NEC-West Teleconference
Thursday, April 6, 2000 5:30 pm PST
on
What Do You Say When TAC or NAMI Says...
Present:
Gail Green, Long Beach, CA; Ann Tychinin, Marin, CA; Elizabeth Elftman - San Francisco, CA; Glenn Reed - Los Angeles, CA; Ron Schraiber - Los Angeles, CA; Richard Spies - Woodland, CA; Nancy Thomas, Alameda, CA; Rob Chittenden - Eureka, CA; Jim Hoag - Eureka, CA; Dawn Davidson - Weimar, CA; Jim Fields - Menlo Park, CA; John Hood III - San Diego, CA; Dan Fisher - Mass.; Sharon Yokote- Honolulu, HI; David Oaks - Eugene, OR; Roger Summer - San Francisco, CA; Mark Karmatz - CA; Kathie Zatkin - Berkeley, CA; Carol Patterson - San Francisco, CA; John Dorsey - San Francisco, CA; Lynette Peraza - Long Beach, CA; Art Rolfo - Long Beach, CA; Chuck - Long Beach, CA; Pat Risser - Portland, OR
What Do You Say When TAC or NAMI Says...
"My brother was doing so well and then he stopped taking his meds and ended up in jail"
or
"She refuses treatment and ends up homeless on the streets"
TAC refers to the Treatment Advocacy Center
NAMI refers to the National Alliance for the Mentally Ill
Both groups have a national agenda of expanding involuntary mental health treatment.
The following are the major arguments raised during the teleconference but do not necessarily reflect the views of NEC-West:
1. Join NAMI and/or TAC and tell them what you do and don't like. You can also mention that you're member when you testify and by so doing you show that the membership is divided.
2. Avoid demonizing NAMI/TAC.
3. Look for allies in the two organizations locally who might be more aligned with us and talk to them.
4. Acknowledge that we and NAMI/TAC want some of the same outcome: people with psychiatric disabilities to be healthy and happy. We just have different ways of going about it.
5. Look for issues where we have common ground: for example, the need for affordable housing and voluntary services in the community.
6. Forced treatment drives people underground and they avoid treatment in the future.
7. Be polite and avoid being perceived as antagonistic.
8. Study their tactics and use the same tactics they use.
9. Tell your own story - particularly if you were denied treatment or didn't receive help. Stories like: I went canoeing and my meds got wet. When I tried to get a new prescription at a different clinic, they thought I was selling my meds and refused to give me treatment. So now this is in my records and it speaks louder than my own words when I go in for treatment.
I became homeless because I got a three day notice while I was in the hospital and my landlord would not accept my rent after I got out.
For every story that NAMI tells about something horrible happening, a hundred people die in treatment.
10. Stress the importance of having hope and how the Medical/Biochemical model destroys hope.
11. There are a lot of people with general medical illness who stop doing what they need to do to keep themselves well. We don't track them down and throw them into jail, or throw them into the mental hospitals. We let them suffer the consequence of not taking care of their high blood pressure, or not taking care of their diabetes. It seems only in the field of mental illness do we insist on putting people away. In response to that I know people who have not taken their medications, who did not see that there was recovery possible, that they could have quality of life...
12. Tell them about the need for having choices about treatment.
13. How Advance Directives can promote choice for c/s/x. The downside is that you have to be deemed incompetent in order for it to go into effect, which you usually want to avoid. Can use a form at http://www.bazelon.org/advdir.html or contact Protection and Advocacy, Inc (CA) at 1-800-776-5746
14. Regarding the issue around people not taking meds, mention the article in Schizophrenia Bulletin Determinants of Medication Compliance in Schizophrenia "The belief that non-compliance is a direct result of disease processes in schizophrenia, dominates the clinical perception of non-compliance for these patients. Reported non-compliance rates for schizophrenia however are in the middle range of those reported for other common medical disorders. Medication non-compliance rates of 51-71% have been reported for patients with arthritis, 54-82% for patients with seizure disorders, 20-57% for patients with bipolar affective disorder, 19-80% for patients with diabetes, half the patients in treatment for hypertension drop out within one year and only two thirds of those who remain take adequate medication." Now their family members have begged them to get treatment and they don't do it. Non-compliance isn't so unusual and its not specific to people who are diagnosed with serious mental illness.
Sometimes having facts isn't as important as having an emotional story that touches the heartstrings.
15. Don't negate their personal experience but ask, "Wouldn't you rather have services in the community that you can choose from rather than Crestwoods (IMD's)?"
16. Talk about how self help has helped.
17. We need to have programs that people can get into without having to be in a crisis. So they can get help before the crisis. Most people who are mentally ill don't want to be in crisis.
18. Remind them that involuntary treatment is not a permanent solution for homelessness. At best it is sweeping people off the streets, not treating them as human. This solution isn't a way to help homeless people access treatment it makes us want to stay away from treatment. Homeless people need homes.
19. How voluntary services foster trust.
20. Tell them about PACE (Personal Assistance in Community Existence)
21. MH treatment is set up to give help only after damage has been done. Sometimes the damage is done by the treatment.
22. We need to be communicating with our local politicians.
23. Sometimes the meds don't work even if you're taking them and you end up in the hospital while they find another medication. You lose part of your life for a while.
24. There's an assumption that if one medication doesn't work you have to find another one. A lot of times there are alternatives and if they are started soon enough they are effective. Alternatives like peer support, holistic approaches, acupuncture.
25. Mental Health Courts are not an answer. This is substituting force for actually providing services. When NAMI says "What about all those in prisons with emotional problems?" We need to get educated about the prison system so that we can advocate for everyone in prison having access to good services. But what kind of services do we mean?
26. There was an editorial in the American Journal of Psychiatry, December 1998, that the long term use of neuroleptics can cause changes so severe to the brain, that they are visible to MRI and CT scan. Our opponents are admitting this. We need to take the offensive and say some of our members choose to take these meds as prescribed, but you are pushing a drug that can cause persistent brain changes that make these drugs addictive. Then when you try to quit, you flip out which is then used to justify The Chemical Crusade. (See attached article from Dendron.) There is more information on this in the latest edition of Dendron to get a copy call 1-877-MADPRIDE
27. Use sound bites to get the messages across.
28. NAMI uses the argument "Those old medications had lots of problems but these new ones are so much better." I tried these new meds and they made me nuts, I nearly had to take time off from work - these new meds have problems, too.
David - When you quit these newer meds suddenly, you get worse emotional problems than if you quit the older ones. The new meds really addict people and the literature shows this is worse with the newer "atypicals".
29. Our main audience is not the die-hards in NAMI, and I think that it is a minority in NAMI that are extreme, we can't change their minds. We have to get to the general public first and the middle-of-the-road people who are not set on this. The people we need to reach are reasonably afraid of their next door neighbor and the government is not helping . I think they have some legitimate points.
Notes prepared by Carol Patterson and John Dorsey
The What Do You Say Packet contains:
1. Notes from the 4/6/00 teleconference "What Do you Say When NAMI/TAC Says...? (above)
2. Article from Dendron #43, "The Debate is over: Forced Psychiatric Drugging CAN Alter the Structure of the Brain"
3. PACE brochure http://www.contac.org/pace.htm
Since there was much interest and discussion during the 4/6/00 teleconference about Advance Directives, the following are also included in this packet:
4. Article from the NEC newsletter, "Advance Directives are what you make them" by Xenia Williams http://www.power2u.org/selfhep/directives.html
5. Article from the NEC newsletter, "Making Advance Directives work for you" by Dan Fisher http://www.power2u.org/selfhep/directives_work.html
6. Bazelon Center Advance Directive form http://www.bazelon.org/advdir.html
7. Article By Robert D. Fleischner, "Advance Directive for Mental Health Care: An Analysis of State Statutes" http://www.protectionandadvocacy.com/adintro99.htm
8. Sample Crisis Card