I spent the day at the quarterly council meeting of our Department of State Health Services (D.S.H.S.) and am in total wonk mode right now. (W.O.N.K.) Mental illness was the big topic on the agenda and there was good news and bad news and a lot of news I don’t begin to understand.
I’ve been covering health and human services meetings for 3 years now on the job, where I don’t testify or bomb the building, and afterwards used to walk around filled with angst and asking myself if I actually heard what I thought I heard, and who can I find to bounce this stuff around with, who really cares about mental health policy? I guess we’ll find out! I know policy is like reading vanilla and I won’t make it a regular habit, but it’s worth hollering about how the world really works, seeing it play out changes puzzled people for the better, how what goes on in officious settings is connected to things you do everyday, and all you’re not allowed to do.
I plan to do a few critical posts on the SAMHSA Mental Health Transformation rollout, and keep track of it going forward. My state is one of nine total that got the five year Transformation grant, and these 9 states are supposedly laboratories where soul satisfying system reform is now going on, and will be models of best practices for the rest of the country.
The 2007 invitation only Transformation Symposium will be held in Austin, where a panel of SAMHSA overlords will advise Texas agencies. Day three’s agenda includes Kathryn Power who will speak about “the role of consumers in Texas mental health transformation.” Consumers have a role? What luck for consumers! Does it include puking my guts out?
I also have to mention the Substance Abuse Prevention and Treatment Block Grant, to be used in compliance with SAMHSA’s federal priorities, which are paternalistic enough, but Texas goes one better by instructing the state director to prioritize smoking cessation programs for the S&P mentally ill. Are they unaware of recent Yale studies showing smoking cigarettes helps untangle schizophrenic thought processes? No one mentioned it, my tongue bled waiting for someone to call out the astounding entitlement of hypocrites who assuage their own needs while claiming it’s an altruistic act that we’re just too mindless to take on our own behalf.
And finally, I heard truly ominous language today, “peer to peer education and counseling certification,” not one expert used the term survivor or ex-patient, but they have a new word with reference to “inclusion of the consumerfamily voice. ” Yes, that’s one word, the consumerfamily voice. More on that twisted formulation after some research (did I actually hear what I think I heard, all day?), I wanna see that in print, meanwhile, some good news, it’s time for that:
Residents of the scandal-rocked Texas Youth Commission (TYC) received referrals through an ad hoc counseling program at the request of the Governor’s office. DSHS set up a 24 hour help-line to provide assessment and brief trauma-focused counseling services to youth who experienced physical, sexual and emotional abuse while residing in a TYC facility.
With training from DSHS, TYC staff conducted debriefing meetings at each of their facilities and sent letters to youth currently on parole, to educate them about the common effects of post-traumatic stress and the counseling resources available to them. The help-line received 520 calls. Youth who self-referred were authorized for five sessions with a licensed mental health provider. DSHS contracted with 37 local mental health authorities to provide psychological services at all TYC facilities and in communities where youth on parole reside. Psychotherapists will continue to provide counseling through the summer.
And, one more — the Texas School Health Advisory Committee (TSHAC), was created in 2005 by the legislature to educate school kids on clean living, no fun and healthy exercise. Just another braindead catholic agency that has no reason to exist, to wit: Their recommendations to the Council today:
Encourage state agencies to utilize the expertise of the TSHAC when promulgating or amending rules and regulations in areas impacting the health of students in schools.
Schedule an annual meeting with the DSHS Council to present goals, initiatives and strengths of the TSHAC.
Obtain support from the DSHS Council to research and apply for grants.
And then something wonderful happened: Council members
asked if it was possible for TSHAC to develop training for teachers in the proper recognition of aberrant child behavior as indicative of familial abuse and neglect. The request was well received by the TSHAC members who vowed to proceed with developing a mechanism of identifying signs and behaviors that correlate to a child experiencing maltreatment.
Baby steps, but a big deal here in Hell on earth.
Are they unaware of recent Yale studies showing smoking cigarettes helps untangle schizophrenic thought processes.
I knew this way back years ago when I worked with people with schizophrenic thought processes. I had to work a lot at undoing damage by “well meaning” people putting guilt trips on people who were simply trying to survive as best they could. I let people know they DID NOT have to feel guilty if they did not quit smoking and that I knew that cigarettes helped them feel better and maybe that was more important than the bad things tobacco does. Quality of life and all, you know.
And finally, I heard truly ominous language today, “peer to peer education and counseling certification,” not one expert used the term survivor or ex-patient, but they have a new word with reference to “inclusion of the consumerfamily voice. ” Yes, that’s one word, the consumerfamily voice. More on that twisted formulation after some research
This is something I’ve wanted to do a post on and I’ve done some preliminary research, but frankly my brain is fried. I look forward to what you come up with. One tip: look towards Georgia. Their program is supposed to be the role model for the country. I’m in touch with a couple of “Certified Peer Specialists.” and they are cool people who are survivors/ex-patients. My question is, after discovering many of these people are put on ACT teams is how many “consumers” are involved in coerced treatment?
I’m actually going to go through the certification training with GREAT mixed feelings. I already have worked as a social worker for many years in mental health for twice what they pay a peer specialist and I don’t think I want to be a second class citizen in social services which I imagine is what will happen if I went into the standard social services agency. (I’ve already been offered the chance of a job in such a place with professed enthusiasm about my radicalness, but I doubt very much how it would play out)
At this point I’m doing it mostly to perhaps help out a radical, non-medicated “bipolar” friend who is starting a non-profit with the intention of having a place for anyone with any mental health issue, diagnosed or not to hang out without fear of judgment–medicated or no–and a place to educate to alternatives. This would be voluntary on my part but the certification could give legitimacy to my friends work. (she isn’t being paid at this point either)
I need to start going to policy making meetings too. I can’t seem to motivate as I live in a rural area and the meetings are all held about a 40 minute drive from me.
Policy is my chocolate! Not vanilla at all. Sheesh
. Virginia has a transformation grant, that should tell you all you need to know about how well that’s working out, but if not, I will share more later…
In October of this year, all patients in state hospitals in Virginia will be banned from smoking, all employees too. There was no debate, no listening to objections, just a fiat. The state hospital directors don’t want it, but who cares what they think, right? They only have to run the places.
In addition, at our lovely Central State Hospital, AKA our snake pit in chief, health conscious psychiatrists are restricting the caloric intake of patients over their objections. You would think our P and A would be objecting, filing suit, something, but no, they are not.
Also, many of our state hospitals, if not most, restrict caffeine and there is a black market in instant coffee at our closest state hospital. Oh, and even better, because 1 person choked to death at a state training facility for people with intellectual disabilities due to negligence of staff and the family won a million dollar suit, rather than train staff not to be negligent, oh no, couldn’t do that, all residents of all state hospitals and training centers now have to eat pureed food at every meal. Way to respect individual choice and save the state money.
The consumer/family voice thing doesn’t get a lot of traction at our state’s mental health planning council, they have to use that term out of our hearing. Really, our state NAMI is so anti-consumer/survivor that no one can pretend any more that they are allies with consumer/survivors. Although, next time someone asks you why you can’t just get along with NAMI, and believe me someone will, tell them there is no more reason for you to work with NAMI than there was for the NAACP to work with White Citizens’ Councils, yes they were both concerned with race, but not on the same side exactly…..
Gianna, some of my best childhood stories are about gramma and her cigarettes. I wrote a bit about that here: Subsidize this, bitches. It’s cruel to take them away in the face of such desperate desire, really the only thing she wanted and that could make her move.
Hymes, policy is my chocolate too, you’re really helping me validate that tendency. So I just got off the phone from TWG, the transformation work group, the person who answered used the “consumerfamily” one word term, so I gave her an earful. She was okay and told me about a new xformation team member, the director of consumer services, held by a woman I’ve heard speak impressively before committees. Her name’s Valarie Garza which leads to 21,000 google hits I’m about to look into. She’s going to call me when she gets back from Washington, I may have a foot in the door here, if there’s a place for me.
The worst hospital I was ever put in was in at Buffalo General Hospital, and they unbelievably had a smoking room for patients on the unit.(This was only about 4 years ago) They also had vending machines with caffeinated drinks outside the unit that they would go and buy for patients if they had money. The food there was better than what you can get in any decent diner. But the place offered no activities at all except replay of the same videos all day, and there were no working laundry facilities. I was sent there with only the clothes on my back- so not having clean clothes for several days was miserable, and since I don’t smoke and didn’t have money for the vending machines- there was nothing to do. There was one doctor for their four psych units, and the place was a fucking snake pit. I think people should be allowed to smoke if they want to, but it’s what they did to keep people busy and quiet, because they offered nothing else. they were being challenged about having such a smoking room, and they were ready to fight tooth and nail to keep it. They just couldn’t manage to provide humane and competently delivered health care…guess we can’t have everything.
Give me the smoking room and the soda machines, I don’t believe in humane and competently delivered health care. No, seriously, I think there probably is a correlation between allowing smoking and having nothing for patients to do, but we should have both.
FlawedPlan, I am really glad you are finding someone who speaks your language in your state. I don’t know the name but I wouldn’t in Texas.
I don’t know hymes. I’d prefer not to have my face shoved into a bare mattress with blood smears and food and god know what else from previous patients while being held down and injected for refusing a strip search. I can’t do without the diet Pepsi if that’s the trade-off.
I can’t help thinking how ridiculous these restrictions are, especially considering the damage the psych drugs can do to one’s health, much more quickly than cigarettes. I actually knew a woman who got kicked out of her drug rehab program (she was a crack addict) because she snuck a cigarette! Where are the priorities?
I hope you know I was joking TMA. No abuse, no force, no unnecessary restrictions on freedoms of everyday life. Patients with lung disease can go outside and smoke at our local hospitals but psychiatric patients can’t, it’s ridiculous. Yeah, crack addicts shouldn’t smoke cigarettes…WTF?
G-d save us from the health facists.
Yeah, I knew. I was just being my usual sarcastic self.
Bummer time. Valarie Garza is a parent who fought for treatment for her child, and is quoted extensively in the advocacy literature I’m reading. She defines CONSUMER as a person who has accessed Mental Health/Behavioral Health Services for themselves or A FAMILY MEMBER.
So you see, consumers have the same rights and opportunities as family members! They’re indistinguishable! But for some reason consumers can’t get on our state mental health advocacy board and family members can. Huh.
Well, at least we may know something about the source of this consumerfamily term of enmeshment.
I am gobsmacked. Recovery has to be about autonomy and individuation, self-determination and establishing healthy boundaries between self and family.
I’ll tell you guys the term that has always worked for me, is “identified patient.” This is the eyebrow raising clinical term I use in real life and its implication is clear; I may be the identified patient, so what’s that make you?
Are you next?
Are there unidentified patients in this room?
ALWAYS have to use the term “identified patient” when talking about families who are intrusive in the mental health care of one particular family member. The person who ends up totally cracked is rarely the one who is the “sickest”, just the one who can’t take the crap anymore…and sometimes that’s a sign of underlying health.
These steps to allow family members to get involved or even over-step the wishes of the “identified patient” in the family, are appalling. A lot of times, families that are screwed up have a big psychological investment in keeping their scapegoat, or “rescuing” their victim.
My comment there was a little harsh. I’m reading as I write too much. Turns out Ms. Garza was caring for her juvenile child and gave up custody because she couldn’t afford his care, and defines parents as consumers because they are the ones who have to navigate the mental illness system on behalf of their kids. And her son’s story doesn’t end good, so the passion of her advocacy is understandable. At any rate I’ve learned long ago not to be a hardass when it comes to coalition-building, but I get so excited at first, with that familiar and unwarranted hope that won’t go away.
I’d just like to comment here on the Peer Specialist issue. I am – what would you call it? – a mental health “survivor” or an “ex-patient”. I’d rather call myself “in remission” since most mental illness doesn’t go away. I am VERY VERY interested in becoming a Peer Specialist, and here is why. I know for a fact that talking to and receiving help from social workers, psychologists, psychiatrists, or any other “mental health professional” can be anathema to a mental patient. For one thing, the science is so inexact that just the quest for the proper treatment engenders mistrust in the patients. I also know for a fact, because I’ve been there, that it is difficult to believe the professionals really care. Not to insult anyone, but having to pay for someone to care about you is kinda like paying a prostitute for love, ya know? If I become a certified peer specialist, I couldn’t care less if the position were volunteer or paid. I just want to help others who are going through the hell of mental illness.
I have known Valierie Garza for several years, and believe me, she knows from whence she speaks. I just wish someone knew how to get hold of her because she saved my son more than once frombecoming a “mental health consumer”. I served on a panel with her in San Antonio in September of 2006 answering questions from mental health providers pertaining to how patients view their treatment. Believe me, as an ex-smoker (ex thanks to a mental hospital), I brought up the subject of smoking’s normalizing brain waves in those with schizophrenia and bipolar disorder. Seems suicide is preferable to possible cancer as an answer to that for health care providers. Oh, well.
Thanks Mags. I’ve seen some of the reports from the big Transformation fiesta that happened at the Capitol in August. They had a peer counselor from Howie the Harp do a presentation! I don’t have powerpoint so can’t read any of the documents at home, but am wanting a way to see how that went.
http://www.texashealthinstitute.org/news/index.htm
Feel free to keep me posted on your developments in peer counseling, there are some great models out there. Are you in Austin? Did I see you at the MHMR redesign last night? If you want to connect feel free to email me at robinplan@sbcglobal.net.
I understand Ms. Garza works at the TX Health Institute but she travels all the time. I’m planning to attend the October 19th Transformation Work Group, she’ll be there. I’m glad to hear of your good experience with her advocacy. I only heard her speak once in a day of speakers and I was impressed, I ran up to her afterwards and she gave me some handouts. I’ve been really sad that Mike Halligan left Austin and moved TX Consumers to Dallas. If there’s a gap, we need to step up and fill it.
Thanks so much for the response, flawed. I am very hopeful that I can attend the Peer Specialist training 10-29 through 11-2. Yes, I’m in Austin, but you didn’t see me last night since I’m not privy to what MHMR does….. yet (tee hee). I miss Valerie so much- we became very good friends when she was with the Children’s Partnership, and she promised to keep in touch.. grr. Just to fill you in on a little about me: I have been in treatment for major depression for 22 years, and recently received the little added spice of BPD. Don’t run from the room- I’m not typical. I’m the lonely overcontrolled type, not the violent acting out type.. ha, ha. My son is an XXY male and has been in the special ed system since he was 18 months old. He is now 18 and in his last year of high school, mostly thanks to the help Valerie and Children’s Partnership gave us. I’m really ready to start giving back some of what I’ve received over the years. I’ve been so LUCKY. I have amazing doctors, I’ve been through DBT twice, and that changed my life tremendously. Anyway, I would love to connect with you, and you can email me at MCronk4475@aol.com. Thanks again for the reply.
Mags
I’m glad you’re in Austin! I don’t run from anyone who identifies as BPD, I’m cynical about anyone who would, and more fearful around those who haven’t been given a psychiatric label than those of us who have.
I did a post on Peer Specialist Sherry Mead a few weeks ago, here:
http://writhesafely.wordpress.com/2007/08/05/desperate-times/
I’m interested in your take on her approach.
wow wow wow, flawed. That’s pretty powerful stuff. I tend to agree with you on a LOT of it. I don’t give a flying… uh.. what someone’s diagnosis is. Those of us who have been in therapy for a hunnert years have a notebook full of diagnoses and a medicine cabinet full of pills we never finished taking. I’ve been variously bipolar, depressed, BPD, and just plain over-hormonal (that was a WINNER of a psychiatrist). The bottom line is these people are in PAIN, and I have found ways to keep myself out of pain most of the time. These ways may not work for others, but I sure want to share it. I’m sorry about the experiences others have had with DBT. I took the course twice at Shoal Creek, and I thought it was amazing. Here’s my take on DBT. It CAN be invalidating if it’s not done right, but it can be VERY liberating if done appropriately and in a caring situation. Just like any therapy, you take from it what you can use and trash the rest. It IS incredibly difficult stuff to work into your life as a habit .. so different from what so many of us were raised to expect and feel we DESERVED. As one who was subjected to much mental, emotional, and physical abuse as a child (all the while being raised as a wasp princess – can we say DICHOTOMY????), it challenged everything I ever believed in. It’s hard to give up lifelong dreams and fantasies and realize that reality isn’t like that. However, once I was able to do this and figger out I really like myself the way I am – warts and all, my life has become immeasurably better and more insane – in a totally fun way. I don’t worry about people judging me anymore, and if I am in a situation where I feel I’ll be judged, I’ll act my most outrageous, wear loud clothes (and I’m not built like Barbie), etc. I would love to see those who hurt so badly able to pull just one- JUST ONE – happy thing out of my efforts to help them. Did I answer your questions? I hope so. I get so wordy…. it’s old timer’s disease. The one other thing I wanted to address was this- some of us DO have the chemical imbalance thing going- which came first the egg or the chicken is anyone’s guess. I personally found out much much more of my illness was psychological than physical, and I push my DBSA cohorts to INSIST that their doctors not put everything on neuro-transmitters. There are a lot of crazy-making situations and families out there whose chemicals are normal or near normal.
I’m glad DBT was successful for you. I talk smack against all of it, including psychotherapeutic schools, but it all comes from devotion and being a student of the human condition. I’m for whatever works, and the self-awareness and courage to stand up and say this doesn’t when it doesn’t. What we need most is community, working together to build each other up. The blogosphere is a big part of that, I’ve met so many lovely people and treasure these finds.
I’m off to a meeting but will be back tonight, looking forward to connecting with you soon.