Tag: Bazelon Centre for Mental Health Law

What is the National Alliance on Mental Illness?

Published on by Andrew Marshall5 Comments

Introduction

The National Alliance on Mental Illness (NAMI) is a United States-based advocacy group originally founded as a grassroots group by family members of people diagnosed with mental illness.

NAMI identifies its mission as “providing advocacy, education, support and public awareness so that all individuals and families affected by mental illness can build better lives” and its vision as “a world where all people affected by mental illness live healthy, fulfilling lives supported by a community that cares”. NAMI offers classes and trainings for people living with mental illnesses, their families, community members, and professionals, including what is termed psychoeducation, or education about mental illness. NAMI holds regular events which combine fundraising for the organization and education, including Mental Illness Awareness Week and NAMIWalks.

Headquartered in Arlington, Virginia, NAMI has around 1,000 state and local affiliates and is represented in all 50 US states, Washington, D.C., and Puerto Rico. NAMI is funded primarily through pharmaceutical company donations. Additional funding comes from individual donors, as well as sponsorships and grants. NAMI publishes a magazine around twice a year called The Advocate. NAMI also runs a HelpLine five days a week, which is funded in part by pharmaceutical companies Janssen and Lundbeck.

Brief History

NAMI was founded in Madison, Wisconsin, by Harriet Shetler and Beverly Young. The two women both had sons diagnosed with schizophrenia, and “were tired of being blamed for their sons’ mental illness”. Unhappy with the lack of services available and the treatment of those living with mental illness, the women sought out others with similar concerns. The first meeting held to address these issues in mental health led to the formation of the National Alliance for the Mentally Ill in 1979. In 1997, the legal name was changed to the acronym NAMI by a vote of the membership due to concerns that the name National Alliance for the Mentally Ill did not use person-first language. In 2005, the meaning of NAMI was changed to the backronym National Alliance on Mental Illness.

Mission

NAMI identifies its mission as to promote recovery by preserving and strengthening family relationships “affected by mental illness”. NAMI’s programmes and services include education, support groups, informational publications, and presentations. Although originally focused primarily on family members, in more recent years NAMI has moved toward trying to include people diagnosed with mental illness as well (although activists have criticised these efforts). In addition, NAMI has a strong focus on discriminatory attitudes and behaviours about mental illness (what they term stigma); another identified goal is “to increase public and professional understanding”, and “to improve the mental health system”.

Structure

The National Alliance on Mental Illness is a 501(c)(3) non-profit run by a board of directors who are elected by membership. NAMI National is the umbrella organisation; state and local affiliates operate semi-independently, in an attempt to more accurately represent those in the surrounding communities. Since 2015, NAMI has been using a four-year strategic plan which expires in 2019.

The national chief executive officer from 2014-2019 was Mary Giliberti, who resigned on 24 April 2019. She was immediately preceded by Michael Fitzpatrick. Gilberti, who has a law degree from Yale University and clerked for Judge Phyllis A. Kravitch. Before coming to NAMI, Giliberti worked as a senior attorney at Bazelon Centre for Mental Health Law for almost ten years and the Senate Health, Education, Labour, and Pensions Committee from 2008 to 2014. She worked for NAMI National during this time as the director of public policy and advocacy for federal and state issues. In 2017, she was “appointed by the Secretary of the U.S. Department of Health and Human Service (HHS) to serve as one of 14 non-federal members of HHS’ Interdepartmental Serious Mental Illness Coordinating Committee.”

National and state NAMI organisations function to provide Governance, Public Education, Political Advocacy, and management of NAMI’s Educational Programmes. At the local level, the local NAMI chapters also provide assistance in obtaining mental health resources, scheduling and administration of NAMI’s programmes, and hosting local meetings and events for NAMI members.

In February 2020, NAMI Sioux Falls has merged with the South Dakota Office. The move was a result of a decision by the national NAMI office.

Partnerships

In 2017, NAMI partnered with Alpha Kappa Alpha (since 2015), Instagram, tumblr, Women’s Health, Fox Sports, Stanley Centre for Psychiatric Research at Broad Institute, Jack and Jill of America, The Jed Foundation, and Lokai. Celebrity partnerships included Utkarsh Ambudkar, Maria Bamford, Andrea Barber, AJ Brooks, Sterling K. Brown, Corinne Foxx, Naomi Judd, Dawn McCoy, Stefania Owen, Alessandra Torresani, Wil Wheaton, DeWanda Wise, and Chris Wood.

Philosophy and Positions

NAMI generally endorses a medical model approach to mental illnesses, and previously was a major proponent of terming them “serious brain disorders” during the “decade of the brain”. NAMI endorses the term anosognosia, or “that someone is unaware of their own mental health condition or that they can’t perceive their condition accurately”. While NAMI previously referred to mental illnesses as “serious brain disorders”, current advice on their “How we talk about NAMI” page recommends against this language.

Programmes

NAMI programmes are generally in the area of support and education for individuals and families, often for no cost. The programmes are set up through local NAMI Affiliate organisations, with different programmes varying in their targeted audience.

NAMI Family-to-Family

The NAMI Family-to-Family Education Programme is a free eight-week course targeted toward family and friends of individuals with mental illness, providing education from a medical model perspective of mental illness. Originally offered as a twelve-week programme, but updated to a shorter model in 2020, the courses are taught by a NAMI-trained family member of a person diagnosed with a psychiatric disorder. Family-to-Family is taught in 44 states, and two provinces in Canada. The programme was developed by clinical psychologist Joyce Burland. Facilitators are required to teach material from the curriculum without alteration.

Purpose

The Family-to-Family programme provides general information about mental illness and how it is currently treated from a medical model perspective. The programmes cover mental illnesses including schizophrenia, depression, bipolar disorder, etc., as well as the indications and side effects of medications. Family-to-Family takes a biologically-based approach to explaining mental illness and its treatments.

According to the NAMI website, Family-to-Family programme states its goals as teaching coping and advocacy skills, providing mutual support, how to “handle a crisis”, “information on mental health conditions and how they affect the brain”, and locating resources in the community

Evidence Base

The NAMI Family-to-Family programme has initial research evidence; one randomised clinical trial showed gains in empowerment, increases in problem solving and reductions in participant anxiety scores following the class; these changes persisted at 6 month follow up. These studies confirm an earlier finding that Family-to-Family graduates describe a permanent transformation in the understanding and engagement with mental illness in themselves and their family. Because a randomized controlled trial is at risk of poor external validity by mechanism of self-selection, Dixon and colleges sought out to strengthen the evidence base by confirming the benefits attributed to Family-to-Family with a subset of individuals who declined participation during initial studies.

The NAMI Family-to-Family programme was found to increase self efficacy in family members involved in caring for a family member with schizophrenia while reducing subjective burden and need for information. In light of recent research, Family-to-Family was added to the SAMHSA National Registry of Evidence-Based Programmes and Practices (NREPP), although as of January 2018 this database and designation has been eliminated by SAMHSA.

NAMI Peer-to-Peer

The NAMI Peer-to-Peer is an eight-week educational programme aimed at adults diagnosed with a mental illness. The NAMI Peer-to-Peer programme describes the course as a holistic approach to recovery through lectures, discussions, interactive exercises, and teaching stress management techniques. The programme provides information about biological explanations of mental illness, symptoms, and personal experiences. The programme also includes information about interacting with healthcare providers as well as decision making and stress reducing skills. The Peer-to-Peer philosophy is advertised as being centred around certain values such as individuality, autonomy, and unconditional positive regard. The programme is also available in Spanish.

Preliminary studies have suggested Peer-to-Peer provided many of its purported benefits (e.g. self-empowerment, disorder management, confidence). Peer interventions in general have been studied more extensively, having been found to increase social adjustment.

NAMI In Our Own Voice

The NAMI In Our Own Voice (IOOV) programme started as a mental health consumer education program for people living with schizophrenia in 1996, and was further developed to IOOV with grant funding from Eli Lily & Co. in 2002. The programme was based on the idea that those successfully living with mental illness were experts in a sense, and sharing their stories would benefit those with similar struggles. The programme approached this by relaying the idea that recovery is possible, attempting to build confidence and self-esteem. Because of the initial success of the programme and positive reception, IOOV also took on the role of public advocacy.

NAMI In Our Own Voice involves two trained speakers presenting personal experiences related to mental illness, in front of an audience. Unlike the majority of NAMI’s programmes, IOOV consists of a single presentation educating groups of individuals with the acknowledgement many are likely unfamiliar with mental illness. The programme’s aims include raising awareness regarding NAMI and mental illness in general, addressing stigma, and empowering those affected by mental illness. Other than those directly affected by mental illness, In Our Own Voice often educates groups of individuals like law enforcement, politicians, and students.

In Our Own Voice has been shown to be superior at reducing self stigmatisation of families when compared to clinician led education. Research into the effectiveness of the NAMI In Our Own Voice programme has shown the programme also can be of benefit to Graduate level therapists and adolescents. A 2016 study evaluating IOOV in California found significant reductions in desire for social distancing after attending an IOOV presentation, although no validated measures were used in the evaluation.

NAMI Basics

The NAMI Basics Programme is a six-session course for parents or other primary caregivers of children and adolescents living with mental illness. NAMI Basics is conceptually similar to NAMI Family-to-Family in that it aims to educate families, but recognises providing care for a child living with mental illness presents unique challenges in parenting, and that mental illness in children typically manifest differently than in adults. Because of the development of the brain and nervous system throughout childhood and adolescence, information regarding mental illness biology and its presentation is fundamentally different from with adults. The NAMI Basics programme has a relatively short time course to accommodate parents’ difficulty in attending because of their caregiver status.

NAMI Connection

The NAMI Connection Recovery Support Group Programme is a weekly support group for adults living with mental illness. The programme is for adults 18+ diagnosed with mental illness and groups are usually weekly for 90 minutes. The support groups are led by trained facilitators who identify as having experienced mental illness themselves.

NAMI On Campus

NAMI On Campus is an initiative for university students to start NAMI On Campus organisations within their respective universities. NAMI On Campus was started to address the mental health issues of college-aged students. Adolescence and early adulthood are periods where the onset of mental illness is common, with 75% of mental illnesses beginning by age 24. When asked what barriers, if any, prevented them from gaining support and treatment, surveys found stigma to be the number one barrier.

Ending the Silence

This 50-minute or one hour programme is available for students, school staff, and family members. It involves two presenters: one who shares educational information and one who is a young adult living well in recovery who shares their personal story. This programme has been shown to improve the mental health knowledge of middle- and high school students.

In 2017, Former Second Lady of the United States Tipper Gore gave a $1 million donation to the Ending the Silence programme.

Funding

NAMI receives funding from both private and public sources, including corporations, federal agencies, foundations and individuals. NAMI maintains that it is committed to avoiding conflicts of interest and does not endorse nor support any specific service or treatment. Records of NAMI’s quarterly grants and contributions since 2009 are freely available on its website.

In 2017, NAMI had a 16% increase in overall revenue.

NAMIWalks

The 2017 annual report noted “$11.3 million raised across the country by 68,000 participants.”

Criticism

The funding of NAMI by multiple pharmaceutical companies was reported by the investigative magazine Mother Jones in 1999, including that an Eli Lilly & Company executive was then “on loan” to NAMI working out of NAMI headquarters.

During a 2009 investigation into the drug industry’s influence on the practice of medicine, US Senator Chuck Grassley (R-IA) sent letters to NAMI and about a dozen other influential disease and patient advocacy organisations asking about their ties to drug and device makers. The investigation confirmed pharmaceutical companies provided a majority of NAMI’s funding, a finding which led to NAMI releasing documents listing donations over $5,000.

Dr. Peter Breggin refers to NAMI as an “AstroTurf lobbying organisation” of the “psychopharmaceutical complex”.

What is a Psychiatric Advance Directive?

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Introduction

A psychiatric advance directive (PAD), also known as a mental health advance directive, is a written document that describes what a person wants to happen if at some time in the future they are judged to be suffering from a mental disorder in such a way that they are deemed unable to decide for themselves or to communicate effectively.

It can inform others about what treatment they want or do not want from psychiatrists or other mental health professionals, and it can identify a person to whom they have given the authority to make decisions on their behalf. A mental health advance directive is one kind of advance health care directive.

Legal Foundations

Psychiatric advance directives are legal documents used by persons currently enjoying legal capacity to declare their preferences and instructions for future mental health treatment, or to appoint a surrogate decision maker through Health Care Power of Attorney (HCPA), in advance of being targeted by coercive mental health laws, during which they may be stripped of legal capacity to make decisions.

In the United States, although 25 states have now passed legislation in the past decade establishing authority for PADs, there is relatively little public information available to address growing interest in these legal documents. In addition in states without explicit PAD statutes, very similar mental health advance care planning can and does take place under generic HCPA statutes – expanding the audience for PADs to all 50 states (see National Resource Centre on Psychiatric Advance Directives).

In addition, states are beginning to recognise legal obligations under the federal Patient Self-Determination Act of 1991, which includes informing all hospital patients that they have a right to prepare advance directives and – with certain caveats – that clinicians are obliged to follow these directives.

Finally, the Joint Commission on the Accreditation of Healthcare Organisations (JCAHO) requires behavioural health facilities to ask patients if they have PADs. The Centres for Medicare and Medicaid Services announced that patients have the right to formulate advance directives and to have hospital staff and practitioners who provide coercive interventions in the hospital comply with these directives. Hospitals out of compliance risk loss of Medicare and Medicaid revenue.

Proponents of these directives believe thy of followed by treatment providers, crisis planning using PADs will help involuntary detainees retain control over their decision making – especially during times when they are labelled incompetent. Additionally, advocates argue that health care agents will be instrumental in providing inpatient clinicians with information that can be central to patients’ treatment, including history of side effects and relevant medical conditions.

Clinical Benefits

Recent data from a NIH-funded study conducted by researchers at Duke University has shown that creating a PAD with a trained facilitator increases therapeutic alliance with clinicians, enhances involuntary patients’ treatment satisfaction and perceived autonomy, and improves treatment decision-making capacity among people labelled with severe mental illness.

Moreover, PADs provide a transportable document – increasingly accessible through electronic directories – to convey information about a detainee’s treatment history, including medical disorders, emergency contact information, and medication side effects. Clinicians often have limited information about citizens detained and labelled as psychiatric patients who present or are coercively presented and labelled as in crisis. Nonetheless, these are the typical settings in which clinicians are called upon to make critical patient-management and treatment decisions, using whatever limited data may be available. With PADs, clinicians could gain immediate access to relevant information about individual cases and thus improve the quality of clinical decision-making – appropriately managing risk to patients and others’ safety while also enhancing patients’ long-term autonomy.

For these reasons, PADs are seen as an innovative and effective way of enhancing values of autonomy and social welfare for detainees labelled with mental illness. Since PADs are among the first laws that are specifically intended to promote autonomy among people detained under mental health laws, wider use of PADs would empower a traditionally disenfranchised group when targeted for coercive psychiatry.

Barriers

National surveys in the United States indicate that although approximately 70% of people targeted by coercive psychiatry laws would want a PAD if offered assistance in completing one, less than 10% have actually completed a PAD.

Some people detained and forcibly drugged under coercive psychiatry laws report difficulty in understanding advance directives, scepticism about their benefit, and lack of contact with a trusted individual who could serve as proxy decision maker. The sheer complexity of filling out these legal forms, obtaining witnesses, having the documents notarized, and filing the documents in a medical record or registry may pose a formidable barrier.

Recent studies of practitioners of coercive psychiatry’s attitudes about PADs suggest that they are generally supportive of these legal instruments, but have significant concerns about some features of PADs and the feasibility of implementing them in usual coercive intervention settings. Clinicians are concerned about lack of access to PAD documents in a commitment, lack of staff training on PADs, lack of communication between staff across different components of mental health systems, and lack of time to review the advance directive documents.

In a survey conducted of 600 psychiatrists, psychologists, and social workers showed that the vast majority thought advance care planning for crises would help improve patients’ overall mental health care. Further, the more clinicians knew about PAD laws, the more favourable were their attitudes toward these practices. For instance, while most psychiatrists, social workers, and psychologists surveyed believed PADs would be helpful to people detained and targeted for forced drugging and electroshock when labelled with severe mental illnesses, clinicians with more legal knowledge about PAD laws were more likely to endorse PADs as a beneficial part of patients’ treatment planning.

However, many clinicians reported NOT knowing enough about how PADs work and specifically indicated they lacked resources to readily help patients fill out PADs. Thus, if clinicians knew more about advance directives and had ready assistance for creating PADs, they said they would be much more likely to help their clients develop crisis plans.

Resources

It thus has become clear that the potential significance of PADs is becoming widely recognised among those targeted for coercive psychiatry, survivors of coercive psychiatry, influential policy makers, clinicians, family members, and patient advocacy groups but that significantly more concerted efforts at dissemination were needed. The community of stakeholders interested in PADs and the broader concept of self-directed care are in need of online resource and gathering place for exchange of views and information.

As a result, in the United States, a collaboration between the Bazelon Centre for Mental Health Law and Duke University has led to creation of the MacArthur Foundation-funded National Resource Centre on Psychiatric Advance Directives, the only web portal exclusively devoted to developing a learning community to help people targeted for coercive psychiatry, their families, and clinicians prepare for, and ultimately prevent, coercive psychiatry interventions. The NRC-PAD includes basic information, frequently asked questions, educational webcasts, web blog, most recent research, legal analyses, and state-by-state information on PADs and patient-centred crisis planning. The NRC-PAD website thus includes easy step-by-step information to help those targeted for forced drugging, family, and clinicians complete PADs that mirror the provisions in the PAD statutes.

What is the Treatment Advocacy Centre?

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Introduction

The Treatment Advocacy Center (TAC) is a US non-profit organisation based in Arlington, Virginia, US.

The organization, originally announced as the NAMI Treatment Action Centre in 1997, was subsequently directed by psychiatrist E. Fuller Torrey, and identifies its mission as “dedicated to eliminating barriers to the timely and effective treatment of severe mental illness”.

The organisation is most well-known for proposed laws, policies, and practices in the areas of legally compelled outpatient services or outpatient commitment for people diagnosed with mental illness (also known as assisted outpatient treatment, AOT). The organisation identifies its other key issues as “anosognosia, consequences of non-treatment, criminalization of mental illness, psychiatric bed shortages, public service costs, violence and mental illness”. TAC has been subject to criticism by mental health advocates to be promoting coercion and forced treatment.

Brief History

Although according to the TAC website, E. Fuller Torrey founded the Treatment Advocacy Centre in 1998 as an offshoot of the National Alliance on Mental Illness (NAMI), other sources indicate that the original name was the NAMI Treatment Action Centre. Laurie Flynn, the NAMI director at the time, stated in a press release, “It’s a national disgrace that, in this age of remarkable progress in brain research and treatment, so many individuals are left out in the cold”. TAC received initial financial support from Theodore and Vada Stanley, founders of the Stanley Medical Research Institute; TAC was founded as an affiliate organisation with a separate executive director and board. The organisation operates with funding from the affiliated Stanley Medical Research Institute, a non-profit organization which provides funding for research into bipolar disorder and schizophrenia in the United States. Torrey is currently a member of the Treatment Advocacy Centre’s board and is executive director of the Stanley Medical Research Institute. The relationship between Torrey and NAMI seemed to sour according to sources, with Torrey being disinvited from NAMI’s national convention in 2012 after advocates protested his TAC involvement and promotion of outpatient commitment.

Areas of Focus

The Treatment Advocacy Centre activities and projects include:

  • Developed a template law for legally mandated outpatient mental health treatment.
    • Released in 2000, the draft text is meant as a legal framework for authorising court-ordered treatment of individuals diagnosed with mental illness who are determined by the court to meet certain legal criteria around dangerousness to self or others or inability to care for oneself due to a mental illness.
  • Research and study into public policy and other issues related specific to serious mental illness.
  • Education of policymakers and judges regarding TAC’s viewpoint on serious mental illness; TAC’s opinion is that more legally mandated treatment and increases in hospital beds will improve care.

Controversy

TAC’s major focus on legally mandated treatment is opposed by other advocacy groups. The Bazelon Centre for Mental Health Law in a statement on forced treatment states “[n]ot only is forced treatment a serious rights violation, it is counterproductive. Fear of being deprived of autonomy discourages people from seeking care. Coercion undermines therapeutic relationships and long-term treatment.” Daniel Fischer, founder of National Coalition for Mental Health Recovery, described outpatient commitment as a “a slippery slope” back to the kind of mass institutionalization seen in the 1940s and ’50s”.

What is the Bazelon Centre for Mental Health Law?

Published on by Andrew Marshall4 Comments

Introduction

The Bazelon Centre for Mental Health Law is a national legal-advocacy organisation representing people with mental disabilities in the US (Washington, D.C.).

Originally known as The Mental Health Law Project, the Centre was founded as a national public-interest organization in 1972 by a group of specialised attorneys and mental disability professionals who were working to help the court define a constitutional right to treatment in terms of specific standards for services and protections.

In 1993, the organisation changed its name to the Judge David L. Bazelon Centre for Mental Health Law to honour the legacy of Judge David L. Bazelon, whose decisions as Chief Judge of the United States Court of Appeals for the District of Columbia Circuit had pioneered the field of mental health law.

Refer to the Treatment Advocacy Centre.

Litigation

The Centre’s precedent-setting litigation has established important civil rights for people with mental illnesses or developmental disabilities. These include the right to treatment in Wyatt v. Stickney (decided in 1971 and successfully concluded in 1999), and the Supreme Court’s 1999 Olmstead v. L.C. ex rel. Zimring decision affirming the right of people with disabilities to receive public services in the most integrated setting consistent with their needs.

Federal Policy

The Centre also engages in federal policy advocacy, working with Congress and the administrative agencies to ensure, for example, that people with mental disabilities are included under the protections of the Americans with Disabilities Act and amendments to the federal Fair Housing Act, and to generate resources such as Supplemental Security Income and Medicaid that can enable them to live and thrive in the community. In 2009, a major thrust was the integration of mental health in healthcare reform.

Publications

The Bazelon Centre’s publications include reports; issue papers; law, regulation, and policy analyses; advocacy manuals; and consumer-friendly guides to legal rights. These are available for free download from the centre’s website, or print copies may be ordered by postal mail, telephone, or email.

Funding

During the 2015 fiscal year, most of the Bazelon Centre’s revenue came from contributions, gifts, and grants. Notable organisations providing grant support to the Bazelon Centre include the Open Society Foundations and the MacArthur Foundation. Beginning in 1978, the MacArthur Foundation has awarded multiple grants to the Bazelon Centre, totalling $14,035,000 as of 2016.