MENTAL HEALTH CONSUMER ORGANIZATIONS A National Picture of their Characteristics and Services and Supports, and Policy I

1. 1 MENTAL HEALTH CONSUMER ORGANIZATIONSA National Picture of their Characteristics and Services and Supports, andPolicy Implications of the Findings JOINT NATIONAL CONFERENCE JUNE 1, 2006 MAYFLOWER HOTEL, WASHINGTON, DC

2. 2 PRESENTATION OVERVIEW Background Purpose Methods Results Implications Questions? Good afternoon. Today I’ll be sharing with you some results from a comprehensive national survey on the mental health self help sector, conducted by the Center for Mental Health Services. This survey was conducted in 2002, predating the 2003 report of the president's new freedom commission report, before any of us heard about mental health transformation. Fortuitously, data from the survey now provide us with a baseline to monitor trends in the movement toward consumer and family driven care. First, I will provide you with a little background about the survey which included three types of mental health self-help “organizations” --mental health mutual support groups, self-help organizations, and consumer organizations. Then I will walk you through the focus of today’s presentation which is consumer organizations. By the end of the presentation, I hope to have demonstrated to you, the incredible potential of consumer organizations to contribute toward the achievement of many of the goals of mental health transformation. Then, if there is time, I have a few questions for you, and perhaps you will have a few for me.Good afternoon. Today I’ll be sharing with you some results from a comprehensive national survey on the mental health self help sector, conducted by the Center for Mental Health Services. This survey was conducted in 2002, predating the 2003 report of the president's new freedom commission report, before any of us heard about mental health transformation. Fortuitously, data from the survey now provide us with a baseline to monitor trends in the movement toward consumer and family driven care. First, I will provide you with a little background about the survey which included three types of mental health self-help “organizations” --mental health mutual support groups, self-help organizations, and consumer organizations. Then I will walk you through the focus of today’s presentation which is consumer organizations. By the end of the presentation, I hope to have demonstrated to you, the incredible potential of consumer organizations to contribute toward the achievement of many of the goals of mental health transformation. Then, if there is time, I have a few questions for you, and perhaps you will have a few for me.

3. 3 BACKGROUND OF THE FULL CMHS SURVEY Federal/CMHS data collection activities Recognition of importance of mental health self-help sector Consumers and families Traditional mental health providers New Freedom Commission As background--, SINCE THE 1840’s, the Federal government has been collecting data on mental health services availability in the traditional mental health sector – including State and county mental hospitals, general hospital psychiatric units, community mental health organization. Over time it became obvious to us that many people receive mental health services AND SUPPOTS in a wide variety of settings, not limited to the traditional mental health sector and that we had to incorporate these other settings into national data reporting. Mental health self-help groups have served a crucial role in the recovery of people with mental health problems for centuries and rapidly took off in the 1960s. Many of these groups merged and consumer organizations were the result. Judi Chamberlin raised the importance of the mental health self help sector to an advisory group of our survey activities in the early 1990s. And today, the role of self-help in recovery is undisputed, even by traditional mental health providers. Where once only tension existed between traditional providers and the self-help community, currently, each is more likely to be seen as an adjunct or complement to the other rather than a substitute for the other. The New Freedom commission very clearly articulated its recognition of the central role of consumer and family driven services and support. Consumer organizations, and other self-help entities, have now arguably made it into the mainstream. The purpose of the CMHS survey then NEXTSLIDEAs background--, SINCE THE 1840’s, the Federal government has been collecting data on mental health services availability in the traditional mental health sector – including State and county mental hospitals, general hospital psychiatric units, community mental health organization. Over time it became obvious to us that many people receive mental health services AND SUPPOTS in a wide variety of settings, not limited to the traditional mental health sector and that we had to incorporate these other settings into national data reporting. Mental health self-help groups have served a crucial role in the recovery of people with mental health problems for centuries and rapidly took off in the 1960s. Many of these groups merged and consumer organizations were the result. Judi Chamberlin raised the importance of the mental health self help sector to an advisory group of our survey activities in the early 1990s. And today, the role of self-help in recovery is undisputed, even by traditional mental health providers. Where once only tension existed between traditional providers and the self-help community, currently, each is more likely to be seen as an adjunct or complement to the other rather than a substitute for the other. The New Freedom commission very clearly articulated its recognition of the central role of consumer and family driven services and support. Consumer organizations, and other self-help entities, have now arguably made it into the mainstream. The purpose of the CMHS survey then NEXTSLIDE

4. 4 PURPOSE OF THE FULL CMHS SURVEY To provide the first national estimates of the number, use, and characteristics of groups and organizations making up the mental health self-help sector -- mutual support groups, self-help organizations, and consumer organizations (sometimes referred to as consumer operated services.) The CMHS Survey, then, was designed ….. READ SLIDE!!!!The CMHS Survey, then, was designed ….. READ SLIDE!!!!

5. 5 OVERARCHING VALUE IN ALL SURVEYS To include consumers and families throughout each phase of the survey – conceptualization, implementation and analysis – as PAID reviewers, contractors, subcontractors, panel members, trainers We began working ON THIS SURVEY in 1993 and, as in all of our survey, moved forward embracing the overarch arching value…. READ SLIDE. We began working ON THIS SURVEY in 1993 and, as in all of our survey, moved forward embracing the overarch arching value…. READ SLIDE.

6. 6 CONSULTANTS/CONTRACTORS TO THE FULL SURVEY Larry Ackerman Ed Knight Larry Thompson Laurie Ahern Ed Madara Laura Van Tosh Frank Armstead Spero Manson Marie Verna Larry Belcher Ric Marshall Howie Vogel Frank Burgmann Jacqui McKinney Paul Weaver Jean Campbell Greg Meissen Jacquie Williams Judi Chamberlin Ting Mintz Judith Cook Carole Mowbray Contractors Jeanne Dumont Trina Osher TNS, Horsham, PA Zahira DuVall Tom Powell National Mental Larry Fricks Julian Rappaport Health Hikmah Gardiner Joseph Rogers Consumers’ Keith Humphreys Maggie Scheie-Lurie Self-help Caroline Kaufmann Steven Segal Clearinghouse Ronald Kessler Jennifer Shifrin Jean Campbell This NEXT SLIDE PROVIDES the list of the paid consultants and contractors to the survey. YOU CAN SEE WHY WORK THAT WAS STARTED IN 1993 TOOK SUCH A LONG TIME TO IMPLEMENT!!! The next several slide give you information about the methods used to conduct the survey. This NEXT SLIDE PROVIDES the list of the paid consultants and contractors to the survey. YOU CAN SEE WHY WORK THAT WAS STARTED IN 1993 TOOK SUCH A LONG TIME TO IMPLEMENT!!! The next several slide give you information about the methods used to conduct the survey.

7. 7 METHODS USED IN FULL SURVEY Located all mental health self-help groups, organizations, and services in same 172 counties in 34 states used in the National Comorbidity survey (NCS) Telephoned each entity, and using standardized screening instrument, determined eligibility for survey Sent letter to each eligible entity with toll-free telephone number so entity could call in when convenient for them to conduct standardized telephone interview READ SLIDEREAD SLIDE

8. 8 METHODS USED IN FULL SURVEY Telephone interviews (CATI) conducted June-September 2002 Applied non-response weight to eligible completed interviews, calculated by region and type, to produce estimated totals. Sampled counties were then combined into geographic clusters (PSUs) and weighted to represent the entire US using stage one weights originally develop for the NCS COMPUTER ASSISTED TELEPHONE INTERVIEWINGCOMPUTER ASSISTED TELEPHONE INTERVIEWING

9. 9 METHODS USED IN FULL SURVEY Substance abuse and use without mental health “Life crises” – bereavement, transitions, victimization, family problems Addictions Anger management Developmental disabilities Alzheimer’s disease Lodges and clubhouses ONCE WE DETERMINED how we were going to find the groups, WE HAD TO DEFINE THE UNVERSE OF ENTITIES TO INCLUDE and which to exclude. Of course, decisions about this were based, among other things, on the amount of resources we had to devote to the survey. These were very tough decisions, and, if you are doing research in this arena, you may want to include some of the entities we didn’t.ONCE WE DETERMINED how we were going to find the groups, WE HAD TO DEFINE THE UNVERSE OF ENTITIES TO INCLUDE and which to exclude. Of course, decisions about this were based, among other things, on the amount of resources we had to devote to the survey. These were very tough decisions, and, if you are doing research in this arena, you may want to include some of the entities we didn’t.

10. 10 TODAY’S PRESENTATION LOOKING AT ONLY ONE OF THE THREE TYPES OF ENTITIES IN FULL SURVEY: CONSUMER ORGANIZATIONS (NOT LOOKING AT MUTUAL SUPPORT GROUPS OR SELF-HELP ORGANIZATIONS)

11. 11 Why look at consumer organizations? The formal recognition that consumer organizations provide essential services and supports for mental health consumers is evidenced throughout the 2003 final report from the President’s New Freedom Commission on Mental Health. READ SLIDEREAD SLIDE

12. 12 DEFINITION A consumer organization is: an organization run by consumers for the purpose of providing services to other consumers… where decisions about how the money is spent are made by consumers… And, if a board of directors is making decisions, that board is composed of more than 50% consumers We have a defined consumer organization as follows….We have a defined consumer organization as follows….

13. 13 NUMBER OF CONSUMER ORGANIZATIONS In September 2002, there were at least 2,100 consumer organizations in the U.S. In the same year, there were approximately 3,800 organizations in the traditional mental health sector. So – lets now look at the findings. Based on our definition, we found the following that there are at least 2100 consumer organizations in the US. Please note that we believe this was an underestimate of the actual number. By way of contrast, there are approximately 3800 organizations in the traditional mental health sector. So – lets now look at the findings. Based on our definition, we found the following that there are at least 2100 consumer organizations in the US. Please note that we believe this was an underestimate of the actual number. By way of contrast, there are approximately 3800 organizations in the traditional mental health sector.

14. 14 CHARACTERISTICS OF CONSUMER ORGANIZATIONS Median length of time in existence = 11.59 years 89.5% have paid staff 87.2% have a budget; 52.5% have a budget of less than $100,000, and 37.1% have a budget between $100,000 and $500,000 80.7% of consumer organizations with budgets receive grants and/or contracts; 14.7% give grants and/or contracts The following slides provide you with some VERY BASIC characteristics of consumer organizations and the activities, services and supports in which they engage. So, lets spend a few minutes looking over these slides and then move on to what I see and you see as policy implications. (DON’T READ) For those of you who are not statisticians, the SE stands for standard error. It tells you the percentage to add to and subtract for the percent you see to account for error in the estimate. For example, the statement that 89.5% of consumer organizations have paid staff means that it is most accurate to report that between 85.5% and 93.5% have paid staff. The following slides provide you with some VERY BASIC characteristics of consumer organizations and the activities, services and supports in which they engage. So, lets spend a few minutes looking over these slides and then move on to what I see and you see as policy implications. (DON’T READ) For those of you who are not statisticians, the SE stands for standard error. It tells you the percentage to add to and subtract for the percent you see to account for error in the estimate. For example, the statement that 89.5% of consumer organizations have paid staff means that it is most accurate to report that between 85.5% and 93.5% have paid staff.

15. 15 CHARACTERISTICS OF CONSUMER ORGANIZATIONS 86.6% are incorporated as not for profit organizations Word of mouth (99.9%) is the most common way people find out about them. 93.1% receive referrals from psychiatrists and therapists. The average number of services, supports and activities each undertakes is 11.4

16. 16 Proportion of consumer organizations providing specified services, supports, and activities (n= 2,099) At least three-quarters of consumer organizations are engaged in: Percent Advocacy or rights protection 80.4 Face to face support groups 80.2 Public and community outreach 79.0 Social or recreational 78.4 Write or produce material or information 77.6 Formal training/ classes not job related 76.0 Now, lets look at the specific activities they engage in and the services and supports they provide. READ SLIDENow, lets look at the specific activities they engage in and the services and supports they provide. READ SLIDE

17. 17 Proportion of consumer organizations providing specified services, supports, and activities (n= 2,099) Between one-half and three-quarters of consumer organizations: Percent Distribute material or information 70.4 Telephone support (hot, warm, info) 69.7 Creative or performance arts 68.6 Case management 60.8 Help with housing problems 58.1 Face to face mentoring or buddy system 56.4 Research activities 53.7 Outreach to members 53.4 READ SLIDEREAD SLIDE

18. 18 Proportion of consumer organizations providing specified services, supports, and activities (n= 2,099) Nearly one-half of consumer organizations: Percent Operate a drop in center 47.6 Internet listserv or website 45.6 Help people get jobs 45.5 SLIGHTLY FEWER THAN ONE-HALF OF CONSUMER ORGANIZATIONS…….SLIGHTLY FEWER THAN ONE-HALF OF CONSUMER ORGANIZATIONS…….

19. 19 POLICY ISSUES The President’s Commission report specifically recommends: Recommendation 1.1 “Advance and implement a national campaign to reduce the stigma of seeking care…” Recommendation 2.2 “Protect and enhance the rights of people with mental illnesses.” With this basic descriptive information as a frame of reference, we wanted to explore the role of consumer organizations in achieving mental health transformation, as specified in the new freedom commission report. READ SLIDE Next slide With this basic descriptive information as a frame of reference, we wanted to explore the role of consumer organizations in achieving mental health transformation, as specified in the new freedom commission report. READ SLIDE Next slide

20. 20 POLICY ISSUES The President’s Commission report specifically states: “The lack of decent, safe, affordable, integrated housing is one of the most significant barriers to full participation in community life for people with serious mental illnesses.” “People with mental illnesses have one of the lowest levels of employment of any group with disabilities – only about 1 in 3 is employed.” Further, the report goes on to state that…. READ SLIDE Further, the report goes on to state that…. READ SLIDE

21. 21 POLICY QUESTIONS To what extent do consumer organizations address the recommendations and concerns raised by the New Freedom Commission? To what extent do consumer organizations address the SAMHSA vision of a life in the community for all that includes a home, a job, and meaningful relationships with family and friends? THESE recommendations and ISSUES RAISE THE FOLLOWING SPECIFIC QUESTIONS……….. Read slideTHESE recommendations and ISSUES RAISE THE FOLLOWING SPECIFIC QUESTIONS……….. Read slide

22. 22 Proportion of consumer organizations addressing stigma and rights protection and the SAMHSA mission This graph (on slide 22) answers the questions just raised. We have found that over 80% of consumer organizations, even prior to the 2003 new freedom commission report, addressed the protection of rights for consumers, and only slightly fewer addressed stigma. Further, about three-quarters provided opportunities for consumers to participate in social activities, nearly three-fifths helped people with housing problems, and nearly one half helped people get jobs. This graph (on slide 22) answers the questions just raised. We have found that over 80% of consumer organizations, even prior to the 2003 new freedom commission report, addressed the protection of rights for consumers, and only slightly fewer addressed stigma. Further, about three-quarters provided opportunities for consumers to participate in social activities, nearly three-fifths helped people with housing problems, and nearly one half helped people get jobs.

23. 23 FINDING Large proportions of consumer organizations currently possess the infrastructure and already do respond to a number of the recommendations of the President’s New Freedom Commission on Mental Health. In Conclusion, we found that….. In Conclusion, we found that…..

24. 24 FINDING Many consumer organizations address the barriers to mental health care cited in the New Freedom Commission Report. STIGMA COSTS WORKFORCE SHORTAGES FRAGMENTED SERVICES NOT KNOWING WHERE AND HOW TO GET CARE LACK OF AVAILABLE SERVICES The new freedom commission cited six barriers to care: stigma, costs, workforce shortages, fragmented services, not knowing where and how to get care and the lack of available services. An earlier graph demonstrated the extent to which consumer organizations are working against stigma. Most – 4 out of 5 – actively work to fight stigma and discrimination in the broader community. With respect to costs, all of the organizations in our survey provide services and supports without cost to the consumers; therefore, they overcome that barrier. There is a workforce shortage in the traditional mental health sector. Consumer organizations can help to bridge this gap by providing services and supports in communities where mental health providers are scarce or unavailable. Today, as increasing number of consumers are being certified and their services are being reimbursed by Medicaid. This is an area where we are experiencing rapid and fundamental changes. The impact of the next 3 barriers – fragmented services, not knowing where and how to get care and the lack of available services -- , I believe, are reduced because most consumer organizations provide, under one roof, as “one stop shops,” access to a very broad range of services and supports. They also provide linkages to the array of services and supports outside of the mental health sector that are critical for recovery. The new freedom commission cited six barriers to care: stigma, costs, workforce shortages, fragmented services, not knowing where and how to get care and the lack of available services. An earlier graph demonstrated the extent to which consumer organizations are working against stigma. Most – 4 out of 5 – actively work to fight stigma and discrimination in the broader community. With respect to costs, all of the organizations in our survey provide services and supports without cost to the consumers; therefore, they overcome that barrier. There is a workforce shortage in the traditional mental health sector. Consumer organizations can help to bridge this gap by providing services and supports in communities where mental health providers are scarce or unavailable. Today, as increasing number of consumers are being certified and their services are being reimbursed by Medicaid. This is an area where we are experiencing rapid and fundamental changes. The impact of the next 3 barriers – fragmented services, not knowing where and how to get care and the lack of available services -- , I believe, are reduced because most consumer organizations provide, under one roof, as “one stop shops,” access to a very broad range of services and supports. They also provide linkages to the array of services and supports outside of the mental health sector that are critical for recovery.

25. 25 Questions for Discussion There are 3,066 counties in the US and approximately 2,100 consumer organizations. What should our assumptions be about the need to expand the number of consumer organizations? What kind of information do you use/need about consumer organizations in your work? Are there any research or policy questions you have about consumer organizations, or mutual support groups or self-help organizations, that we can address through these data? If yes, is anyone here interested in working with us in analyzing the data? That concludes my presentation. In my last slide, I have raised several questions. We can address these or I can address questions you might have.That concludes my presentation. In my last slide, I have raised several questions. We can address these or I can address questions you might have.