(9.1.1) NAMI believes that every person with a serious mental illness is entitled to the same level of service afforded other physical illnesses. Every person is also entitled to be fully informed about specific medications and procedures and the risks, possible undesirable side effects of such medications and procedures, and other options. The risks and possible undesirable side effects of refusing treatment and what the alternatives are should also be a part of this information process. Every consumer has a right to be part of individual treatment planning. Every consumer has the right to be informed of all
community services and supports.
(9.1.2) With adequate professional consultation, every person with a serious mental illness who has the capacity and competence to do so should be entitled to manage his or her own treatment. When an individual lacks capacity and competence because of his or her serious mental illness, however, the substitute judgment of others--subject to sufficient safeguards with frequent review--may be justified in determining treatment and possible hospitalization.
(9.2.1) NAMI believes that all people should have the right to make their own decisions about medical treatment. However, NAMI is aware that there are individuals with serious mental illnesses such as schizophrenia and bipolar disorder who, at times, due to their illness, lack insight or good judgment about their need for medical treatment. NAMI is also aware that, in many states, laws and policies governing involuntary
commitment and/or court-ordered treatment are inadequate.
(9.2.2) NAMI, therefore, believes that:
(9.2.3) The availability of effective, comprehensive,
community-based systems of care for persons suffering from serious mental illnesses will diminish the need for involuntary commitment and/or court-ordered treatment.
(9.2.4) Methods for facilitating
communications about treatment preferences among individuals with serious mental illnesses, family members, and treatment providers should be adopted and promoted in all states.
commitment and court-ordered treatment decisions must be made expeditiously and simultaneously in a single hearing so that individuals can receive treatment in a timely manner. The role of courts should be limited to review to ensure that procedures used in making these determinations comply with individual rights and due-process requirements. The role of the court does not include making medical decisions.
(9.2.6) Involuntary inpatient and outpatient
commitment and court-ordered treatment should be used as a last resort and only when it is believed to be in the best interests of the individual.
(9.2.7) States should adopt broader, more flexible standards that would provide for involuntary
commitment and/or court ordered treatment when an individual, due to mental illness
(18.104.22.168) is gravely disabled, which means that the person is substantially unable, to provide for any of his or her basic needs, such as food, clothing, shelter, health or safety; or
(22.214.171.124) is likely to substantially deteriorate if not provided with timely treatment; or
(126.96.36.199) lacks capacity, which means that, as a result of the serious mental illness, the person is unable to fully understand–or lacks judgment to make an informed decision about–his or her need for treatment, care, or supervision.
(9.2.8) Current interpretations of laws that require proof of dangerousness often produce unsatisfactory outcomes because individuals are allowed to deteriorate needlessly before involuntary
commitment and/or court-ordered treatment can be instituted. When the "dangerousness standard" is used, it must be interpreted more broadly than "imminently" and/or "provably" dangerous.
(9.2.9) State laws should also allow for consideration of past history in making determinations about involuntary
commitment and/or court-ordered treatment because past history is often a reliable way to anticipate the future course of illness.
(9.2.10) An independent administrative and/or judicial review must be guaranteed in all involuntary
commitment and/or court-ordered treatment determinations. Individuals must be afforded access to appropriate representation knowledgeable about serious mental illnesses and provided opportunities to submit evidence in opposition to involuntary commitment and/or court-ordered treatment.
(9.2.11) Responsibility for determining court-ordered treatment should always be vested with medical professionals who–in conjunction with the individual, family, and other interested parties–must develop a plan for treatment.
(9.2.12) The legal standard for states to meet to justify emergency
commitments for an initial 24 to 72 hours should be "information and belief." For involuntary commitments beyond the initial period, the standard should be "clear and convincing evidence." Involuntary commitments and/or court-ordered treatment must be periodically subject to administrative or judicial review to ascertain whether circumstances justify the continuation of these orders.
(9.2.13) Court-ordered outpatient treatment should be considered as a less restrictive, more beneficial, and less costly treatment alternative to involuntary inpatient treatment.
(9.2.14) Efforts must be undertaken to better educate justice systems and law enforcement professionals about the relationship between serious mental illnesses and the application of involuntary inpatient and outpatient
commitment and court-ordered treatment.
(9.2.15) Private and public health insurance and managed care plans must cover the costs of involuntary inpatient and outpatient
commitment and/or court-ordered treatment.
supports the efforts of states to develop processes by which caregivers and service providers work collaboratively with persons with serious mental illnesses to develop plans for treatment, services, and supports that are followed, when, and if, needed in the future.
NAMI believes that the assets of trusts established for the benefit of persons with serious mental illnesses should be secure from capture for any purposes other than those prescribed in the documents establishing the trusts.
(9.5.1) NAMI acknowledges the dramatically changed environment of data linkages, data integration and initial inability to control access or identify recipients once data has been
communicated without prior approval.
With the advent of electronic medical record systems, NAMI
supports having safeguards for patient confidentiality to prevent inappropriate access to psychiatric information and drug and alcohol information.
supports the involvement of consumer and family members as
partners in the development of policy and use of data for decision making and the collaborative use of information by all stakeholders.
supports the key roles of mental health professionals and practioners and their responsibilities, as part of good professional practice and professional ethics, to share information with both their patients or clients and family members and other verified caregivers.
(9.5.4) NAMI believes that national standards should be adopted for maintaining the privacy and confidentiality of individually identifiable medical records. These standards should serve as a floor, not a ceiling, for health privacy protections, and should apply to all entities, private and public, governmental and non-governmental which access health care records for any reason. States should be encouraged to add specific protections not provided under Federal law.
(9.5.5) NAMI believes that consumers (patients) of healthcare services own their own health records, especially those parts including any individual identifying information, while providers and managed care organizations are custodians of these records. Consumers have the right to inspect and amend their own healthcare records. Providers and managed care organizations should be allowed the use of aggregate data for purposes of quality assurance, and research.
(9.5.6) Federal legislation should require that consumers/patients provide informed consent for any use or disclosure of individually identifiable health information which pertains to them. Lack of initial informed consent should not exempt providers and managed care organizations from providing emergency care, urgent care or medically necessary care to persons suffering from mental illnesses.
(9.5.7) Federal legislation protecting privacy and confidentiality of individually identifiable health information should contain strong and effective remedies for violations of these protections.
(9.5.8) NAMI believes that treatment providers are responsible for making known to caring families and caregivers any information necessary to the ongoing care of persons with serious mental illnesses. Professionals are obliged to accept information from family members or others who function in a caregiving role. In the event a patient objects to disclosure, the provider should use best clinical judgment in determining how to proceed.
(9.5.9) NAMI believes that law enforcement authorities must obtain search warrants or comparable determinations of probable cause by judges or magistrates before they can access individually identifiable medical information.
(9.5.10) Federal and state legislation should be drawn so as to protect individual privacy rights to the maximum extent feasible, while not impeding the conduct of biomedical, clinical or pharmaco-epidemiological research or treatment.
(9.5.11) When one physician makes a formal referral to another physician, clinical information, including information about medications, shall be made available to enhance clinical outcomes and avoid adverse treatment outcomes. When there is no formal referral, it is the responsibility of each treating professional to obtain information necessary to assure the provision of appropriate care and treatment.
In all cases, the exchange of such information shall be treated confidentially and protected. .The sharing of clinical information or refusal to consent to sharing of clinical information shall not be used to deny treatment, adversely affect services, or otherwise discriminate against persons with severe mental illnesses.
(9.5.12) NAMI calls upon medical and mental health providers to implement electronic health information systems for the purposes of improving quality of care and of better facilitating the effective coordination and exchange of health and mental health information. These systems should be implemented in a way that assure the privacy and confidentiality of protected health information, in accordance with applicable federal and state laws. NAMI calls for Federal studies on the feasibility of linking such systems to housing, employment and other supportive services to ensure continuity of care and coordination of services.
9.6. The Americans with Disabilities Act (
NAMI believes that a serious mental illness by itself does not constitute sufficient reason to deprive a person of the right to a free and appropriate education, the right to vote, or any other civil liberty. NAMI supports full and rapid implementation of the Americans with Disabilities Act (ADA) and enforcement of its statutory protection against discrimination in education, employment, public accommodation, and other life endeavors.
9.7 Education at all levels of Judicial and Legal Systems
NAMI believes that education about serious mental illness at all levels of judicial and legal systems is crucial to the appropriate disposition of civil and criminal cases involving individuals living with serious mental illness. Judges, lawyers, other court personnel, police officers, correctional officers, parole and probation officers, other law enforcement personnel, and emergency medical transport and service personnel should be required to complete a minimum of 20 hours of training about serious mental illness. Individuals living with serious mental illness and family members should be a part of this educational process and training should be consistent with available model standards for crisis intervention training.
9.8 Solitary Confinement
Solitary confinement is the placement of individuals in locked, highly restrictive and isolated cells or similar areas of confinement for substantial periods of time with limited or no human contact and few, if any, rehabilitative services. Placement in solitary confinement frequently lasts for weeks, months or even years at a time.
It is extensively documented that solitary confinement is used disproportionately in correctional settings for juveniles and adults with severe psychiatric symptoms. In some states, it is reported that more than half of all inmates in facilities utilizing the most extreme forms of solitary confinement and social isolation are diagnosed with serious mental illnesses. Solitary confinement for juveniles and adults living with serious mental illnesses serves no appropriate purpose in terms of discipline, protection of the individual or others, or the individualís overall functioning in general prison settings and ability to follow prison rules. Instead, solitary confinement of persons with mental illnesses causes extreme suffering, has adverse long-term consequences for cognitive and adaptive functioning, disrupts treatment and exacerbates illness.
The damaging effects of solitary confinement may be even more severe for juveniles with mental illnesses. The impact of extreme isolation on youth whose brains are still developing can be permanent. Studies show that the placement of juveniles in solitary confinement significantly increases the risk of suicide and other self-injurious behaviors.
NAMI opposes the use of solitary confinement and equivalent forms of extended administrative segregation for persons with mental illnesses.
NAMI calls upon federal, state and other correctional authorities to provide mental health care alternatives to solitary confinement that include enhanced mental health treatment, services and programs, crisis intervention training for correctional officers and mental health step-down units. States that have adopted such proactive efforts to eliminate solitary confinement have documented highly positive results that include reduced psychiatric symptoms, less violence, and significant cost savings.
NAMI further calls upon federal, state and other correctional authorities to assure continued mental health treatment, including adherence to an individual treatment plan and access to qualified mental health care professionals, in conditions of short-term disciplinary or administrative segregation.