Center for Mental Health Services Midwestern United States Regional Consumer Meeting Wyndham Garden Hotel, Kansas City Airport, Kansas City, Missouri June 27, 1998 Introductions and Purpose of Meeting Paolo del Vecchio and Iris Hyman, Consumer Affairs Specialists, Center for Mental Health Services (CMHS), began the meeting by welcoming the participants, introducing the facilitator, and defining the purpose of the meeting. The meeting was facilitated by Dr. Jean Campbell, Research Assistant Professor, Missouri Institute of Mental Health, University of Missouri- Columbia, School of Medicine in St. Louis. The purpose of the Regional Consumer Meetings is to engage in a dialogue with consumers that will assist in building understanding and responding to the issues that are important to consumers of mental health services on the Regional, State and local level across the country. This exchange will focus on consumer needs and concerns, as well as the availability and quality of the services they are receiving. Another purpose is to provide an opportunity for regional consumers to meet and develop networks. The CMHS sponsored consumer representatives for this second Regional Meeting from Iowa, Kansas, Missouri, and Nebraska (see attached listing of participants). The following is a summary of that meeting. The opinions expressed are solely those of the participants and do not necessarily reflect those of CMHS, the Substance Abuse and Mental Health Services Administration (SAMHSA), or the Department of Health and Human Services (DHHS). Supporting Mental Health Illness Identification, Treatment, and Recovery Hon. Mary Bland, Missouri State Representative Bob Bryant, Client Rights Coordinator, Office of Consumer Affairs, State of Missouri Department of Mental Health, introduced the Honorable Mary Bland, Missouri State Representative. Representative Bland has been a member of the State Mental Health Appropriations Committee for 18 years and spoke on the history of mental health consumerism and advocacy. In addition, Representative Bland then reviewed the mental health legislative progress in Missouri and the impact of managed care on mental health services. Finally, she encouraged the consumers to continue in their efforts to inform the public, make demands on their representatives, and support each other. Overview of CMHS and Activities Update A brief history and structure of CMHS and a concise update on the Center's consumer-related activities were provided. The CMHS was created five years ago as one of three divisional offices [the other two being the Center for Substance Abuse Prevention (CSAP) and the Center for Substance Abuse Treatment (CSAT)] that comprise the Substance Abuse and Mental Services Administration (SAMHSA), a part of the U.S. Department of Health and Human Services (DHHS). The CMHS, in partnership with the States, leads national efforts to demonstrate, evaluate, and disseminate service delivery models to treat mental illness, promote mental health, and when possible, prevent the development or worsening of mental illness. Questions/Comments and Answers C: I get surveys on consumer service satisfaction, but they are too technical for me as a consumer to understand and they use unknown acronyms. I bring them to work at the Center, and even the professionals can't complete them. A: You provided an excellent example of why consumer input and involvement is essential in both the development and the testing of surveys. It is important to contact your State Mental Health Board to determine the amount and extend of consumer involvement in the report card process and to work toward having a voice. Q: The grants can be very good, but much of the time the monies go to the professionals, not the grass roots consumer. As a result, someone else is always speaking for us. A: We heard that concern at CMHS. To ease that situation, the grant monies for the self- help services funded this year will be funneled directly to the consumer organization, not to State, professional, or parent organizations. Q: Can some of these grants be used for independent living homes for mental health consumers? We have found that, in most cases, all the certificates are being used by senior citizens. A: The State network grants do offer a lot of flexibility. It is important to look at a number of options and a variety of potential funding sources, for example the Department of Housing and Urban Development (HUD). They may be a source of additional Section 8 certificates. C: I was involved in the development of the consumer report card. The process had very little consumer involvement there were mostly researchers at the meeting. Now that the testing phase has begun in the States, consumers again have discovered that they have very little involvement, and, as a result, consumers have very little interest. I believe that advocacy is the best therapy. It's important to be involved. I also have come to understand that a "Bill of Patient's Rights" is relatively ineffective if remedies or enforcement procedures are not a part of the bill. Finally, I want to acknowledge the work that is done by Federal CMHS personnel to ensure these grants are developed and available to consumers. C: I want to make a further comment about the consumer surveys being difficult to understand. The Kansas Mental Illness Awareness Council (KMIAC) has been working with the State of Kansas to develop a consumer satisfaction/technical assistance review survey. We now have a survey that is for consumers and was developed by consumers. It is very simple, short, and easy to understand. Q: In Kansas City, we have started a Resource Center, with a particular aim at establishing a day "recreational center," specifically for those consumers who do not feel comfortable using other established facilities. Can State grants be used for these purposes. A: The State Network Grants can be used to support Drop-In Center-type services. The funding is limited, but it certainly could be used for that purpose. The CMHS-funded Technical Assistance Centers have materials/information on how to start Drop-In Center Programs. C: I also would like to encourage consumer advocates and consumers to actively involve ministers and churches. Ministers are building senior citizens apartments and they can be instrumental in building like-housing for mental health consumers. They can be used effectively to encourage and create positive change. C: At the Missouri Institute of Mental Health, there is a national program called "Pathways to Promise," which is bringing the ministry into mental health issues. If people are interested they can call 314-644-8822, and inquire about the program. C: We must be careful where we borrow our models from to ensure that they are consumer designed and controlled. We might spend more energy looking at the models that are offered by those in the alcohol and substance abuse arena. For example, setting up half-way houses, operated and controlled by consumers. I'd rather see that than residential care facilities, where there may be some question of control. We need to be involved in the design, operation, and evaluation of programs, and be willing to eliminate what doesn't work and redirect the monies toward effective programs. Presentations on State Needs and Concerns Each State had an identified representative who provided a brief summary of what consumers in their particular State considered the most significant areas of need and issues for concern. Iowa Multitude of Jurisdictions and Services. Each county in Iowa has its own system of mental health care. This lack of uniformity across the State makes it virtually impossible for one consumer organization and one State consumer affairs specialist to track the amount of funding and to determine where the monies are allocated in each county. Consumer services suffer when there is no way to document the availability of funds. Peer-Run Services. Counties do not recognize peer-run support programs as viable services. Consumer Participation. County Planning Committees do not include consumer representatives. In addition, there is very little meaningful consumer representation on the State Mental Health Planning Council. Coalitions. There is a lack of cooperation and cohesion between the mental health consumer organizations and professional mental health organizations. Professional organizations tend not to recognize the consumer movement as a integral part of mental health advocacy and services. Working with Family Groups. There have been some differences in working collectively with family groups. Networking. Iowa, in conjunction with others, has begun to lay the groundwork to develop a Midwest Network of Consumers. Managed Care. Iowa has a State-wide managed care program for all SSI and Medicaid recipients, and consumers have established a very successful relationship with the managed care company. Unfortunately, for consumers who do not fall under those categories, there are a multitude of managed care companies operating throughout the State, each with their own mental health programs and benefits. "County of Legal Settlement" Provision. This provision mandates that the county in which you received your initial mental health services is the county that remains responsible for your bills even if you haven't lived in that county for many years. This creates a situation that encourages jurisdictional disagreements, additional paperwork, and payment delays, impacting negatively on the consumer. Dual-Diagnosis Programs and Quality Assurance Reviews. Currently Iowa is developing these programs to encourage uniformity throughout the counties. "Wellness Approach" Programs. Iowa is exploring the possibility of offering non- traditional and alternative therapies (to supplement traditional treatment) which would include relaxation techniques, biofeedback, and exercise. Consumer Goals. Iowa consumers need to be trained to interact with mental health professionals and members of planning boards. They must be encouraged to become involved to develop sufficient self-esteem so that they are not afraid to participate and have their voices heard. Consumer leaders can help with that, and this is an expressed need. Political involvement is more effective than "advocacy." Kansas Access to Medication. All mental health consumers must have access to the newer medications that now are available, including those on Medicare and Medicaid. Such access should be equal to that available to those with private insurance and at equal cost. Housing, Employment, Transportation. All these critical issues have been previously mentioned and our concerns are similar to those in other States. Stigma. Although consumers realize that internal (own self-image) stigma is an issue that consumers must deal with individually, and through peer-help, external (determined by society) stigma has become part of the culture, and misrepresentations must be eliminated. Images of mental health consumers must include people who are working, contributing members of society, from all walks of life and all socioeconomic levels. Federal Funds. Funds are needed from the Federal level that are allocated specifically for the support of State-wide Consumer Organizations. This will provide a Federal mandate to the legitimacy of consumer organizations. Children's Issues. The State of Kansas is beginning to focus on children's issues in mental health. This can be thought of as preventive medicine, and, if more funds were available, and applied properly, it could possibly reduce the numbers of adults requiring mental health services. Insurance Parity. Although this issue is one consumers still are fighting for, this year the State assigned the Legislative Oversight Committee to investigate the current status of parity, gather information, and report back to the Legislature during the upcoming session. Funding. Consumer-run organizations provide services that have resulted in significant cost saving to the State. Kansas mental health consumers feel they are deserving of at least one percent (1%) of the total State-funded mental health budget to continue their services, and are actively campaigning for that measure. Protection and Advocacy. This is of particular significance to those in State institutions, although it is important for all mental health consumers. Abuse and disrespect must not be tolerated. Marital Rights/Benefit Allocations. Consumers must be accorded the same rights concerning marriage and families as all other Americans. Only mental health consumers suffer from reductions in benefits when they marry. Martial status does not change the disability; it should not change the benefits. Missouri Survival. "Grassroots," consumer organizations are an essential part of the mental health arena. In order to reach consumers, you must be able to identify with people, and that is what consumers can do and must be allowed to do. It is imperative that consumer-run groups be given the vehicles (e.g., funding, etc) to train and educate the population that requires their services. Professionals must recognize the importance of the consumer movement, as well as support them and include consumers in all professional organization efforts. Consumers are the population that such organizations are dedicated to serve. Medication. Great strides have been made in mental health issues over the last few years, mainly due to vast improvements in medications. Consumers must have access to these medications and sufficient financial support to afford them. Employment. Gainful, meaningful employment is an important component to recovery and stability. Consumers need jobs to establish their self-esteem and become productive members of society. Grievance Procedures. The establishment of a viable grievance procedure will resolve many of the concerns and issues of mental health consumers. There are unilateral grievance procedures, but that does not encourage communication, negotiation, and compromise for the betterment of all. Public Education. The public must be educated to recognize that mental illness is as legitimate a disability as any physical disability. Formularies. Managed care organizations and publically-supported programs must include all available and potentially prescribed pharmaceuticals in their formularies. Consumers are forced to change medications (with all the potential negative side-effects) because the specific drug that has been prescribed for them is not available in the formulary of their managed care or Medicaid pharmacy. Counseling. The availability of one-on-one professional or peer-counseling is an important part of reaching and maintaining recovery. Funds for these valuable services are being significantly reduced or eliminated. Benefits. This issue is directly related with employment. A job is of no use, if it results in the consumer losing the benefits that provide medications, housing, and other basic necessities. The regulations must be changed to encourage independence, not discourage it. Housing. Housing designated for consumers is being allocated to senior citizens. Consumers either are not eligible for senior citizen housing, or are stigmatized. Most consumers cannot afford their own housing. This situation leaves the consumer with no viable option for decent housing. Discounts. Because of their economic situation, many consumers could benefit from the type of discounts extended to senior citizens. Evaluation and Oversight. The organizations or government entities (e.g., Dept. of Mental Health) that fund programs should be required to conduct and publish evaluations on how the monies are spent. There must be a close accounting of monies spent on vendors, the amount spent on administration and overhead, and the amount that actually is received by or directed to the consumer. This includes the review of accounting procedures, banking statements, and financial records. Consumer-Operated Services. Consumers do not deserve to receive funding simply because they are consumers; they deserve to be funded because they can, in fact, provide needed services. These should/could include Drop-In Centers (which need to be funded at the State level) and consumer-run businesses (training to develop business plans and conduct all aspects of establishing and maintaining a business). Consumers organizations, like any other managed care entity, must show they have value, provide services, save money, demonstrate results, and document outcomes. Criminal Justice System. Local law enforcement personnel have total control over their systems, including when and if consumers receive their medications. This type of decision should not be made by law enforcement personnel. Physical Health Services. It is difficult and often impossible to locate a physician or a dentist that will accept Medicaid patients. Transportation. The opportunity for employment and counseling (treatment) is meaningless without a source of steady, reliable transportation especially in rural areas. Residential Treatment/Boarding Homes. Consumers are poorly treated in many of these facilities. They are not cared for, in terms of hygiene, clothing, access to medication, and freedom to express themselves. Drop-In centers are taking on responsibilities that rightfully belong to the residential services. Residential programs need constant oversight and evaluation to ensure that they are meeting all their responsibilities, as well as treating the residents with respect. Political Representation. There is only token consumer representation on any State Mental Health Committee. Representation must be meaningful. In legislative terms, consumers are making slow progress in their demands to have representation on the Governing Boards of managed care companies in the State. Consumers must create a political mandate for representation on local, county, and State levels. Homelessness. De-institutionalization helped to increase homelessness among consumers. This problem has yet to be adequately addressed. Wraparound Issues. Housing, home ownership, and rental issues also require the allocation of additional funds to support the consumer when they become sick, such as paying the rent or mortgage, storing household items when necessary and similar support. Dual-Diagnosis Programs. Specified funding is needed to treat and support the special needs of consumers with dual diagnoses. Change in Federal Regulations. Programs such as SSI and SSDI need to amend their regulations so that consumers do not lose all their support mechanisms (including medications) when they take steps toward employment and subsequent independence. Current Federal regulations discourage employment and work against the consumer who is trying to regain a sense of self and become a productive member of society. Nebraska Meaningful Employment. Current State vocational rehabilitation employment goals are focused on part-time work at a fast food establishment. This enforces the stereotype that consumers are limited in their employment capabilities. Many consumers are employed as office administrators, computer programers, and other professionals. Housing. This is another important issue, which is not easily accomplished. The barriers include not only money issues, but stigma issues as well. Peer self-help groups. There is a need to expand these services by using the many consumers who are psychiatrists, psychologists, social workers, and peer-trained counselors to help consumers with job training and to staff crisis-hotlines. With proper peer-support, a potential crisis situation can be defused without police involvement or immediate transport to a local regional center (which could be two hours or more from the consumer's home). Insurance Parity. Mental health treatment and service needs must be recognized as being as important as physical health needs. Managed Care. From its inception, managed care in Nebraska has sought out and encouraged consumer involvement. Recently, it had made a commitment that 50 percent of its Quality Improvement Steering Committee (the primary advisory council) be made up of consumers and family members. (It is important to note that this is a contractual obligation, which was negotiated for in the proposal stage.) They also agreed to pay these consumers a $50.00 stipend per meeting and travel expenses. There is a downside certain diagnoses, however, are not recognized by psychiatrists in some managed care organizations. Consumers must then leave the State to receive proper treatment. Transportation. The vast spaces of the Midwest makes transportation to and from treatment, as well as consumer meetings, a critical issue. More funding and/or program expansion is necessary. Medication. Access to medications is a right. Consumers should not have to "beg" for the medications that they need which enables them to be productive members of society. Political Involvement. The State's design for consumer involvement with and representation on the State Mental Health Evaluation and Planning Council is token in nature. Another point: there is a Federal regulation that requires the State to produce a yearly report on the allocation of funds and the adequacy of the mental health system not many States meet this requirement. That report would be a wonderful resource tool for the consumer, in terms of information and points for advocacy. Coalitions. There has been cooperation and cohesiveness between the professional, family, and consumer mental health organizations in Nebraska. Training. The Nebraska Leadership Academy is a four-day training program. It provides information and training to consumers on how to participate in the political and advocacy process. Discussion and Prioritizing Needs and Concerns The States' various needs and concerns, as voiced by the consumers, were generally categorized and listed as follows: poverty, services, empowerment, rights, cultural competence, and stigma and respect. Results were are follows: Poverty Services Empowerment Rights Cultural Competence Stigma and Respect Employment/ Loss of Benefits Self-Help/ Consumer- Operated Meaningful Participation (State Planning Councils) External Grievance Procedure Older Adults/ Elderly Terminology: "Case Management," "Behavioral" Housing Parity Consumer Training Involuntary Treatment Children Self-Stigma Homelessness Managed Care Working with Families Benefits Transportation Dual Diagnosis Political Activism Marital Rights Medication Fragmented Services State Consumer Organizations Abuse Access to Medical/ Dental Care Wellness Programs "True" Consumer Involvement Indefinite Institutional- ization Criminal Justice Real Control Restraint and Seclusion Quality Assurance Coercion Small Institutions Crisis and Emergency Professional Support Open Discussion During the open discussion of these issues and concerns, the following recommendations and remedies where raised: Although it appears that employment is the key issue among the States, consider that if consumers don't have housing or transportation, employment is not an option. Until these issues are addressed, consumers cannot expect to become employed. If consumers are de-institutionalized, they must be given the post-discharge support measures which will allow them to live in the community. This includes furniture, case workers, necessary transportation, food and clothing allowances, access to medications, and the like, as well as training to live independently. Boarding homes must be inspected on a regular and continual basis. One other avenue is legislation to ensure "true" consumer involvement and participation. CMHS can use its funding as a powerful force to change systems such as partnering with non-CMHS agencies, such as HUD, Department of Education, Department of Labor to emphasize independent living and empowerment issues. This would accomplish two things: (1) it would initiate and encourage the involvement of the consumer/survivor community with other disability communities, and (2) it would also give consumers the opportunity to work with people whose lives are affected by poverty, not only mental illness, so that we are included in poverty issues. Ultimately, this would allow those agencies dedicated to mental health issues to use more of their budgets on mental health issues. Allow mental health consumers to work while retaining all the medical benefits. After a certain level of income, consumers would be required to pay taxes. Consumers would both be paying into the system (and have an incentive to work) and receiving benefits from the system. Train and hire (pay) mental health consumers to meet the transportation issue; better yet, provide the kind of support required that would encourage and allow consumers to start their own transportation companies to serve fellow consumers. Create a "housing superfund" that would provide necessary financial support, specifically during a crisis, so consumers would not lose their homes (thus encouraging home ownership) or be evicted from rentals. Require, from the Federal level, some organizational unity across local, county, and State mental health programs. Also, continue to encourage the development of regional networks. Require the appointment of "real" consumers to State Mental Health Commissions. Enforce existing regulations and mandate others, as necessary, that require States be accountable for how they operate block grants and where the funds are allocated. This could be accomplished by way of a Consumer Monitoring Board, that also would assure that such information is made available to consumers. Mandate that consumers have immediate and/or timely access to emergency treatment services, including inpatient beds. Funds must be allocated to assure that the needs of the "whole" person are met to include places for education and nurturing not only treatment and housing. All programs must have the concept of consumer control at their core. The power of control over the consumer that is present in many organizations is not in the best interest of the people these organizations are designed to assist. If mental health consumers ever are to become productive members of society, consumers must have control. Allocate a certain amount of funds for literature development and mailings on the topic of stigma awareness/education. It also is important that consumers be sufficiently confident to admit they have a mental illness, and to talk about it. Provide education and training for "grass-roots" consumer advocates to encourage awareness and understanding of the political process and political programs on the local, State, and Federal levels. There is a developing trade association for State Mental Health Planning Councils that is planning to reach out to the "grass-roots" level and provide training at the State level. This is an opportunity to advocate for many issues, through a different voice. Although annual reporting on the allocation of the resources and the adequacy of the services of block grant activities is a Federal mandate, there is no enforcement provision so it is not done. The establishment of an adequate baseline of information across States would be a significant service to the consumer. Data collection of all types, including P&A information, is something that must be a main research priority and something that can be extended to training. There is nothing quite as powerful as a consumer who can correctly challenge the accuracy and/or quality of the data presented. Federally-sponsored "Civics 101" sessions are needed, in terms of how the political process works, division of responsibilities, methods of achieving change, and organizational techniques. Education programs are needed for family members in the recognition of, appropriate interaction with, and support of those in their family with mental illness. Legislation should be acted upon that will allow "drop-in" centers to bill for their services as professionals now do. The following would be extremely useful: (1) mandated external grievance procedures in all managed care organizations throughout the States, (2) consumer-run Ombudsman and P&A services, and (3) an assessment tool that would allow consumers to rate the attitudes and behaviors of mental health professionals in their States. Prioritizing Needs and Concerns After reviewing the list of needs and concerns presented by each State (see previous page) and exchanging ideas on many of the issues, each consumer voted for the three issues he/she considered to be their most important concerns. The results are as follows RANKING AREA NUMBER OF VOTES 1 Self-Help/Consumer Operated Services 11 Employment/Loss of Benefits 11 2 Housing 9 Medications 9 External Grievance Procedures 9 3 Consumer Training/Education 8 4 Crisis/Emergency Services 7 Meaningful Participation (State Planning Councils) 7 5. Stigma/Respect Issues 5 Coercion 5 6. Transportation 4 State Consumer Organizations 4 7. Cultural Competence (Older Adults/Children) 3 Political Activism 3 Managed Care 3 Access to Medical/Dental Care 3 8. Restraint and Seclusion 2 Criminal Justice 2 Parity 2 9. Involuntary Treatment 1 Benefits 1 Abuse 1 "Real" Control 1 Fragmented Services 1 Overview of the Surgeon General's Report on Mental Health An overview was presented on the history and current status of the Surgeon General's Report on Mental Health. In the Fall of 1997, the CMHS was asked by the Surgeon General's Office to act as the lead agency in the process to develop a Federal report on mental health issues. Past Surgeon General's Reports have focused on major public health issues that confront the Nation, such as tobacco use and HIV-AIDS. They are used primarily as public education vehicles and documents for social change. This project will be accomplished in conjunction with the National Institute for Mental Health (NIMH). The CMHS Regional Consumer Meetings provide for a consumer voice in this process, to ensure that the report accurately reflects some of the issues, needs, and concerns that have been voiced at the meetings. The report is expected to be published in the year 2000. At a preliminary meeting of the Surgeon General's Report Planning Council, the following potential messages were considered: Mental health should be integrated with primary healthcare, as many times they are interrelated. What does mental health encompass? How does mental illness manifest itself? What are some of the diagnoses? Mental illness is comparable to physical disorders. Etiology of mental illness Effectiveness of treatment for mental illness and mental health. Access and availability issues These issues will be integrated into a life cycle approach, such as children, adults, and the elderly, and also will include the examination of the role of consumers, families, and communities in contributing to mental health. Additional issues to be included are stigma and the promotion of a recovery philosophy. Consumer Recommendations for the Surgeon General's Report on Mental Health Meaningful consumer participation must be assured. The progression from dependence to independence must be included as some evidence of success, even though it may not be labeled as "empirical evidence." Include modern, "high-tech," up-to-date, positive, futuristic information/data that states what is the status of mental health TODAY and that substantiates the strong influence of consumer-run organizations on the positive progress of mental health. Include information/data on the impact of mental illness in terms of mortality rates, premature deaths, and involuntary incarcerations. Use consumer-oriented data to ensure a consumer voice. But, be sure also to include the positive information/data for example the number of mental health consumers living in America who have used drop-in centers and have access to supported employment situations and are currently self-sufficient, contributing members of society. (Some data is available through drop-in centers.) Include a caveat in the research section stating that such research did not include consumers in the design or execution of the research, nor in the interpretation of the results. Recommend that data collection/future research be focused on information on children and the elderly such information can not be included because it is not available. Include the positive impact of newer concepts of treatment, specifically consumers writing their own treatment plans and short-term support programs, as an alternative to commitment. The public must understand that, even though we are consumers, we do have the right, as patients, to have information on and make judgements about the medications that are prescribed to us. Also, mention should be made that overmedication and inappropriate prescribing occurs far too often. Enforce the point that stigma is indeed discrimination. Include positive, encouraging "real" life stories of "real" consumers in the report, using "first person" language not "they" and "people with mental illness," as if consumers are abstracts. Discuss the concept of self-stigmatization, and how that first must be overcome before conquering societal stigma. Emphasize that mental illness is not the same as mental retardation; that the vast majority of persons with mental illness are not dangerous; that mental illness is not necessarily "obvious;" and that we are your neighbors and your community. State that consumers have not "done" anything to have a mental illness: They should not be "punished" for their illnesses. Use Public Service Announcements (PSAs) to market the economic advantage of hiring people with mental health issues. Recommendations for the Midwestern Region The group voiced their desire to use this meeting as a basis for the development of an active network of Midwestern Consumers. Specific contact persons were designated with the intention of following through on this commitment in the near future. It was acknowledged that this meeting provided a forum where consumers could be heard and could trust that they would have a "voice." The "coming into voice" and the importance of hearing, as well as the provision of venues and forums for people to communicate are important parts of any consumer movement and may be another way to conceptualize the mission. Final Observations and Closing Participants were thanked for their contributions and reminded that CMHS always welcomes suggestions and information. The meeting was closed, with a rededication to the work ahead.