Rights of People with Mental Health and Substance Use Conditions

Rights and Privacy Issues

Policy 

Mental Health America is committed to the principle that people with mental health and substance use conditions are entitled to those health care and other services and legal protections which will enable them to maximize their abilities and be fully integrated into all aspects of life. More specifically this includes the preservation of liberty and personal autonomy, presumption of competency, freedom from seclusion and restraints, protection of privacy, as well as specific consumer needs for employment, housing, benefits, consumer-driven mental health systems, self-help and peer support services, and ending discrimination. This also includes adherence to the Americans with Disabilities Act, the Individuals with Disabilities Education Act (IDEA), the Rehabilitation Services Act, the Fair Housing Act, and other legislation that protects the rights of people with mental health and substance use conditions. The following statement derives from the principles of choice, empowerment and self-determination and advocates fighting discrimination toward and abuse of people with mental health and substance use conditions.

Background

Historically, the treatment of persons with mental health and substance use conditions has been based upon the pervasive, false and seriously harmful assumptions that people with mental health and substance use conditions: (1) are incapable of making a responsible independent judgment about accepting or refusing treatment and other important aspects of their lives and (2) are substantially more dangerous or violent than other persons. These assumptions ignore the principle fundamental to the preservation of liberty that a person is competent unless legally proven otherwise and the plain fact that most of the more than 25% of Americans facing behavioral health challenges are competent most of the time. While major strides have been made, people with mental health and substance use conditions continue to be denied their full rights as citizens and suffer from stigma and discrimination.

Studies continue to show that people with mental health and substance use conditions are only slightly more violent than the general population.[1] But violent acts committed by persons with mental illnesses are frequently highly sensationalized and lead to repeated stigmatization of persons with mental illnesses and threats to their autonomy and privacy in the guise of increasing protection of public safety.

Rights in Need of Protection

Mental Health America is committed to equal justice and protection of legal rights for all persons affected by mental health and substance use conditions, including children, adolescents and their families, and older adults. Mental Health America supports the enactment and enforcement of laws and policies designed to protect the rights of persons with mental health and substance abuse. The following rights are specifically identified because they are most likely to be abridged:

1. Rights Regarding Benefits and Service Delivery

  • The right to affordable health insurance and to affordable health care which includes mental health and substance use treatment services.[2]
  • The right to be fully informed of all beneficial treatment options covered and not covered, including related costs. This information should be provided in a format that meets the health literacy capacities of the person.
  • The right to receive timely, culturally and linguistically appropriate and complete information about rights upon enrollment in a health plan, upon entering treatment, and at any time upon request. This information should address benefits and services, how to access available services, how to appeal a decision, how to lodge a complaint, and how to get help to navigate a service delivery system.
  • The right to have advance directives about treatment preferences-and the right to have them honored.[3]
  • The right to insurance parity, including freedom from limits based on annual and lifetime expenditures, days or visits, co-payments, or diagnoses.[4]
  • The right to the least restrictive and least intrusive response to a need for mental health or substance use treatment services.[5]
  • The right to sue the health plan for authorization denials that threaten harm to the person.
  • The right to expedited reviews and appeals from the person’s health plan when the situation is emergent or urgent.
  • The right to access services in the person’s own community, including without limitation primary and oral health care, crisis intervention, emergency services, diversion, rehabilitation, outreach, housing, employment, mobile services, and the right to seek care from a provider who does not participate in the person’s health plan if the provider network is insufficient.[6]
  • The right to be fully involved in treatment, referral and discharge plans as they are developed, implemented and revised. Parents and guardians have the right to meaningful involvement in developing and implementing the treatment plan for their children who are still minors.
  • The right to be fully informed of treatment side effects and treatment alternatives in order to make informed decisions without coercion or the threat of discontinued services.
  • The right to selectively refuse undesired treatment services without the loss of desired services.[7]
  • The right to receive services from providers who have appropriate linguistic skills in the needed language or access to appropriate interpreting support services.[8]
  • The right to be directed to treatment modalities that are culturally competent according to ethnicity, sexual orientation, religious beliefs, and disability.[9]
  • The right to access medically necessary and effective medications without being subjected to coercive "fail first" policies, discriminatory or excessive co-payments, or time-consuming prior authorization paperwork and processes.[10]
  • The right to receive appropriate, specialized and individually tailored education as a component of treatment for young people.[11]
  • The right to receive treatment services in one's own community, with reasonable efforts to serve children and adolescents while they remain in their homes.
  • The right to be transported to treatment facilities by medical personnel rather than law enforcement agents.

2. Rights Related to Preservation of Liberty and Personal Autonomy

  • The right to receive treatment services in a setting and under conditions that are the most supportive of personal liberty, with restrictions of that liberty only as needed to preserve safety.[12]
  • The right to easy access to any available rights protection service and other qualified advocates, including federally funded protection and advocacy systems.
  • The right to assert grievances and to have them addressed in a timely manner, as well as with an external reviewer upon request, with no negative repercussions.
  • The right to the use of voluntary admission procedures and to receive treatment on a voluntary basis wherever possible.
  • The right to receive treatment and services only with informed consent, except as over-ridden by a court.
  • The right to establish advanced directives and living wills and to appoint surrogate decision-makers (with a durable power of attorney), specifying how one wishes to be treated in an emergency or if s/he is incapacitated, as permitted by law.[13]
  • The right to be free from any form of corporal punishment.
  • The right to a humane treatment environment affording appropriate privacy and personal dignity and protection from harm.
  • The right to unimpeded, private, and uncensored communication by mail, telephone and contact visitation, including reasonable hours for visitation and access to the telephone.
  • The right to be deemed competent to exercise all constitutional, statutory and common law rights and privileges and to manage one's own affairs unless restricted or limited through appropriate due process procedures.[14]
  • The right to inexpensive, stigma-free guardianship procedures that are the least intrusive necessary to accomplish the provision of appropriate services and which include a delineation of the duties of the guardian.
  • The right to limited or partial guardianship based on proof that the particular right or privilege cannot be exercised by the individual, with the extent of guardianship tailored to the person's individual needs and based on the extent of his/her disability.
  • The right to have all restrictions explicitly enumerated in the court order and to have copies provided to the interested parties.
  • The right to legal counsel for every threat of loss of a privilege or right.
  • The right to easy access to a person's attorney or legal representative while under a commitment order.
  • Where involuntary commitment to an inpatient facility is deemed necessary, the following rights should apply:[15]
    • due process hearing,
    • provision of counsel,
    • minimum burden of proof of "clear and convincing" evidence,
    • a jury trial (at the respondent's election),
    • presentation of witnesses and opportunity for cross examination,
    • a clear standard of commitment which includes proof that:
  •  
    •  
      • serious physical harm to the respondent or others will occur in the absence of involuntary confinement.
      • the place of confinement can provide the treatment being sought by the petitioner,
      • there are no less restrictive but suitable alternatives to the placement being sought, and
      • a specific overt act of dangerousness (including a stated threat), and
  • the right to an appeal, including the right , if indigent, to a free transcript of the hearing and the appointment of counsel

3. Rights Related to Seclusion and Restraint

  • The right to protection from the use of seclusion and restraints. MHA believes that use of seclusion and restraints should be abolished. In the interim, such methods should only be used after other less restrictive techniques have been tried and failed, and only in response to violent behavior that creates extreme threats to life and safety. Seclusion and restraint procedures should not be used on individuals with medical conditions that would render this dangerous.[16]
  • The right to have existing advanced directives that address the use of seclusion and restraints followed by the facility. [17]
  • The right to review a facility's written procedures governing the use of seclusion and restraints. These procedures should require the documentation of alternative, less intrusive intervention approaches that were tried and the rationale why these failed or were not appropriate.
  • The right to information that specific behaviors may result in the use of restraining procedures or seclusion. Cooperation of the person should be sought and honored.

4. Rights Related to Privacy and Information Management

  • The right to privacy and confidentiality of personal information.[18]
  • The right to access and supplement his/her own medical record.
  • The right of parents or guardians to access their minor children's mental health records, except where such information is protected by law.
  • The right to receive information about confidentiality protocols when a person joins a new health plan or begin treatment with a new clinician, as well as on request on an ongoing basis.
  • The right to withdraw, narrow or otherwise modify terms of consent for information to be released.
  • The right to be informed of:
    • the type(s) of information that will be disclosed (nature and extent);
    • who has the authority to disclose information;
    • to whom the information will be disclosed; and
    • the purpose(s) for which the information is needed.

5. Rights Related to Specific Needs

  • Employment: Mental Health America supports full implementation of the Americans with Disabilities Act and the Rehabilitation Services Act. People with mental health and substance use conditions must be given every opportunity to be gainfully employed in occupations where, with reasonable accommodation, they can contribute. Additionally, Mental Health America calls upon the mental health system to practice affirmative action in training and employing people in recovery in professional careers in the mental health and substance use treatment systems.[19]
  • Housing: People with disabilities are entitled to safe, appropriate, and permanent housing of their choice. Least restrictive housing is required.[20]
  • Benefits: People with disabilities need assured access to sufficient income, social supports and comprehensive health care to enjoy an adequate quality of life. People with disabilities from substance use disorders also need the same Social Security benefits to which people with other disabilities are entitled. This requires Congress to reinstate substance use disorders as an eligible disability category, which was eliminated in 1986.
  • Consumer-Driven Mental Health Systems: Recovery and healing, not social control, should be the goal and outcome of the mental health and substance use treatment systems; therefore, both treatment systems should be consumer-driven.[21]
  • Self-Help and Peer Support Services: Mental Health America supports the full and sustained funding and development of user-run alternatives and additions to the traditional mental health and substance use treatment systems, in every community.[22]
  • Ending Discrimination: Discrimination, abuse, ostracism, stigma and other forms of social prejudice should be identified and vigorously opposed at every opportunity.

 

Effective Period

This policy was approved by the Mental Health America Board of Directors on September 9, 2017. It is reviewed as required by the Mental Health America Public Policy Committee.

Expiration: December 31, 2022

[1] See MHA Position Statement 72, concerning violence, in which the evidence is analyzed in detail, concluding that: “MHA believes that risk of violence is in fact slightly higher among persons with mental illness than among persons without mental illness. Among small subgroups of persons with serious mental illness, such as those experiencing first-episode psychosis or during the period surrounding inpatient psychiatric hospitalization, rates of violence toward others are elevated compared to rates in the overall U.S. population. And mental illness is a significant cause of suicide.”

[2] MHA supports federal and state legislation to insure that, whether through government programs such as Medicare, Medicaid and the Veterans Administration, or through private insurance, with government subsidies when needed, everyone has coverage for all of their essential healthcare needs throughout their lives. Just as there is no health without mental health, so to there is no mental health with physical health. See MHA Position Statement 71, Health Care Reform

[3] See MHA Position Statement 23, Psychiatric Advance Directives

[4] See MHA Position Statement 15, Mental Health Parity in Health Insurance

[5] See MHA Position Statement 22, Involuntary Treatment, and MHA Position Statement 25, Community Inclusion After Olmstead

[6] See MHA Position Statement 71, Health Care Reform

[7] See MHA Position Statement 22, Involuntary Treatment

[8] See MHA Position Statement 18, Cultural and Linguistic Competency

[9] Id.

[10] See MHA Position Statement 32, Access to Medications

[11] See MHA Position Statement 41, Early Identification of Mental Health Issues in Young People

[12] See MHA Position Statement 22, Involuntary Treatment

[13] See MHA Position Statement 24, Seclusion and Restraints

[14] See MHA Position Statement 22, Involuntary Treatment

[15] Id.

[16] See MHA Position Statement 23, Psychiatric Advance Directives

[17] See MHA Position Statement 23, Psychiatric Advance Directives

[18] See MHA Position Statement 27, Standards for Management of and Access to Consumer Information

[19] See MHA Position Statement 31, Development of Employment Services for Adults in Recovery from Mental Health and Substance Use Conditions

[20] See MHA Position Statement 25, Community Inclusion After Olmstead

[21] See MHA Position Statement 11, Recovery-Based Systems Transformation

[22] See MHA Position Statement 37, The Role of Peer Support in Recovery-oriented Mental Health Systems