Consumer and Family Participation
Why Is Input Important
Models of Involvement
     Consumer/Family Satisfaction Teams
     Consumer/Family Advisory Councils
     Consumer/Family Surveys

National mental health advocates, including NAMI, believe that a strong consumer and family voice is critical in any mental health care system. This includes not only high levels of consumer and family participation in planning, assessment, and management activities, but also that the input of consumers and families is listened to and acted upon in ways that improve the mental health system.

In other words, it is not enough for consumers and families simply to be there. Consumers and families must be allowed to participate and their input must result in changes to the mental health system so that it better meets their needs.

The most effective way to make sure this occurs is to give consumers and families a formal, organized role in the planning, assessment, and management of the system. As North Carolina reforms its mental health system, we all need to advocate for measures to be put into place from the beginning of the new system that will: (1) ensure consumers and families are active participants in the system and (2) establish specific, regular ways their input is listened to and acted upon. These measures will help make consumer and family participation a normal and effective part of the new system. Finally, participation by consumers and families must occur in all parts of the system, so it is critical that we advocate strongly for these measures at both the local and state levels.

Many people have heard about quality improvement (QI) and quality assurance (QA), but have no idea what they mean and are a bit intimidated by the jargon surrounding them. QI/QA really comes down to these key pieces:

1. Organizations should operate through "Plan-Do-Check-Act" cycles in which actions are planned (Plan), done (Do), and evaluated (Check), so that they may be changed and improved (Act) the next time they are performed.
2. These Plan-Do-Check-Act cycles should occur as rapidly and frequently as possible.
3. All of these activities should revolve around the customers of the organization (in the case of mental health, consumers and families), and should rely heavily on their input.

That's it… QI/QA in a nutshell. The reason QI/QA is so important is that it is the most efficient way for an organization to improve. It includes input from the customers of the organization, creates an atmosphere of collaboration and trust, and ensures that all activities in the organization are evaluated and improved. The alternative is an organization that operates without the regular input of those who matter most (the customers) and improves only when bad outcomes occur (such as a lawsuit or the death of a consumer).

Although most participants in mental health systems understand the value of consumer and family input, it is often useful to be able to state some exact benefits of their involvement. The first key reason is that quality in a mental health system cannot be defined, assessed, or improved without input from consumers and families. The mental health system exists to meet their needs, however their needs cannot be understood or acted upon without an active effort to communicate with them. The best way for finding out what someone's needs are and if they are being met is simply to ask them directly.

The second reason to involve consumers and families in system management is to create trust in the system. Mental health services are an integral part of the lives of consumers and families. The impact of these services will be positive only if consumers and families trust the system's administrators and service providers. In other words, the system must be accountable to the consumers and families it serves. This trust and accountability occur in three main ways:

1. Decisions no longer occur behind closed doors. Instead, they are brought out into the open view of consumers and families.
2. Decisions occur with the input of all participants in the mental health system.
3. The system grows and learns because of the information provided by consumers and families. If the QI/QA approach to improving the organization is applied, a "try it-fix it" mentality develops and the system grows and learns quickly.

A third reason to include families and consumers in quality management is that the state, through the local business plan, requires LME’s to have "a process for the meaningful involvement of consumers and families…in the quality management process to meet State Plan Requirements". What follows are some successful models that have been developed to allow for and encourage this meaningful participation.

Several states have developed quality monitoring systems that involve consumers and families. These systems have worked well, and there is growing support for other states to copy what these states have done.

Regardless of the methods used, key elements of successful programs are (1) the administrators managing the mental health system are open, active, and committed to improvement and consumer/family input, (2) consumers and families focus their advocacy and attention on a few key issues at a time, and (3) the methods used to involve consumers and families are organized and managed well logistically.

Consumer/Family Satisfaction Teams (C/FST)

This type of service is new, but has been very successful where used. It differs from traditional consumer/family surveying by being developed and organized primarily by consumers and families. Consumers and families develop the instruments to be delivered, determine what data to collect, and collect the data themselves in two-person teams.

This model was first created and implemented in Pennsylvania in 1990, and now exists in several states, including Ohio (where they are called Consumer Quality Review Teams - CQRT), Georgia (Georgia Evaluation & Satisfaction Teams - GEST), Alabama, Michigan, Washington, Wisconsin, and Massachusetts. In most states, the C/FST program is coordinated and managed by a non-profit organization created specifically to administer the C/FST program. The programs’ main oversight, however, still comes from the state Offices of Mental Health and NAMI organizations.

The key benefit of C/FSTs is that consumers feel more comfortable discussing their mental health services with other consumers than with non-consumers, providing higher response rates to surveys and more reliable and valid data to the mental health system. Successful C/FST efforts play key roles in QI/QA systems by providing frequent consumer data to administrators.

Establishing a C/FST program in North Carolina statewide is our ultimate goal, however this will require a coordinated effort involving consumers, families, advocacy groups, and the Division of MH/DD/SAS. While we will encourage the state to consider implementing a statewide program, you can advocate for your LME to implement a pilot C/FST program in your area, allowing your area to serve as an example for the rest of the state.

Further information on C/FST programs can be found through the following resources:

Ohio:
NAMI Ohio - www.namiohio.org/cqrt.html
Suzanne Robinson, Director of Programs, NAMI Ohio, suzanner@amiohio.org 614-224-2700

NEOCQRT (Northeast Ohio Consumer Quality Review Team) - www.qsan.org
Quality Review Services, Inc. - www.qrsinc.org

Mario DeSantis, CQRT Coordinator, Ohio Department of Mental Health
desantism@mhmail.mh.state.oh.us
614-466-0236

Georgia:
The Georgia Evaluation and Satisfaction Team, Inc. (GEST), www.gestinc.org, 404-943-0011
Virginia Riley, CEO, GEST, Inc., griley@gestinc.org
Constance Bate, CFO, GEST, Inc., cbate@gestinc.org
Larry Fricks, Office of Consumer Relations, Division of Mental Health, Georgia Department of Human Resources
Lfricks@dmh.dhr.state.ga.us ,404-657-2100

Pennsylvania:
Pennsylvania C/FST, cstap@cstap.org 877-203-0760
Mary Kohut, Director, Pennsylvania C/FST - 717-920-0457

Massachusetts:
Massachusetts Consumer Satisfaction Team (MCST)
Jonathan Delman, Director, MCST , JonDelman@aol.com , Jdelman@mass-cst.org ,617-929-4111

Additional resources and comments: The reform plan calls for consumer/family advisory councils (CFACs) to be established at the local and state levels. While local advisory councils are now involved in developing the local business plans, they should have an ongoing role that should include monitoring quality and reviewing implementation of the business plan. These advisory committees should receive information from client rights committees, review QI/QA data, respond to problems, and provide recommendations.

In addition, a position will be created in the Division of Mental Health, Developmental Disabilities, and Substance Abuse Services (MH/DD/SAS) for a State Consumer Advocate that reports directly to the Director of the Division and the Secretary of the Department of Health and Human Services. The State Consumer Advocate will be responsible for coordinating all advocacy efforts and must be a consumer or family member to be eligible for the position.

Consumer/family surveys administered by the state are limited for several reasons. First, they tend to be either too narrow (focusing on single visits) or too broad (focusing on satisfaction with care in general). Second, they tend to be skewed towards the perspective and biases of those administering the surveys. This perspective may limit the usefulness and validity of the data unless consumer and families help design the survey. Third, surveys are difficult to administer due to the difficulty interviewing consumers and the fears consumers have that the survey data will not be confidential. Finally, surveys tend only to reach certain types of consumers. Consumers who have dropped out of the system (due to poor services, dissatisfaction with services, lack of transportation, etc.) are generally missed, as are consumers without access to telephones or adequate transportation. This makes the survey less valid because is only collects data on the most satisfied, available consumers and misses poorly served or disadvantaged consumers.

Survey data is useful, however, in monitoring changes in the mental health system because the same data is tracked year-to-year. The challenge is to collect the right data on all current, former, and potential users of the system.

You should advocate for consumer and family involvement whenever a survey is being developed at the local level. This includes surveys by Local Management Entities and mental health service organizations. Consumer and families must work to ensure that any measure being studied in a survey is important, valid, and useful in creating a consumer-centered mental health system.

We will also continue to monitor the satisfaction survey that is currently administered by the state. This survey has been administered regularly over the past few years, however the state is reviewing whether to continue its use. The survey is being revised and edited to try to improve its usefulness and to make it easier to administer.

A national movement is underway to create a basic set of mental health evaluation measures that would be used in every mental health setting, so that every mental health system in the country can be compared to each other in a consistent fashion. In other words, the hope is that everyone who evaluates mental health systems will begin measuring the exact same things. Surveyors are welcome to collect other data, but they will be expected also to collect the standard, basic data everyone else collects. This project, called Decision Support 2000+, is coordinated by the national Mental Health Statistics Improvement Program (MHSIP - www.mhsip.org). The project is in its early phase, and the final measures have not been decided upon yet. These should be available, however, in the near future. This project is very consumer-centered, and we will work to ensure that North Carolina's mental health system applies the work being done by Decision Support 2000+.

Reform efforts will not be successful without the active involvement of families and consumers. Advocate that the models of involvement presented here be included in your local business plan to make consumers and families effective, regular participants in the management of North Carolina's mental health systems.