The Changing Face of NAMI

 

Mike Fitzpatrick Is Stepping Down From NAMI

Mike Fitzpatrick Is Stepping Down From NAMI

The National Alliance on Mental Illness is searching for a new executive director and one of the first challenges that its next leader will face is helping determine who NAMI represents and what principles it supports.

Mike Fitzpatrick, who has successfully led NAMI with a steady hand for ten years, announced in January that he is stepping down. He has done a great job.  The NAMI that his predecessor will inherit is a much different organization from the one that Mike took over  in 2004.

In recent years, more members with mental illnesses have joined NAMI and they have brought with them a different perspective from the group’s traditional base — parents of persons with diagnosed mental disorders.

 NAMI was formed in 1979 by parents, mostly mothers of  “consumers.” In the early days, some critics spoke bitterly about the  “NAMI Mommies” because the critics objected to NAMI’s  “parental” views, especially toward involuntary commitment and forced medication.

NAMI’s national rival, Mental Health America, was formed in 1909 when former patient, Clifford W. Beers, exposed abuses that he and other patients were suffering in state mental hospitals. From its inception, MHA has been a consumer focused and driven organization.

For many years, the differences between NAMI and MHA were stark. As more and more consumers have joined NAMI,  the gap between them has narrowed.

A simple way to see this shift is by looking at NAMI’s complicated love-hate relationship with Dr. E. Fuller Torrey, one of psychiatry’s best known and lightening rod figures. In the beginning days of NAMI,  Dr. Torrey was a much beloved NAMI spokesman. He traveled across the nation without charge, speaking at fledgling NAMI groups, and he donated the hardcover royalties of his book, Surviving Schzophrenia, to NAMI.

His influence began to wane after he launched the Treatment Advocacy Center, although NAMI officially endorsed Assistant Outpatient Treatment, one of TAC’s primary issues .

In 2002,  NAMI invited Dr. Torrey to give the keynote at its annual convention but a decade later, NAMI’s convention organizers were warned that if Dr. Torrey was invited to speak at its national convention, consumers in NAMI would protest and walk out.

This year,  NAMI has invited author Robert Whitaker to speak during an afternoon session at its convention June 27 to 30 in San Antonio. Whitaker’s most recent book, Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America, argues that  psychiatric medications are not only harmful, but in some cases can cause mental disorders.

Dr. Torrey criticized Whitaker’s book in a review that you can read here. More recently, blogger Susan Inman, expressed fears in a Huffington Post editorial that Whitaker’s views were harming individuals with mental disorders. Whitaker has his supporters and has developed an especially devoted following among consumer groups that question the “medical model” and Big Pharma’s influence. Here is a  sample.

For me, this shift away from Dr. Torrey’s views and the welcoming of Robert Whitaker as a NAMI speaker reflects how NAMI’s membership — or at least its board of directors  - has moved away from its traditional parental based roots. I would not be surprised if NAMI soon drops its long-standing support of Assisted Outpatient Treatment.

Whether you consider this shift a good or bad thing clearly depends on your individual views about such issues as AOT,  medication, involuntary treatment, Dr. Torrey and Whitaker. The point of this blog is simply this: NAMI’s views are shifting.

Because of the Newtown shooting, we are at a tipping point. Local, state and national politicians are talking seriously about the need to improve community mental health. Sadly, many politicians are hustling through laws that will increase stigma by drawing-up lists of consumers and reporting them to federal law enforcement. Laws are being passed that threaten traditional safeguards that protect confidentiality between a patient and doctor.

Now, more than ever, all of us concerned about improving mental health need a strong national voice – and that means we need a strong NAMI. There should be room at the table for all of our different voices to be heard. But it will take a skilled leader to blend such divergent voices into a unified one that speaks for the benefit of us all through NAMI.

 

MESSAGE ABOUT COMMENTS TO THE BLOG

PLEASE ABIDE BY THE COMMENT POLICY OF PETE EARLEY INC  

Persons who post personal attacks against others will have their comments deleted. Persons who flood the page with repetitive comments will have those comments deleted. State your case intelligently and respect others. Finally, the posting of repetitive comments under different false names will result in the comment being deleted and your right to comment being curtailed.

Thank you for your cooperation.

About the author:

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

Learn more about Pete.

  • Okjean

    Pete, again thanks for lending perspective. I’m not sure how it is in other states but as a NAMI parent in OKlahoma I’m am feeling completely ignored by the “system”. My efforts to advocate are met with nothing more than misplaced sympathies. I’m totally frustrated and NAMI isn’t helping. Meanwhile my child is left to his own devices. The recovery model people say “it’s his choice.” Let me get this straight. fifty percent or less of the people who need menatl health treatment seek it. About 50 percent of people will never have insight to their illness. but we expect everyone to be in charge of their own recovery. No wonder I am frustrated.

    • twopaul

      The thing to bear in mind as you advocate for your child is that a biological process is damaging his or her brain, and every day you wait does more damage. You need to write a series of strong, factual, and unrelenting letters to the heads of your local mental health groups and state that there is a danger to self and others. Emphasize access to guns and send the letters registered.

    • Chrisa Hickey

      You should be frustrated and have a right to be frustrated.

      We need to have a solution for 100%.

      What Fuller Torrey and DJ Jaffe and other commenters on this blog would have you believe is that 100% don’t get help and 100% don’t have insight into their illness. Which you know, by your post above, isn’t true. They are on a witch hunt. And I won’t sign up to have my children pursued by a witch hunt.

      We need to have a solution for those that don’t have insight and those that do. Those that know they need treatment and can have an active say in their treatment, and those that can’t.

      • twopaul

        Again, where are you getting the idea that someone is out to “get” your kids? AOT programs function, on some level, in something like 43 states. All communities need a way to require that a person who is violent or in danger get help. Most AOT has a very high bar for intervention and, humanely, allows that intervention to be least restrictive. I’m just not clear on what concerns you enough to use a phrase like “witch hunt.”

        • http://www.themindstorm.net/ Chrisa Hickey

          Did you get the answer, above?

      • Francesca Allan

        And we all know that “insight” means agreeing with your doctor.

  • http://www.facebook.com/profile.php?id=1072541101 Dj Jaffe

    I should say, that to their credit, albeit in the most timid way possible, NAMI did seem to support HIPAA reform and ending IMD exclusion in hearings you testified at.

  • laura pogliano

    NAMI publicly advises parents in crisis to call the police. Why is NAMI following the non-treatment, non-medical crowd and endorsing the quagmire we are in as parents because our MENTAL HEALTH system has been handed over to the legal system? They’ve been quoted in numerous news articles re: severely mentally ill, indicating one should call police. In my opinion, they need to renew their original stance as advocates for those severely ill. I would not join that organization because of their “consumerism” stance as of late, and I would never back that ignorant book by Robert Whitaker, who is not even a doctor. The commentor below is 100% correct: NAMI’s backing means you are left, as a patient, to your own devices. I hope they get a strong leader who focuses on REBUILDING A DECIMATED mental health system, not merely one who mimics the populist view. Parents of the severely mentally ill know without a doubt that our very sick children are left to ‘choose to come to care,’ a completely buffoonery idea, as they are unable to choose it. Oh, I just had a brilliant idea. I’ll apply for that leadership position. And I’ll spend the next ten years INSISTING the mental health system be rebuilt, not merely running walkathons and handing out literature to their ‘best consumers,’ who are the big money pay off in SAMHSA funds. How in the world does NAMI and Whitaker, with even reasonbable sensitivities about them, justify an enormous homeless population in each state? How do they justify the shootings of the severely mentally ill by police each year, often when parents are calling for help for their children? Why aren’t they present at every single funeral, with huge placards reading, THIS IS WRONG! Who knows, but they aren’t. If NAMI wanted to actually help the most severely ill, with no voice, and no choice, they would be pushing to move psychotic illnesses under the auspices of neuropathology, where they belong (not situational “mental health”) to lend us credence medically, and increase research funding; they would be pushing HSS to clarify HIPPA regulations so that caregivers can get the proper information to assist; and they’d be very, very concerned with the rampant homelessness, violence, jail sentences, and lack of housing and effective programming for our children.

    • twopaul

      YES, YES, YES, YES. I wish you would apply to run NAMI, because you absolutely understand, where that organization willfully fails to get it!

      • laura pogliano

        i will, just tell me how…

        • twopaul

          Well, you could get on a local NAMI board. Lots of folks do that to protect their ill kids, even though they secretly think NAMI is kind of messed up.

    • Chrisa Hickey

      Here’s my entire problem with your argument – this phrase: “…our very sick children are left to ‘choose to come to care,’ a completely buffoonery idea, as they are unable to choose it.”

      That is not always true.

      But you want to treat all of our children with schizophrenia and schizoaffective disorder as if it’s 100% true.

      And that’s wrong.

      So where do you suggest we meet in the middle? Because I don’t believe it’s all or nothing. The fact that you do is frightening to me.

      • twopaul

        No one has suggested it’s all or nothing. What is it that you’ve heard or fear?

        • http://www.themindstorm.net/ Chrisa Hickey

          That’s what you say. psychosis = no insight. That is not true.

          • twopaul

            For many, yes, no insight. You still haven’t suggested why you oppose AOT. Is it that it’s outpatient, and you fear it would limit inpatient resources?

          • http://www.themindstorm.net/ Chrisa Hickey

            I don’t oppose AOT for those that truly need it.

            What I oppose is the notion that 100% of persons with psychosis have no insight. It’s not true.

          • twopaul

            Holy Bananas, Batman! Nobody has said this. If you feel this to be true, post a few links in support of your argument.

          • http://www.themindstorm.net/ Chrisa Hickey

            I posted 4 links to 4 of DJ Jaffe’s Huff Post articles. It’s been held for moderation because of all the links.

          • twopaul

            I have the “politically incorrect” link and can look there. But I suspect we’re reading the same things and drawing very different conclusions. I find nothing frightening or dangerous in TAC or MIPO advocacy, and I welcome their work.

          • Erika

            You find nothing frightening or dangerous about the TAC?

            Torrey and the TAC use are using tactics that
            involve using exaggerated statistics, inaccurate representations of research, fear-mongering, victim blaming and bullying to the further AOT laws and the goals of the Treatment Advocacy Center (TAC).

            Torrey has used these tactics by:

            a.
            He has been found to have used false information in articles, including an exaggerated reporting of the number of murders per year and the
            homicide rate among those with mental illness. He has claimed that a research publication regarding violence suggested a strong link between
            untreated schizophrenia and bipolar and violence when the report in actuality did not specifically mention any condition, and did not mention (or look at) the treatment status of the participants, ie in
            other words, we have no idea if the subjects were in treatment or not at the time of the crime, nor do we know if they were diagnosed with schizophrenia or AD/HD, or if they lacked or possessed insight. He has written pieces that state research has proven that anosognosia related to mental illness can be seen through neuroimaging; in reality, while
            studies have shown a difference between the brains of those with mental illness and those without, and the brains of those with insight and those without, these studies have, by and large, been inconclusive, as
            they cannot find consistent differences among those without insight (ie, different studies are finding different things that are different; not the same differences across the board) and because the differences
            that are found are not at all related to those found in patients with neurological anosognosia. In other words, there is no neurological evidence to suggest that patients with mental illness who lack insight
            are suffering from the same condition as those who have suffered a stroke and lack insight, but Torrey claims that there are. Again, no
            matter where you fall on forced treatment, you should resist the leadership of someone who makes inaccurate and misleading statements to
            support his point.

            b.
            He has written op-eds stating that all, or most, persons with untreated mental illness are ticking time bombs who, without AOT, could become violent and dangerous at any moment, to any person who happens to be unfortunate enough to be near them when that happens; he has claimed that, without AOT, these individuals will become the next Andrew Goldstein, James Holmes, Adam Lanza, and so
            forth. He has used this statement to encourage people to support AOT legislation. Not only are these claims untrue (serious mental illness
            only increases the likelihood of one becoming by violent by 3%. To provide perspective on that, being male increases your risk of becoming
            violent significantly more, with males being 10 times more likely to commit murder and 6 times more likely to commit non-fatal assault than non-males. Hear that: mental illness is less of a contributing risk factor towards violent behavior than gender is), but their sole purpose
            is to make people fear the mentally ill. It does little to increase awareness of mental health conditions, the flaws in the system, or the struggles that those with mental illness and their families face. It
            does nothing to inspire compassion towards those with mental illness and their families. All it does is further the existing — and damaging — culture of fear and stigma surrounding mental illness. Again, no matter
            where you fall on forced treatment, you should resist the leadership of someone who uses fear to garner support.

            c.
            On the TAC’s website, Torrey has claimed to have compiled a database of tragedies that have been caused by mental illness. In this database, he
            includes incidents in which persons with serious mental illness have been raped or otherwise by been victimized by violent perpetrators. No
            matter the state of the victim at the time of the crime, these tragedies were not caused by mental illness. They were caused by rapists, who
            would have raped — maybe not that person, but someone — regardless as to if the victim suffered from a serious mental illness or not. Someone
            could be running through the streets naked, screaming that they are Jesus, and their state of mind would still not be the reason that they were raped. AOT would not have prevented these crimes, as a lack of
            treatment for mental illness did not cause them to occur. Again: The only thing that can cause rape is a rapist choosing to rape. The only
            thing that can cause a rapist to make that choice is a rapist’s own thoughts, emotions, desires and judgements. The only thing that can prevent rape is rapists choosing not to rape, or society finding a way to stop them before they act. To say or imply anything else, as Torrey does through his database, is to reduce the level of responsibility that we place on rapists and those that enable them, and that is the only place that it belongs. Again, no matter where you fall on forced treatment, you should resist the leadership of someone who furthers the pervasive victim blaming and perpetrator excusing that our society engages in.

            d.
            Torrey responds to those who disagree with him by bullying them. He will claim that said person does not understand or is not educated on the issue; he will claim that said person does not care about or wish to advocate for those with serious mental illness; he will seek to diminish their credentials and experience; and, in some cases, seek to silence or shut that person or group down. In one example, Torrey took issue with a mental health center because it used the recovery model and opposed AOT, and consequently fought to get it defunded. He succeeded and, due to the removal of funds, that center was shut down. Even if you disagree with the recovery model, I would hope that you would agree that reducing helpful, non-abusive services, even those we find to be imperfect or in need of reform, is never the answer, especially given the fact that services are scarce to begin with. Due to Torrey’s actions, the individuals served by that center were very likely left with nothing, increasing their risk of disability, homelessness,
            incarceration, hospitalization and death. Again, no matter where you fall on forced treatment, you should resist the leadership of someone who would sacrifice vulnerable individuals to make a point.

            Bottom line: E. Fuller Torrey and the TAC represent an extreme that is harmful to mental health advocacy, and the patients and families it affects. Torrey’s behavior is the exact behavior that we need to speak out against. At minimum, it is behavior that we should not tolerate. We will never reach resolution if we rely on his tactics.

            Erika

          • twopaul

            Erika, I’m with you on the imaging studies, which show brain changes but can’t conclusively say what the changes mean. Time will tell if that research can bear useful fruit.

          • VVale

            Please don’t use TAC or MIPO .
            What/who are they?

          • http://twitter.com/MentalIllPolicy MentalIllnessPolicy

            Chrisa: Am glad you don’t oppose AOT for those that truly need it. Maybe you could write a blog about those who truly need it. (vs. ignoring them).

      • Fighting for Liberty.

        When violent brain rapists have declared war on our human rights, it is all or nothing. Either we are safe for LIFE from forced drugging threats, or the battle continues.

        We will not tolerate your quackery based incursions into our brains that you can’t even prove are diseased. We will prevail against your brutal assault on our human rights.

  • laura pogliano

    Here’s a good example of the NAMI sellout: I sent NAMI that scandalous and damaging advertisement with Eva Mendes, asking them to censor her and publicly denounce that ad. I got a FORM email back, inviting me to visit their site and donate. It might be anecdotal, but it’s good enough for me to say they are ineffectual and NOT really advocating reform or their own ideologies.

  • Chrisa Hickey

    As a parent of two young adult consumers, I see this shift as important and necessary. Yes – NAMI was founded by parents. Yes – there are cases when mandatory treatment is the best option. But there is one very important thing that Dr. Torrey and DJ Jaffe forget when it comes to NAMI, consumers, and the discussion on mental health care in America.

    The consumers.

    Look at the congressional hearing where Pete recently testified. There wasn’t a single consumer invited to participate. Why? Organizations like Dr. Torrey’s have stated, in print, that psychosis = complete inability to know what is happening to oneself, which is patently false. Do persons in the throes of psychosis lack the ability to be aware of it? In some cases, yes. In many cases, no. In either case, they can absolutely give valuable insight and opinion to how we determine to treat persons who need care when they are unable or unwilling to get the care on their own. Why do we treat them like petulant children?

    I don’t know how we can say, with a straight face, that NAMI is an ALLIANCE on mental illness if the mentally ill aren’t included in the conversation.

    • twopaul

      I find the term “consumer” so disgusting…. But facilitating intervention for someone who is too sick to know they are ill is not treating them like a “petulant child.” You need to read more real research on psychosis disorders. Google the word scholarly with combinations of words like schizophrenia, anasognosia, psychosis, etc. Then add modifiers like autoimmune, glucocordicoids, NMDA, GABA, and keep reading.

      • laura pogliano

        where’s the LIKE button?

      • Chrisa Hickey

        Paul, are you a parent? Have you been working and arguing and teaching your child about how to best advocate for him or herself for over a decade? Have you been through over 12 hospitalizations and residential treatment? Do you have a child – two actually – who can express when they are struggling, when psychotic symptoms are escalating, BEFORE it is a crisis?

        No?

        I do. I don’t have to google squat. You might want to google me.

        Or read Pete’s last blog post.

        • twopaul

          Chrisa, YES I am a parent, and I’ve been at this since NAMI was just called AMI, so maybe 30+ years, if we’re having a street-cred contest. I wasn’t commenting on your children’s illness, but rather stating that you were ill-informed when it comes to anasognosia.Your kids may not fall into the 50% of ill people who can’t tell they’re ill. Or, they may, but you may not have experienced this yet. They may have maintained their medication — and, critically, the medication may have continued to work for them. So count your blessings, but you do need to learn a lot more. PS: I don’t think I’ll be needing to Google your name.

          • http://www.themindstorm.net/ Chrisa Hickey

            By the way, it’s anosognosia. I know what it is. I can even spell it.

            You want a 100% solution for 50% of the problem. THAT is the problem.

          • twopaul

            No one wants a generic solution to anything. But we do want a way to get a person who is psychotic into care without calling the police or stripping the person of their rights through conservators hip, or allowing them to become homeless and endangered (you currently need to be both–simply homeless will not do). You’re angry about something I don’t understand. (But I do regret the misspellings and thank you for pointing it out.)

          • http://www.themindstorm.net/ Chrisa Hickey

            Paul:

            What I’m afraid of are DJ Jaffe’s half-baked diatribes on Huffington Post that say ALL PERSONS with psychosis are completely unaware of their symptoms and completely incapable of advocating for themselves and completely incapable of determining what is best for themself.

            What I’m afraid of is the fact that no one that advocates for forced treatment has even stopped to ask patients / consumers / our children what their opinion is.

            What I’m afraid of is the complete disregard for the studies from institutions like Harvard that show that forced treatment doesn’t help, and figuring out how we integrate that information into the discussion.

            What I’m afraid of is the pendulum, which swung too far to the “left” (just picked a direction) on complete rights, has now swung too far to the “right” and will put us back into the 1940′s. There is a middle. YOU just can’t be afraid of it either.

          • twopaul

            I just don’t see it like that. I’ve asked “consumers” who have needed facilitated intervention, and they hated it when it happened and praised it after they were stable again. Denying care to 50% of people who have problems with psychosis (not worried well, or people who have behavioral issues) completely negates any potential for a middle ground. And last time I checked, Mr. Jaffe hasn’t made the blanket statements you suggest. I believe he is fighting for equal access to care.

          • http://www.themindstorm.net/ Chrisa Hickey

            I disagree. I read his comments as fear mongering and forced treatment with no care about what patients who want help need or want.

          • Kristen

            Chrisa & Erika,

            I so appreciate your comments. I don’t think a lot of people realize how Torrey and TAC”s fear mongering actually drive potential patients away from care. I avoided treatment for a long time because I had read and heard Torrey’s comments every time some horrible crime is committed. He’s always talking about what we need to do about the “severely mentally ill.” His focus on force, force, force made me very fearful. I was afraid my voice would not matter to my psychiatrist. Luckily my therapist was finally able to convince me to see a very kind psychiatrist who has been quite helpful to me. I appreciate that he does not talk to me or about me like I’m some deranged lunatic. I may have a severe mental illness, but I am still a person with opinions, and thoughts, and feelings.

            I was also glad to hear Erika’s reminder that the “severely mentally ill” as we are called are individuals. We are all different. I hate it when people speak about us as a group, as if we are all the same. We are not.

          • Francesca Allan

            Glad you found a good doctor, Kristen. I’m similarly blessed. Open dialogue — lots of input from both sides. It can be done. Torrey’s a Nazi and has done more to oppress the mentally ill than anyone I can think of.

    • Okjean

      Good points. I think you are saying that maybe the shift needs to go even further. We do need more inclusion of consumers in everything! I agree, just not at the expense of losing our ability to get them help when they can’t get for themselves.

      • Lynne

        Well said, OKjean. Let’s not take either/or positions, and argue with each other where we have no disagreement. Chrisa Hickey says “Yes – there are cases when mandatory treatment is the
        best option.” To my knowledge, this is what supporters of AOT believe.
        I am the parent of someone whose conservatorship saved her life when she
        was unable to care for herself. Her county in CA, as most, refuses to implement AOT for falsely conceived economic advantage, despite AOT’s demonstrated success in other counties and states. Shame on them.

        • twopaul

          I apologize, but I can’t sit back when very sick people are in trouble, and a “famous” parent tells them there’s nothing they can do until the person volunteers to get treatment. The ignorance in that is simply infuriating.

      • http://www.themindstorm.net/ Chrisa Hickey

        Yes. Yes!

    • twopaul

      Chrisa, I continue to be perplexed by your angry, persistent desire to misrepresent TAC and MIPO. As you know, when a person is experiencing psychosis, they are not capable of advocating for themselves, and they are disinterested in obtaining treatment. They get sicker, and the illness persists in further damaging their brains. If they are of legal age, and have been given an opportunity to live independently (which many disabled people are simply not given) they can fall into crisis in a week’s time. I’ve read your posts, and you speak authoritatively about things you just don’t understand. Have your kids sign themselves out of supervised care, become psychotic, and get on a bus to god knows where, and then tell me you think facilitated treatment is a bad idea. My loved one (“consumer” in the disgusting language NAMI has perpetuated) thanks me for “forcing” treatment, just as I will “force” care if my mother gets Alzheimers and cannot help herself. Your experience is intense, I’m sure, but it is not broad or particularly well-reasoned, and you give desperate people some terrible advice.

      • http://www.themindstorm.net/ Chrisa Hickey

        My children experience positive and negative symptoms of psychosis daily. Yet they recognize these symptoms as psychosis and play an active role in treating them.

        • http://www.facebook.com/people/Susan-Inman/698786309 Susan Inman

          It’s fortunate that their illness occurs in this way but I’m not sure that you understand or have much experience with people who are floridly psychotic and don’t realize this. The psychiatric survivor movement never acknowledges how many of us have been thanked by our family members for persevering to ensure that they received the treatment that they didn’t understand that they needed. And from my experience at NAMI conventions, it’s becoming increasingly difficult for families to help their loved ones receive this crucial treatment.

          • twopaul

            What is puzzling in California NAMI is that on the one hand, they absolutely will not discuss mandated medication, but on the other hand, they promote LPS Conservatorship and lengthy (generally Medicaid sponsored) hospitalizations, or care through corporations like Telemark, and these are really quite parental and damaging to an ill individual, who, like the rest of us, values autonomy and self management.

          • Raymond

            I am a person is recovery, i currently work as a peer specialist, have been doing so for over 6 years, been working in the MH field as direct service for 10, i was a active nami member during the times that were mentioned in the original article. Have I had experiences working and supporting my peers with serious mental illnees, yes. Do i believe they needed treatment, yes. have I worked with peers who are on the max treatment possible and are still ill,,, yes.i have also witnessed my peers get the treatment they need and who have moved on…its all about establishing trust, and building the relationship… it takes time and effort on our part. just giving them medication does not end our responsibility..
            and don’t giving us even the opportunity to speak on our own behalf… there was not even an attempt to ask…… so the trust goes both ways….and families got to present thier views on the matter but those of us in the system were not asked… that sucks.

  • familyadvocate

    My perspective may be a bit different because of my experience in working for a large county mental health dept. in California for over years 12 and also being on the local NAMI board as an officer for 6 years. National NAMI was started by concerned Mom’s and so was our local NAMI. There are many consumer groups that any “consumer” can join and support. Families are not welcome to join and support them if they believe in any form of forced treatment so NAMI was organized to be the “family voice on mental illness” and the name was poorly chosen in my opinion. Even using the word “consumer” denotes that this is not a real disease because when you have a medical illness and go for treatment, you are called a patient. I saw the difference between the world of psychiatry and the rest of the medical world when I worked for 30 years in the medical field. What I saw in my mental health job was how families were viewed as the enemy and a nuisance that the staff didn’t want to deal with because it made their job harder. I was supposedly a partner with other administration staff but in reality I believe it was all for show because they really did not want me to object to the way some patients in our system were being treated. Since the families are the hidden victims and yet they are the safety net for many of their relatives, they should start another national organization that represents their perspective in my opinion. If families agree with the current political correctness in national NAMI, let them continue to be supporters. I gave up on national NAMI, NAMI CA, NAMI Florida and local affliates several years ago and no longer belong to any of them. I am concerned about issues they no longer address such as effective treatment which may mean AOT, conservatorships, hospitalization, injectable meds, 24/7 supervised housing, meaningful consumer peer support, dental care, medical care, supported independent housing for those who qualify and also supported employment. Just having a yearly walk, providing some classes and support groups, an annual conference which really does not address the issues of so many mentally ill people in the criminal justice system really is in my opinion a waste of my time as the mom of a severely mentally ill adult. I am worried about what will happen to our son once his Dad and I are gone from this earth and in my opinion, that is what any advocacy organization for mental illness should be focusing on. With a recent horrible experience when he had an incident at his private residential program where the deputies unlocked his door and came into his room then tasered him when they violated his space and charged him with felonies. Guess who bailed him out of jail, took him home, found a good attorney…..yes it was his parents who love him. Yet no one cares that we also suffered including our local NAMI which had zero helpful advice, so why belong to such an organization who are not there when you or your mentally ill relative need help. Talk is cheap but action is priceless.

    • http://www.themindstorm.net/ Chrisa Hickey

      I’m sorry to read about your and your son’s experiences. I agree that many local NAMI chapters are ineffective at best. And I do agree that revisions to HIPAA laws need to be addressed. We need to be seen as partners in our childrens’ care. But that doesn’t mean we can’t take our childrens’ lead in their care. We should do so, when they are able to take that lead.

    • twopaul

      Neither AMI nor NAMI was ever any real help to our family in times of crisis. It’s a pity, because they could really be a force for improvement in care.

    • patriciaforsdyke

      You are right and what does happen after you are gone? Left to the present system it looks pretty bleak.

    • http://www.facebook.com/jyudof Jay Yudof

      And that may be the crux of this whole discussion. If someone wants to be the “family voice on mental illness,” and attract those family members who believe that their interests are served by7 forced treatment laws, then it is their privilege to do so. NAMI held itself out to be “The Nation’s Voice on Mental Illness,” a term which NAMI uses less than before, it must naturally include mainly people living with various mental illnesses in its leadership. To do otherwise seems disingenuous.

  • dr. toby watson

    as chief psychologist of a prison and clinical director of a mental health clinic,, I am pleased to see nami become more evidence based and inclusive of the need fora paradigm and treatment shift, 2 more psycho social interventions with minimal use of medication. most researchers recognize that doctor Torrey have been frankly misleading. mister whiskers work is impressive and I have been lecturing and talking with nami education trainers for months on such topics

    • twopaul

      Mr. Whiskers. That’s a keeper.

  • laura pogliano

    again, where is the LIKE button?

  • Okjean

    Ok. On the subject of insight. It is not all or nothing. It comes and goes to varying degrees. Most of it biology with a little bit of good old fashioned denial. There is no one size fits all. Treatment must be personal. But no treatment at all when you have a diagnosis of SMI (insurance/or no insurance) is costly. Family members don’t make good caseworkers. Also, I love NAMI at the affiliate level. We rock at education and support. Without NAMI education i wouldn’t know that I have moved into advocacy. NAMI, where’s the advocacy for the families who want to be a part of the solution? I want AOT. I want a different dialogue. Housing, jobs, and opportunities that mean our loved ones can be self sufficient if at all possible. I am afraid we have learned to be helpless. Empower us too! My loved one is why I care. I would not elevate my needs above his. we are on the same team. We need to listen to what they need.

    • twopaul

      Denial? That’s so 1980. Seriously, psychosis slips in like a fog and once a person is knee-deep in psychosis, they will tell you they are just fine, thank you very much.

      Family members make great case managers if they’re educated. They do a far better job than many of the bitterly angry 400-pound social workers I’ve met.

  • bcatherine42

    My problem with NAMI is that it has often ignored one of the biggest segments of the mentally ill in this country, and that is those who suffer from anxiety disorders. Say NAMI and automatically depression, bipolar, schizophrenia and PTSD come to mind, yet more suffer from anxiety disorders than some of these others combined (and a portion of those are severely disabled by them). Yet NAMI keeps quiet and anxiety disorders suffer. Sad.

    • twopaul

      I didn’t feel that from my local NAMI. I felt they were very equal-opportunity for anything in the DSM.

  • advocate4treatment

    I joined NAMI in 2000. One of the items that we had to vote for at the NAMI National Convention was to have at least one “consumer” on the NAMI Board. Several consumers in a workshop I attended were ANGRY that only one consumer was suggested – why wasn’t there at least three! I knew then and there that consumers didn’t just want to join NAMI, they wanted to take it over, which is exactly what has been happening at all levels – national, state and local. Many conventions and conferences will not even allow workshops or presentations on assisted outpatient treatment because it might offend the consumers who only believe in the recovery model of choice, self-empowerment and self-determination, even when someone suffers from the symptom of anosognosia and is too ill to make any rational decisions regarding treatment. Sadly, those with severe mental illnesses do not have as many advocates speaking up on their behalf as the families (fathers, mothers, sisters brother) who used to be able to advocate for changes to our broken mental health system through NAMI have been silenced. Chances are stong that the new head of NAMI will be a consumer and my prediction from 13 years ago will be complete. Fortunately families still have TAC which is the only organization willing to advocate for those with the most severe mental illnesses.

    • http://www.themindstorm.net/ Chrisa Hickey

      Again, please explain to me what other group of patients would allow others to discuss what’s in their best interest without patient representation?

      • twopaul

        Progressed Alzheimers would be one.

        • Fighting for Liberty.

          19th century chattel slavery would be another.

      • advocatadvocate4treatment

        Having one workshop or presentation on AOT at a convention full of workshops and presentations on the recovery model would be fair. After all, this is a topic of interest to most families of loved ones with mental illness. AOT is a compassionate, humane way to help someone who lacks insight of having an illness that could be helped with effective treatment. Why would you or anyone object to learning about the benefits of AOT?

        • Fighting for Liberty.

          Maybe at this “workshop” they can strip some mental patients naked and forcibly inject them for everyone to see. Maybe the AOT cowards can perform this assault live for the audience. Forced drugging laws, including AOT laws that threaten and coerce drugging by force and incarceration without charge or trial, are NOT “compassionate” and “humane” any more than the Nazi T4 Euthanasia program was compassionate and humane.

          Those who have raped the biology of mental patients throughout history and treated their bodies like public property, have always hidden their violence behind the word “compassion”.

      • http://twitter.com/MentalIllPolicy MentalIllnessPolicy

        Alzhehimers.

        • http://www.facebook.com/jonathan.dosick Jonathan Dosick

          Another classy moment, DJ.

          • Fighting for Liberty.

            Isn’t he just despicable?

        • http://www.facebook.com/profile.php?id=1330058451 Jeffrey Alan Craig

          There is a serious flaw in your logic. People with Alzheimer’s only “allow” others to do so because they are functionally disabled and can not allow or disallow one way or another. The very fact that people with mental illnesses can infiltrate places like NAMI and work to fight against forced drugging means that they can not logically be compared to people with Alzheimer’s.

          • VVale

            Infiltrate? really? Like we are “covert opperations”or something? Rediculous! Remember that some of us are family members too!

        • Fighting for Liberty.

          DJ Jaffe just compared people with “mental illness” labels to demented old people. Did you see that everybody?

          This is his mindset. Dementia is forever, it gets progressively worse in every case. Therefore patient representation in policy is precluded.

          One would think DJ Jaffe would admit that this is not the case with the group of people he likes to label and call for the forced drugging of.

          DJ Jaffe is a danger to everyone with a “mental illness” label. Nobody has shown us more disrespect and contempt as a group.

      • patriciaforsdyke

        Chrisa,Though you raise a serious point, it seems to me that you may not be really understanding the nature of a psychosis. When a person is trapped in one, and has no insight that they are ill because their brain cannot recognize that it is ill, because it is seriously malfunctioning and therefore is at the beck and call of delusional thinking which well might put them in jeopardy to act on their delusions and thus endanger the safety of themselves or others, then it is wise to allow responsible others to act in their best interests.

        • http://www.themindstorm.net/ Chrisa Hickey

          Patricia, I live with two persons who live with psychosis every day. They battle hallucinations – tactile, aural, and visual – daily. They experience both negative and positive symptoms constantly.

          Your argument is invalid. Not all persons living with psychosis are unaware that they are living with it. Not all persons with delusions and hallucinations are unaware that it is their brain malfunctioning and that is a problem.

          What you suppose is simply, factually, untrue for at least 50% of persons living with psychosis.

          • patriciaforsdyke

            I (of course) recognize that some people are able to recognize that they are hallucinating, and that they appreciate that these hallucinations are symptoms of the illness and not reality , but I do have quite a bit of experience and have observed that many often lose insight pretty fast as they deteriorate.
            A professional person who is afflicted with schizophrenia has told me (many times) that though he has only deteriorated in a major way twice, should he do so again ( i.e lose insight ), he wants someone to act fast in his best interest. This person had his first episode of serious psychosis in his late twenties and another ten or so years later. He took himself to hospital for the second episode fast, but they did not rush to treat by which time he really became trapped and paranoid . He ran from the hospital and had to be brought back by the police. The second episode cost him five years to recouperate and the loss of what was a very succesful and responsible career. It is not quite clear to me why you are making your argument so adamantly. Are you not listening to the those who do not feel that some strident members of the consumer movement are representing their views or needs ?

          • http://www.themindstorm.net/ Chrisa Hickey

            No. I’ve never said that. Not once.

            What I have said, over and over and over, is that persons like DJ Jaffe and Dr. Fuller Torrey who use fear of ALL persons with schizophrenia by calling them ALL ticking time bombs should they EVER become unstable is the wrong message. Not only is it factually incorrect, it actually puts our loved ones in MORE danger from the general public, who see them all as potential serial killers and, as such, dangerous to general society. It’s marginalizing, it’s stigmatizing, it’s dangerous, and it’s a flat out lie.

          • patriciaforsdyke

            Jaffe and Fuller Torrey do not stretch the truth nor are they into magical thinking and flawed logic. Perhaps you should reread what they actually say more carefully.

          • http://www.themindstorm.net/ Chrisa Hickey

            I say the same back to you.

          • Fighting for Liberty.

            Oh we’ve all read what these violent thugs say. Google “DJ Jaffe” and “turn over the furniture” to see how much of a lie it is to say they “do not stretch the truth”.

          • Fighting for Liberty.

            You live with a person labeled “psychotic”. You are not one. Therefore it is not your human right to own your own body on the line. You will be defeated. We will win our human right to no longer be assaulted by violent ideologues that support violent forced drugging policy.

            Prove anyone’s “brain is malfunctioning”. You can’t.

        • http://www.facebook.com/profile.php?id=1330058451 Jeffrey Alan Craig

          But then what happens when somebody is forcibly drugged, a psychiatrist deems that they are no longer psychotic and THEN they decide the drugs are no good, that they wished they weren’t put on them and decide they want to go off? By your own logic — that it is OK to force treatment when they supposedly lack insight — they should be allowed to go off the drugs and stay off the drugs, even while psychotic, if that was their choice when they WERE NOT psychotic. You claim the only reason you shouldn’t have to respect their choice is because they are psychotic — but what if their choice doesn’t change after the drugs have kicked in? They still get forced to take them. As somebody who has been around the system more than enough in his life, I have seen that people on your side of the fence routinely reject peoples treatment choices, even when they are not (or are no longer) psychotic. Therefore, to someone like me, your argument is invalid; it exists to serve political and argumentative purposes only.

        • http://www.facebook.com/people/Steve-McCrea/100001231226350 Steve McCrea

          Boy, talk about overgeneralizing! How do YOU know what happens to “them” when “they” are “ill,” and why would you invalidate the voices of those who have been there? Do you really think all “psychotic” people are the same?

    • Fighting for Liberty.

      “anosognosia” is not a “symptom”. It is a quack pseudomedical political strategy that Torrey invented. I am HEARTENED and PROUD to hear that forced drugging lobbyists are being actively pushed out of NAMI. Such vicious violence against people with “mental illness” labels has no place in civilized society. No place. Just like rabid antigay anti gay rights fundamentalists would not be welcome at a Gay organization’s conference, so too the disgusting and evil bigots who push forced drugging laws should be shunned like the brain rapists that they are.

  • http://twitter.com/BipolarMomLife Bipolar Mom

    Thank you for this post, Pete. Important information and you summarized it all very well.

  • http://www.facebook.com/people/Susan-Inman/698786309 Susan Inman

    Thank you, Pete, for providing all this helpful perspective. I’m very concerned about some misconceptions that I see in the comments below. Involuntary treatment is for people who are a danger to themselves or to others or have deteriorated to the point that they can’t take care of themselves. This is how this process mostly operates in British Columbia although many very ill people do slip thorough the system. There are very interesting comments below from people within the mental health system who see how poorly the mental health system treats families. One factor in this marginalizing and undermining of families is that many mental health professionals (e.g., social workers, counselling psychologists) have never received any science based curriculum on psychosis. I have wondered why NAMI never seemed to have advocated on this issue; I’m beginning to realize more about the gradual takeover of NAMI by the consumer movement. There are so many consumer groups and NAMI had been the one group representing the perspectives of families. When I go through the psychiatric survivor websites, like Mad in America, I’m struck by how many of these people really did have awful parents and suffered many psychological problems as a result. What really bothers me is that they feel entitled to represent the best interests of people like my daughter and they don’t represent these perspectives. Many people like my daughter understand that they have a brain disorder, have learned to manage these illnesses, and want to ensure that, in the event of a psychotic relapse, they will not be left to ‘freely choose’ to be left in the horrors of untreated psychosis. NAMI had been a place where people with mental illnesses with these views could be represented but this doesn’t seem to be the case anymore. I am also troubled by what I see as an unjustified assumption below that parents are looking to overly control their son or daughter; I just don’t see this happening; the families I see want their son or daughter to be as independent as possible. As well, people with illnesses aren’t getting the best psychoeducation. In Vancouver, participants in the Early Psychosis Intervention programs learn about the lack of insight that usually accompanies psychosis; this helps them accept their illness and also helps them plan for the future. The regular adult psychiatric population receives programs like WRAP that leave this information out, perhaps because its adherents don’t really accept that schizophrenia and bipolar disorder are brain disorders. Many people who run these programs in the US and Canada seem to be parent blamers and generalize from their own personal experiences. This further alienates vulnerable clients from their families who are usually the people who offer the best longterm support.

    • twopaul

      You make an excellent point on the curriculum for social workers and others who are providing care for people with a multiplicity of brain disorders, which we currently lump under diagnoses like schizophrenia and bipolar disorder. Lots of other good points, too but this one, on the nature of who provides care, is seldom emphasized. Please write more about this.

    • http://www.themindstorm.net/ Chrisa Hickey

      Susan, please explain to me who having persons with MI being involved in NAMI is bad?

      • http://www.facebook.com/people/Susan-Inman/698786309 Susan Inman

        I think it’s great having people with illnesses involved with NAMI. What I don’t think is great is the common situation, mentioned in other comments, of having people who view themselves as psychiatric survivors gradually take over an organization with a different perspective. Psychiatric survivors have positioned themselves to represent all people with severe mental illnesses, but they don’t. Family caregivers for people with psychotic illnesses are disempowered and too often it’s psychiatric survivors who fight to keep other people’s family members marginalized in the mental health system.

        • http://twitter.com/ChrysMuirheadA chrys muirhead

          As a survivor and carer of family members who are recovering/recovered from mental ill health and the psychiatric system I don’t agree that survivors are trying to marginalise other folk’s family members. And I wouldn’t presume to speak on behalf of anyone else. I can only speak from my own experience which I think may ring some bells for others.

          I have been in the psych system 3 times and got out every time by taking charge of my own mental health. Other family members chose to stay in the system and that’s their choice. However those who wanted to come out well I helped them on the journey like a peer supporter. Long term psychiatric drugs cause tardive dyskinesia and other health issues. I preferred to recover and do without the drugs despite the schizoaffective disorder diagnosis which I didn’t believe or accept.

        • Fighting for Liberty.

          It is the “brain disease” true believer cult members like Susan Inman who perpetuate polcies that brutally rape our brains by force of law. You will be countered and defeated at every turn, make no mistake. If you wish to assault your daughter’s brain with toxic drugs even though you can’t even prove her brain is diseased, take your chances and be brave enough to get your hands dirty yourself and hold her down and viciously assault her with forced injections. Why hide behind government goons? You’re a violent anti human rights person. And we will defeat your disgusting and dehumanizing call for more violent forced drugging against us. Make NO mistake. Going up against a group of people who are fighting for the right to own their own body, is ALWAYS a losing battle in the long run. Those who wished to take away a woman’s right to choose, lost in the end. Those who wished to take away the sexual freedoms of gays, lost in the end. Those who wish to take away our right to own our brains, will lose in the end.

    • http://www.facebook.com/jyudof Jay Yudof

      I would be interested in the assertion about the lack of a science-based curriculum on psychosis. As a man who moved from NAMI volunteer roles into a Psychiatric Rehabilitation, earning a Master’s and a Certification in same, I was exposed to and tested on plenty of science into the issues confronting those of us living with mental health disorders, as well as the range of research-based biopsychosocial interventions which help. Perhaps NAMI needs to update its Family-to-Family and BASICS flavor to emphasize the range of interventions, as well as the sources of emotional disorders, rather than presenting a shorthand mode of “biologically based” – Rx are first line, Of course the peer and rehab communities recognize that Rx can be helpful for many people in many circumstances, but also recognize that personal choice is critical. If a person does not want Rx, we can help them identify suitable psychosocial interventions. Good NAMI support groups help peers and families understand those range of successful interventions, including self-management strategies, rather than getting so stuck on Rx.

    • Francesca Allan

      Despite your post, Susan, in British Columbia psychiatrists can and do coerce patients into “consenting” to treatment by threatening to make them involuntary. You don’t have to be a danger to yourself or others — simply disagreeing with your diagnosis is enough to do it.

    • http://www.facebook.com/jonathan.dosick Jonathan Dosick

      “Takeover of NAMI” by peers/survivors? Wow, that’s a real stretch, considering their close alliances with Big Pharma, Big Hospital, and their marriage to ‘the medical model.’ I am heartened that NAMI has invited Robert Whitaker to speak, and that they are not as actively or directly promoting AOT, but there’s a heck of a long way to go until peers have anything close to an important role in the organization.

      • http://www.facebook.com/profile.php?id=1330058451 Jeffrey Alan Craig

        Big Pharma has pulled back a lot of their financial contributions due to the fact that many of the second generation drugs are now off patent. They have also almost completely stopped research into the development of a third generation of psychiatric drugs simply because scientists have failed to provide them with any promising new avenues of research.

    • http://www.facebook.com/russell.stence Russell Stence

      Susan, i speak from the perspective of a parent like you and Pete, whose experience with his son strongly resonated with me when I read his book “Crazy: A Father’s Search..”. A friend and colleague pointed me to his book shortly after my daughter’s first very scary and traumatic mania/psychosis—which followed her first experience with psych meds. However, while i respect Pete’s perspective, through my daughter’s ongoing saga my eyes have also been opened to how seriously flawed and injurious conventional psychiatry can sometimes be to those it purports to help. I am a NAMI member and this organization has been helpful to my daughter and us parents in some ways. However, i am concerned that what is presented as education sometimes appears more like indoctrination, and i have encountered a closed rather than open-minded approach on certain issues. This is very unfortunate since open and honest dialogue is sorely needed in a field where so many questions remain. However, having said that i am very heartened by the election of Keris Myrick as national president of NAMI over the past year, and also at their having Robert Whitaker as a speaker at the upcoming convention. NAMI has tended to showcase individuals who have done well with conventional psychiatric interventions (mostly medication), but has marginalized folks like David Oaks, Ted Chablinsky, Will Hall, Laura Delano, Jim Gottstein and many, many other very articulate people who can attest to the need to seriously rethink conventional psychiatry and the concept of mental illness. I would love to see a very diverse panel discussion with participants representing a full cross-section of viewpoints and experiences within the mental health system. As Pete says, “There should be room at the table for all of our voices to be heard.”

  • ncami

    I joined NAMI because of their original intent…very sorry to see shift….

  • Doris A. Fuller

    The organization founded by Dr. Torrey, the Treatment Advocacy Center, provides information about many mental illness issues, including anosognosia, also called “lack of insight.” The prevalence rates we cite are are that about 40% of people with untreated bipolar and 50% of those with untreated schizophrenia are not able to recognize they are ill due to anatomical changes to the brain. Turn the numbers around, and we’re saying that at least half of people with these diseases are aware they have an illness, which vastly increases the chances they will seek treatment and get on the road to recovery without assistance.

    Involuntary treatment options exist for the very small subset of people with untreated psychiatric disease who are both unable to seek help and at demonstrable risk (for danger, suicide, re-arrest, etc.) as a result.

    Severe mental illness is treatable. Reserving treatment for those who are well enough to seek it – and leaving those who aren’t to suffer without care and the chance of recovery it can bring – strikes us as both inhumane and discriminatory.

    • twopaul

      TAC characterizes “lack of insight” as due to anatomical changes in the brain, but my very medication-compliant loved one cruised right into oblivious psychosis after more than 15 years on meds. A new doctor saw how well she was doing and reduced her dose. Once stabilized (using California state pathetic LPS process, which cost the taxpayers over $100,000), she went right back to very clearly understanding her illness. So I see this more as simply part of psychosis. We have to understand that all people, when psychotic, are a danger to themselves.

    • Fighting for Liberty.

      The rape of people’s brains is what is inhumane and discriminatory. That you call “involuntary treatment” an “option”, is telling. It sure doesn’t look “optional” given it is predicated on brutal violence against people labeled “mentally ill” by quacks who don’t examine brains at all.

  • Terri Wasilenko

    NAMI NYS has helped my family in many ways. After taking the NAMI NYS Family to Family Education class, founding a local NAMI affiliate in 2002, facilitating a bimonthly family support group and watching my son gain self confidence through the peer led In Our Own Voice program, I think NAMI National and NAMI NYS has something for everyone. The pendulum will swing back and forth when it comes to mental health points of view (family members vs. persons with brain disorders) but what’s constant about NAMI is its ability to educate and advocate for people who did not have a voice to begin with. I am confident that all NAMI members can work together under a big NAMI umbrella.
    Terri Wasilenko

    • http://twitter.com/MentalIllPolicy MentalIllnessPolicy

      Local NAMIs often do good work. State NAMIs (if not too beholden to state office of mental health) sometimes do good work. NAMI national used to always do good work. But now that its mission has expanded beyond themost seriously ill, good work is rare.

      • advocateadvocate4treatment

        Many of our local NAMI chapters do not support AOT because of the large number of members who are consumers. Those chapters usually have close alliances with our state Office of Mental Health (that also opposes AOT). Our state NAMI supports AOT, but not very assertively, again so as not to offend the consumer members. I don’t know how other local and state NAMIs stand on the issue of supporting AOT, but in my state families are very frustrated that they cannot depend on NAMI to help their children with severe mental illnesses by advocating for sensible AOT laws.

        • Fighting for Liberty.

          Supporters of forced drugging laws will be defeated in the end. Your violent overreach into our bodies against our will, will not stand. Your declaration of war on our liberty will be countered at every turn.

  • http://www.facebook.com/profile.php?id=1328980889 Jennifer Anne

    As I write this my oldest child, my Severely Mentally ill son Matthew rots, for months now, in solitary confinement without medication for his illness in the Mens Central Jail in Santa Ana, CA. He will be there…in isolation until at least August while he awaits sentencing on bank robbery charges (he walked into a Bank of America with a sticky note threatening to “blow up the bank” unless they handed over 1k) that we now we pay an $500/hr to an attorney to fight the DA so he will “only” get 11 years…it was 19. This is his fourth time in jail since turning 18 and returning home from his residential facility. Since he has been a “client” of County Mental Health Services since age 12 we turned immediately to our “team” (Hi Mark R. and CO.) for guidance….ultimately because our son does not think he is sick and refuses to participate in any form treatment for mental illness he got none. They believed we must “support his choices” which included drug use, stealing, living on the streets and stopping his prescribed psych medication….his case manager was adamant about our sons “The CONSUMERS” rights when it came to making his own daily decisions…the catch was our son is compelled to act OUT IN THE WORLD in very socially unacceptable, sometimes aggressive and eventually violent ways ie his removal from the loving home of his family and acceptance into a “special” school at age 12 which served “the needs of the severely emotionally disturbed youth”.
    All this was lost on the case manager, the county and the entire board of our local MHSA which included NAMI representation. Except for Brian and Carla Jacobs (TAC) a few parents (Mary) and several “consumers” we met along our descent into into hell not ONE PERSON in those meetings had a desire to help us fix the Broken parts of our system that were clearly failing not only our child but his entire peer group, his graduating class of Devereux 2011…one stabbed, one overdose, one selling herself on the streets!! We went to many many meetings just to get 3 minutes of “public” time at the podium to share our story and beg for help for our son and others like him. We also reached out to NAMI “leadership” to be more vocal on Laura’s Law….It is safe to say that Pitman has had “enough” of us in the sense we don’t GO AWAY……we keep coming back to our “National Voice” to SPEAK UP for families like us. From where we sit it seems as if this once vibrant forward thinking and ADVOCACY VOICE of our grass roots organization has been swallowed up by the same Recovery Whale that swallowed our son. I love my peers at NAMI…we supported for them for DECADES while Matthew was a minor….way before hand to hand and blah blah blah…cuz it is all BS if we WATCH as someone as loving, intelligent and creative as my son go down the toilet…not by accident….not between cracks in a otherwise intact and working system but by DESIGN. It seems as if our MI Peers who make NAMI even possible are being bullied by the county funded “leadership”….peers know that families like us are real, that some folks NEVER EVER recover enough to even become aware they are ill and need involuntary help. I really think they (NAMI Volunteer base) are limited in speaking up for fear of rocking the funding boat.
    Anyway….Matt keeps “reoffending” while in solitary (stopping up the plumbing…breaking property…threats to staff etc.) We “navigated” the pediatric side of this horrendous illness the best way possible, “dealing” with expulsions from academic, social and other public gatherings was common…babysitters would not come back…the same story as most parents of the very very sick and totally unaware. We mourn the loss of our child every day, he could have been saved by Lauras Law….he qualified….but because OUR VOICE is not being heard our county drags its feet in implementing it….and the Galla’s continue. No I can not longer endorse NAMI…not because it lacks knowledgeable volunteers or effective advocates but because the LEADERSHIP of NAMI has chosen to ignore the most seriously mentally ill, the ones who do not know they are sick and left them WITHOUT a voice….instead focusing on “those who recover” and those who know they are ill.

    • twopaul

      I’m so sorry. You are completely right. This is the shameful truth, and California would save money, not to mention precious lives, with improved civil commitment, supervised housing, and AOT. If group letter writing to judges or jails would help, sign us all up.

      • Fighting for Liberty.

        We will continue to fight your vicious attempt to strip us of human rights using discriminatory and violent laws.

    • http://www.facebook.com/profile.php?id=1330058451 Jeffrey Alan Craig

      And exactly how would forcing him to take psychiatric drugs stop him from trying to rob a bank? What is truly most tragic about all of this is the fact that nobody would be stopping people like you from forcing help onto your trouble kids if this help wasn’t in the form of very powerful and dangerous DRUGS! If people like you would just stop clinging to the drugs and started supporting more humane treatments then you wouldn’t get so much opposition. Maybe you should read Robert Whitaker’s books, and look at just how meager the efficacy of these drugs really are: the overwhelmingly majority of schizophrenia patients who take them are still psychotic and on SSI. The statistics cant possibly support the miracle life saving image you people try to give to these drugs. So why rely on them so much? If forced treatment in this country revolved around psychosocial care, the only opposition would be cost cutting bean counters and then maybe you could have had someone in his life who could have talked him out of such a STUPID idea as trying to rob a bank!

      • patriciaforsdyke

        This is silly. The proof is in the pudding. Many people with schizophrenia have said why did someone not step in earlier with meds. Thank goodness someone in the end did, they say.” I have my life back etc “.
        When the sun rises in the east and it does the next morning and the next ad infinitum, it does not become a debatable issue it is a fact. Drugs do work despite some of their awful side effects.

        • Fighting for Liberty.

          Many people labeled with the “schizophrenia” quack label also die or have their lives destroyed at the hands of “meds”.

          The only question remains is who will win in the fight to abolish forced drugging laws.

          I hope we can continue to work towards defeating the advocates of violent policies of coercion.

        • http://www.facebook.com/profile.php?id=1330058451 Jeffrey Alan Craig

          “Thank goodness someone in the end did, they say.” I have my life back etc “.”

          What life is that? Sitting in a group home or living in a shelter on SSI, suffering movement and metabolic disorders, sleeping 14-16 hours a day? Like I said, the statistics cant possibly support your conclusion. The overwhelmingly majority of schizophrenia patients ON MEDS are chronically ill and survive on government supports. They don’t get better, they don’t have social or love lives and they surely don’t return to work.

          And you don’t honestly think this is logically comparable to sunrise, do you? That is possibly the worst logic I have ever observed. I’m sure that if the sun did rise every morning, in this case the drugs did in fact help the schizophrenia patients, then the studies and statistics would surely show that they are doing much better on the drugs, but instead it’s the opposite. The real world observation that is made is the fact that they do not get better on the drugs, so your logic is absolutely backwards.

          • advocate4treatment

            Your argument that people taking medications cannot return to work and live a full life is not true, if the prescribing psychiatrist is competent. Individuals who need medications and don’t have access to them are the ones whose lives are destroyed, often becoming homeless, ending up in jail, or victimized. Treatment does work and does require more than medications, but with the addtional therapy and supportive housing and vocational support a person with a severe mental illness can lead a good life.

            Witholding treatment from someone who needs it is cruel and unusual punishment.

          • http://www.facebook.com/profile.php?id=1330058451 Jeffrey Alan Craig

            My argument was not that they cannot return to work, it’s that they DON’T return to work, which is a verifiable fact. Please don’t put words into my mouth. The statistics clearly show that 95% of medication compliant schizophrenia patients are not working and are on SSI. Therefor they are in fact not working. I’m sure that they would like to return to work if the drugs worked well enough to help them to, considering that $700 a month is nowhere near enough to live off of. But in reality, these drugs work in a way that actually decreases their abaility to function. They work by sedating them, diminishing their brain function so that they cannot think, feel or function as much as a person normally could. This may reduce psychotic behaviors, but in the same way it reduces all behaviors, including good behaviors such as working.

  • Erika

    I am one of the 6 percent of Americans who suffer from a serious
    mental illness. I have Schizoaffective Disorder, which combines the
    symptoms of Schizophrenia and a mood disorder — in my case, Bipolar
    Disorder. I have experienced episodes of psychosis, which included
    delusions, hallucinations and paranoia. I have cycled between manic,
    hypomanic, mixed and major depressive episodes. I have suffered from
    destructive rages that have led me to damage both property and myself. I struggle with chronic self-injury, and I have attempted suicide on
    multiple occasions. I have been treated in psychiatric hospitals,
    intensive outpatient programs, clinics, psychiatrists’ offices, and
    other settings. I have received wrap-around care and intensive case
    management, and, when I was most ill, it was only because of these
    services that I was able to avoid requiring long-term, out of home care.
    It took years for me to receive the correct diagnosis and treatment,
    and even longer for me to stabilize.

    I am aware of my illness and the devastating impact that it can have on
    my life. I am aware, as well, of the positive, life-saving effect of
    treatment and services, and of what happens when I do not have access to them. I know when I am destabilizing or approaching a crisis, and can
    seek out the help necessary to address that. I am capable of being in
    charge of my treatment for more of the time than I am not, and have
    enough insight to know when I need someone else to step in on my behalf. I am an active advocate within the mental health community, and have been so since the age of fifteen; in fact, I was the consumer guest
    writer for the WE’VE LOST ALL HOPE series that Pete published on this
    blog. AOT or other mechanisms of forced treatment would not have been appropriate in my case, even though my illness is considered to be
    persistent and severe.

    I tell you all of this to make this point: there is no one, single way
    that mental illness presents, and thus no single solution. To claim, as
    DJ Jaffe and E. Fuller Torrey have, that those with serious mental
    illness cannot possess insight and are unable to seek care on their own
    – both general statements — is to ignore the diversity and complexity
    that exists among those with these illnesses. Ultimately, those of us
    with serious mental illness are like everyone else, and that means that
    we are most similar in the fact that we are different from each other.
    Some of us function at, or even above, the level of those without mental
    illness, while others require intensive, wrap-around and/or residential
    supports. Some of us thrive in post-secondary education and
    professional careers, while others would benefit from employment in a
    sheltered workshop. Some of us own houses and have families, while
    others need the long-term support and supervision of a group home. Most of us, like the rest of the population, are somewhere in between. Any conversation that is had on mental illness needs to acknowledge and take this variance into account, and thus address the needs of all those struggling with serious mental health conditions.

    We also need to be included in those conversations. On the larger level,
    this means including us in — and allowing us to take the lead during –
    house subcommittee forums on mental illness and the boards of the
    National Alliance on Mental Illness (NAMI) and similar organizations. It
    means asking us what it is like to experience mental illness, and what
    it is like to navigate the mental health system as a patient. It means
    asking us what we find to be helpful, what services we wish we had
    access to, and what we find to be unhelpful or harmful. It means asking
    us what roadblocks, barriers and frustrations we experience while
    receiving care. It means asking us what we want to see changed. It means be willing to listen to the answers of these questions, and using them to guide and shape advocacy efforts. It means realizing that, while
    family members can provide valuable insight and speak to the experience of being a caregiver, only those with mental illness can truly speak to the experience of having a mental illness.

    To do otherwise, to treat us as if we are somehow ‘other’, undeserving of
    being talked with and instead talked about, as if we cannot read what
    you write, only furthers the marginalization that we face on a daily
    basis. It is no different than if a subcommittee hearing was held on
    women’s rights and reproductive health, but did not include a single
    woman on the panel. Or if a forum was held on the challenges facing
    minority youth in urban America, but only included a panel of white
    speakers from suburbia. If either of these were to occur, outrage would
    erupt, and rightfully so. It should be no different for mental illness.

    On a smaller, but equally important, level, it means including us in
    conversations regarding our treatment. It means recognizing that the
    presence of a serious mental illness does not, and should not,
    automatically remove a person’s right to self-determination over their
    own body. It means recognizing that it does not strip them of their
    ability to speak about what they are experiencing and state preferences
    based upon those experiences, and it should not strip them of the
    dignity of having those preferences respected. It means recognizing that
    the psychiatric treatment that a person with a serious mental illness
    receives is ultimately their treatment, and they have the right to be active participants in that treatment. For different patients, this will mean different things. For some, it will mean maintaining complete control over their care, with the occasional, optional support and input from family members and friends. For others, such as those who have been found to be not competent to make decisions and placed under guardianship, it may mean being allowed to choose one caseworker or other mental health professional over another, but not being able to choose to take medication or not. Regardless, consumers must always be included in treatment, have our input be respectfully considered, and, to extent that we are able, be allowed to make our own decisions regarding that treatment.

    This includes allowing us to make bad decisions, or decisions that conflict with the advice of treatment professionals and family members. As Pat Deegan has said, we need to “support the dignity of risk and the right to fail.” Even patients with insight, even those who are found to be
    component to make medical decisions, will occasionally refuse treatment, resist services, oppose family participation, or otherwise poorly manage their mental health, much like those struggling with chronic physical illnesses do. This must be allowed, as the presence of a
    serious mental illness alone, even in cases where treatment is being
    refused and even in cases where that treatment refusal is having a
    negative impact on the patient’s life, should never alone be enough to
    force treatment. Rather, forced treatment should only be considered
    based upon if a patient has the capacity to give informed consent or not
    — as defined here (ht tp : / / w ww . ascensionhealth . org /ind ex. php ?option =com_ content& view= article & id= 136& Itemid= 172 [remove spaces]) — and not their diagnosis, illness severity, treatment decisions or the impact of those decisions.

    At the end of the day, no matter where one stands in regards to the issue of forced treatment, it must be remembered that those of us with serious mental illness are still people — not an entirely separate population or species. Just as with those without a diagnosis of serious mental illness, recognizing that fact, and expressing a willingness to work with us, a willingness to respect our personhood, a willingness to ask “How are you doing?” and “What do you need?” and “What can I do to help?”, a willingness to actually see us, is going to be the most successful. As long as an approach or philosophy to treatment has that at its basis, at its core, it at least going in the right direction.

    Erika

    • twopaul

      Erika, you would not be a candidate for AOT, as other posts have made abundantly clear. Psychosis is present in dozens, maybe hundreds, of different brain conditions, and all people deserve care. You are fortunate to have a condition you can manage. You misunderstand AOT, which is individualized care for very seriously ill people who can’t manage their care without facilitation and supervision. You and Chrisa choose to misrepresent this, and I really don’t understand why.

      • Erika

        twopaul,

        I am aware of what AOT is, what its eligibility criteria is, what it is meant to do, and what it is. In particular, coming from New York, I am aware of the Kendra’s Law model of AOT. I don’t agree with its criteria, as it is based upon diagnosis, illness severity, treatment decisions and the impact of said decisions, rather than competency to give informed consent, ie it is not required that one be ruled incompetent to give informed consent — or even that one lack insight — to be treated under AOT laws. This not only creates a separate forced treatment standard for mental illnesses than physical illnesses, which makes it questionable as to if it complies with the 14th Amendment, but also risks that a) those who are competent to give informed consent, but are making bad decisions regarding treatment compliance, would be petitioned under AOT and b) that those who lack competency to give informed consent, but have not yet met the behavioral requirements, will not receive treatment under AOT.

        (I am also aware of the fact that no longitudinal studies have been done to determine if AOT is effective past the time the petition is in effect — 6 months initially, with a possible extension to 12, but no more. Thus, any claim concerning its efficacy, including both those who claim that it works and those who claim that it does not, cannot be substantiated.)

        Regardless, I believe that you have failed to understand the key points of my comment, or even what those key points are. Specifically,

        a. I did not misrepresent AOT, as I never represented AOT in the first place. The one comment I made specific to AOT is that it would not have been appropriate in my case, which is not something we seem to disagree upon. The only other point I made regarding forced treatment generally was that it must be based solely on if someone is component to give informed consent, and not based upon diagnosis, illness severity, treatment decisions (including treatment refusal), and/or the impact of those decisions (including decompensation). If one can give informed consent, they should be able to make full decisions concerning their care, including bad ones. If one cannot give informed consent, power of attorney over their care is appropriate until, or if, they regain competency.

        b. While you did not respond to it here, I have seen you comment elsewhere in this thread that you do not see an example where D. J. Jaffe and/or the TAC equated serious mental illness without lack of insight, or eligibility for AOT. Others have already linked you to examples, but I would like to add one, as well. In response to A Letter to The Editor in the New York Times, Jaffe responded with a note about violence and forced treatment. You can read that here, two responses — or the third letter — down: http : // www . pete earley . com / 2013 / 02 / 06 / debating-forced-treatment / (again, remove spaces). In it, Jaffe cites the number of Americans with a serious mental illness, referring to them as the most seriously ill, and then goes on to talk about how that population is violent [towards others] and how AOT helps that population. Torrey has made similar claims and statements. I was pointing out that such a statement is inaccurate — even among the 5% of us with serious mental illness, AOT is not helpful or appropriate for all of us, and only a minority of us are violent. You can see a more detailed explanation of why the TAC’s methods are harmful in another comment replying to you, elsewhere in this thread.

        c. My primary point, which you did not comment on or address at all, is that consumers should and must be included in — and should take the lead in — conversations about mental illness. To not do so is unethical. To summarize:
        c.a On a greater level, this means involvement in house subcommittee forums, national non-profits and non-profit boards. If a forum was held on the troubles facing urban, minority youth and only white, suburban speakers were invited, there would be justifiable outrage, and it would be seen as unacceptable. When a hearing was held on birth control in 2011 and only men were invited, there was justifiable outrage, and it was, by and large, seen as not being acceptable. Mental illness is no different. Nothing about us, without us, is for us. Having conversations on mental illness without including those with mental illness is absurd.
        c.b On a smaller level, this means including patients in — and, to the extent that they are, allowing them to lead — conversations about their treatment. For some, this may mean full control, with only occasional family input. For others, it may mean being able to choose what case worker they are assigned, or being able to request a new one. Consumers should always be included, and encouraged to participate, to the full extent that they are able.

        d. Any treatment philosophy or approach should be built from a basic level of respect for the person it is dealing with. It should actually see the person, listen to the person, and consider that person. As long as it is based upon that, it is heading in a positive direction.

        Finally, I am confused by this statement: “Psychosis is present in dozens, maybe hundreds, of different brain conditions, and all people deserve care.” While I agree that all people deserve care, the idea that those who lack insight are suffering from entirely separate illness than those who have it is not scientifically sound. The person with insight and the person without are suffering from the same condition, but with different symptom presentation. It is not even based upon severity, as one can have insight and have a very severe illness course, and one can lack insight and have a mild to moderate illness course.

        • twopaul

          I believe we only disagree on whether a person who is floridly psychotic and unable to provide consent should be given care. I believe your family already acts on the notion that some people are too ill to manage their own care, and therefore require custodial care. The other stuff I just don’t care about, which is why I have not responded. I care that when my emancipated, autonomous, independent family member becomes too ill to take care of herself, and too ill to provide consent–which happens Very seldom–that she receive care. My position is uncomplicated. No one who lacks competence to seek health care should be left in a state of disease progression. It’s inhumane. I would not fault NAMI if they took a neutral position on this, but they do not, and they have been responsible in California for spreading misinformation about Laura’s Law, in part due to simple ignorance of individual board members, but in part out of a psychology-based belief system. Your family should have the right to provide the care needed for its members, and so should mine. Our needs differ. TAC and MIPO understand the needs of my family, while NAMI just doesn’t. It’s a good, entry level support group, from my perspective, and I respect that they provide solice and connection for many.

          • Erika

            “I believe we only disagree on whether a person who is floridly psychotic and unable to provide consent should be given care.”

            You are either failing to read, or failing to understand, what I have written. To quote from my last post,

            “If one cannot give informed consent, power of attorney over their care is appropriate until, or if, they regain competency.”

            I have made similar statements throughout. I do not know how I can be more clear.

            The reason that I am opposed to AOT, as it is written, is because its eligibility is not based upon [lack of] competency to give informed consent, ie does not require that one be ruled incompetent to give informed consent, but on diagnosis, illness severity, treatment decisions, and the impact of those decisions. Beyond being of questionable Constitutionality, this standard both risks that a) someone who is competent to make medical decisions, but is making bad ones, will be forcefully treated and b) that someone who is not competent, but who has not yet met the behavioral requirements of AOT, will not be treated. Thus, someone who AOT is not appropriate for may be forcefully treated, while someone who AOT is appropriate for may be forced to further decompensate and have their life damaged before being treated.

            Bottom line: Forced treatment should only be based upon competency, or lack of it. If someone lacks the competency to give informed, power of attorney over their care is appropriate.

            “I believe your family already acts on the notion that some people are too ill to manage their own care, and therefore require custodial care.”

            Can you clarify what you mean by this statement?

            “The other stuff I just don’t care about, which is why I have not responded.”

            This is what concerns, and frightens me. Not including those with mental illness in the conversation — from the lawyer with Schizophrenia to the man with Bipolar who was helped by AOT — is a form of marginalization and oppression. It also allows for an incomplete conversation, as those with mental illness are the only ones who can provide the perspective of what it is like to be mentally ill, and what it is like to navigate the mental health system as a patient.

            Inclusion in the conversation should not just be the patient’s fight. It should be something all persons who care about the mentally ill care about.

            “I care that when my…family member
            becomes too ill to take care of herself, and too ill to provide consent–which happens Very seldom–that she receive care…No one who lacks competence to seek health care should be left in a state of disease progression. It’s inhumane.”

            I absolutely agree. If someone is incompetent to give informed consent, for any reason, power of attorney over their care, or the following of an advance directive, is more than appropriate. Likewise, if I lost insight during a psychotic episode, I would want someone to force me into treatment.

            I oppose AOT laws because they are not typically based upon competency, when that is the only standard that should be used. For example, Kendra’s Law — and, as it was modeled closely after it, Laura’s Law — do not mention anything on competency, but on illness severity, treatment decisions and the impact of those decisions, ie they are based upon if someone is refusing treatment and that refusal is putting them at risk, not on if they are component.

            This may seem like nitpicking, but consider this:

            There have been times when I have resisted treatment and services, and this resistance has contributed to destabilization, impaired functioning and hospitlization. This resistance did not, however, come from lack of insight, but from negative experiences with medication (I’m hypersensitive to a long list of medication — I would frequently get all of the more frightening side effects), and a stubborn desire to function without medication. Yet, I was more than capable of understanding what mental illness was, the fact that I had one, the benefits and risks of treatment, and the science behind it. Though I was making risky and potentially harmful decisions about my care, I was still capable of making decisions, and thus AOT would still not have been appropriate. Yet, a decision and behavioral based forced treatment standard — one that does not require one be ruled incompetent — could have put me at risk of being petitioned under it.

            On the flip side, you may have someone who has a history of prolonged episodes in which they lose competency, and cycle through the revolving door of prison and hospitalization. Yet, they have been stable for quite some time, and so it has been more than 36 months since the last time they have been hospitalized or incarcerated, or perhaps it has only occurred once during that time. They are no longer exhibiting aggressive behavior. It is clear that they are now decompensating again, and, by most standards of incompetency, they cannot give informed consent. They do not see that there is any problem, and believe that pills are pure poison. They cannot understand and integrate basic medical knowledge into their decision making process. Despite that lack of competency, they would not qualify for Kendra’s Law or Laura’s Law, as they have not been hospitalized or incarcerated twice within the last 36 months because of their mental illness. The decision and behavioral based forced treatment standard — one
            that does not require one be ruled incompetent — make it so they do not qualify for forced treatment.

            As a side note, if your loved one’s lack of competency is episodic and seldom, you might want to consider setting up a Psychiatric Advance Directive (PAD), which may be more appropriate than AOT would and would allow her to receive care when she becomes incompetent. You can find out more about PADs in CA here: http : // www . nrc-pad . org / content / view / 194/67 /

            “Your family should have the right to provide the care needed for its members, and so should mine.”

            Nobody has the inherit right to provide care for another person of the age of majority, including family — not yours, not mine. However, under certain circumstances, with due process and lack of competency, it is appropriate, but there is a difference.

          • Erika

            Sent before adding —

            “TAC and MIPO understand the needs of my family, while NAMI just doesn’t.
            It’s a good, entry level support group, from my perspective, and I
            respect that they provide solice and connection for many.”

            If you require a support group, then seek that out, or start one. I will not begrudge a person’s need for understanding or community, and everyone has a right to those emotions.

            But the TAC is not a support group — it is an advocacy group. They lobby politicians, write op-eds, spread information, and make policy recommendations. They are both listened to in a public forum, and have an impact in that same forum.

            The language they use, and the actions they take, are dangerous. They spread false information, and the fear-mongering they engage in has the potential to put mentally ill persons at risk of maltreatment. The victim blaming they engage in furthers a dangerous cultural attitude that is pervasive in this country. The bullying they have engaged in has deprived persons with mental illness of services.

            That is failing to understand the needs of persons with mental illness, and is being a part of the problem.

          • twopaul

            I always fail to mention that I don’t advocate for AOT because anyone in my family will benefit from it. I want my county and state to have AOT because I believe it will reduce violence against very ill people.

          • Fighting for Liberty.

            AOT is an act of violence against people you label “ill”.

          • http://www.facebook.com/vero.salisbury Vero Salisbury

            I see your point, although I think that by their very nature most of the determinations to order involuntary treatment include a finding that the person is unable to give informed consent– which is in fact a lower standard than the findings required to order involuntary reatment. What if a person is threatening to kill themselves or others, but appears to be able to give or not give informed consent for treatment? Send them on their way? And, there is a real cost to society when those who are decompensating make that decision to go full speed ahead. I’ll speak specifically, in that my mother would trespass and steal the neighbor’s lawn furniture and mail. She ended up in jail drinking her own urine. I could go on, but I’ll close with the fact that AOT worked splendidly for her, once we got her out of TN and to AZ.

      • http://twitter.com/MentalIllPolicy MentalIllnessPolicy

        Hi. This is DJ Jaffe. Can you tell me where I said “that those with serious mental illness cannot possess insight and are unable to seek care on their own”? I must have missed that. Thanks

        • twopaul

          Hi, You’ll have to ask Erika/Chrisa that. I don’t believe I’ve ever read anything of the sort from you.

        • Fighting for Liberty.

          Maybe when you dedicated your retirement to assaulting our human rights you kind of said that in the subtext Jaffe.

  • http://www.facebook.com/people/Susan-Inman/698786309 Susan Inman

    I can’t see the full links, so I don’t know what comments you are referring to.
    I try to read all of DJ Jaffe’s columns because I find him very well informed. I’ve never seen him make the kind of blanket statements you mention. Obviously people can be struggling with some psychotic symptoms and be very aware of this. But from what I’ve seen and read, this awareness tends to evaporate if the psychosis fully develops.
    I have never seen anything by DJ Jaffe or Fuller Torrey that indicates that they want people with illnesses to be disempowered. They just want to help very ill people to get the treatment they need so they can again assume full responsibility for their lives.

  • twopaul

    I can’t see the links either.

  • twopaul

    Thank you for this link. My family member has been ill for 30+ years and so we have walked many roads in the California medical care system. Frankly, only recently have *psychiatrists* taken a scientific view, and social workers, who carry much of the day-to-day load are still forced to sort of “lie” to pass licensure exams, which are often based on non-science. I say this having two psychiatrists,a clinical psychologist, and two social workers in my immediate family!

  • http://www.facebook.com/people/Gareth-Fenley/1556997131 Gareth Fenley

    Thank you, Mr. Earley. This blog post is absolutely hands-down the best summary of the current situation facing us. I write as an individual who is — and has been for quite a few years — deeply involved in both NAMI and the consumer recovery movement at local, state, and national levels. Again, thank you.

  • David

    Thanks Pete. I agree, There should be room at the table for all of our different voices to be heard. However, I don’t believe this is going to be possible at board level of any particular organisation, given the rather obvious conflict in interest.

    A conflict of interest not just with the two schools of thought but with the objectives of the orgainsation concerned set out in its constitutional rules.

    We have in New Zealand also experienced the difference in views set out in your blog above.

    P.S. I am a chartered accountant specialising in the audit of not for profits and charities. I am also in the unique position of having a close family member who suffers from chronic schizophrenia.

  • Dipak Talapatra

    Hello Pete:

    Excellent article.

    As you know, most of states have out dated laws which prevent seriously mentally ill to get treatment, unless they are extremely violent and cause serious harm to themselves or others. Then, it is too late as we seen in many cases where many innocent lives have been lost and their unimaginable impact on their families.

    NAMI National needs to do something so that there can federal laws regarding how to get very seriously mentally ill to treatment.

    Dipak Talapatra

  • Kate

    test

    • Fighting for Liberty.

      That’s one more test than doctors ever performed on your son!

  • Kate

    I called NAMI national to see if it is true that they will be withdrawing their support for involuntary treatment. The woman who answered the phone checked with her colleague and said that they will NOT be withdrawing their support. Having said that, their support is rather pointless as they do nothing in the way of advocating for the sickest people. But if they they do withdraw their support, NAMI will be no different than MHA & I would think at some point, these two groups will meld into one.

    As the parent of an adult who wouldn’t be alive without involuntary treatment, I don’t see Dr. Torrey as a “lightening rod”. I see him as only one of two people who even care that my child gets care. I reject any criticism of TAC or MIPO from anyone who doesn’t offer any other alternatives while they are criticizing them. People who fall under the umbrella of the folks that TAC & MIPO advocate for are among the most vulnerable individuals in our society. It’s easy to point fingers & say somebody is doing something wrong. But until somebody has a better idea and actually does something about it, I’ll continue to support TAC & MIPO.

    At no time did my adult child ever wish to become homeless or incarcerated when she was growing up. Once she became severely affected by a mental illness, those are the life choices that are expected for her & help is supposed to come by her being rescued from one of those awful living environments at the moment that she is willing to accept such help. And voila, success! Thanks, but no thanks. She is currently living a life that is a lot closer to the one she envisioned for herself thanks to the efforts of TAC & MIPO, and anti psychotic medication.

    • Fighting for Liberty.

      A better idea than raping peoples brains, is not raping peoples brains.

      You seem to be far too selfish to see how many people are killed or have their lives destroyed by forced drugging policy.

      If you wanted your adult child to be stuck with toxic drugs you should have had the courage to hire some goons and stick the needle in yourself. Given you’ve decided to instead call for laws that threaten my human rights and all our human rights, you’ve declared war on our recoveries and war on our human right to feel safe from forced psychiatry. And we will defeat you with every fiber of our being. Never underestimate the power of the human desire to live free of government tyranny. Never.

  • Fred Coats

    It is clear to me that we have two opposing groups competing now in NAMI National – (1) those with serious mental illnesses who have been able to overcome their illness, at least to a significant degree, and (2) family members caring for loved ones with serious mental illnesses who are totally unable to manage their illnesses, are unaware that they are ill and refuse to accept treatment. I am in the latter group and I believe that most of the members of the local affiliates are in this group. NAMI was founded by those in the latter group and if NAMI National continues to increase the influence of the former group, it will destroy itself and be replaced by a new organization which more effectively represents the needs of the families in group (2).

    Fred Coats

    • advocate4treatment

      Local NAMI chapters vary as to number of family vs. consumer members. Our state organization’s president is a consumer who does not support AOT. Although we need NAMI National to support treatment for those with the most severe mental illnesses, AOT laws are passed at the state level. We also need our NAMI state and local chapter members to advocate for effective treatment through effective AOT laws.

  • Altostrata

    This is no doubt because of the influence of Keris Jän Myrick, a psychiatric survivor who recently became NAMI’s president.

    (The articles on this blog would benefit greatly by being dated. Thank you.)

    • Fighting for Liberty.

      YOU GOT THAT RIGHT. And we have an endless supply of us to keep on advocating for human rights, and defeating people who are against our human rights. It looks like the tide is turning and the enemies of liberty are on the run!

  • Distraught Mother

    Thank you for this warning. A few years ago my son, who has a diagnosis of schizoaffective disorder, was said by his psychiatric provider in a letter to the court that he no longer needed medication. At the time he was exhibiting severe signs of psychosis….mute, estrangement, withdrawal, confustion of reality ect. In a copy of one of her prior psychiactric notes she alluded to his medication as the cause of his symptoms. This was ridiculous, based on his history prior to medication and later successful college graduation on medication. This direction of Whitaker will undoubtedly rob many victims of this illness of productive and fulfilling lives. By the way, being a member of NAMI I spoke with them and they referred me to the Treatment Advocacy Center. Brian Stettin was my guide and anchor through advocating for my son. Unfortunately, it was to no avail, and my son remains off medication and estranged, with only a police report last year describing symptoms of his psychosis before he eluded assessment. It disheartens me that NAMI may no longer be an advocacy of treatment for our loved ones!

    • Yolanda67

      Wouldn’t you think a group like NAMI should have actively helped you and your son? You know, “whatever it takes”? I’m so sorry your son isn’t getting care. Don’t give up.

      • Fighting for Liberty.

        RAPING PEOPLE’S BRAINS isn’t “help”.

        Forced drugging advocates will be defeated. Make no mistake. Your intolerable and violent attempts to bring in more human rights abusing laws will be defeated at every turn.

        After all, who are? You’re just parents who believe in psychaitric quackery.

        Who are we? The actual people whose actual bodies stand to be raped by forced drugging.

        ALWAYS bet on the hose in the race with the most to lose.

        You WILL be defeated. You are NOT anybody’s advocate. You are an advocate for the brutal rape of people’s brains and nothing more.

    • Fighting for Liberty.

      I’m glad your attempt to rob your son of his human rights failed. I’m heartened to hear that this was in spite of the best efforts of the “Treatment Advocacy Center”.

      Parents who force the FALSE “brain disease” cult down their childrens throughts are thoroughly misguided.

      I’m extremely glad my parents gave me the freedom and human dignity to recover in a way I wanted, and didn’t try and team up with the violent thugs at the TAC to have me biologically assaulted with forced drugging.

  • Jurriaan Plesman

    The crisis in mental health in not so much due to its organizations but the dismal performance and success rate in treatment of “mental illness”. So long it centers around drugs and/or psychotherapy model at the exclusion of alternative approaches conflict among the “experts” of mental health will continue.
    Jurriaan Plesman

  • http://www.facebook.com/people/Steve-McCrea/100001231226350 Steve McCrea

    Sorry, Susan, but I see new clinicians all the time in my work as an advocate for foster kids, and few really understand psychodynamic therapy principles. Most are, in fact, deeply indoctrinated into the “brain disorder” worldview you assume to be true, though I would dispute that this constitutes a “science based curriculum.” The dopamine theory of psychosis was pretty well discredited in the 80s, for starters. The situation appears to be far more complex than a simple neurotransmitter imbalance, even in psychosis.

    As to trauma, there is no need to assume that awful parents are the cause of trauma. This is a very complex, brutal and increasingly violent world we live in. I would argue that whether medication is or is not utilized, psycho-social interventions appear to be essential in any person’s recovery.

    I don’t think we need more propaganda for a particular worldview. A real science based curriculum would look at all interventions and evaluate their effectiveness in the short and long term, and encourage clinicians to THINK about what might work with a particular individual, rather than branding them with a label and enforcing treatment, whether it’s helpful or not to a particular individual.

    • patriciaforsdyke

      I think that you are trying to say that the way the world turns causes major brain disorders. Where is your evidence? A fair bit is already known about some of the factors that are involved in a person being susceptible to Schizophrenia for example. What is puzzling is why you want to talk about labels rather than diagnosis . Would you be doing this exercise for instance with multiple sclerosis. Do you call that a label ?

    • http://www.facebook.com/people/Susan-Inman/698786309 Susan Inman

      Steve,
      It sounds like you believe that even though science demonstrates that psychotic people may have a brain based inability to understand that they are psychotic, they should be free to choose whether or not they would like to be treated. Do you believe there is a relationship between untreated psychosis and homelessness, victimization, violence, and increased rates of incarceration?

  • http://profiles.google.com/4hiking Cary Schroeder

    I wish NAMI could do something about people with mental illnesses getting fired from professional jobs all the time after their supervisor finds out they have a mental illness. Like with the NAACP. Or a schizophrenic getting gunned down in Florida for having a knife. And the police officers ended up getting off.

  • Karla

    I am a member of NAMI, a consumer, a sibling of a consumer, a spouse of a consumer, a parent of an adult child who is a consumer and often a foster mom to children with mental illness.’ Yes it is possible to be all these things!

    I have been very sick over the last 21 years and yet now am very much in recovery. Notice I said recovery and not recovered. At one point I was institutionalized for 6 months at a facility by my own need to seek help not through a commitment order. NAMI is one of the most important influences in my recovery and my life today. Perhaps it is my affiliate that makes this possible. In our affiliate, consumers and family members work side by side to explore, discuss, educate and advocate for both sides.

    I was a trainer for 2 of NAMI’s consumer programs: In Our Own Voice and Peer-to-Peer for my state for a number of years. Both of these programs have taught me the importance of speaking from “my” perspective and not for all consumers or family members. I have not been fortunate enough to take Family-to-Family, although I feel it would give me much needed insight, because of my affiliate’s resistance to consumers taking part in a family geared program. I was the affiliate leader for many years and although I didn’t agree with this stance (nor do I still) I respected it and did not leave NAMI because we disagreed. I do however feel that I would gain a lot from this education program because as I said I am in many positions with this illness.

    I do support AOT, medication, psychotherapy and alternative treatments such as the use of a vagus nerve stimulator but I also recognize that some of my fellow NAMI members, both family members and consumers, do not agree with my stances. There has never been a need for AOT to be addressed with me because I have always had the insight to seek help when I am sick. In order to make sure that I continue to do this, my family and I have discussed how to tell if I am becoming ill, what to do if and when I cannot make responsible decisions in my treatment and we have come to the agreement that because they love me they will do this whether I like it at the time or not. I do not want to be one of the many statistics in the suicide count although that at times has come close to being true. To this end, I have a Psychiatric Advanced Directive which is something I would not have known existed if I had not been a part of NAMI. My community mental health center never educated me about what one was or how to create on. NAMI did!

    I tell you all this to make a point. NAMI has often been a lifeline for me and my mother who is the person that introduced NAMI to me. I value both sides being involved together to make my recovery possible. Without the voice I was able to find in NAMI, I might not be as far along in recovery as I am.

    I don’t know what the answer is to how much consumers should be involved or why some states and affiliates are not open to all views on subjects. I just know that my experience has allowed the differing views to be present. And for that I am grateful. I realize I am a consumer who has insight into her illness but I also recognize there are many like myself as well as some who do not have this ability.

    Perhaps what we need to look at is not whether consumers should be involved but rather how to make NAMI speak for all sides on differing views. Perhaps I am a dreamer but I believe this is possible in one organization because I have found it to be true in my local affiliate. I just know that without my involvement in NAMI I might not be here today because at times I have not had the insight that I do today.

    Therefore I am thankful that NAMI represents both family members and consumers!

    • Long-time Bipolar 1

      I too am “consumer” who has been helped immensely by NAMI. When I was first diagnosed w/bipolar 1, I took a peer-to-peer class (free); WRAP (developed by Mary Ellen Copeland); NAMI Support groups (now called Connections)–all free.

      My mother had a severe case of schizo affective & killed herself when I was 15 after numerous tries & an attempt to murder us children. This was years ago & she was in & out of mental institutions & my father was finally in the process if getting her involuntarily committed; she found out & finally succeeded in killing herself in a very gruesome way.

      I had my first suicide attempt at 15, but in my 20′s after having my first child I vowed I would never do the suicide thing to my children. One “good” thing that happened by growing up w/a severely mentally ill mother who was delusional (thought we children had Satan’s blood in us; thus her desire to kill us) was that when I became paranoid & thought my husband WANTED me to kill myself or he was going to poison me & that he was plotting against me, I recognized that I was thinking incorrectly & irrationally; anti-psychotic medication helped me to start thinking rationally & get full benefit from 2 years of DBT (my choice to continue so long as DBT & individual therapy w/DBT therapist was SO helpful to me).

      I was able to get off Abilify & reduce dosage of Lamictal. Tried lithium & loved it as far as helping my thinking & moods but it caused kidney malfunction so had to get off it within 3 mos.

      Both my children developed severe depression (son had suicide attempt in Sr. year of high school & daughter had to take a medical leave from Duke for 2nd semester). Both recovered well w/medication & therapy. Son has never had a reoccurrence & was able to get off medication after 1 year & therapy, too.

      Daughter was also on medication & did therapy but had terrible side effects so decided to go off meds. She still struggles (36-year-old law prof married to a lawyer) & has decided not to have children so as not to pass on the defective genes.

      I got trained to teach NAMI’s peer-to-peer class; In Our Own Voice; Provider Ed. (In hospitals & mental health clinics a team of 5–2 consumers, 2 family members & a mental health professional); & have spoken to the Family-to-Family classes, also was on the local NAMI Board of Directors. I also received the state’s Consumer of the Year award at the state conference.

      But not all is rosy, of course, I had a long period of hypo mania (feels so good) that led to a sudden deep depression & suicide attempt 6 years ago that scared me & disappointed me as I wasn’t able to keep my vow of no suicide attempts after having children. But has been a long hard road to try to get my stability back. I fear I will never get to “remission” as I once was for so many years. I have been 296.62 since that suicide attempt (bipolar 1–mixed episode of moderate intensity). Felt such shame at my fall from grace & hid my relapse from NAMI & dropped out of all activities & isolated myself.

      Just now going back to NAMI support group.

      I’m 59 & still attempting to get the best quality of life (probably will do therapy for the rest of my life). And my major wonderful attribute helping me is a faithful & loving husband who doesn’t make my illness the focus of our marriage. I don’t want my illness to negatively affect his life any more than it has to. He keeps reminding me my illness is a part of my life that needs attention, but bipolar is not me or even the major component of my personality. It needs more attention some days, similar to someone w/diabetes whose blood sugar is testing high (or low).

      Please excuse typos, spelling errors & grammatical blunders. I need to go to bed as sleep is an important component to my wellness plan.

  • [email protected]

    As one parent said in California years ago, “I have my PH.D in Schizophrenia.” Our daughter, now 63 was diagnosed at age 17. We had years of trying to get her into treatment. She has no insight and doesn’t believe she is ill. At one time she was off medication for 6-9 months. We struggled to get involuntary commitments. Her illness changed my life and I became an involuntary caretaker. Assisted outpatient treatment is one of the ways to be sure someone like my daughter can avoid involuntary commitments. I am sorry that NAMI has taken a different road from whence it started. Dr. Torrey is the one strong voice who understands our mental health system needs attention and reform.