Consent Handbook in a MS Wordİ file

On August 2, 1990, now retired Superior Court Justice Bruce Chandler approved an agreement settling a class action lawsuit that was brought on behalf of residents of the Augusta Mental Health Institute (AMHI). The case was then named Bates v. Glover and is now named Bates v. Duby. The lawsuit was brought to correct problems at AMHI and in the community mental health service system.

The terms of the agreement are part of a consent decree signed by the court. Throughout this pamphlet the agreement and the order are called the Consent Decree. The consent decree is legally binding and enforceable by the court. Since 1990 there have been several orders enforcing the agreement entered by Justice Chandler and by Justice Nancy Mills to whom the case is now assigned.

The Consent Decree requires the Department of Behavioral and Developmental Services (formerly the Department of Mental Health and Mental Retardation) and the Department of Human Services to establish and maintain a comprehensive mental health system. The system must be responsive to the individual needs of consumers of mental health services. The actions of the Departments in developing this system are monitored by the court through a "special master", Gerald Rodman, who was appointed by the court. He maintains an office at AMHI.

A master was needed because the actions required by the Consent Decree were designed to take place over time. The Consent Decree originally estimated that the necessary actions would be completed by September 1, 1995, but that time has since been extended by the court.

Lawyers for the class members, Helen M. Bailey of Disability Rights Center and Peter Darvin of Portland, continue to work actively towards assuring that all the terms of the consent decree are met.

If you were a patient at AMHI on or after January 1, 1988 you are a "class member". If you are admitted to AMHI in the future, while the Consent Decree is being implemented, you will become a "class member" at that time. To be a class member is to be a person protected by the Consent Decree and entitled to its specific benefits.

Many of the changes required by the Consent Decree are broad and will benefit consumers of mental health services, even though they may not be members of the class.

The Consent Decree also states: "non-class members shall not be deprived of services solely because they are not members of the plaintiff class." So, people who are receiving services, or who are eligible to receive services by reason other than the Consent Decree, cannot have the services taken away or denied just because they are not class members.

The Consent Decree sets out several basic principles. These principles must guide the comprehensive mental health system in all its operations. The Consent Decree's principles are:

• A quality system requires less reliance on institutionalization, and funds spent on AMHI must be redistributed to the community.
• You cannot tell what a person's personality, abilities, needs, and aspirations are on the basis of a psychiatric label.
• Consumers of mental health services are entitled to respect.
• Personal needs change or vary in intensity over time according to the individual's circumstances. Community mental health services must be flexible in order to meet changing needs so that, to the extent possible, class members will not have to change their living arrangements when their needs change.
• Hospitalization separates people from their friends and family. Hospitalization at AMHI uproots many people from their home communities. The mental health system must be oriented toward helping people to avoid hospitalization. If hospitalization is needed, it should occur as close to home as possible, for as short a time as possible. All necessary community supports must be provided upon discharge.
• Services must be provided in the least restrictive available setting and by the least restrictive means appropriate to each individual's needs.
• The system must be designed and delivered on the basis of identified individual needs. The class member should not be forced to fit the service, rather the service should be made to fit the class member.
• Class members have the same rights as do all other citizens, including the right to live in the community of their choice without limitations on their independence, except those limitations to which all citizens are subject.
• Class members have the right to refuse all or some of the services available to them under the Consent Decree, subject to the exceptions noted below. Class members cannot be denied the services they want solely because they refuse services they don't want. The only exceptions to a person's right to refuse treatment services, resulting from other laws, are the following:
  • involuntary hospitalization when the class member meets the legal standard for involuntary admission, provided the proper admission procedures are followed;
  • services ordered by a court as a result of criminal proceedings;
  • services approved by a guardian, if the guardian has given informed consent and has the legal authority to approve the service;
  • certain emergency services, when provided in a residential or hospital setting in an emergency situation, but only in accordance with procedures required by regulations;
  • certain services for persons who lack capacity to consent, when provided in a residential or hospital setting, but only in accordance with procedures required by regulations.

In addition to the goal of having the mental health system be one that honors the principles listed above, the Consent Decree has the following overall general goals:

• to insure that class members are the driving forces in their own treatment planning and programs.

This goal is addressed principally by requiring the Department to develop Individualized Support Plans for all class members who want one. The plan itself is one that the class member actively develops. It is described more fully in section 5, below.

• to improve the quality, comprehensiveness, and availability of mental health services.

The services required to be developed are described in section 6 below. Additionally, the Departments are required to establish quality standards for these services and to monitor the delivery of the services to assure that the quality standards are met.

• to maximize the use of "non-mental health system" services whenever possible.

To maximize the use of "non-mental health system services" means that the Department may not use or develop segregated mental health services when the services otherwise exist in the general community.

As consumers of mental health services, class members too often do not have the same access that other people have to non-mental health resources and services. The doctors, counselors, educational institutions, dentists, recreational facilities and housing that others use could meet the needs of class members if they were accessible.

Under the Consent Decree, the Departments are required to assist in making the general, non-segregated resources and services available to class members through advocacy, education and support.

• to reduce the use of AMHI.

There were 295 patients at AMHI when the Consent Decree was signed on August 2, 1990. The agreement requires the Department to reduce this census to 70, not counting individuals who are admitted to the forensic unit through the criminal justice system or from jails or prisons.

The Consent Decree requires the Department to establish admission criteria for AMHI so that only persons in need of acute psychiatric care are admitted. AMHI used to admit individuals at times who needed services because of conditions other than acute mental illness. The Consent Decree requires that the Departments refer these individuals, (persons with traumatic brain injuries, mental retardation, Alzheimer's Disease, for example) to other appropriate resources.

The Department is also required to develop community hospitalization alternatives so that individuals who do have the need for acute hospital care can receive it near their homes. Other community resources that the Departments are required to develop - housing, crisis intervention, residential support services and treatment options - should assist class members in avoiding hospitalization.

When discharging class members from AMHI, the Department is required to develop detailed discharge plans AND to assure that the services are available to the individuals when leaving the hospital. The discharge plans for class members who have been at AMHI longer than 150 days are subject to the court master's review.

The Consent Decree recognizes that individuals who have been institutionalized at AMHI for a long period of time and individuals who have other health conditions may require highly specialized support services in the community. A section of the Consent Decree requires the defendants to develop community services specifically designed to meet the needs of these individuals.

The consent decree does not focus only on AMHI's size. It also requires that the Department improve the quality of AMHI's services and environment. See section 7 below for more discussion of these standards

A. INDIVIDUALIZED SUPPORT PLAN (ISP).

Under the Consent Decree, all class members are entitled to receive an ISP. Class members who refuse an ISP at any particular time can change their minds. If they ask for one later, they still have the right to receive one.

An Individualized Support Plan (ISP) is a written plan setting out an individual's goals and the supports the person needs to meet those goals. One part of it must describe a class member's strengths and the goals should be designed to build on these strengths.

Things the class member needs to meet the goals are then considered. The areas of need to be considered are: housing, financial, social, recreational, transportation, vocational, educational, general health, dental, emotional, psychiatric and/or psychological, as well as potential need for crisis intervention and resolution services.

Support services required to meet the individual's needs must be described in the ISP. They must be the services really needed, not simply ones which may exist. The class member should not be described to fit the service, rather the service should be described to fit the person.

Goals and objectives for each service area must be stated in the ISP. To the maximum extent possible, these goals and objectives must be ones the class member wants to meet and they must be stated in language the class member understands.

The way each service is going to be provided must be stated in the ISP. It must be a way which maximizes the class member's strengths, independence and integration in the community.

An ISP may be developed by a team that includes the class member, the class member's community support worker, and other individuals whom the class member chooses to participate. Individuals who do not want to work in a team setting may choose to develop the plan with their community support worker.

An ISP may be reviewed and revised at any time to consider changes in the class member's life. It must be reviewed at least every 90 days.

After the ISP is written, the class member's community support worker is responsible for locating the identified needed services.

Once services are located, the agencies or persons providing the services must be named in the ISP. The community support worker is responsible for monitoring the services to assure that they are delivered and that they continue to be appropriate and effective.

Providers of services who are funded or licensed by the state must sign service agreements. Once a service agreement is signed, the provider cannot terminate or interrupt the services against the class member's will except by following a special process. That process includes requesting advance approval from the Department of Behavioral and Developmental Services, and, if approval is given, giving 30 days advance written notice to the class member and assisting him or her in locating replacement services.

If an identified service cannot be located, the community support worker must note it as an "unmet service need" on the ISP and work with the class member to develop an interim ISP based upon available services which meet, as nearly as possible, the actual needs of the class member.

Information regarding unmet service needs must then be forwarded to the Department of Behavioral and Developmental Services who must use the information in developing new services to meet the individual's unmet needs.

ISP's are developed by community workers. If a class member is hospitalized at AMHI or if his or her admission to a community hospital is funded by the Department of Behavioral and Developmental Services, the hospital treatment and discharge plan must be coordinated with the ISP, provided the class member consents.

In all other instances of psychiatric hospitalization, the hospital treatment and discharge plans must meet the requirements of the regulations entitled the "Rights of Recipients of Mental Health Services".

The communication and cooperation between the hospital personnel and community workers is meant to assure that services will be better designed to meet the individual's needs while in the hospital and to help the individual return to the community with as much support as needed. It is also intended to minimize the disruption caused by hospitalization by permitting the individual to maintain community contacts while in the hospital.

The intent of the ISP is to give class members more opportunity to be involved with their treatment planning and service delivery.

The ISP is also important as the tool for identifying service needs. The Consent Decree requires the Departments to develop new resources based on information from ISP's.

In this way, the ISP will assure that the mental health service system is designed, developed and operated in response to consumers' actual needs as they themselves express those needs.

For class members who refuse an ISP but who still want their needs considered by the Departments when planning services, the Consent Decree requires the Departments to develop an alternative and less formal system for identifying the needs of those class members.

If a class member has a problem with the way an ISP was developed, with its content, or with the way it is being carried out, the class member can file a grievance. The Consent Decree requires that these grievances be handled as emergencies.

The Consent Decree required other revisions to the grievance procedure as well. For more information regarding the grievance procedures see section 9 of this pamphlet.

B. COMMUNITY SUPPORT WORKERS

The Consent Decree defines the role of the Community Support Worker as one who provides personalized support to the class member.

As noted in the section on ISP's, the Community Support Worker has responsibility for assisting in developing an ISP, locating services, and monitoring their delivery.

The Community Support Worker also has the following additional responsibilities:

• Participating at hospital treatment and discharge planning meetings.
• Advocating for access to general non-mental health services and resources.
• Supporting the class member to be an active participant in the development, review and implementation of the ISP.
• Assisting in the resolution of problems.
• Participating in the delivery of crisis intervention and resolution services, and following-up to make sure the crisis is resolved.

The job of the Community Support Worker is meant to be flexible, to allow the class member to receive the amount of assistance needed at any particular time.

The Department of Behavioral an Developmental Services delivers community support worker services through Assertive Community Treatment teams, Intensive Case Managers, Community Support Workers and Case Managers.

At this time, any class member who wants one is supposed to be able to have a CSW assisgned within 3 days of their request, if they are living in the community, and within 2 days if they are in the hospital at the time of the request.

The Consent Decree sets out standards and procedures for operation of AMHI which cover the following areas:

• basic patient rights;
• information provided to patients about their rights;
• treatment necessary to meet patient needs, including individual counseling;
• opportunities for leisure, recreational and rehabilitative activities;
• a healthy, safe and accommodating environment;
• use of psychoactive medications;
• emergency procedures;
• quality health and dental care, including access to community providers;
• use of seclusion, restraints and protective devices;
• a system for reporting and investigating patient abuse, neglect, exploitation, other rights violations, injuries and death;
• staff/patient ratios;
• staff qualifications and evaluations;
• treatment of nursing home patients and adolescents;
• review of patients whose admissions are characterized as voluntary to be sure that the patients understand what that means;
• organization and content of patient charts.

The Consent Decree also requires the Department of Behavioral and Developmental Services to provide specialized training to all AMHI staff including training by consumers on their perspectives and values.

The Consent Decree also includes the following:

• The Departments are required to develop public education programs designed to educate the public regarding mental illness and the myths and stigma associated with it.
• Standards, procedures, training and caseload requirements are established for Department of Human Services guardianship and adult protective workers who work with class members.
• The Department of Behavioral and Developmental Services is required to develop a centralized system for planning, budgeting and developing resources. The system must use the information from ISP's which report real needs of current consumers of mental health services.
• The Departments are required to set up systems for monitoring the quality of services.
• The Departments must enforce licensing standards and contract requirements to assure they are in line with the Consent Decree.

The "Rights of Recipients of Mental Health Services" and the Rights of Recipients of Mental Health Services who are Children in Need of Treatment" are regulations of the Department of Behavioral and Developmental Services. These regulations apply to all facilities licensed, contracted or funded by the Department and to all in-patient psychiatric facilities.

The Department revised these regulations to incorporate the terms of the Consent Decree.

B. GRIEVANCES

The rights regulations were first written in 1984. The regulations have always had a procedure for grievances. The Consent Decree required changes in the procedure.

The regulations now provide for the following:

• Consumers may complain about violations of any rights, not just about rights covered by the regulations.
• Grievances may be filed to complain about violations of rights protected by the Consent Decree.
• Final decisions on grievances can still be appealed to Superior Court.
• The types of rights' violations consumers may complain include any actions, policies or procedures of any mental health agency or facility covered by the regulations.
• There are three level of appeal for a grievance.
• Grievances regarding state mental health institutes are appealed directly from the superintendent to the Commissioner of the Department of Retardation. Grievances used to get appealed to the Director of the Bureau of Mental Health, even though the Director has no authority over AMHI and BMHI.
• Complaints about ISP's and hospital treatment and discharge plans must be dealt with just like emergencies.
• An impartial hearing officer must be appointed to hear the grievance at one of the two appeal levels.

C. COMPLAINTS

The grievance process is for consumers to use, either directly, through a guardian or with the assistance of a representative of their choice. The complaint procedure is for use by persons or agencies who are responsible for the following:

• Investigating client rights' violations,
• Delivering mental health services, or
• Monitoring mental health services.

Sometimes people in these positions know or have reason to believe that practices, policies or procedures are in violation of consumers' rights. If there is no consumer in a position to file a grievance, the violation can go uncorrected. The complaint procedure is meant to cover these types of situations.

Complaints must be investigated. There are two levels of appeals, and results of the investigations must be reported to the person making the complaint.

This pamphlet is only meant to give you some introductory information about the Consent Decree. If you would like to receive a copy of the consent decree, please contact the Disability Rights Center.