1. How I got involved in filbert-operated services and what do I mean "filbert"

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    1. I use the word "filbert" to mean
      1. "consumer/survivor",
      2. "People who experience voices, visions, fears and moodswings",
      3. "People who have been psychiatrically labeled"
      4. "Mental Patients" and "Ex-Mental Patients"
      5. "Clients" "S.P.M.I"
      6. "Subjects who are Mentals"
      7. "Lunatics", "Nuts", "Crazy"

      8.  
    2. Because any word we come up with soon has a "stigma" connected with it. So let's try "filbert", just for today.

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    4. I was working as the Supervisor of Long Term Treatment at the Lane County Community Mental Health Program when I went to a "psychological autopsy" for a successful suicide who had been our client.
      1. Her chart showed steady improvement in symptoms, reduction in medications and in contact with MH staff. Living at foster home, no problems with other residents or home operator. Case mgr relatively new & did not have relationship due to client refusal to come in to talk.
      2. One day she said hello to foster home provider who was cooking dinner, walked out to the garage & got a can of gasoline, took it to the yard, poured it over herself and lit herself up. The medical examiner said he thought she died almost instantly.
      3. Her brother said that he knew:
        1. She hated taking the meds, had history of fleeing "treatment"
        2. Had been captured, forced into hospitals several times, finally "beaten down" under commitment and placed in a foster home.
        3. She believed "if I tell them symptoms are decreasing, they will give me less drugs. If I tell them symptoms are increasing, they will give me more drugs. I hate how these drugs make me feel. I want to be taking no drugs at all, I want to be Drug Free!"

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      4. So she started telling them symptoms were getting better, they started reducing her drugs.
          1. Her symptoms increased, she told them they were decreasing, they gave her less drugs.
          2. Symptoms got really bad. She had no one she could trust to talk to about it. She suicided.

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      5. Brother suggests "gee, I wish there was a support group that she could have gone to without fear of being forced to accept treatment she didn't want."

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      7. A light goes on in my head.

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  3. The SAFE organizational model : SAFE is an idea, not an acronym.

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    1. Take a look at this article that came out Wednesday in Eugene Register-Guard  READ ARTICLE

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    3. Here are what I think are the essential components of SAFE that differentiate it from other filbert-driven organizations.

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      1. Safe is "owned" by the people working there
        1. 501(c)(3) organization: membership elects board annually, board runs organization through monthly meetings & executive committee.
        2. Board mostly made up of staff in organization (just elected first two non-filberts this week)
        3. SAFE has own bank accounts, does own payroll, manages own books & reports. Are in process of hiring CPA to do future tax reports & annual audit.
        4. Corporate structure allows start up of projects that might or might not "spin off" in the future.
        5. Project started at a community meeting and is essentially a continuation of that meeting.

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      2. We are not a "treatment" organization
        1. No files, no "enrolled clients", no treatment plans, no progress notes, no physician signatures.
        2. Funded on "grant" basis rather than fee for service.
        3. No promises of anything but "peer support"
        4. We refer folks who need help to appropriate agencies.

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      3. We do offer "respectful listening" to folks who call or walk in
        1. You don't have to have a "problem" or a "crisis" to interact with SAFE (not like "hot lines" or "counselors")
        2. What you're "SAFE" from is forced treatment.
        3. You're treated as a person, not a set of symptoms or a disease.
        4. No organizational boundaries regarding outside of center contact between staff and folks who visit.
      4. Staff get paid minimum wage to work there
        1. We started out at $10 per 4 hour shift
          1. But it is cleaner and easier to pay minimum wage &
          2. It's an appropriate wage for entry level work

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        2. Here's some figures on what it costs for staff:

        3. (using 28% fringes and just figuring keyholders)
          1. 20 hours a week = $17,000
          2. 40 hours a week= $34,000
          3. 56 hours a week (8hr, 7 days) = $47,500
          4. 12 hours a day= $71,000
          5. 24 hours a day= $142,500

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      1. Need for some "professional assistance" from a consultant
        1. Ok, there was a "ringer" involved here. Someone with some organizational skills who can act as a consultant to the group without being seen as an outsider. Someone specifically employed by "the system" to start such a group.

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        3. This was particularly helpful when the first "supervisor" quit and the group decided not to replace him (there was no money and it was felt it wasn't needed).

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        5. Filberts as a group, particularly those involved with self-help and "alternative mental health" ideas, tend to be very anti-authoritarian and oppositional. They are very suspicious of groups set up to be run by them only to actually be run by the funding agency. Consultant must genuinely want filberts to run organization & to work to turn over power to them as organization develops.

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      2. We had "support from the top" of our organization.
          1. Willing to allow the "ringer" to devote work hours to this project and allow use of building at night.
          2. Paid for free snacks for first two years to keep folks coming to the organizational meetings.

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  1. Why should resources be shifted to filbert-operated services?
    1. They are more accessible to some filberts, who distrust and fear professionals., people who are not now being served by the system

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    3. You can get 10 hours @ $6.50 for every $65 hour from a professional. We had one Keyholder who had been costing $15,000 a year for his "vocational program" in the system (working 10 hours a week @ a wage of $2/hr) and went to costing the system about $2,500 a year at SAFE (working 8 hours a week @ $5.50 an hour).

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    5. The filbert provided services can be superior to those from a professional
      1. Filberts may know more than professionals about the actual task being under taken by person being served
        1. Take learning to ride the bus. Would you rather learn from someone who rides the bus every day or someone who only rides as part of their job?
        2. Or how about dealing with Section 8? Rather be guided by someone who lives on Section 8 or someone who doesn't ?

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      2. The quality of "Respect" is more often present in filbert operated programs. Filberts are more likely to believe in the possibility of "recovery" than non-filbert professionals.

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      4. There's something about "self-help groups" that works because the folks in the "helper role" share the experiences of those in the "client role". Consider the field of substance abuse treatment.

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      6. Quality of "medication education" is as good as if not superior to any I witnessed during 21 years at a CMHP program.

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    6. A high percentage of filberts who get attracted to and involved with these sorts of programs are difficult, uncooperative, treatment-resistant, notorious and expensive clients of the system. These are precisely the folks whose use of the system can be reduced or improved by involvement with organizations like SAFE.

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    8. You get the double benefit of jobs for filberts and the provision of a drop in center community for not only the keyholders but the folks who drop in to use the center

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    10. You don't actually have to do a lot of training with these folks because they've spent years doing counseling and observing mental health professionals.
      1. They just recall what their counselor might say or do
      2. And then do the opposite.
      3. And a weekly de-briefing session around problems that have occurred is helpful. I've seen a number of folks who got through tense and difficult situations with folks who walked in needing help just fine, but then the helper was freaked out after it was done. Group feedback is powerful.

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    11. The amount of dollars funding paperwork is very small in this model.
      1. SAFE collects "a name" and "are you LaneCare member?"
      2. Stats on number seen per day & unduplicated folks per month are sent to funders.
      3. People appreciate the lack of files being kept about them.

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  2. Where could the money for filbert operated services come from?
    1. Cut the useless paperwork. Admit most of it is done to justify services and that "treatment plans" are not necessary, most progress notes are worthless and that you're paying staff to write giant biographical volumes which few if any people will ever read and are not needed for effective services that encourage recovery.

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    3. Do some actual outcome studies of traditional programs vs filbert-operated programs and move some "service" dollars over to filbert programs.
        1. But don't expect filberts to do these for free by themselves.
        2. Look at the actual data you have and compare to what outcomes you get vs those you say you get
        3. You can even employ filberts to do annual assessments of system client status using filbert-friendly format.

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    4. Try a "filbert operated program set aside" of 1% of gross MHO revenue "off the top".
      1. And if you plan to give 1/3 to groups advocating for families of younger filberts, 1/3 to groups of family advocates for adults
      2. Then try set aside of 3%. Don't rip off the filberts by supporting their parents' organizations with filbert dollars.

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So to wrap things up I'd like to open the floor to questions.
 

Q: If you do away with treatment plans, what are you going to do for assessment and measuring outcomes?
 

A: Try really doing assessment and measuring outcomes. Project Return-The Next Step, a filbert organization in California has designed and tested an assessment instrument that makes a very good outcome tool if done periodically with the same folks. It's design is that it's administered by filberts to other filberts, all of whom get paid for participating in the project. This is the sort of project that filberts could do for MHO's as well as individual providers: provide an unbiased outside evaluation of the filberts being served and document changes in their lives over time.
 

Q: A lot of filbert operated organizations have failed in this State. How can you keep that from happening?
 

A: I think a majority of new businesses fail, so filbert operated organizations are just like everybody else. However M.E.I. operated for 10 years & I don't consider that a failure. It is true that there's a lot of anger against each-other that goes on in filbert operated organizations, reminds me of SDS during the late 60's when it split into three factions that spent much more energy fighting each other than they ever spent on "the revolution". We tend to get especially angry with each other, and expressions of anger can drive folks away from an organization. If folks are committed to a process of talking with each other and trying to work things out, it can happen.