September 28, 2003

A.Kathryn Power

Executive Director Rm. 717-99

Center for Mental Health Services

5600 Fishers Lane

Rockville, Md. 20857

Dear Ms. Power;

I am writing to strongly recommend that federal SAMHSA/DHHS program monitoring/review teams be authorized to include questions about consumer-operated programs, self-help initiatives and leadership development as part of their mandated oversight monitoring of individual, federally funded, state programs.

The Center for Mental health Services has an Office of External Liaison and continues to support three technical assistance centers for consumer/survivor resources and assistance as well as numerous projects that foster peer-support and inclusion. Other national organizations, such as the National Association of State Mental Health Program Directors (NASMHPD) are making a continual effort to include consumer/survivors in all of their programs, projects, and initiatives.

Recently the President’s Freedom Commission on Mental Health submitted its final report. Among the findings is that mental illness is treatable and recovery is possible. Dan Fisher, the only self-identified consumer/survivor member of the committee, has been circulating questions to a large constituency of consumers to find out what our next steps should be to insure that our voices are heard at all levels of decision making for mental health issues. One of the recommendations is that we receive continued funding for our consumer-operated programs and that more consumers be hired in mental health agencies.

The Consumer Operated Services Programs (COSP) research project is another example of why consumer/survivor initiatives should be included in monitoring guides. It is anticipated that this federally funded study will find that persons who receive services from their community mental health center will recover more quickly if they also receive services from non-traditional programs such as consumer-operated drop-in center centers or self-advocacy programs. All of the participating non-traditional programs in the study met the study requirements of operating totally independent of the mental health system, having their own board of directors and having 501c3 tax-exempt status.

 

 

 

 

 

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A third federally funded research project on Integrated Services for Women (women who had experienced co-occurring histories of trauma, mental health and/or substance abuse disorders) is also coming to a close. This project made a strong commitment from the beginning to include women consumer/survivors at every level of administration of the project including the development of protocols, outreach to women in local communities, establishment of women’s support groups, collection of first person narratives, and the hiring of consumer/survivors in positions of authority by treatment provider agencies.

I hope that my recommendations are therefore timely and that you will find them consistent with similar concerns emerging from these studies and other efforts at the federal government level as well.

My concerns emerged from two first-hand experiences with federal monitoring visits. The first, in May 2000, was with the State Mental Health Block Grant program, for which I was included as a monitoring team trainee. The second experience was with a visit in May 2003, made by the CMHS PAIMI Monitoring team to the Florida P&A, where I am presently employed as an advocate. While each of these agencies provides different services, they are both administered by SAMHSA; thus the recommendations are similar for both.

First experience:

In 2000 I went on a monitoring visit as a trainee to the state of Pennsylvania to review the state mental health block grant. I had earlier attended a two-day training session that provided me with the federal guidelines and regulations to be a qualified reviewer. I had been selected because I am a self-identified consumer, a RN with long experience in rehabilitation and psychiatric facilities and an experienced monitor in the state of Florida. I immediately noted the absence of questions relevant to reviewing independently operated consumer-run programs or self-help initiatives. This was surprising because I knew that criteria had been developed and were being utilized in the SAMSHA/CMHS funded COSP Research Project. The only monitoring prompts that related to consumer or family involvement asked the percentage of consumers and family members on the state planning council, the frequency of their meetings, and the reported degree of satisfaction among recipients of services.

Acting on my concerns, I requested permission to include a visit to an independently operated consumer drop-in center prior to leaving for my first monitoring trip to the state of Pennsylvania. After many calls and discussions with the CMHS project officer, I was pleased to be granted permission to visit such a center located in Lancaster, a few hours from Harrisburg where the main site visit took place. I was subsequently accompanied on my visit by the director of the Bureau of Consumer and Family Affairs (which incidentally was not led by a primary consumer) and a support staff person from the state office of mental health. The other review team members visited a community mental health program in another part of the state.

 

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I felt that the visit was a positive experience. I spoke with the directors and with participating members and made some recommendations as to how their program might become more integrated into the array of other services provided. Essentially, I followed all of the standard guidelines for monitoring a service program and I presented a full report of this visit during the formal exit interview including the recommendation that the drop-in center receive additional support and recognition. Among my other recommendations was that the state office should have a self-identified consumer as a staff member in their consumer and family relations department.

I never received a copy of the report until I requested it during a recent visit to the Center for Mental Health Services/SAMHSA and I was deeply disappointed to see that none of the portions relating to the drop-in center visit had been included in the final report. I was told at the time of the monitoring that the entire report would not be included, as there was no federal authorization to allow its inclusion. Nevertheless, I fail to understand why the time and effort of so many persons—myself, the State staffers and the drop-in center staff and clients were so ill used, and why federal monies were expended in what appears to have been an ‘unauthorized’ field trip. The report of the visit to the community mental health center was, of course, included in its entirety.

Second Experience:

In 2003 I was hired by the Florida Advocacy Center for Persons with Disabilities. In the area of leadership development I am charged with the task of creating networks for persons with psychiatric disabilities, a state that no longer has a statewide consumer organization and where the involvement of consumers in many areas is non-existent. The Advocacy Center understands that leadership among this constituency is crucial to help with legislative mental health concerns and proposed law changes in the state. It was understood that I would offer my expertise as a self-disclosed consumer/survivor and that the work with which I had been engaged both statewide and national would continue to be supported and included among the accomplishments in the agency’s required quarterly reports.

In May of this year, the PAIMI section of the P&A was audited by a review team composed of six experts from around the country, two of whom were to represent the concerns of consumers and family members. Once again, I was disappointed to see that there were no standards or prompts in the monitoring manual that related to P&A supported consumer/survivor leadership or activities. As with the earlier block grant protocol, the only consumer-related questions concerned the make-up of the governing board and advisory council and a report of recipients’ satisfaction with P&A services. The consumer representatives were encouraged to ask questions about "outreach activities" but there was nothing specific about what that meant.

The team did not ask whether there was a ‘self-disclosed’ consumer on staff; they did not review the P&A’s activities in developing consumer leadership--supporting

 

 

 

 

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consumers working in various capacities around the state, support of consumers attending and presenting at national conferences, etc. Had they asked these questions they would have found the Florida P&A an excellent model for other states to follow.

There did not seem to be any way to volunteer additional information beyond the standard protocol of questions. When I tried to interject my concerns during the exit interview, I was encouraged to write a letter to the appropriate federal agencies expressing them.

Thus I am writing to offer the following suggestions for ways to improve federal monitoring protocols by including questions related to consumer/survivor initiatives and leadership development:

    1. Is there an Office of Consumer Affairs, or a consumer hired in an administrative level in the state office/agency?
    2. Does the state office/agency support the development of consumer-operated programs? In what ways? Can a visit be arranged to one of these programs-- to be included in the formal report? (Specially designed monitoring tools could be developed for this purpose)
    3. How does the state agency interface with existing statewide organizations and does it support them with funding or other resources?
    4. Is the state agency aware of national technical assistance programs for consumer/survivors and does it make available materials that are generated from these centers to persons receiving services in the state?
    5. Does the agency provide materials regarding available services written in consumer friendly language and do the materials include the availability of non-traditional services such as consumer-operated drop-in centers and other independently run services?
    6. Does the agency support the attendance of consumers at state and national conferences addressing consumer empowerment and leadership development, e.g. Alternatives Conferences and others.

I will appreciate your attention to these matters and would suggest that other consumers be asked for their comments/suggestions for improving federal monitoring guidelines and protocols. I would be happy to assist CMHS/SAMHSA in any of these endeavors. Please feel free to contact me at (954) 967-1493.

Sincerely Yours,

 

 

 

Gayle Bluebird, RN

Leadership Development and Training Specialist/Advocate

Advocacy Center for Persons With Disabilities, Florida

Cc: Paolo del Vecchio

Joyce Berry

Marie Danforth

Aleisa Mc Kinlay