NAMI NC/Technical Assistance Bulletin #4

NAMI NC -System Reform- Technical Assistance Bulletin #4:
Clients' Rights

This is the fourth in a series of technical assistance bulletins to help NAMI North Carolina affiliate members as they participate in the local planning process for mental health reform. This bulletin focuses on the client rights portion of the local business plan. It provides an update on efforts to establish a client rights system in North Carolina as well as essential elements of a strong client rights system for which you can advocate as your community develops its local business plan.

Clients’ rights have been described as the key element of accountability for the mental health system and the linchpin for the success of reform. Despite its importance, there is often confusion about what exactly constitutes "client rights." Many have expressed concerns that currently both the list of rights that are protected and the client rights system are not adequate. They believe that changes are necessary to establish additional rights, to strengthen the system, to assure some level of standardization across the state, and to improve accountability.

Many of the changes that need to occur to address those concerns must take place at the state level. The state needs to revisit what should be considered rights and to define who serves on client rights committees, training requirements for committee members, the role and authority of committees, what rights processes should look like, and how state and local rights activities coordinate. Efforts to address all of these issues have begun. Currently, a state level committee comprised of family members, consumers, Division staff, legal consultants and area program representatives are meeting but decisions have not been made. For the most part, LMEs will be responsible for implementing state decisions when they are made and for setting up processes to support client rights activities.

One way to look at client rights is to see it composed of three major components:

1) rights that are protected by laws and rules 2) processes used to ensure that rights are protected, and 3) advocacy, including widely distributing easily understood information about rights.

Laws and Rules

Federal and state laws and rules define the rights and protections afforded to individuals with mental illness. They include issues such as confidentiality, treatment rights, civil rights, and protection from abuse and neglect. State laws and rules also define who has the authority and responsibility to monitor compliance. Many concerns have been raised about review procedures, lack of information about procedures, reporting requirements, oversight authority, and the membership and operation of client rights committees.

What is happening at the state level: The state committee has reviewed current state rules and compared them with best practice. A list of suggested rule changes is being developed with the intent of clarifying responsibility and authority, strengthening local client rights committees, and clarifying how these committees relate to the Division and to other state agencies.

What you can do at the local level: If you have ideas on how the laws or rules could be changed or if you would like to get more information on the suggested changes please contact Stuart Berde at (919) 420-7927 or Stuart.Berde@ncmail.net.

Rights Processes

State laws and rules give local client rights committees (now called Human Rights Committees) the responsibility to monitor and review services for compliance with clients rights. These committees primarily review incident reports, but they also have the authority to review general complaints about quality of care. How well client rights committees operate across the state varies widely and many concerns have been raised about the role and authority of these committees. For example, the current rules state that people who are not covered by Medicaid cannot take a normal complaint beyond the area authority board. Most states allow a state review or another type of external review.

What is happening at the state level: The state plan committee’s first job is to develop a unified state and local grievance and appeal system. The role of client rights committees in the new state system will also be reviewed. As area authorities move toward becoming administrators rather than providers of services, the effectiveness and role of the current committee structure is being questioned. The authority of the rights committee to monitor service organizations contracting with the LME needs to be addressed.

What you can do at the local level: Talk to the members of your current client rights committee. Ask them what changes they would like to see.

Issues to consider and advocate for:

Rights Committees should not only review incident and grievance reports. Committees should receive information from multiple sources within the organization, especially the monitoring and quality improvement sections so that they can get a broader perspective. The focus for the rights committee and the LME should be on problem avoidance and not simply responding to problems. The rights committee should report its findings and recommendations back into the LME quality improvement and monitoring process. The committee also should monitor changes made to address problems after they have been identified.
The Rights Committee should be empowered to call for an investigation and receive a report of results
Rights Committees should have the ability to report concerns directly to the state office of Advocacy and Consumer Services
Rights Committees should have identified staff and have input into hiring that staff
Rights Committees should provide reports and make recommendations to the area director, board, and Consumer/family advisory committee

Advocacy

Advocacy means both informing the public about rights and the protection and promotion of rights. It may involve "trouble-shooting", mediation, dispute resolution, and in some cases, legal action. Advocacy requires wide distribution of easily understood public information and education about rights and the rights process. People must be aware of their rights. At the present time, the responsibility for advocacy is fragmented, with advocacy activities occurring through the Governor’s Advocacy Council for Persons with Disabilities (GACPD), the Department of Social Services (DSS), various Ombudsman programs within the Department of Health and Human Services, and through one branch of the Division of MH/DD/SA. This fragmentation has led to a lot of criticism of advocacy efforts and organized advocacy at the local level has been limited.

What is happening at the state level: The reform legislation called for the establishment of an MH/DD/SA ombudsman program. Work is continuing on what this program would look like, how it would operate at both a state and local level, and how such a program would be funded. A final report is due in the fall. The reorganization of the Division of MH/DD/SA establishes a new section called Advocacy and Customer Services. Within this section, advocacy is associated directly with rights protections, while customer service is associated with helpline, troubleshooting, or functions to assist families and consumers. The chief of this section will be a primary consumer or family member and will be considered the state consumer advocate. He/she will report to the Director of the Division of MH/DD/SAS and to the Secretary of DHHS. This section is responsible for state facility and community rights. While this is a major step for North Carolina, a lot of work remains.

What you can do at the local level:

Local programs should strongly consider the establishment of an office or section of advocacy and customer services, paralleling what the state has done. This office would be responsible for comprehensive education and orientation materials and activities so people know their rights and understand the appeals/grievance process. This office also can take on a trouble-shooting and dispute resolution role and offer information on other advocacy resources if the consumer wants/needs assistance external to the LME.

In Michigan, local programs have a Customer Services Operation. It provides many functions, including:

Phone access throughout normal business hours
Staff who have up-to-date knowledge regarding benefits, the provider network, policies/procedures regarding access, service authorization, grievance/appeal procedures, and are skilled in customer relations
Receives improvement suggestions from consumers/families and routs them in a timely manner to the appropriate part of the organization
Integrates individuals and family members into services operations including:

orienting new individuals and their families
creating special project work groups and councils
community awareness outreach initiatives
providing or facilitating arrangements for advocacy when requested, including navigation of the services system
mentoring
developing informational material
customer satisfaction inquiries

Bottom Line:

Client Rights Committees should be empowered not only to review, but to call for an investigation of a situation(s), receive a timely report, and monitor quality improvement activities
Client Rights Committees need access to information and reports from multiple departments of the organization and should feed information and recommendations back into the organization to improve services and rights protections
The grievance/appeals and rights processes need to be clearly defined and easily understood information needs to be widely accessible. While the state will define the process, the LME will be responsible for providing consumers/families with clear information about these processes as well as information on how to seek assistance external to the organization, for example, how to contact the Division or the Governor’s Advocacy Council.
Someone or some office within the LME needs to be responsible for client rights and advocacy activities such as education, trouble-shooting, dispute resolution, assisting with complaint and grievance processes, and generally to help consumers/families navigate the system.