management.15 The report’s authors concluded that there is clear evidence that, when implemented with fidelity to evidence-based models, community-based mental health interventions like ACT can produce good outcomes for people living with severe mental illness.16 Furthermore, psychosocial rehabilitation programs are evidence-based recovery models and interventions considered best practices in addressing the recovery of unhoused individuals with mental health disabilities.17 The State’s resources would be better utilized to expand and strengthen the availability of ACT, psychosocial rehabilitation recovery models, and other intensive evidence-based treatment modalities throughout California.18

IV. CARE Court will perpetuate institutional racism and worsen health disparities.

Due to a long and ongoing history of racial discrimination in housing, banking, employment, policing, land use and healthcare, Black people experience homelessness at a vastly disproportionate level compared to the overall population of the state. In Los Angeles County alone, Black people make up 8% of the population, but 34% of people experiencing homelessness.19 Statewide statistics are even more dire: 6.5% of Californians identify as Black or African-American, but they account for nearly 40% of the state’s unhoused population.20

In addition, research shows that Black, indigenous, and people of color (BIPOC) and immigrant racial minorities are more likely to be diagnosed with psychotic disorders than white Americans.21 In California, rates of serious mental illness vary considerably by racial and ethnic groups, with. American Indian and Alaska Native and Black Californians experiencing the highest rates of serious mental illness.22

By targeting unhoused people with diagnoses of schizophrenia and other psychotic disorders, CARE Court will exacerbate health disparities under the directive of a court system. CARE Court will disproportionately impact BIPOC Californians, who are significantly more likely to be homeless and diagnosed with such conditions.

V. There are numerous flaws in SB 1338’s reliance on a person’s lack of capacity to make medical decisions as a condition of eligibility for CARE Court.

The CARE Court framework described by SB 1338 rests on the premise that certain people diagnosed with schizophrenia or other psychotic disorders may be court-ordered into treatment if they lack medical decision-making capacity. This premise has serious flaws. SB 1338 ignores California’s legal requirements that must be met before a finding that a person lacks medical decision-making capacity is legally authorized. In addition, requiring a finding that a person lacks medical decision-making capacity as a prerequisite for ordering a person into CARE Court services undermines the entire CARE Court framework, which assumes a participant’s ability to participate in the development of their treatment plan and ultimately consent to it without the appointment of a substitute decision-maker.

A. SB 1338 ignores specific procedures that California requires to determine whether a person lacks capacity to make medical decisions.

Californians are presumed competent to make health care decisions.23 The law is clear that “the mere diagnosis of a mental or physical disorder shall not be sufficient in and of itself to support a determination that a person is of unsound mind or lacks the capacity to do a certain act” and that a finding of incapacity to make a certain decision or do a certain act must be based on evidence of a deficit in a mental function related to the decision or action in question.24 Because the right to refuse medical treatment is a fundamental liberty interest regarding one’s bodily autonomy, the right to due process attaches when it is questioned.

California law is very clear about the process, which includes the right to a court hearing, that must be followed to determine whether a person lacks medical decision-making capacity.Probate Code §§ 3200-3212. SB 1338 does not require any of these steps. Instead, it allows unacceptable shortcuts: submission of an affidavit of a behavioral health professional based on an evaluation that occurred up to three months prior or not at all, or evidence of an LPS hold within the past 90 days. Neither of these shortcuts is sufficient to prove that a person lacks capacity to make medical decisions or satisfy due process requirements for stripping a person of their right to control their bodily autonomy and make their own medical decisions.

B. Finding that a person lacks capacity to make medical decisions requires offering a treatment plan on a voluntary basis first, with the opportunity to give informed consent.

Under California law, “capacity” means “a person’s ability to understand the nature and consequences of a decision and to make and communicate a decision, and includes in the case of proposed health care, the ability to understand its significant benefits, risks, and alternatives.”25

According to this definition of capacity, a person must be provided with a description of the proposed treatment plan, information about risks, benefits, and alternatives to the plan, and an opportunity to voluntarily engage in the plan before a finding of incapacity is made. Under the language of SB 1338, the process is reversed: a person is first found incompetent to make decisions about medical treatment and, only after such finding, offered any information about the proposed treatment. This reversed approach does not pass muster under California laws governing incompetency to make medical decisions.    

C. Requiring a lack of capacity as a necessary element of ordering a person to CARE Court effectively eviscerates the proposed legislation.

The premise of CARE Court is that a person can “choose” to enter a court-ordered treatment plan that they have participated in developing. However, this is failed logic if a prerequisite for an order to CARE Court is that a person lacks capacity to make medical decisions. Requiring a lack of capacity as a necessary element of ordering a person to CARE Court completely undermines the framework, inasmuch as SB 1338 presumes that individuals are capable of actively participating in the development of their treatment plans, specifically requires that they be afforded the opportunity to do so, and does not contemplate the appointment of a substitute decisionmaker to consent to the plan.26

VI. Use of the terms “Supported Decision-Making” and “Supporter” in the context of a coercive court-ordered treatment scheme reflects a serious misunderstanding of the concepts behind the terms and obscures the involuntary nature of CARE Court.

SB 1338’s use of the terms “Supported Decision-Making" and “Supporter” to describe certain court-ordered components of the CARE Court process is so inconsistent with well-established definitions of those concepts that the usage is not just inaccurate. It is misleading and problematic.   

Supported Decision Making (SDM) is a practice that has been recognized and endorsed by the Administration for Community Living of the U.S. Department of Health and Human Services, (which funds the National Resource Center for Supported Decision-Making),27 the American Bar Association Commission on Law and Aging,28 and the United Nations Convention on Rights of Persons with Disabilities.29 Across the board, these entities have used the term SDM to refer to a model or practice that enables individuals to make choices about their own lives with support from a team of people they choose. With SDM, individuals choose people they know and trust to be part of a support network that helps them understand their issues, options, and choices. The role of the supporter is to offer guidance and advice, but to ultimately honor and help carry out the choices made by that individual, regardless of whether the supporter thinks they are in the person’s best interest.30

Contrary to SB 1338’s statement of findings and declarations, the new “CARE Supporter” role will not advance and protect self-determination and civil liberties of Californians living with severe mental illness. More troublingly, the “CARE Supporter” role is not just acting within a coercive system but also has the potential to be an agent of that system. If a person “fails” or does not comply with their “CARE plan,” they risk being forced into a conservatorship based on reports from the “CARE Supporter” about whether the person followed their plan. Therefore, because these “CARE Supporters” are appointed for the express purpose of assisting with decisions as part of the CARE Court process, they are more accurately “court-appointed navigators,” and should be recognized as such.

Because a person’s choice of their own supporters is at the heart of SDM, it cannot exist within a framework of a coercive court-ordered treatment scheme where a judge appoints a navigator whom the individual has never met and has no reason to trust.     

Disability Rights California and Disability Rights Education and Defense Fund—signatories to this letter—are co-sponsors of AB 1663 (Maienschein), the Probate Conservatorship Reform and Supported Decision-Making Act, which seeks to codify SDM as part of the Probate Code. AB 1663 passed out of this committee with a vote of 10-0. The bill makes clear that SDM allows a person with a disability to choose voluntary supports to help them with decisions, as requested. SB 1338’s misappropriation of these concepts and proposed statutory language from AB 1663, without using the appropriate definitions of the terms, undermines the true meaning and value of SDM.       

VII. Many critical terms and concepts are not defined by SB 1338 or anywhere else in California law.

SB 1338 does not adequately define critical terms and concepts necessary to provide adequate understanding of the parameters of CARE Court. This lack of clarity will result in confusion and inconsistent application of the law across the state. These terms and concepts include, but are not limited to:

  • “Not clinically stabilized in on-going treatment with the county behavioral health agency” (§ 5972(c));
  • “Qualified behavioral health professional” (§ 5975(g)(1));
  • Criteria for “graduation” from CARE Court (§ 5977(h)(1));
  • Criteria for “reappointment” to CARE Court (§ 5977(h)(1));
  • Criteria and process for finding that a person is “not participating in CARE proceedings” or “failing to comply with the CARE plan” (§ 5979(a));
  • Criteria and process for terminating a participant from CARE Court 5979(a));
  • Criteria and process for finding that a county is not complying with court orders (§ 5979(b)); and
  • Criteria and process for finding that a county is “persistently noncompliant” (§ 5979(b)).

VIII. Fiscal Considerations

For the purposes of the Appropriations Committee’s consideration, we believe CARE Court will be a costly mistake, diverting resources from people who need other care and investing resources in ways that will make CARE Court not just a failure but a costly one as well. CARE Court is time limited assistance with forced treatment, which has a history of more harm than good. A better use of these significant funds will be to invest in a robust housing framework for this target population and provide services.

The new court infrastructure is likely to fail at accomplishing Community Assistance, Recovery, and Empowerment (CARE). Still, an investment in courts is likely to cost in excess of hundreds of millions of dollars, if not more. Part of this may be one-time funding, but to the extent the court system needs to augment and train a workforce for the new responsibilities under CARE Court, we can estimate at least tens of millions of dollars in ongoing costs.

The bill is targeting 7,000 to 12,000 people with severe mental illness but it is unclear how they will be found, how they will get to court, and how much will be spent on care teams of providers through county behavioral health departments. Services would require extensive staffing. Ongoing costs could be at least in the hundreds of millions of dollars statewide. Current funding for mental health services, already insufficient to meet needs, will likely be diverted to pay for CARE Court, risking services for others, including children and youth. In addition, much of CARE Court will not be reimbursable through Medi-Cal.

Although there is a requirement for a care plan that includes a housing plan, the bill contains no authority for a court to order housing. Without housing first, there is a high likelihood of failure even if a robust menu of services is provided. If a person fails their care plan, “subsequent proceedings may use the CARE proceedings as a factual presumption that no suitable community alternatives are available to treat the individual.” Effective treatment takes time and anticipates relapse on the road to recovery. The high risk of failure, which may not be the fault of the individual, makes it likely the state will incur significant but indeterminate costs on conservatorships and state hospitals.

IV. Conclusion

CARE Court is not the appropriate tool for providing a path to wellness for Californians living with mental health disabilities who face homelessness, incarceration, hospitalization, conservatorship, and premature death. Instead, California should invest in evidence-based practices that are proven to work and that will actually empower people living with mental health disabilities on their paths to recovery and allow them to retain full autonomy over their lives without the intrusion of a court.

For more information on Care Court view: Disability Rights California Stands United with Individuals Experiencing Mental Health Disabilities (CARE Court)

Logos of the organizations that signed the letter.

Sincerely,

Andrew J. Imparato
Executive Director
Disability Rights California

Kevin Baker
Director of Governmental Relations
American Civil Liberties Union California Action

Mike Herald
Director of Policy Advocacy
Western Center on Law and Poverty

Andrea Wagner
Interim Executive Director
California Association of Mental Peer-Run Organizations (CAMHPRO)

Claudia Center
Legal Director
Disability Rights Education & Defense Fund (DREDF)

Mari Castaldi
Senior Legislative Advocate
Housing California

Sharon L. Rapport
Director, California State Policy
Corporation for Supportive Housing (CSH)

Paul Boden
Executive Director
Western Regional Advocacy Project (WRAP)

Ira Burnim
Legal Director
Bazelon Center

Tony Chicotel
California Advocates for Nursing Home Reform

Kim Lewis
Managing Attorney
National Health Law Project

Michael Bien
Rosen Bien Galvan & Grunfeld LLP

Abre’ Conner
Directing Attorney
Law Foundation of Silicon Valley

Sasha Ellis
Senior Attorney
Bay Area Legal Aid

Frank SmithWaters
Director
The SmithWaters Group

Karen Hernández
Lead Organizer
People’s Budget Orange County

David Duran
HHROC Co-Founder
Housing is a Human Right Orange County (HHROC)

Ambrose Brooks
Coalition Coordinator
JusticeLA

Stacie Hiramoto, MSW
Director
Racial & Ethnic Mental Health Disparities Coalition (REMHDCO)

Eric Tars
Legal Director
National Homelessness Law Center

Kelechi Ubozoh
(Individual)

David Mauroff
CEO
San Francisco Pretrial Diversion Project

Andreya Garcia-Ponce De Leon
Executive Director
San Bernardino Free Them All

Maria Apodaca
Legal Assistant
Project Amiga

Bob Erlenbusch
Executive Director
Sacramento Regional Coalition to End Homelessness

Amanda Andere
CEO
Funders Together to End Homelessness

Larry Dodson
Pastor
New Life Ministries of Tulare County

Alexis Sanchez
Director of Advocacy & Training
Sacramento LGBT Community Center

Paula Lomazzi
Executive Director
Sacramento Homeless Organizing Committee

Stuart Seaborn
Managing Director, Litigation
Disability Rights Advocates

James Burch
Policy Director
Anti-Police Terror Project
Mental Health First
The Justice Teams Network

Melissa A. Morris
Staff Attorney
Public Interest Law Project

Genevieve Romero
Fellow
Care First California

Pavithra Menon
Supervising Attorney
Mental Health Advocacy Services (MHAS)

Heidi L. Strunk
President and CEO
Mental Health America of California

Katherine Pérez
Director
The Coelho Center for Disability Law, Policy & Innovation

Lori Markuson, PhD
Administrative Coordinator
Psychologists for Social Responsibility

Jael Barnes
Pretrial Justice Organizer
Decarcerate Sacramento

Tatiana Turner
Founder
Caravan4justice

Avalon Edwards
Policy Associate
Starting Over, Inc.

Kara Chien
Managing Attorney, Mental Health Unit
San Francisco Public Defender's Office

Jordan Kough
Executive Director
Disability Rights Legal Center

Yasmin Peled
Senior Policy Advocate
Justice in Aging

Emily Harris
Policy Director
Ella Baker Center for Human Rights

Paul Simmons
Executive Director
Depression and Bipolar Support Alliance – CA

Keris Jän Myrick, M.B.A., M.S., Ph.D.c
Host
Unapologetically Black Unicorns

Cathy E. Costanzo
Executive Director
Center for Public Representation

Jessica Lehman
Executive Director
Senior & Disability Action

cc:
The Honorable Members, Senate Appropriations Committee               
The Honorable Thomas Umberg, California State Senate
Zach Keller, Legislative Director, Office of Senator Umberg