Fewer days experiencing hallu
Like most of SAMHSA's efforts, this fails to focus on people with the most serious mental illnesses. For them, recovery is fewer days experiencing hallucinations, delusions, psychosis, and anosognosia. Fewer days homeless, incarcerated or being bounced program to program. Recovery means fewer attempts at violence to self, violence to others, suicidal ideation. SAMHSA should focus on serious mental illness rather than continuing kowtowing to worried-well. Has SAMHSA no heart?
I would add to that, that experiencing this stigma/oppression/discrimination from the very organizations and agencies that are set up to 'help' those of us experiencing symptoms of mental illness, appears to be common, is totally unnacceptable, and devastating to those of us who have been there (myself included). When so-called treatment causes trauma, it is a failure. I've been labeled a "treatment failure" when in reality it was the treatment that failed (year and years of being told I had to take harmful meds in order to live a purposeful life, one example and it was a lie).
In my opinion, the daily tragedies (which some of us have been fortunate to survice), result from relentless societal stigma, discrimination, and oppression which has resulted in a lack of access to alternative recovery-based community supports and services, or for people to understand this is what is needed. In the current system there is a lack of choice and voice, which is the problem! Let's change that.
Sarah Harper commented
I and my friends have nearly been destroyed by having "help" forced on us--being locked up, held down with needles stuck in the *** to tranquilize you, tied to beds, told that none of your opinions are valid because your thoughts are diseased, forced to take drugs with mind and body-crippling side effects. None of this "help" made the suicidal and violent thoughts go away, it made them worse. Drugs would sometimes not work at all, sometimes dull voices/visions for a little while and then stop working. None of it helped us get good jobs or a good place to live, although some of us were put in group homes that were barely any better than hospitals in terms of surveillance and control. We were all diagnosed with severe stuff: schizophrenia, borderline, etc. We're at different stages of recovery, but what's helped us all the most is friendship. Those who truly cared for us did not lock us up or tell us we needed to recognize that we were sick in order to recover, but stayed with us when we were in deep pain and talked us through it, and encouraged us to go for our dreams. They didn't diagnose us or judge us, but listened to us.
Oh and, Deborah Fabos: your science is plain wrong. What destroys brain cells is anti-psychotic drugs. Read Robert Whittaker's extensive review of the research on this subject in "Anatomy of an Epidemic".
Kathryn McNulty commented
I live with a serious mental illness. Serious enough to interfere with my ability to work, to limit my life in substantial other ways, to have constant "residual symptoms" of voices, music, fear, isolation, and to first require a rep payee as a condition of receiving disability. And, I am living well. I have learned to cope, to accept what I can not change, to adapt. I am part of a loving marriage and a loving family. I have children whom I love to pieces and of whom I am extremely proud. None of this has been easy. I believe in the dignity of risk, the importance of life long learning, the power of mutual support, and the necessity of choice. No one could force me to have this good life. Ultimately, I had to figure it all out, and I had excellent help doing so. I am not the exception. I am the result of being loved despite my ability to reciprocate at times, the faith held by others that things would get better despite my certainty that they would not, and my willingness to consider that symptom reduction was not necessarily the non plus ultra of life with psychiatric disability. Had people sought to control instead of encourage me, I would not have survived.
Change Mental Health Laws in Kentucky commented
How can a person with an "untreated" serious mental illness, “live a self-directed life” … when over 50% of people with Schizophrenia and Bipolar lack "insight" that they are ill? How can these individuals “find” recovery? Even when these individuals are hungry, homeless or barely clinging to life, they will often deny help ... and therefore will never know the meaning of "recovery". Or they become a victim of their own illness, self-medicating ... ending up in jail, prison or dead in the streets.
The only people who can find their path to "recovery" are individuals who recognize their illness, unless some effort is spent to help them with perhaps “Assisted Outpatient Treatment”. Without a "bridge" to help that person achieve wellness, which most likely means a life support team, housing, medical providers, supportive employment, etc ... then "recovery" will never be possible. To gain the supports needed for recovery, "treatment" is needed to allow the fog to lift.
It's great for SAMHSA to spend time and effort to ask for feedback, but are you considering the "chronically" mentally ill population in this survey? Kentuckians waste millions on dealing with these individuals through the Dept. of Public Safety and too much of the funds that SAMHSA pours into the state is irrelevant!
I have reviewed closely the history of how SAMHSA grants are utilized in the state of Kentucky. There is room for "assisted outpatient services" which would help prevent individuals from being criminalize for a neurological brain disease ... before they are able to access treatment. Again, please adjust your definitions so this these individuals are not left off the list!
I like the comments that Ilene Wells made.
Thank you. Please continue all your thoughts and ideas to this blog......The solution is going to take hard work and people like you all to tell their stories and get the right help for our loved ones.....Mental illness deserves the same treatment as Cancer, Diabetes, Alzheimers, etc......
Stephen Segal commented
Serious mental illness requires serious intervention, even if that means requiring someone to get treatment that they don't recognize they need. Without it, the illness destroys them. A definition of recovery for seriously mentally ill people must include management of that illness without which "living a self-directed life' is simply a meaningless phrase.
This is one definition of recovery but only looks at medical aspects. My comment at http://feedback.samhsa.gov/forums/129063-definition-of-recovery/suggestions/2176441-full-recovery-incorporates-both-personal-and-clini?ref=title shows that this is only one aspect of recovery. Focusing on symptoms and illness can backfire by making people think they are just their illness and losing sight of their hopes and dreams and strengths. I know that Treatment Advocacy Center is concerned that advocates who have recovered do not represent people who are still very caught in their illness. We believe all people have the ability to have complete recovery. Telling people that they best they can hope for is symptom reduction can actually prevent them from working for full recovery. Maybe if your family member is completely stuck in their illness, maybe the doctors and professionals and medications have done all they can. Maybe people who are stuck need something different rather than more of the same - a word of hope and encouragement from someone who knows where they're at. Maybe a dream that they can completely recover with BOTH clinical and personal definitions can give them the spark they need to become willing to find their own self-supporting strategies. See more at www.corinnawest.com
And so how do you propose SAMHSA do all of things things DJ? Money for forced drugging and locked wards? That was already tried and failed. It is failing people as we speak and will continue to do so.
Lynn, the problem is that SAMHSA does not recognize that there are individuals, like my brother Paul, who cannot direct their own treatment. #1 on their list is to have person-directed care. If this were applied to people with advanced Alzheimer's, there would be individuals with Alzheimer's wandering the streets homeless, just like the hundreds of thousands of homeless individuals with severe mental illness. 50% of people with schizophrenia have Anosognosia, the lack of insight into one's own illness. How SAMHSA can ignore this and encompass a mechanism for recovery without recognizing this, is like sticking their head in the sand. Person directed care can only work when the person understands they are sick.
In my opinion, the process for recovery needs to encompass the following:
1. Patients should be allowed to stay in-patient care as long as necessary. This means that the Medicaid Institutes for Mental Diseased (IMD) Exclusion needs to be repealed - permanently.
2. Definititive criteria needs to be established to assess an individuals ability to move from in-patient care to out-patient care; from group homes to assisted living apartments; from assisted living apartments to less supervised apartments, etc. The current system seems to assume that everyone can live in their own apartment until proved otherwise - often through trial and error - and the outcomes are sometimes disastrous and lethal (see Kelly Thomas).
3. The release/step-down process needs to encompass at least three phases:
a. Assessment - using criteria developed as I already mentioned.
b. Transition Planning - including a mechanism to rescind the transition if, during the planning phase, it is determined the individual is actually not ready to be transitioned.
c. Follow-Up - including a mechanism to re-hospitalize/step-up the individual if it is determined the transition is not going well.
This will require that organizations such as SAMHSA recognize that millions of individuals do not have insight into their own illness and that they cannot direct their own treatment, as was the case of my brother Paul. This will require loosening the HIPPA laws to enable family members to be informed of and participate in their loved one's care. It will require better civil commitment laws so that individuals can be re-hospitalized if necessary. This includes Assisted Outpatient Treatment laws enacted and enforced. It also involves treatment vs. incarceration - so more mental health "courts".
The proposed definition does include all levels of both illness and recovery. I don't understand why people who have commented are taking offense. Is there an agenda at play here? Someone orchestrating it?
I like the definition of Recovery that encompasses a system that enables individuals to live in the least restrictive environment possible, based on that individual's capabilities. This would mean that if someone was not capable of living on their own, they wouldn't be pushed into and independent living situation they can't handle, as happened to my brother Paul. To assume that everyone has the capabilities to direct their own treatment would mean that Alzheimer's patients would be wandering the streets just like people with untreated, severe, mental illness are. Why, brain disorders, like schizophrenia and bipolar disorder, are treated differently than Alzheimer's is beyond me.
Mary Z commented
This could be a quote from an Oprah feel good show. I shudder to imagine the time and resources that were devoted to developing something that is so irrelevant to someone who is suffering from the symptoms of a severe mental illness. What a shameful waste of dwindling federal funds.
rose king commented
This definition stigmatizes science, medicine, treatment, education, working with trained, ethical professionals, seeking continuity of care, a medication regimen that can be managed as needed, and therapeautice counseling.
sandra turner commented
shallow definition, excluding those least able to help themselves,or to speak for themselves. i agree with the writer, m e n t a l i l l n e s s .
Karen Easter commented
Wow - that is some pie-in-the-sky working definition I just read through my extra strong pair of rose colored glasses! Seriously though, exactly why are the seriously mentally ill totally looked over by SAMHSA? Isn't that the million dollar question here? (no pun intended)
Lois Earley commented
This is the definition of recovery my family member lives with. It sounds like SAMHSA's definition only applies to addiction because it doesn't represent the reality of serious mental illness at all.
Similarly, fewer days of substance use would be a concrete, quantifiable gauge of recovery. Or we could stick with the 'flower-smelling' yardstick and just say that everybody's doing quite fine.
Deborah Fabos commented
It is those who suffer from a severe mental illness who need Laura's Law to insure that there will be enough brain cells for a recovery in the first place! With out proper treatment the brain cells that are needed for a recovery are burned away with each psychotic episode. It is critical that treatment be made available at the first on-set of the severe mental illness! Laura's Law now statewide in California!