(Graphical version of this page)
You are here: OLRS Home
> OLRS Publications
> OLRS Publications Listed by Topic
> Advocacy - A Bridge from Rights to Recovery
| Download the PDF version |
| Advocacy - A Bridge from Rights to Recovery (PDF file) To view and print PDF documents, you need to have Adobe® Reader®, a free software program, installed on your computer. Download Adobe® Reader® |
This report is protected by copyright under United States law and by international copyright laws and treaty provisions. You may copy and distribute the work provided that you use the work for personal, noncommercial use; do not add the work to a collection or use it with any other text, photographs, artwork, etc; do not modify or alter the work in any way or delete or modify any copyright; and do not publish or post all or any part of the work on any Internet site or in or on any other media without obtaining the prior written consent of Ohio Legal Rights Service.
Copyright © 2004 Ohio Legal Rights Service. All rights reserved.
Dear Reader,
In the late 1980's, Congress passed a law that recognized the rights of a person who is receiving services and/or treatment from the public mental health system. Ohio, like most states, recognizes these same rights in its own state statute. And while the Ohio Department of Mental Health established rules to carry out the intent of the law, these rules have not changed since they were first written in 1987. Moreover, the rules have not worked to keep pace with our society's growing understanding and support of mental health rights. It has been Ohio Legal Rights Service's experience that mental health rights are neither commonly respected nor enforced in our state.
To promote understanding and respect for rights, and to assure enforcement of rights, we need advocacy. Good advocacy improves the quality of the mental health service system which in turn promotes its goal - to support recovery from mental illness. And because advocacy typically occurs in response to a current problem, advocacy helps the system stay in tune with the progress of our times.
Over the years, we have learned that Ohioans receiving mental health services need a system that respects and supports advocacy, and particularly, the role of the advocate. We do not yet have this - and we need it. We must construct an advocacy system that is effective and accessible to those who need it. The following report suggests how Ohio can improve the quality and availability of the mental health advocacy system, which includes not only individual and systemic advocacy, but also the support and promotion of self-advocacy.
In these times of diminishing resources, Ohio is struggling with the need to improve quality. Great advocacy can help Ohio give increasing value to the rights Congress first recognized over 15 years ago. Advocacy is the bridge between a person's rights and a person's recovery.
It is time: Ohio's mental health system must itself be the advocate — for its own internal progress, and for those whom it serves.
Best regards,
Carolyn S. Knight
Executive Director
Recovery is "an appropriate and realistic goal for every person diagnosed with a psychiatric disability. . . . That goal will prove to be elusive in any mental health system that does not, in word and in deed, recognize and respect civil and constitutional rights." (quote is from Michael Allen)
An advocate passionately listens, represents, speaks, mediates, educates, with or for others.
Advocacy is the act of supporting and promoting rights and recovery.
The purpose of the study was to improve the quality and the availability of mental health advocacy services for all Ohioans. The intent of this Ohio Legal Rights Service-initiated study was to identify, review, and study exemplary advocacy programs and make recommendations for changes to the Ohio Mental Health Advocacy System. The recommendations were designed to improve the quality and availability of Mental Health Advocacy services for all Ohioans. Recommendations contained in this report were based on information gathered through:
Ohio Legal Rights Service researched advocacy program literature. This review was not limited to mental health advocacy, but focused primarily on advocacy models in the United States. The review revealed advocacy systems in 10 states as possible sources of information:
Ohio Legal Rights Service contacted many of the states' federally mandated Protection and Advocacy agencies to request help to identify specific individuals who were most familiar with mental health advocacy programs in their state. The Protection and Advocacy agencies were helpful in identifying their states' mental health advocacy programs and advocates.
Before contacting the individual advocacy programs and advocates in each state, Ohio Legal Rights Service developed an interview guide to assure that similar information was gathered. The guide included questions about their advocacy structure and funding.
Telephone interviews with the recommended advocacy staff revealed four common themes:
The states reported a limited number of approaches to structuring and funding their individual advocacy systems. Nearly every state indicated funding for mental health advocacy services was state or county based. One state consumer advocacy program received funds through a federal mental health block grant.
Most states structured their mental health advocacy through a combination of state and local advocates and advocacy systems. In some states, the federally funded Protection and Advocacy agency was the only entity providing mental health advocacy services. Other states reported an approach utilizing a network of advocates, including paid and volunteer staff (some of whom were consumers), at state, regional, and local levels.
States reported mental health consumers had access to advocacy services through:
Advocacy systems in the 10 survey states used a variety of titles for their mental health advocates. The advocates' role, however, was consistent — to assure the rights of individuals receiving mental health services. Some of the titles used to describe advocates, advocacy programs or advocacy systems were:
These following two quotes reflect the range of observations reported by the states regarding the degree of independence mental health advocates experience.
"A lot of people look at them as part of the operation."
"Advocates are totally independent from the system"
Some states reported affirmative efforts to assure advocate independence. They structured their table of organization so oversight was administered by an entity other than the provider of mental health services (e.g., the Governor's Office, the state Department of Mental Health, the Protection and Advocacy agency). Other states reported they contracted outside the mental health system for advocacy services with the intent to eliminate the inherent conflict of interest that often exists between advocate and provider. However, one source noted that in his experience "advocates who are state employees of the Mental Health Department and have civil service protections have more security and therefore more independence in their jobs."
There was a strong commitment from the states and advocacy programs to involve consumers as advocates. One state reported that most of their advocates were consumers and another state source recommended advocate positions be filled only by consumers. A third state's mental health advocacy system revolved around a peer advocacy model.
Some of the surveyed states reported specific training for advocates. These trainings involved a comprehensive approach to advocacy and ranged from 5 to 10 days. States awarded certificates and/or certification for those who completed the advocacy training. One state reported they conducted introductory and advanced training for advocates.
States reported training consumers, family members, and others to create grassroots advocacy. Training assisted these grassroots advocates to organize, identify, and develop mental health advocacy issues.
Information obtained from the states revealed common advocacy themes supporting paid, independent, trained, consumer advocates employed in mental health advocacy systems at all levels.
In an effort to learn about local advocacy systems and services in Ohio, Ohio Legal Rights Service developed a 14-question survey tool. To assure a high rate of return, the survey consisted of:
In late summer of 2003, the survey was disseminated throughout Ohio to:
Follow-up telephone calls or second mailings were made to non-respondents to encourage them to complete and return the survey. Fifty-five percent (128 of the 232 sent) of the surveys were returned. The returned surveys reflected a wide geographic distribution throughout all 88 counties of Ohio. The three subgroups — boards, providers and consumer advocates — were sufficiently represented within the final survey sample.
| Type of Organization | Number of Respondents | Percentage of Respondents |
|---|---|---|
| Boards | 42 | 45 percent |
| Providers | 58 | 33 percent |
| Consumer Groups | 28 | 22 percent |
The initial questions on the survey asked the Client Rights Officers of mental health boards and contract provider agencies to identify:
The 42 board respondents and the 58 provider respondents all reported they had at least one Client Rights Officer on staff. One board reported they had two Client Rights Officers.
Findings: Board and provider Client Rights Officer staffing levels are in compliance with Ohio Department of Mental Health regulation.
| Type of Organization | Full-time | Part-time over 20 percent | Part-time 20 percent or less |
|---|---|---|---|
| Boards (n = 42) | 38 percent | 10 percent | 52 percent |
| Providers (n = 58) | 2 percent | 14 percent | 84 percent |
Findings: The majority of provider and board Client Rights Officers are employed to provide advocacy services at 20 percent or less of a full-time position.
Nearly all (95 percent) board Client Rights Officer and (97 percent) provider Client Rights Officer respondents reported other job duties. A significant number of Client Rights Officers reported four, five and six other areas of responsibility, in addition to their Client Rights Officer function (see the following tables 3 and 4). Five board Client Rights Officers and four provider Client Rights Officers reported they serve as Executive Director of their board or agency.
| Job Duties | Percentage of Board Respondents |
|---|---|
| Quality Assurance | 36 percent |
| Associate Director | 31 percent |
| Clinical Services | 29 percent |
| Corporate Compliance | 17 percent |
| Executive Director | 12 percent |
| Certification Officer | 10 percent |
| Risk Manager | 10 percent |
| HIPAA Privacy Officer | 7 percent |
| Family Advocate | 5 percent |
| Other (See list of other duties) | 64 percent |
| Job Duties | Percentage of Provider Respondents |
|---|---|
| Quality Assurance | 29 percent |
| Corporate Compliance | 22 percent |
| Risk Manager | 22 percent |
| Certification Officer | 17 percent |
| Intake/Assessment | 14 percent |
| Clinical Services | 14 percent |
| Executive Director | 7 percent |
| Associate Director | 5 percent |
| Director of Nursing | 2 percent |
| Other (See list of other duties) | 55 percent |
Board and provider respondents also specified these other job duties:
Findings: Many of these other job responsibilities are in direct conflict with board and provider Client Rights Officer responsibilities.
A majority (74 percent) of board respondents and (57 percent) of provider respondents reported their Client Rights Officer positions are funded by general board funds. Both the board and provider respondents reported dual or multiple funding sources for Client Rights Officer positions, most often general board funds and levy funds combined. One-third of the provider Client Rights Officers reported funding from Medicaid revenues while other sources included third party fees, charities, general agency budget and administrative overhead, and ODMH state funds.
Findings: Many providers and some boards do not allocate funds specifically for a Client Rights Officer position. Client Rights Officer duties are instead added to a position that is specifically funded (for example, executive director, clinical services director, nursing director, etc.).
The second grouping of questions on the survey asked the boards, providers, and consumer groups to identify:
A number of board (26 percent) and provider (47 percent) Client Rights Officers and consumer group (18 percent) respondents reported they did not receive any request for advocacy services during the month of July in 2003. The most requests for advocacy services across the three respondent groups were:
| Type of Organization | Zero Requests | 1 to 10 requests | 11 to 20 requests | 21 to 30 requests | 31 to 40 requests | Over 40 requests |
|---|---|---|---|---|---|---|
| Boards | 26 percent | 50 percent | 12 percent | 5 percent | 5 percent | 2 percent |
| Providers | 47 percent | 28 percent | 14 percent | 2 percent | 0 percent | 10 percent |
| Consumer Groups | 18 percent | 25 percent | 25 percent | 4 percent | 4 percent | 25 percent |
Across all groups, more than one-third reported they received no requests for services during July 2003. An analysis of results showed:
Findings: Across all respondent groups, consumer groups reported significantly more requests for advocacy services.
A small percentage of board, provider and consumer group respondents reported they did assist consumers with filing a grievance during July 2003.
| Type of Organization | Zero grievances | 1 to 5 grievances | 6 to 10 grievances | Over 10 grievances |
|---|---|---|---|---|
| Boards | 71 percent | 24 percent | 5 percent | 0 percent |
| Providers | 71 percent | 22 percent | 5 percent | 2 percent |
| Consumer Groups | 86 percent | 11 percent | 4 percent | 0 percent |
Findings: Nearly three-quarters of the survey respondents reported they did not assist in filing any grievances during July 2003.
The survey asked the respondents to indicate if they assess consumer satisfaction. Respondents were required to enter Yes or No on the survey form.
Findings: Consumer satisfaction is not assessed.
The survey asked respondents to report their perception of how consumers would rate advocacy services, on a scale of one (worst) to ten (best). Table 7 illustrates the average satisfaction level as reported by the 3 respondent groups.
| Type of Organization | Average of Respondents' Ratings | Median of Respondents' Ratings |
|---|---|---|
| Boards | 7.5 | 8 |
| Providers | 7.3 | 8 |
| Consumer Groups | 6.8 | 7 |
| Combined | 7.3 | 7 |
Findings: Although very few of the respondents reported they conducted consumer satisfaction assessments, they uniformly felt consumers were generally satisfied with their advocacy services.
The third grouping of questions required the respondent to use check marks on the survey to identify
Survey respondents were provided a check list with four options listed to identify ways they interact with other advocates. The four options were:
All board respondents, except one, reported interaction with their provider counterparts. 88 percent reported they collaborated to resolve issues, 74 percent made referrals to or received referrals from providers, 29 percent offered trainings and 14 percent checked the other category. The board Client Rights Officers included the following activities in the other category:
The survey also asked how frequently board Client Rights Officers collaborated with provider Client Rights Officers. Responses ranged from every case to several times yearly, as needed, and not often.
Provider respondents were given the same interaction options as the board Client Rights Officers. Seventy-nine percent of the provider Client Rights Officers reported they collaborated to resolve grievances or complaints as their primary means of interacting with their board counterparts. Nearly all provider respondents (55 of 58) reported interaction with the board Client Rights Officers. Provider Client Rights Officers reported they interact with other Client Rights Officers ranging from rarely to two times monthly.
Other methods of interaction identified by provider Client Rights Officers were:
Most consumer group respondents reported interaction with their board and provider counterparts. Referrals (50 percent of respondents) and collaboration to resolve grievances or complaints (43 percent of the respondents) were the most frequently checked options for the consumer group respondents. They reported the frequency of their interactions with board and provider Client Rights Officers ranged from 2 or 3 times per year, 3 or 6 times per year, as needed, and frequently.
Consumer group respondents reported other ways they interact with Client Rights Officers:
Findings: Board and provider respondents reported high rates of collaborative interaction with each other. Consumer group respondents reported interactions with board and provider advocates were most often focused on complaints and grievance resolution.
The survey listed 5 options for respondents to report how consumers learn about advocacy services. The respondents could mark more than one option.
Over 90 percent of board and provider Client Rights Officers indicated referrals were the primary means for consumers to learn about them and their advocacy services. Consumer group respondents reported "word of mouth" as the primary way consumers learn about their advocacy services.
| Type of Organization | Referrals | Word of Mouth | Publications | Signs | Other |
|---|---|---|---|---|---|
| Boards | 91 percent | 86 percent | 79 percent | 52 percent | 29 percent |
| Providers | 92 percent | 64 percent | 86 percent | 78 percent | 24 percent |
| Consumer Groups | 64 percent | 79 percent | 57 percent | 46 percent | 50 percent |
Other ways consumers learn about advocacy services included the following. Board Client Rights Officers responses included:
Provider Client Rights Officers responses included:
Consumer Group responses included:
Findings: All respondent groups reported that consumers learn about advocacy services through a variety of means.
The last grouping of questions asked the respondent to identify:
A review of board and provider Client Rights Officer responses revealed a common theme reflecting the strengths of their advocacy systems. The prominent theme was that the board and provider Client Rights Officers felt they were consumer oriented. The words most frequently used by boards and provider Client Rights Officers to demonstrate their consumer-oriented focus were:
Consumer group respondents reported the strengths in their advocacy system revolved around an increasing opportunity to provide education and peer support to other consumers. Consumer group respondents noted an increased level of support from boards, providers and family groups. Consumer group respondents reported strengths as:
Findings: Consumer organizations and board and provider Client Rights Officers agreed that a recovery focus was a strength in their respective advocacy systems.
Below is a summary of the most frequently cited weaknesses by subgroup respondents.
Board respondents most frequently cited resources, standards, communication and consumer training as local weaknesses.
Provider respondents most frequently cited communication, resources, attitudes and staff training as local weaknesses.
Consumer group respondents most frequently cited resources, attitudes, communication and consumer training as local weaknesses.
Findings: Board and provider Client Rights Officers and consumer group respondents all identified a lack of resources and inadequate communication as weaknesses in their local advocacy systems.
Survey respondents were asked to identify 3 changes they would implement to improve their local advocacy system. The most frequently recommended changes to improve their system were:
Board respondents most frequently cited consumer training and staff training as areas to improve local advocacy systems. More than half of board respondents identified training for staff and consumers as an area to improve their local advocacy services.
Board Client Rights Officers recommended:
Provider respondents most frequently cited communication, staff training and resources as areas to improve local advocacy systems. Slightly less than half of provider respondents identified communication among staff and clients as areas to improve their local advocacy services.
Provider Client Rights Officers recommended:
Consumer group respondents most frequently cited communication, staff training and resources as areas to improve local advocacy systems. Consumer groups reported as equally important:
Findings: All three respondent groups cited a need for training to improve local advocacy systems.
The most frequently cited changes needed to improve the state system by both the board and provider Client Rights Officers were:
Staff training - Client Rights Officers recommended:
Communication - Client Rights Officers recommended:
Standards - Client Rights Officers recommended:
Consumer group respondents most often identified the need to increase resources and to improve communication.
Resources - Consumer groups recommended:
Communication - Consumer groups recommended:
Based on an analysis of literature and review of survey findings, Ohio Legal Rights Service recommends the following measures to improve the efficacy of mental health advocacy services in Ohio.
The following quote is from "Making Change: A Place to Start" of the British Columbia, Ministry for Children and Families.
"Advocacy is the act of speaking in support of human concerns or needs. When people have their own voice, advocacy means making sure they are heard; when they have difficulty in speaking, it means providing help; where they have no voice, it means speaking for them."
Ohio Legal Rights Service envisions a society in which people with disabilities enjoy the same rights and opportunities as all people. Everyone is entitled to make decisions about where, how and with whom they will live and work as full and equal members of their communities.
Ohio Legal Rights Service's mission is to protect and advocate for the human, civil and legal rights of people with disabilities. Ohio Legal Rights Service accomplishes this mission by providing information, referral and educational services, individual case advocacy, policy analysis, legal representation and systems change.
Ohio Legal Rights Service does not discriminate in provision of service or employment because of race, color, religion, sex, sexual orientation, national origin, military service, disability, or age.
Ohio Legal Rights Service prepared this publication with funding from the Ohio Department of Mental Health through a grant from the Center for Mental Health Services of the Substance Abuse and Mental Health Services Administration of the United States Department of Health and Human Services and through the Protection and Advocacy for Individuals with Mental Illness (PAIMI) Act of 1986 also administered by the Center for Mental Health Services.
Ohio Legal Rights Service
50 West Broad Street, Suite 1400
Columbus, Ohio 43215-5923
614-466-7264 local or 800-282-9181 in Ohio
614-728-2553 TTY or 800-858-3542 TTY in Ohio
Web site: http://olrs.ohio.gov