MENTAL HEALTH SYSTEMS

Overview

The Bazelon Center has led efforts for the past 45 years to ensure that people with mental health needs have access to non-coercive community and evidence-based mental health services. As a major player in the mental disability rights movement in the mid-1970s, the Bazelon Center was able to secure a host of landmark court decisions that laid out requirements that are now firmly embedded as standard practice in mental health systems. The Bazelon Center was involved in Wyatt v. Stickney (Alabama), O’Connor v. Donaldson (Florida), Dixon v. Gray (Washington, DC) and other important cases that established vital legal precedents, including requirements for: (1) a factual basis beyond psychiatric diagnosis for civilly committing an individual to a hospital; (e.g., “danger to self or others”); (2) the right to legal representation and due process; (4) freedom from coercive or dangerous treatment (e.g., seclusion and restraint or brain surgery); (5) access to meaningful health treatment and physical healthcare; and (6) freedom from unnecessary confinement (i.e., “least-restrictive treatment”).

These hard-won rights spurred deinstitutionalization, whereby hundreds of thousands of individuals who had been consigned to custodial “back” wards of state hospitals were discharged to various community settings (including nursing homes and group homes) that were state-of-the-art at the time. Additionally, the Americans with Disabilities Act (ADA), has provided the Bazelon Center to advocate and build a mental health system that provides the necessary community services.

The Bazelon Center is working to ensure individuals with psychiatric disabilities at all income levels have access to the core set of community mental health systems that will enable them to live and work independently in the community.


People with mental disabilities should make their own life decisions. They should not be made by government or medical professionals. At the Judge David L. Bazelon Center for Mental Health Law, we work to protect people’s autonomy, including their right to vote, participate in community life, and make choices about the care they receive.

Forced mental health care is never appropriate, except when there are immediate and serious safety risks. And even then, listening to consumers and respecting their choices is essential to designing service plans that succeed. For choice to be real, systems must offer a wide array of interventions and supports, and consumers must understand their benefits and risks.

Adequate services available on a voluntary basis that help people maintain homes, jobs, and family and community ties encourage people to seek the assistance they need. Coercive systems with a limited menu of medications, office-based therapy and institutional care often result in poor outcomes and discourage help-seeking.  A new trend is self-directed care, which puts some of the resources in the hands of consumers to spend on services they choose. In the Driver’s Seat: A Guide to Self-Directed Mental Health Care describes this.


ADA & People with Disabilities | Housing | Campus Mental Health | Forced Treatment | Advance Directives | Parental Rights | Privacy | Voting

THE AMERICANS with DISABILITIES ACT (ADA) & PEOPLE with MENTAL DISABILITIES

The Americans with Disabilities Act (ADA) is designed to fully integrate people with disabilities into American life. The Act prohibits discrimination in employment, in the activities of state and local government, and by private businesses.

The ADA protects people with mental disabilities, including people with mental illnesses. The ADA protects people who have a current mental “impairment “or who are discriminated against because they have a history of such impairment or are regarded as having such an impairment.

The ADA attacks discrimination in three ways. First, it prohibits governments and business from treating people differently simply because they have a disability. Second, it requires governments and businesses to make changes to how they operate (“reasonable accommodations”) so that people with disabilities get the same access and the same benefits as other people. Third, the ADA requires that state and local governments deliver services, including mental health services, in “the most integrated setting,” that is, a setting that maximizes independence and participation in community life.

The ADA’s vision of independence and community integration informs all of the Bazelon Center’s work.  We collaborate with the federal government and other advocates to ensure that government and businesses comply with the ADA, and we bring or assist in lawsuits that will advance compliance with the ADA.

THE AMERICANS with DISABILITIES ACT

Bazelon Center staff are experts on the ADA. For more information about the ADA specifically, please visit the following website.

ADA.gov

CASE: MONTGOMERY PUBLIC SCHOOLS (ALABAMA)

The Bazelon Center, along with the Alabama Disabilities Advocacy Program, filed complaints with the Alabama State Department of Education charging that the Montgomery Public Schools failed to identify and provide needed services to children with emotional disturbances. These children are entitled to the special education and related services they need to stay in their neighborhood schools and learn, and the Montgomery Public Schools violates the Individuals with Disabilities Education Act, the Americans with Disabilities Act, and the Rehabilitation Act by failing to provide it.

Learn More »

CASE: OLMSTEAD

The Olmstead Supreme Court decision affirmed that the ADA prohibits the segregation of individuals with disabilities. This was a landmark decision that set a precedent for how people with mental disabilities should be treated. The Bazelon Center played a very central role as this case moved through the court system. When it reached the Supreme Court, the Bazelon Center organized the filing of amicus briefs to provide background to the Court on critical issues.

Learn More »

HOUSING

People with mental disabilities can successfully live in their own homes like everyone else. Yet, historically, service systems have steered people with mental disabilities to group homes, board and care homes, nursing homes, and other congregate settings. Those who seek housing on their own are often thwarted by discrimination and low income.

To help people with mental disabilities live in their own homes, we advocate for affordable housing, fight housing discrimination, and work to expand supportive housing, which links people who have severe disabilities with the assistance they need to live independently.

To improve access to affordable housing, we are working with other advocates to secure a vast increase in the number of rental vouchers through the federal government that are available to people with mental disabilities. We are also advocating for financing to develop affordable housing units, including through a National Housing Trust. We work with the U.S. Department of Housing and Urban Development to ensure enforcement of the Fair Housing Act, which prohibits discrimination based on disability, and we help lawyers around the country who represent victims of discrimination, including evictions based on fear and prejudice concerning mental disability.

Supportive housing has allowed thousands of people with serious mental illnesses to live independently, integrated into their communities. For this reason, the Bazelon Center vigorously promotes this model as a means of achieving the goals of the Americans with Disabilities Act (ADA). Supportive housing gives people their own apartment or home while making available to them a wide variety of flexible, individually-tailored services and supports. Services may include mental health and substance abuse treatment, peer support, crisis intervention, case management and independent living services, such as help in learning how to maintain a home. Supportive housing participants have the same rights and responsibilities as any other tenant. People who live in supportive housing are integrated within their communities; they are not consolidated in particular buildings or developments.

CAMPUS MENTAL HEALTH

The Bazelon Center believes that colleges and universities should be committed to the success of all their students and should encourage students to seek counseling when they feel depressed or overwhelmed or otherwise have mental health needs. Yet some schools lack comprehensive policies for responding to students with mental health issues or do so in discriminatory or punitive ways, requiring them to leave school or evicting them from college/university housing. Some charge students with disciplinary violations for suicidal gestures or thoughts. Such measures discourage students from seeking help. They isolate students from social and professional supports—friends and understanding counselors and teachers—at a time of crisis, increasing the risk of harm.

Schools often respond to students with mental health needs in ways that violate the Americans with Disabilities Act (ADA). Under the ADA, colleges and universities may not exclude students because of their mental health needs, except when the student cannot meet academic and behavioral standards even with treatment and other help. In addition, schools must provide students with disabilities “reasonable accommodations” —modifications to normal rules and procedures that enable students to continue and succeed in higher education.

The Bazelon Center has created Supporting Students: A Model Policy for Colleges and Universities to support students with mental health needs and to ensure that schools’ actions toward students are nondiscriminatory. The model was developed after consultation with mental health experts, higher education administrators, counselors and students.  We also offer a guide, developed by a group of young leaders, for students seeking help for mental health issues.

FORCED TREATMENT

People with mental illnesses have the right to choose the care they receive. Forced treatment–including forced hospitalization, forced medication, restraint and seclusion, and stripping–is only appropriate in the rare circumstance when there is a serious and immediate safety threat. In general, circumstances that give rise to the use of force are not spontaneous and do not occur in isolation. Usually, there were multiple opportunities for earlier interventions that could have prevented the need for force. For this reason–and to counteract coercion that is too often routine in mental health systems–it is important to regard the use of forced treatment as reflecting a failure in service and to reform systems accordingly.

The Bazelon Center has a long history of opposing forced treatment. Not 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. The reliance on forced treatment may confirm false stereotypes about people with mental illnesses being inherently dangerous. Moreover, the experience of forced treatment is traumatic and humiliating, often exacerbating a person’s mental health condition.

Often, it is difficult to engage people in treatment. But service systems have developed effective techniques for doing so. Peer services, outreach, mobile outreach [such as assertive community treatment (ACT)], and supportive housing (Housing First) have proven success. All too often, systems turn to force and coercion because they lack such services.

The Bazelon Center advocates for self-determination in treatment decisions and works for service systems that avoid force and coercion. Such systems listen carefully to consumers and offer the type of services and support that consumers prefer. Such systems do not simply respond to crises but develop plans in partnership with the individuals they serve to avert crises. When treatment plans are imposed, it is not surprising that consumers may depart from the plan. Shared responsibility promotes “buy-in” and better treatment outcomes. In the long run, the best way to secure “treatment compliance” is to respect consumer choice

POSITION STATEMENT

The Bazelon Center opposes involuntary outpatient commitment.

Read Our Position Statement Here

ADVANCE DIRECTIVES

People who are concerned that they may be subject to involuntary psychiatric treatment or commitment at some future time can prepare a legal document in advance to express their choices about treatment. This is called a psychiatric advance directive.

Under federal law, advance directives must be offered in any facility receiving Medicare or Medicaid reimbursements (including any psychiatric hospital). The law applies equally to individuals with a psychiatric illness and those with any other medical condition. States also have laws governing advance directives and have often produced their own suggested forms for such a document.  More information on state laws can be found at the National Resource Center on Psychiatric Advance Directives, a joint project of the Bazelon Center and Duke University.

Advance directives can specify the treatment a person wishes to receive if they are found incapacitated, such as which medications they prefer, treatments they do not wish to have or ways in which treatment may be administered (such as refusing shots and choosing pills). It also allows them to make other specifications, such as who they would like to be allowed to visit them in a hospital, what arrangements they want for their children or for pets, and any financial arrangements that are needed (such as how their bills should be paid). What is included in an advance directive is entirely up to the person who creates it.

PSYCHIATRIC ADVANCE DIRECTIVES TEMPLATE

The Bazelon Center has developed a Psychiatric Advance Directives template for consumers’ use to create their own.

Download the Template Here

FEDERAL LAW FACT SHEET

The Bazelon Center created a fact sheet to help people understand the federal law on advance directives.

Read the Fact Sheet Here

PARENTAL RIGHTS

Historically, individuals with mental disabilities have faced enormous societal biases concerning their fitness to serve as parents. For many years, the chief governmental response to the issues and challenges of parenting with a mental disability was to sterilize individuals with mental disabilities and prevent them from having children. As attitudes have evolved in this country, involuntary sterilization has given way to taking away these parents’ children after they are born, often with disastrous consequences for families.

Stereotyped notions that individuals with mental disabilities are inadequate parents and place their children at high risk of abuse or neglect, continue to be prevalent. In addition, there is a widespread failure among child welfare agencies and courts to offer these parents the types of services that would enable them to parent effectively. Taken together, these factors have made it very difficult for parents with mental disabilities to maintain parental rights.

Efforts to prevent loss of parental rights by this population have typically fared poorly. Strong advocacy and strategic planning are needed to prevent these trends from continuing. Collaboration between protection and advocacy system lawyers and lawyers who represent parents in custody and termination proceedings may help generate positive results for these families.

AMICUS BRIEF: IN THE INTEREST of C.W.

This case involves a mother diagnosed with physical and mental disabilities. She was in danger of having to give up custody of her two-year-old son, despite the fact that there was no credible evidence that this was necessary. The Bazelon Center, along with the American Civil Liberties Union, filed an amicus brief to provide the court with crucial information.

Read The Amicus Brief Here

SUPPORTING PARENTS with PSYCHIATRIC DISABILITIES

The Bazelon Center was a key contributor to a model statute developed under a grant to the University of Pennsylvania from the Department of Education, that lays out the importance of supporting parents with psychiatric disabilities.

Read the Model Statute Here

PRIVACY

Everyone receiving health care has a right to privacy when it comes to medical information. This right is especially important to people with mental illnesses because of the stigma associated with their condition. People are often denied jobs, housing, educational or social opportunities when their mental illness is disclosed. Fear of disclosure discourages many from seeking mental health care. Compromising current privacy protections would discourage them even more.

In emergency situations, limited disclosures of private medical information can be made. When such disclosure is necessary, consent from the individual receiving treatment should first be sought, if feasible. Additionally, mental health treatment providers should discuss with consumers in advance their rights with respect to privacy, limitations on those rights, and who they want to be contacted in an emergency.  While it may be appropriate to release confidential information to family members in an emergency situation, treatment providers must consider whether such a disclosure may exacerbate the situation or damage the therapeutic relationship between the provider and the consumer.

Some complain that privacy laws prevent multiple agencies from sharing information about an individual that would allow them to coordinate their efforts. More often than not, consumer consent for information-sharing can be secured if consumers are informed about the importance of service coordination, the obligations of recipients of the information to preserve confidentiality, and consumers’ rights to control the types of information to be shared.  Research shows that people with mental illnesses are as competent to make decisions about their medical privacy as other people who receive medical care. It is not always the case, however, that such sharing benefits people with mental illnesses. For example, individuals confined in jail are often treated worse – by the jail, lawyers, and judges – if their mental illness is disclosed.

Each state has its own privacy laws and these protections vary. In addition, federal law plays a role in privacy matters. The Health Insurance Portability and Accountability Act (HIPAA) sets a national minimum standard for privacy protection. It also provides the right for individuals to review their own records and submit corrections if warranted.  Federal law provides special protections for records of substance abuse treatment.

Furthermore, privacy of genetic information is an area of increasing concern. In 2008, the Genetic Information Nondiscrimination Act became law, prohibiting health insurers and employers from discriminating on the basis of genetic information. Interim final regulations for its implementation to protect consumers were issued on October 2, 2009.

Overall, the Bazelon Center believes that people with mental illnesses should be able to control access to information about their treatment.

GENETIC INFORMATION NONDISCRIMINATION ACT of 2008

In 2008, the Genetic Information Nondiscrimination Act became law, prohibiting health insurers and employers from discriminating on the basis of genetic information.

Read a Summary of the Act Here

NEW YORK TIMES ARTICLE

In March of 2017, as a part of their efforts to repeal and replace Obamacare, the G.O.P. introduced the Preserving Employee Wellness Programs Act. The bill was “aimed at making it easier for companies to gather genetic data from workers and their families, including their children.”

The Bazelon Center opposed this bill and our own Deputy Legal Director, Jennifer Mathis, was quoted in this New York Times Article as a voice of opposition.

VOTING

Voting is perhaps the most fundamental of all rights. It is the foundation of our democracy. And votes count: in 2000, President George W. Bush won the presidential election by winning in Florida by a margin of 930 votes – out of six million cast.

People with psychiatric disabilities are often denied the opportunity to vote on the grounds  that they are not “competent” to cast a ballot. Some states have laws forbidding people under guardianship from voting, regardless of whether they are competent to do so. Sometimes poll workers, election officials, and even service providers forbid people from voting by imposing their own “competence” standards that have no basis in law.

Under federal law, a person cannot be barred from voting because of “incompetence” except in very limited circumstances. As a rule, if a person is competent enough to go to the polls and vote, or to complete an absentee ballot, federal law requires that the person be allowed to vote.

 

VOTING RIGHTS GUIDE

The Bazelon Center and the National Disability Rights Network have created a voting guide to help people with mental disabilities understand their rights, including the assistance to which they are entitled. Also, flyers are available for distribution or posting in polling places, board of election offices, community mental health centers, and community residences.

As the guide explains:

  • People have the right to vote even if under guardianship.
  • Only a judge can make the decision that someone is not competent to vote.  Service providers, including nursing homes, hospitals, and group homes, cannot bar people from voting.
  • If a state imposes a voter competence requirement, it must apply equally to all voters. For example, election officials cannot require that people with psychiatric disabilities have a comprehensive understanding of the election process or of positions taken by candidates unless they apply the same test to all voters.
  • People with disabilities have the right to get help with voting and to decide who will help them vote. Help can be provided by a friend, family member, caregiver, or service provider.

Read More »