CMHS National Advisory Council
Subcommittee
on Consumer/Survivor Issues
DoubleTree Hotel and Executive Meeting Center
Rockville, Maryland
September 5-6, 2001
Summary of Proceedings
Wednesday, September 5, 2001
Chairperson Caroline Kaufmann called the meeting to order at 10:00 a.m.
National Advisory Council Subcommittee members in attendance included: Sharon Yokote, Sylvia Caras, Juli Anne Lawrence, Donna Preston, Jon Brock, Caroline Kaufmann and Kevin Fitts.
Other Attendees:
CMHS Staff: Camille Barry, Michael English, Ted Searle, Paolo del Vecchio, Carole Schauer, Robert Grace, Neal Brown, Risa Fox, Ms. Belanger, and Kana Enomoto.
Howard H. Goldman, Professor of Psychiatry at the University of Maryland School of Medicine; Laura Van Tosh, Independent Consultant; Mary Giliberti, Senior Staff Attorney at the Judge David L. Bazelon Center for Mental Health Law; Larry Belcher, Chief Executive Officer of CONTAC; Daniel B. Fisher, Co-Director of The National Empowerment Center, Inc.; Joseph Rogers, Executive Director of the National Mental Health Consumers Self-Help Clearinghouse; Dennis Fitzgibbons, Director of Operations for Alpha One; and Nancy-Lee Haradon, Presenter.
Vijay Ganju, NASMHPD Research Institute; Randolph Hack, Consumer Advisor for the Hawaii Adult Mental Health Division; Karen Kangas, Director of Community Education & Recovery Affairs for the Connecticut Department of Mental Health & Addictions; Susan Robertson, Mental Health Specialist at the National Institute of Health; Chris Marshall, Federal Affairs Representative for NAMI; Karena Bayruns, Technical Assistance Coordinator; Gordon Raley, Vice President of Federal Partnerships for the National Mental Health Association; Samuel Awosika, Acting Director of the Office of Community Affairs DMH/CSA; Brian Coopper, Senior Director for Consumer Advocacy for the National Mental Health Association; Laurie Ahern, Co-Director of the National Empowerment Center.
Each Subcommittee member introduced themselves and provided an overview of current activities.
Revolving Chairperson:
Subcommittee members alternated responsibilities as Chairperson for the two-day meeting; Caroline Kaufmann was chairperson for the opening session.
Old Business:
The May 20-21, 2001 minutes were discussed. After various Subcommittee member comments, the minutes were approved as amended.
Sylvia Caras, recommended an adjustment to page # 2; Kevin Fitts, stated that there were some conversations not noted; and a public conduct name was misspelled on page #4.
Subcommittee members approved the minutes as amended.
Vacancies:
Paolo del Vecchio announced that Jon Brock, Sylvia Caras and Sharon Yokote were reappointed to 3-year terms. Maria Mar has submitted her resignation. Full council member nominations have been frozen until further notice.
Discussion:
Grant awards will be announced at the Employment Summit, on October 9. The FY 2002 CMHS budget has been cut by $19 million in conjunction with the President's submission to Congress. Discretionary grant programs are expected to be affected the most.
Working Lunch
There was consensus among the Subcommittee that every January each Subcommittee member will report their outreach efforts, progress, and future plans. In May 2002, the Subcommittee members will discuss goal setting for the next three years. Every spring they will review recommendations and actions to be taken by the SAMHSA joint council.
In addition the Subcommittee also recommends that conference calls occur far enough in advance of meetings to allow materials to be gathered and appropriate agenda speakers to be confirmed. The members plan to utilize these conference calls to shape the agenda by choosing one item on an educational topic and determining the "homework" for that item. A running list of topics that need to be addressed (budget, policies, programs, etc.) will be kept and reviewed periodically.
The members would like to have the Subcommittee's purpose/mission on the Information Center website to formalize their efforts. Subcommittee member biographies should also be included.
Jon Brock, chaired the next session of the meeting.
Self-Determination, Consumer-Directed and Personal Care Attendant Services
Dennis Fitzgibbons, Director of Operations at Alpha One joined the meeting via teleconference to discuss the history and components of consumer-directed self-determination models regarding personal care assistants (PCA). Nancy Lee Haradon highlighted some of her experiences receiving PCA services and expressed appreciation for support of consumer/survivor-based services. The movement towards self-determination that has helped her to have pride in herself. Ms. Haradon stated that obtaining and keeping a Personal Assistant (PA) long term is difficult. PCA's are not paid well for the intensive work they are expected to perform; therefore, a good PCA is difficult to keep because they can get better paying jobs elsewhere.
Ms. Haradon learned about the PCA program through a staff person in a support group. Her PCA visits 4 times a week for 5 hours (this equals 20 hours a week). The PA helps with laundry, dishes, shopping and other essentials. Ms. Haradon's PCA has enhanced her quality of life. Word of mouth or newspaper ads are the primary resources for her to find a PCA.
Question/Answer period on Nancy Lee Haradon's Presentation (Ms. Haradon's response indicated by italics):
Kevin Fitts: What do you think are the biggest problems in finding a PCA? Low wages and no benefits. PCA's in Massachusetts get paid a little better than Oregon or Maine.
Jon Brock: Why do you think PCA's do not stay longer? Benefits are poor. There is little incentive for them to continue with long term employment in Massachuetts. PCA's only receive two paid holidays and no vacation pay.
Sylvia Caras: Who sets the rules for the PCA's? This is done by the State Medicaid office. How hard was it to develop the skills for being an employer? This was very difficult. I joined a support group that helped because we discussed possible solutions. Perseverance has been a valuable tool.
Jon Brock: Have you avoided hospitalization and additional expenses by having a PCA? Yes. I believe I would still be in the hospital if I did not have a PCA. Has the organization documented cost savings of this program (the Action Grants should fund this type of research to uncover whether this program is financially beneficial in the long term)?
General Questions: Are there limitations on what a PCA can do? The PCA is not allowed to give medications. Are you aware of any PCA's who also have mental illness? Yes, there are some. How many people do you know who have a PCA? Out of 27 in the group, there are only 5 people who have PCA's because there aren't enough PCA's available.
Dennis Fitzgibbons spoke about consumer-directed services in Massachusetts and Maine.
The consumer/employer is responsible for filling out the appropriate paperwork for taxes and citizenship. A time sheet is also to be submitted twice a month with the hours the PCA has worked. Payroll services are provided by Alpha One and include the deduction of MEDICARE, FICA, and Workman's compensation from the PCA paycheck. Alpha One's current program only supports persons with physical disabilities; however, there is a belief that certain modifications could be made to accommodate those persons who have mental health disabilities. In the early 90's, this program was originally established to assist people to return to the communities of their choice, usually where friends and/or family resided. The personal circle of friends is essential for helping the individual find work and lodging.
Question/Answer period on Dennis Fitzgibbons' presentation: (Mr. Fitzgibbons' response is indicated by italics.)
Kevin Fitts: Work force issues for PCAs (such as low wages) have become a problem throughout the country. As the economy has strengthened over the years, this problem has become more severe. Oregon faces the problem of not having enough PCA's to fill all the requests.
Sylvia Caras: What kind of model can be used as the consumers' disabilities fluctuate? An advanced directed model is in progress. The consumer can initiate what types of services will be needed in the future as they know their past history.
Jon Brock: What response is given from traditional mental health programs? Many are afraid of change. The point is to make them see that this is possible and that working with the consumer is better in the long run.
Kevin Fitts: Is the State of Maine sympathetic to the wages of Personal Care Assistants? Wages were raised to $7.50 per hour; however I do not foresee another increase, especially since most of these people are family members or friends. The program has been successful because of friends and family members of the consumers. As the population ages the number of available PCA's will decrease.
Surgeon General's Report on Race, Ethnicity & Culture
Kana Enomoto, Public Health Advisor, Division of Knowledge Development and Systems Change, CMHS, gave key findings on a supplement to the 1999 Surgeon General's Report on Mental Health, Mental Health: Report of the Surgeon General, titled "Mental Health: Culture, Race and Ethnicity."
Key findings of the report include mental illnesses are real, disabling conditions affecting all populations, regardless of race or ethnicity. Striking disparities in access to mental health care are found for racial and ethnic culture counts—cultural and social influences are important to mental health. In the United States, 1 in 5 adults and children have a mental disorder. Minorities have less access to mental health services and are less likely to receive treatment; minorities often receive poorer quality of care.
Some of the barriers to recovery for minorities include: organization and financing of services, geographic access to providers, language differences, quality of care issues, stigma/discrimination and mistrust, and a lack of information regarding the effectiveness of treatment or the possibility of recovery. One in four minorities are living in poverty—Latino populations are more likely to be uninsured—about 37%, and African Americans about 23%.
Several courses of action can be made to reduce mental health disparities—such as including minorities in mental health research; developing ways to improve access; reducing social, geographic, and financial barriers to diagnosis and treatment; tailoring services and understanding to the unique cultural differences of consumers; and building on intrinsic strengths by engaging consumers, families and communities. This report is meant to be a scientific report, and the best quantitative information available on these subjects per the Surgeon General. A copy of this report is available via the Internet at mentalhealth.samhsa.gov.
Donna Preston commented that the report was lacking in many respects and did not adequately address the mental health needs and issues related to the Race, Culture and Ethnicity segment.
Public Comments and Remarks:
Brian Coopper, National Mental Health Association, National Consumer Supporter Technical Assistance Center, stated that the Subcommittee is becoming better known. He believes that this group needs to examine why people who have a physical disability can get PCAs but yet people with mental health disabilities are not eligible for such programs.
Joseph Rogers, Executive Director of the National Mental Health Consumers Self-Help Clearinghouse, handed out a package that gave information on his testimony given at the September 5, public hearing on the New Freedom Initiative.
Thursday, September 6, 2001
Rotating Chairperson, Sharon Yokote called the meeting to order at 9:30 a.m.
Evidence-Based Practices
Neal Brown, Branch Chief of the Community Support Program, Division of Knowledge Development and Systems Change, CMHS, spoke about a collaborative project between CMHS and the Robert Wood Johnson Foundation (RWJ) to develop toolkits on Evidence-Based Practices (EBP). These six toolkits are: medication, illness self-management, assertive community treatment, family psycho-education, supportive employment, and psycho-social services. This project is in the first phase which began last year and will continue through 2002. Testing of these toolkits will occur in the second phase.
Howard Goldman, a Professor of Psychiatry at the University of Maryland School of Medicine in Baltimore, Md., focused his presentation on the difference between best practice and evidence-based practice and the definition of "what works." In the process, Dr. Goldman hoped his presentation would answer Jon Brock's question regarding whether evidence-based practices increase the demand for more professional or consumer-organized care.
Best practice is defined as the prevailing treatment preferred by the public whereas evidence-based practice has been tested by taking a model and implementing it with the same measured success in different locations throughout the country. Alternative and dietary supplements such as St. John's Wort is an example of a best practice which has limited evidence of success. An emerging evidence-based practice is the jail diversion program considered to be an evidence-based program "with training wheels." The consumer operated-programs have not had sufficient research to indicate their success or failure.
Laura Van Tosh, an independent consultant, presented on evidence-based practices and focused on the importance of establishing evidence-based guidelines.
Model Treatment Law
Ms. Mary Giliberti, a Senior Staff Attorney at the Bazelon Center, a legal advocacy organization that works to improve the rights and dignity of people with mental health disabilities, has drafted a model law which developed from the lack of understanding of the mental health system and the laws that currently exist that tend to blame the consumer for not receiving appropriate care or treatment. The drafted law focused on the self-identified needs consumers have such as a job, a house, friends, etc. The law was drafted to create a legal right for consumers as one of the tools which can be used to help change the mental health field.
The main parts of this law are that it is a voluntary law, which means that someone has to request treatment, and it is designed to promote recovery and life goals, not just reduction of symptoms. The desired outcomes are to provide opportunities to discuss the services that mental health communities/consumers want, bring people together (currently there is a lot of division in the mental health community on such issues as outpatient commitment), and have the law enacted either on a state, county or even a community level.
Article 1: Sets out the purpose of the law. To make services and supports available on a voluntary basis to empower and authorize individuals diagnosed with a serious mental illness to obtain needed services and support individualized planning.
Article 2: Sets the definitions. Some controversial definitions are that children are not covered, and it is not clear who pays for the services and how that determination is made.
Article 3: Is the core of the law. This establishes what is enforceable under the law which is that the individual will "receive mental health services and supports in sufficient amount duration, scope and quality to support recovery, community integration, and economic self sufficiency." Part of this article was borrowed from Medicaid statutes. This also allows an adult who has been involuntary committed to request voluntary services such as a job-training program. This article also creates an advocate to help to the mental health consumer understand the law and what services are available to them under that law.
Article 4: Sets the petition procedure for services. This states that the public mental health authority must assist the individual to request services desired by them. An advocate would be available to assist the consumer in this process. It establishes the need for people in crisis to receive services more quickly.
Article 5: Service planning process. Establishes how to get services in place. This is intended to be an individualized discussion about what services are needed and wanted and then those services are to be provided within a reasonable time frame.
Article 6: Discusses outreach. Efforts should respect the autonomy of individuals and their right to refuse or discontinue services.
Article 7: Establishes the use of advocates. The system pays to have an advocate assist the mental health consumer through this process if the services are requested. The Advocate should be trained in the area of mental health, should be either past or present consumers, and be familiar with the mental system.
Article 8: Sets the appeals process. Establish emergency procedures that are intended to speed up the process (particularly for cases when consumers are about to be sent to jail).
Article 9: Focuses on quality improvement and evaluation. This establishes the need to define what is to be measured. The measures are to be directly based on individuals in services.
Article 10: Addresses miscellaneous items.
This law has not been formally released. They are open to ideas about how to use it best via the media, State legislatures, task forces, conferences and publications and any strategies that can help move the proposal forward. Compelling stories are needed to create interest and they can be sent to maryg@Bazelon.org or contact her directly at (202) 467-5730 ext. 15. No official release date has been scheduled.
Question/Answer on the Model Treatment Law (Ms. Giliberti's response indicated by italics):
Sharon Yokote voiced concern that if there is a plan to have a similar model law for children then there is a need to strengthen the use of the transitions process under IDEA. She expressed that she was unsure of how exactly to do that, but that it is important to do because many children get lost in the system.
Jon Brock expressed concern that this law would promote professionally driven services via a "Right to Treatment." Ms. Giliberti responded, "no one can get services under this law unless they request it. This is not an attempt to force services on the individual without consent but to create a mechanism so people can say what it is that they want."
Discussion:
The Subcommittee members agreed that strategic planning and goal setting will occur at the May meeting in 2002. Agendas and background materials for each meeting should be disseminated to the members, no later than, ten days prior to the meeting. The agenda should also be available to the public at that same time on SAMHSA's National Mental Health Information
Center.
Members suggested for future meetings that the meeting room should be large enough for the Subcommittee members and 20 additional guests.
The Subcommittee will meet again on February 5-6, 2002; June 17-18, 2002; and September 3-4, 2002. These meeting dates are tentative because they are scheduled to precede the National Advisory Council's meetings. The Subcommittee members reaffirmed the process of joint rotational chairing.
Topics on the agenda for the February 5-6, 2002, Subcommittee meeting are CMS orientation (how to work with Medicaid), and ECT. Strategic planning and goal setting are scheduled to be discussed at the May 20-21, 2002, Subcommittee meeting. "Parking lot" topics are to be kept on a running list to be presented at future Subcommittee meetings as time allows.
The Subcommittee members recommended for future planning that:
- All handouts be numbered and incorporated into the minutes and then attached to the proceedings and sent to the Subcommittee members
- materials be provided before each meeting and also be available at the meeting site to alleviate the transport of heavy materials
- fewer items on the agenda and at least a half hour of subcommittee discussion time after each topic (the effectiveness of this will be reviewed at the end of the January meeting).
- use of non-toxic, non-scented markers only
- a point person should be responsible for drafting a recommendation for a topic area, distributing the recommendation to the Subcommittee members before the meeting, gathering and incorporating the feedback which will then be distributed at the next meeting with the expectation that it will be accepted by the Subcommittee members at that time. (This approach will be tested on the topic of ECT to be presented at the February meeting in 2002. Ms. Juli Anne Lawrence will be the point person, and Mr. Jon Brock will assist.)
The following information will be incorporated into the agenda:
This is a Fragrance Free Environment to reduce the allergic reactions and/or disturbances. Please do not apply or reapply scented items such as aftershave, cologne, and perfume.
Revolving Chairperson, Kevin Fitts, called the meeting back to order and introduced the facilitator for the next discussion topic.
Consumer Technical Assistance Centers: Update and Discussion
Ms. Risa Fox is a Public Health Advisor in the Community Support Program Branch (CSP), Division of Knowledge Development and Systems Change, CMHS, and has been working on consumer issues for 24 years. CSP started in 1977 as a very small program and over the decades has helped to bring consumers to the table to make policy. In the mid 80s CSP started providing resource materials in the area of self-help and, in 1985, they sponsored the first Alternatives conference in Baltimore. In 1998, CSP expanded its effort by funding three technical assistance centers and two consumers support centers. Last summer, a one year competitive renewal was issued to explore technical assistance best practices in the country. A new grant program will be announced in Fiscal Year 2002.
Larry Belcher is the Director of Consumer Organization and Networking Technical Assistance Center (CONTAC) which provides grassroots technical assistance (TA). CONTAC customizes its program to fit the needs of each State. They are recognized for their leadership program, but this is only one of the services they can provide. Networking during and after the direct skills training program is the key to its success. They share their resources, and a large percentage of the grant money CONTAC receives goes back to the community. All their trainers are consumers, and CONTAC is successful due to the staff's dedication. CONTAC can be reached toll free at 1-888-825-8325; locally at (304) 346-9992; or via the web at www.contac.org.
Daniel B. Fisher, M.D., is Co-Director of The National Empowerment Center (NEC), Inc. located at 599 Canal St., Lawrence, MA 01840. Their website is www.power2you.org and the toll free number is 800-POWER2U. They provide TA on their 800 line which receives calls from all over the country. Staff use a national data bank to assist matching people with the support they need in their local area. NEC operates on the idea that mental health affects everyone. They attempt to reach all people by translating TA materials into other languages. There are many barriers for people who have psychiatric disabilities and a big need for TA in many areas of the country. Most consumers polled indicated that trust is the cornerstone to their recovery. Control and coercion are emphasized in the absence of trust and interfere with consumer recovery. Many consumers believe they have the right to follow their own dreams, not someone else's dreams.
Joseph Rogers is the Executive Director of the National Mental Health Consumer Self-Help Clearinghouse. Mr. Rogers passed out a handout which discussed what the Clearinghouse does, but chose to focus his presentation on what he perceives is the need for a grassroots movement. He felt that this movement should be a consumer-run, advocacy program at every level which is empowered and equipped to make voices heard and then hold the mental health system accountable.
Question/Answer Period of the Consumer Technical Assistance Centers: Update and Discussion
(Responses are indicated in italics.):
Sylvia Caras: How many hits does SAMHSA's National Mental Health Information
Center get? Unknown. On days when mental health issues are in the news there are substantially more hits than on a regular basis.
Kevin Fitts: Is there a GFA in the works? There will be a GFA for TA centers.
Jon Brock asked how the Subcommittee can help and whether they should consider proposing that the National Advisory Council continue to fund these programs/centers.
Caroline Kaufmann suggested maintaining the centers and programs that are currently operating.
Kevin Fitts: Why aren't more politicians on board? Historically consumer groups have not received enough funding to accomplish their goals because they are also the consumers of the products they say are needed.
*I REMEMBER SOME EVALUATION DATA*
Public Comments:
Charles Curie, Administrative Designee for SAMHSA was introduced and stated that "Mental health was well represented yesterday at the New Freedom Initiative hearing... CMHS staff should be thanked for their efforts."
Subcommittee Recommendations to the National Advisory Council:
Continue grant support at current funding levels or higher, for a minimum of five national consumer technical assistance centers of which at least 3 are consumer-operated.
Initiate Knowledge, Development & Application efforts in the area of mental health consumer-directed, self-determination models such as personal care attendants, voucher programs (e.g., cash & counseling), individualized budgeting, etc., that have been demonstrated successfully by persons with physical/developmental disabilities and older adults.
Meeting Evaluation and Closing
Revolving Chairperson, Kevin Fitts, called the meeting adjourned.
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