As the Treatment Advocacy Center States on their website: "Every one of us deserves and benefits from respect, hope, family support, overcoming past trauma and all the other experiences on SAMSHA’s list. However, proposing - among other guidelines - that an "essential, common experience" of recovery is being “person-driven” is uninformed, unrealistic and a grave disservice to the estimated 3.3 million people in America currently living with untreated schizophrenia or severe bipolar disorder.

Individuals with untreated mental illnesses that have psychotic features have, by definition, lost touch with external reality. An estimated half of them don’t even recognize they have a condition from which they need to recover. Large numbers are tragically unable to direct even their own health, hygiene and self-preservation, much less their recovery. A “recovery support” strategy that ignores these clinical realities is discriminatory and blatantly ignores a population that is both entitled to advocacy and uniquely unable to advocate for itself."

Additionally, anosognosia is a critical, relevant, and prevalent feature of both brain disorders and recovery. Those that are afflicted by this lack of insight are especially vulnerable and unable to access these high ideals for recovery, as no acknowledgment of recovery as necessary can be made by people who suffer from anosognosia. This neurological syndrome must be incorporated in to any holistic list of 'principles of recovery' and addressed in any recovery plan.

Additionally, again as TAC states: "Factors like … accurate diagnosis, timely intervention, appropriate treatment, patient education, safe housing are nowhere to be found." True reform in this area of medicine is necessary, and the list above is where we should begin.

A key principle for Recovery is mutually respectful dialogue. In October 2010, the following "idea" received top or second place votes in just about all forums. WHAT HAS SAMHSA DONE, AND WHAT IS SAMHSA DOING ON THIS IDEA????

Challenge the undue influence of the pharmaceutical industry in mental health care.
Create more non-drug alternatives in mental health. A SAMHSA summit of key mental health consumer and psychiatric survivor leaders passed the following position paper, please support it:

Bastille Day 2010 Statement – Rockville, MD

14 July 2010

The Urgent Necessity for More Non-Drug Alternatives in Mental Health Care

We are alarmed about the over-reliance on psychiatric medication in mental health care because of the undue influence of the pharmaceutical industry. We see an urgent need for a far greater range of non-pharmaceutical mental health care.

We are participants in the USA Substance Abuse and Mental Health Services Administration (SAMHSA) meeting, “Past, Present, and Future: SAMHSA Efforts to Promote Consumer/Survivor Inclusion.” We are speaking today only for ourselves as individuals, and not for SAMHSA. We applaud SAMHSA's endorsement of the values of peer support, social justice, self-determination, trauma-informed care, and a dignified life in the community for everyone.

As leaders in the mental health consumer and psychiatric survivor movement, we affirm the principle of choice in mental health care, and continue to work towards the elimination of coercion in all mental health treatment. We support the right of those who willingly choose to take prescribed psychiatric medications.

However, the inappropriate prescriptions of psychiatric medication are harming a wide range of the USA population, including infants, vets, people of color and seniors. Severe side effects are contributing to heartbreaking suffering and approximately 25 years of ********* mortality for people in the public mental health system. Advertisements, the media and far too many mental health organizations are disseminating misleading information about psychiatric medication. Some individuals are even involuntarily administered psychiatric drugs over their expressed wishes, including on an outpatient basis.

Our constituency's right to choice, empowerment and self-determination in mental health care is threatened as never before, in the USA and internationally. We call upon SAMHSA to work with their federal partners and consumer/survivors to:

• Address the conflict of interest in the current relationship between the federal government and the pharmaceutical industry.

• End direct-to-consumer advertising for psychiatric medications.

• Complete the President's New Freedom Commission recommendation to investigate the long-term effects of psychiatric medication.

• Independently research on the efficacy, safety and successful ways of reducing psychiatric medications.

• Research and fund non-drug alternatives such as mental health peer-run respite centers and recovery-oriented education.

We encourage all those concerned to speak out about this crisis.

Signed:

Ellen K. Awai
Randall Bosin
Jean Campbell, Ph.D.
Gladys DeVonne Christian
Mary Ellen Copeland, Ph.D.
Jonathan David, Ph.D.
Daniel Fisher, M.D., Ph.D.
David Fuller, CPRP
Patrick Hendry
J. Rock Johnson, J.D.
Jacki McKinney, M.S.W.
James McNulty
David W. Oaks
Pat Risser
Stephen Robinson
Gilberto Romero
Lauren Spiro
Sharon P. Yokote, HCPS

Recovery is undeniably important. But in all the words we are sharing about Recovery, we shouldn't forget that 30-50% of individuals with psychotic illnesses (ie schizophrenia or bipolar) cannot "recover" because they cannot first accept that they have anything to recover from. This is the problem called anosognosia - a common symptom of these psychotic diseases - and perhaps the most difficult symptom because it prevents people from accepting treatment and recovery. After all, why would anyone want to be treated for or recover from a disease they don't believe they have. I am concerned that the emphasis on "recovery" and personal responsibility for that recovery, is going to push folks with anosognosia into the category of "folks who WON'T help themselves" rather than "folks whose disease keeps them from helping themselves" I am afraid research into this very troubling symptom will be shortchanged or put on the back burner by people who don't believe it is "real" - And I see this symptom every day. I realize that many of the folks who worked on these principles are consumers - but they are consumers who recognize their problem and are able to speak for themselves. Please work more with families whose loved ones neither recognize their illness nor are able to speak about it "because it isn''t there!!!!" in their reality.

if a person has lost touch w/reality due to their mental illness -- someone should be able to step in (family, friend, etc.) and make decisions for them - even if it is against their will. A trained medical professional should be able to make this determination based on the patient's history and the any relevent history given to them by the persons family, or someone that knows them well, or lives with them. Concerned family members should not have to go to court to get a person medical treatment. This is the way we treat alzeheimer's patients--people suffering from serious mental illness should be given the same treatment. I speak from painful experience. My family worked to force our family member into treatment and today that person is living an almost normal life (a sharp contrast to living on the street in a psychotic state).

With all due respect, this Recovery "wish list" omits a key factor. Our most severely mentally ill cannot reach a level of recovery without awareness. An ever growing population of psychotic individuals (bi-polar, schizophrenics) require intensive, focused treatment that does not exist today. Lacking insight, they live in denial about their illness and remain untreated until they pose a dangerous threat to themselves or society. Even then, there is no guarantee for treatment. Strict laws intended to protect the mentally ill, prevent family from accessing the much needed care for their loved ones. Forced to involve the judicial system, many of our most ill live in a revolving door between jail and shelters where they suffer further indignity and are placed at great risk. The suggestion that recovery is a "behavioral" process, is insulting to this population who battle their demons every day.

If recovery emerges from respect and hope, then let us recognize the urgent need for reform. Recovery begins only with proper diagnosis, treatment and resources, including after-care and adequate housing. The Definition of Recovery as it stands now, is not inclusive of all mentally ill and needs to not ignore the needs of our most vulnerable.

Rather than focusing on a definition of recovery, I would like to see SAMHSA's
plan/proposal for the much needed funding, research and education that would allow recovery for all.

Thank you for the opportunity to address this very important topic.

Sincerely,
CGT

in order to "update" these guiding principles, we must touch on three hallmarks of individual/family dynamics: behaviour, planning, and speech. there has been much stressed about proper behavior as that's the basis for committments. disorganized speech can also indicate poor mental health. but, little recognition is given to individual planning. it can be key for successful navigation through the various systems we encounter. yet, everyone is talking around the issues with emphasis on community involvement, acceptance and person centered. these are important principles, although they hardly touch on the realities of dealing witht the "system". as noted, if we have either poor behavior, planning or speech, we're in extremely hot water. why jump off center? we need put the emphasis right back where it is. these three hallmarks are the elephant in the room. so, with the these let's include respect to counter the vice of violence towards others, trust to counter slander and a sense creativity to counter apathy. most important, we need mentors to guide us. i have spun my wheels for nearly forty years by listening to quick fixes from psychiatrists.

Goethe said that if you treat a person as he is, he will stay as he is. But, if you treat him as if he were what he ought to be, he will become what he ought to be and could be. As a professional in the mental health field, and the parent of a child with a mood disorder, I know first hand that hope and expectation for a full and inclusive life are essential for our peers with mental health issues. The expectation that one has something meaningful to contribute is essential and should be a goal to which we all strive.

We learn to cope with these life long disorders. The "recovery" movement started at a time when funds were disappearing from the mental health system, and they still are. The goal here is to push people up and out of the system to make room for others who need the hard-to-find services. The theories proposed are good empowering tools, but they are not answers or cures. The answer is funding and fixing a broken mental health system so it can provide assistance to all of those who need it. A society should be judged by how it treats its neediest citizens...

While I think the idea behind most of the listed guiding principles is sound, I do take issue when it states that “Recovery is Person-Centered”, instead I think it would be more appropriate to state that “Ideally, recovery is person-centered,” since that is not always possible.

I apologize for the long response, but many people on this site have called people’s statements into question based on lack of evidence.

There is a small, but very important, population being ignored throughout these various threads, those who are the most severely ill and lack the insight that they are indeed ill. This is not a made-up disease, or something cured by simple nutrition. Anosognosia is real. Most of the comments I've read from "consumers" who have bipolar or schizophrenia and have been able to lead to normal lives, or from those who amount assisted outpatient treatment to torture, don't understand that this does not apply to most people. Not all those who have a severe mental illness have anosognosia or a need for intervention.

I am not here to represent any organization or to try to use propaganda to sway this discussion. I am trying to provide a more thorough understanding of the real issue.

Please hear me out on this. I am consumer who has successfully lived both medicated and not medicated during different points in my life; my mother has bipolar and has decided that she can't function without medication (I completely agree with her--medication ALONG WITH appropriate care from competent mental health care professionals is how she is able to take care of herself); my father has late-onset paranoid schizophrenia and tried to commit suicide three times, had three involuntary hospitalizations, has ANOSOGNOSIA, and has been HOMELESS for the last 10 years where he's been taken advantage of, had his nose broken after being attacked, and was treated for frostbite from sleeping on the cold streets; my sister has severe anxiety/depression and without her medication I would worry for the safety of her and her children; my friend has bipolar and without medication was completely unable to work, leave her house, or function; and my son has something that nobody can correctly label yet, has been misdiagnosed over a dozen times by nearly 20 different mental healthcare doctors, mistreated by medication which caused ulcers, stunted growth, and then weight gain, and who is currently doing much better WITHOUT any medications. Not everyone needs nor responds to medication. In fact the medications of the 1970s and 1980s did my mom more harm than good. Finally science has advanced enough to provide her with appropriate and effective medication.

I can see all sides of this issue.

The issue of anosognosia and the recognition that some of the most vulnerable people need others to help them to get treatment does not apply to all individuals who have bipolar or schizophrenia, but only the MOST severe, like my father. It seems to be easy for many here to dismiss this idea as a family's desperation (yes, many families don't have enough information to help their loved ones effectively and it is a very painful position to be in when you have to watch your loved one deteriorate), or an overzealous pharmaceutical industry (yes, there are definitely abuses there), or incorrect diagnosis (YES, we need more research dollars to be spent on understanding and "mapping" the human brain's chemical functions, to eventually be able to provide reliable evidence of all mental illnesses) or even torture (yes, the psychiatric hospitals have committed many deplorable abuses in the name of medicine), but do these same individuals here not recognize that ALL human beings deserve the decency to be able to live healthy, productive lives, free from a severe disabling condition?

What about Andrew Goldstein and Kendra Webdale? What about Scottt Harlan Thorpe and Laura Wilcox? What about Jared Loughner and Rep. Gabrielle Giffords and the six who died? What about Seung-Hui Cho and the 32 people at Virginia Tech? What about Kelly Thomas and the police department? The list goes on and on. What do all of these tragedies have in common? A person who was severely mentally ill who was not being adequately treated, and whose family knew there was a mental illness that needed to be treated. I am not saying all violence is attributed to mental illness, nor am I claiming that all those with severe mental illness will become violent. Neither could be further from the truth.

However, definition of recovery aside, how in good conscious could the SAMHSA ignore these people in this discussion? While they make up a very small minority, we are still talking about human life and mental illnesses that must be addressed.

Money will always be an issue, but it’s far less costly to provide sufficient care—be it inpatient or outpatient—than to sit by, pretend there isn’t a problem, and allow things to continue as they have been, with people being incarcerated or left to fend for themselves on the streets, which only results in more money being spent and more preventable tragedies.

Let’s look at the facts. According to SAMHSA, homelessness is frequently a mental health issue. Their National Mental Health Information Center lists the following statistics: over the course of 1996, 2.1 million adults were homeless; 39 % of the homeless population in America report having a mental illness, and 20-25% meet the criteria for a severe mental illness. There are also several individual factors that may increase a person's risk for becoming homeless and remaining homeless for a longer period of time, one of which is an untreated mental illness which can cause individuals to become paranoid, anxious, or depressed, making it difficult or impossible to maintain employment, pay bills, or keep supportive social relationships. Homeless individuals with severe mental illness are twice as likely as other homeless people to be arrested or jailed. SAMHSA also reports: “Homelessness among people with serious mental illnesses can be prevented. Discharge planning that helps people who are leaving institutions to access housing, mental health, and other necessary community services can prevent homelessness during such transitions. Ideally, such planning begins upon entry into an institution, is ready to be implemented upon discharge, and involves consumer input. Providing short-term intensive support services immediately after discharge from hospitals, shelters, or jails has proven effective in further preventing recurrent homelessness during the transition back into the community.”

And , according to the U.S. Department of Justice, Bureau of Justice Statistics’s study “Mental Health and Treatment of Inmates and Probationers” by Paula M. Ditton, BJS Statistician: “At midyear 1998 an estimated 283,800 offenders with mental illness were incarcerated in the Nation's prisons and jails.

I don’t pretend to have the answer to everything, but I do know that we must recognize this subset of the population before and after they are incarcerated or homeless, and include them in this discussion.