NEC-West Teleconference Notes
Thursday, July 6, 2000 5:30 pm PDT
Present:
Carol Patterson, NEC-West; Pearl Johnson, Los Angeles, People of Color; Gail Green, Project Return, Discovery Center; James Lee, Project Return, Discovery Center; Laurie Ahern, NEC, Lawrence, MA; Lou Williamson, Sacramento PAI; BJ Morganti, Modesto, CA; Alfred Hauer, Los Angeles, SHARE; Kathie Zatkin, Alameda Network; Nancy Thomas, Alameda Network; Greg Warren, Santa Cruz, MHCAN; Ann Tychinin, Marin Network & MHB; Kinike Bermudez-Walker, Dallas, People of Color, Asian/Pacific Islander Network; Bitsy Elftman, San Francisco, DMDA; Dan Fisher, NEC, Lawrence, MA; Sharon Yakote, Honolulu; Cherokee Morrison, Long Beach, Outreach Specialist; Mark Karmatz, Los Angeles, Client Coalition, CNMHC; Jackie Jackson, Long Beach
How can we in Self Help can promote the recovery of persons who have been dual diagnosed without relying on the MH system?
Part of the problem is that people are released from hospitals and programs without a treatment plan and so they go and self-medicate with alcohol, cocaine and become dual diagnosed.
One person self medicated for 30 years not knowing they were bipolar.
When people participate in dual diagnosis groups and therapy its 40% more effective than if they just go to a therapist. Important to combine MH treatment and alcohol/drug recovery.
Important to not tell dual diagnosed people to stop their prescribed medications. In AA, self appointed doctors tell people not to take their medications and that’s a serious problem.
12-Step groups need to be accepting and understanding of people with dual diagnosis
DUAL DIAGNOSIS PROGRAMS
1) SHARE in Los Angeles has Double Trouble or Double Trudgers which is 12 step spiritual. Then we do the SOS which is secular. Its been noted that some religions (Agnostics, Buddhists, Hindus) don't have a higher power focus and so people from the religions and cultures will stay away from 12 step programs. So SOS isn't focused on any higher power. Its focused instead on everybody and their getting along and taking responsibility for themselves and encouraging people in their daily lives. It does have its own spiritual focus. I can function in both groups easily, even though I'm more Protestant.
2) Modesto has one of the first dual diagnosis self help program — started by Jay Mahler, run by peers. They do co-dependency therapy and relapse therapy in a self help way. They do NA and AA. ACA meetings are also helpful.
3) Dual Recovery Anonymous is based in Tennessee and follows the 12 step format, but they are separate from AA. DRAonline will send start up packets. There's a DRA newspaper you can subscribe to called "A Vision" P.O. Box 67424 Scotts Valley, CA 95067
4) Harm Reduction. The idea is that sometimes people have a real hard time facing stopping a drug or destructive behavior completely all at once. So instead you look at reducing the harm the person is doing to themselves. It might mean taking little steps, like if the person is injecting drugs to have them do that safely, so they don't get HIV from unclean needles. What really impressed me when a speaker came and spoke about using this approach with people who were addicted to cocaine. So the people said, if I just reduced my use of cocaine by 1/4 then I could reduce the amount of money I'd have to bring in to pay for it. People who were able to do this reduction were so encouraged that they gradually went all the way off cocaine. In the study, more people were able to stop using cocaine using the Harm Reduction method than were able to completely stop by using an abstinence approach.
-the outcomes are good because they empower the people to make choices and to have choices.
-But Harm reduction isn't really going to do the job, in my opinion.
-I work it that way on the street, because you got to work with people where they are at at that time. When people are addicted, they have no ability to be responsible. But I'm a dope fiend, you can't give me a little bit, I start using and I'll be out there doing what I was doing before. Its tough enough for some people to stay clean and sober as it is.
-Also when we're talking about cold turkey vs. harm reduction. Those of us who have been chronically suicidal, its very hard to go cold turkey without dealing with the underlying stuff.
-There has to be something to take the place of the substances or the addiction, like fellowship.
-For some people Harm Reduction works and for others it doesn't.
-Its important there be different avenues for people. Some people have to stop all at once and others have to do more gradually.
TECHNIQUES
-I have a relapse prevention plan and a crisis plan for my MH I’ve worked out with my case manager. The symptoms I have when I'm a little shaky, are written in large print on a sheet of paper on my refrigerator. If something happens and I’m not sure quite what is going on, I can check the sheet and if any of those things are happening, I can call a friend or my case manager and get some help. Examples of symptoms are: losing time, my thinking going all over the place, or my speech getting really weird. Its similar to the Wellness Recovery Action Plan (WRAP) detailed by Mary Ellen Copeland. I think it could work the same way with substance abuse.
-Under the list of signs and symptoms, I have in big letters FOOD, FLUIDS, MEDS because there are times when I need to take care of basic life sustaining things. Other factors that might be added: sleep, exercise and going out into the sun (helps with depression).
-At the bottom of that sheet, is a section I call Distract/Divert. This is a list of right-brain activities and a list of left-brain activities. So if I'm at loose ends and can't get hold of anybody by phone, I look at the list for things to do until somebody gets home. Might include books of jokes by my bedside or phone.
-Folding wash can be helpful because its very systematic and calming.
-Doing the pre-wash or washing a particular window- something that doesn't take a lot of head work and you have the supplies for.
-We've been teaching other consumers to do this planning. We're also working on Psychiatric Advance Directives - how you want to be taken care of when you're not able to say. (NEC-West's previous packet, What Do You Say When NAMI/TAC Says...? contains information about Advance Directives.) These lists are an intermediate step to keep me from going that far.
-We have a Monday afternoon group that meets in a coffee shop to help everybody get up after the weekend and for fellowship. Its like having an extended family that helps both halves of the Dual Diagnosis. My friends will know how I’m doing and will check up on me and I’ll check up on them too.
-It would be good if we worked up a feeling list.
-When I have too many losses I start self-medicating.
-If I starting remembering the losses it can become a crisis. If I don't isolate and I stay with the feelings I can get through it. Stay with the feeling of wanting a drink.
-OR staying with the feelings right before you start going psychotic or manic or suicidal. They're not so different.
-One of the techniques mentioned in the WRAP is a technique called "Focusing". Its about tuning into your body and the sensations in your body and what they're communicating. Sometimes its psychological stuff that our body carries in aches and pain or just feelings. It seems it might be really helpful in Recovery and Dual Recovery. It keeps you in the present moment. When I get psychotic, I am intensely in my head, spinning around different thoughts and delusions.
-We need to be self-responsible. I'm responsible for myself and I'm not responsible for someone else's actions or their feelings. I just have to work hard at being responsible and not harming people by what I say or do - that's enough for the day.
-When I'm feeling really overwhelmed, I begin making a list of stressors -- I can't my get kids into the right summer program, I can't get my meds lined up before the end of the month, etc. For me, if there are more than 4 or 5 of them I know I'm in trouble. I then work to get of these items off my plate. I use a sort of Football model: I either shunt or punt. The object is, if I have a responsibility and I'm feeling overwhelmed, I need to punt it into someone else's lap for a while. If I have a problem that I can't do anything about now, I work with a friend or therapist and I say, look I'm going to shunt this into the space behind your refrigerator for 2 weeks. And if they hear me talking about that problem, they remind me that that problem is already in the space behind the refrigerator.
-Feelings may be signals or they may be a symptom or a memory or flashback. I can put a label on it and put it on the refrigerator and begin to define it and gradually add things to it until it becomes something I can deal with. Sort of like putting a cloud on the refrigerator. and gradually adding enough pieces to it so that it actually falls and becomes rain and rains out of my life.
-We've done a lot of research at NEC on how people get better, recovery, what helps people get back their lives.
-We might be able to use these techniques as a tool with AMI to prevent them from opposing us on expanding forced treatment.
SUICIDE
-Sometimes tough things, like suicide, come up and I encourage people to talk them out.
-In our Peer Counseling training, we have one part where Suicide Prevention, Inc. comes in and talk to us. They are very peer oriented, don't get real clinical. They say its often helpful for people to talk, not so much about what they're going to do, but more about what the feelings are behind the suicidal thoughts and feelings. Sometimes talking about it really does help. I'm not sure if in a group situation that its really a good thing because people are in different places in a group. But one-on-one can be helpful. Another thing they train us in is making a contract with the person if they feel they are going to hurt themselves. Ask them to call Suicide Prevention if they feel like they might hurt themselves OR to wait 24 hours before doing anything. This is because putting it off a little bit, the suicidal impulse and feelings go away and they don't feel like doing it anymore.
-With my case manager, I outlined 5 suicide stages. My case manager will ask me what stage I'm in and he'll ask me if we need to do a crisis alert.
-As a Peer and as a Clinician, I've seen with suicide, isolation makes people more suicidal. So peer support is very valuable in preventing people from hurting or killing themselves. Earlier I wanted to echo what Laurie said about Peer Support. Part of the problem is the MH system doesn't recognize Peer Support and how valuable it can be.
-Our bodies are made up of chemical reactions that interact with outside influences.
-After hospitalizations we have identity struggles that produce a lot of stress.
-Incest, sexual abuse, rape, drugs and alcohol were just layers that were identified before the MH. But which actually came first?
-Most people have a whole syndicate of different ailments and its unusual for someone to get away with just one thing. Child abuse can have a lot to do with recovery.
SPIRITUALITY
-Because of my spirituality, I don't have any fear anymore. My spirituality is also part of my culture. When I turn it over to higher power I start thinking about where and who I was. It took a long time and lots of side effects to find medications that worked for me.
-I can relate to all of you better on a spiritual basis. The psychosis was a spiritual outgrowth of higher knowledge, which we all have.
-When we have meetings (Dual Recovery, Nicotine Anonymous, Cocaine Anonymous, Schizophrenics Anonymous) its the fellowship and comraderie, sitting there with your peers and feeling good. Your spirit is lifted up. I never walk out of meeting not feeling spiritual.
-Everyone has their own personal way of describing what is spiritual. For some its within an organized religion and for other people its the spiritual feeling of being in a fellowship. Its getting in touch with that yearning we all have to be in deep emotional and spiritual contact with other people.
-That's the reason for different forms for DRA meetings. Because of my experience as a child with a punishing God, I didn't want to be around that. In order for me to have an open mind I needed to have someone accept me as I am and then I can improve. In our meetings we let people know they are loved just the way they are.
-I had a breakthrough in seeing the connections and working the feelings out.
SELF HELP and DENIAL
-Sometimes in self help, we enable people to continue their addictions or facilitate addictions.
-This year I worked with someone who was very dually diagnosed and was heavily into denial. This person was in a position of authority and also had the ear and the empowerment/enablement of the monitor. They were doing their job OK for the funding source but they were stealing and doing other things and was blaming them all on me. I'm feeling generally disempowered and lost my confidence. I'm having a hard time trusting the people who enabled them, feelings of guilt for letting this go on and on. I'm part of the problem and don't have a solution.
-How do you break through the denial in a self help way?
-Is there a way we can shortstop things before they get totally out of control?
-How would it be shortstopped if the person didn't have a label?
-We keep wanting to give people chances and chances and try to give people ways to work out their issues.
-If you have to fire someone, there's still the aftermath. There's a lot of residual anger, distrust and disrespect.
-When you give people chances who have MH issues, it seems less enabling but when there's issues of drug addiction it can get out of hand.
-What are some self help approaches or responses when somebody is in a position of responsibility?
-How do you get out of the triangle of Victim-Rescuer-Persecutor?
-It's important to look at the situation, and to talk about it among the people in the group who were involved.
-Accept that it happened. You need to keep yourself going for yourself and not react to the fallout
-It took a long time for one group I was with to make any rules about being under the influence while in the center. It took a lot of crises happening before any thought was given to that. So the drop-in center became a great place to hang out and do drugs. We have to look at the techniques and approaches we use.
-I think its important to have a number of things going like Dual Recovery groups and 12 step calls.
-At a self-help center, some people got into leadership roles and really abused the power they had as leaders. Just because we've been oppressed and been MH clients or poor or whatever the oppression is, does not mean we're immune to oppressing other people. We're not immune to abusing power. I think we need to learn how to use power appropriately and how to recognize when its not being used appropriately.
-We shouldn't hesitate to call people to task for it just because they have diagnosis--its not easy though.
-At a Dual Diagnosis Vocational training in SF, the issue of power and leadership and employment came up and that there need to be rules and guidelines. There are consequences when a leader can't do the job -- that affect other employees. -- and include hospitalization and firing and shouldn't be any different than mainstream.
-In Tough Love and Al-Anon the person has to go through suffering the consequences because if they accept a role and responsibility, employment, leadership. Why not have a set of rules that say: If you do this____ this is what will happen_____________.
-Empowering and accepting responsibility are also part of personal growth and a reality.
-What makes self help different from other programs? For me, its alleviating our distress. We define what we need. Isn't that what empowerment is about?
-Abuse of power can be substituting one addiction for another -- this happens when the feelings have not been dealt with.
LANGUAGE
-I don't like the term Dual Diagnosis because its another label. Can we turn it around to recovery rather than adding more stigma?
-Dual Diagnosis seems to be more connected to the 12 step groups where they tell people to go off their meds. Dual Recovery is with Tim Hamilton from Tennessee, where we all understand we're working towards recovery and that we don't force people off their meds.
-Its multiple issues. In the Asian community when someone comes for help its usually a physical problem that brings them there. MH and or substance use come out later, if they come out at all. We shouldn't be using the word Dual because it really is Multiple Recovery.
-Why are we using recovery to mean so many different things? Why can't we come up with our own non-medical, non-already-defined term? Self help means one thing in one place and another in another place. I don't mind the concepts but its really confusing. The term resiliency was used at a youth conference. The idea that people go through hard times and they bounce back because they have other tools, strategies, resources, other communities.
-For me there is no recovery - I have a lifelong serious mental illness that I'm going to have until I die and I don't like the term.
-One issue in the Surgeon Generals' MH report on Culture, Race and Ethnicity, was language and how it plays into stigma. How we self label and self-stigmatize even within the consumer movement.
-In my work with Asian-Pacific Islanders, one size/label does not fit all.
-Need to come up with more empowering terms.
SIMILARITIES
-When people are diagnosed with MI only, they are much more likely to be in a medical setting with professionals and medications. When people have a drug or alcohol problems or dual diagnosis, it seems that its the peer support, fellowship and sharing their stories that is real important. Perhaps that is also important for people with MH issues too.
-It doesn't seem to matter what the label is, we all seem to share the experience of a lot of pain, loss, lack of relationships. Then that comes out as psychosis, or drinking or doing cocaine, becoming manic or suicidal.
-MH and Dual recovery may have the same issues: emotional issues and interpersonal issues underlie both. MH problems are when severe stress and severe emotional difficulties interfere with our thinking. In the other, we take alcohol or marijuana to relieve those stresses and difficulties. What's underlying both is emotional stress and the lack of relationships. As long as we medicalize these problems and say one is medical and one is chemical, we obscure the underlying issues. They look like two different problems but its really just one problem: our problem with living. That's why self help can help both because it helps with our core problem: who we are and how we can find meaning in our lives. That's why we're promoting the Empowerment model of Recovery as a model that is helpful for both kinds of problems.
HOUSING ISSUES
-A person who is dual diagnosed coming off the streets, there is nothing for them in terms of housing.
-We hear a lot about the homeless mentally ill, but we which came first the chicken or the egg? Was the person homeless and then because of the stresses became mentally ill or because of the mental illness they ended up losing their housing and becoming homeless.
-I think the way NEC can get involved is in looking at the policies that have made housing worse. A lot of subsidized housing has gone off the market. The subsidized programs were time limited -- sometimes the government loaned money and once the money was paid off, the owners could raise the rents up to market rate. There's also an economic factor going on here -- housing is also a business, its an investment and it becomes competitive -- there's always someone else who can afford more than I can and they will get the apartment and I won't.
-The government wants people off the street, how can we help them? There's so much red tape. How do we help them get through the red tape?
-The State Planning Council (Hawaii) has focused on contracts for people with mental illness or dual diagnosis. There is a set aside of units and Section 8 for people who come to the attention of the ACT teams. Right now our ACT teams are not at the stage of forcing treatment on people. When people are in public housing, we try to link them up with other consumers to help keep from losing their housing. We have a lot of people come to Hawaii and think they can live on the beach. 40%of people at our homeless shelters also have a diagnosis of mental illness. Adult MH Division is working individually to resolve problems in housing. A social worker goes out and offers help, sometimes, the homeless person will accept a shower and a safe place to stay and then later move into a post-homeless shelter. The Chief of Adult MH holds meetings once a month with the community to get input and comments. At those meetings, people can bring attention to individuals who are at risk and need help as well as exchange resource information and strategies.
-It sounds like services are about helping the individual one step at a time as the person is ready. That makes a big difference. Sometimes services are tied up to medication compliance. Bundling of services - in order to receive therapy, housing, Social Security, you need to take your medications. That's very coercive and its an issue we've been working on at NEC in quite a few states.
Ideas for next teleconference:
Housing
Self Help
Prosumers
Continue on Dual Recovery
-It would be nice to have some sort of solution when we go into the caucus at Alternatives.
-We should have a national conference on Dual Recovery/Dual Diagnosis
-Perhaps there could be a caucus on Dual Recovery or it could be part of the NEC-West Caucus.
Notes Taken by Carol Patterson - Many teleconference particpants shared personal stories, in the tradition of Dual Recovery. To preserve confidentiality, I have not connected names with comments.
Dual Recovery Packet - sent out in hard copy to those who request at 1-888-746-4663 PIN 9378 toll free or 925-681-0880 local.
1) July 6, 2000 teleconference notes (above).
2) Dual Recovery Anonymous Packet
Getting Started in Dual Recovery
3) Secular Organization for Sobriety Packet
Craig M's Monday Night Sobriety Tool Collection
4) Harm Reduction Packet
Definition
Tenets
Principles
Relapse Prevention, It's An Inside Job
5) My Troubleshooting Worksheet
7) The Drama Triangle
8) Victim and Rescuer by Shakti Gawain
9) Wise Woman's Stone and Senility Prayer (below)
The Wise Woman's Stone
>From the Best of Bits N Pieces
A wise woman who was traveling in the mountains found a precious stone in a stream. The next day, she met a traveler who was hungry, and the wise woman opened her bag to share her food. The hungry traveler saw the precious stone and asked the woman to give it to him. She did so without hesitation. The traveler left, rejoicing in his good fortune. He knew the stone was worth enough to give him security for a lifetime.
But a few days later he came back to return the stone to the wise woman. "I've been thinking," he said. "I know how valuable this stone is, but I give it back in the hope that you can give me something even more precious. Give me what you have within you that enabled you to give me this stone."
The Senility Prayer
God or Goddess, Grant me the senility to forget the people I never liked anyway, the good fortune to run into those I do and the eyesight to know the difference.
Submitted by Nancy Thomas