NC CANSO

SPECIAL NOTE:   This article was written and submitted by Mike Weaver, NC CANSO board member and Executive Director of Mental Health Association of the Tar River Region.

After Christmas, and after picking up a friend at his house near Hartford, Connecticut, we were bogged down in Holiday traffic. We decided to get off onto highway 6 which parallels 84 and goes through Newtown. We saw the many shrines to those tragically killed there and could feel the pain in that beautiful New England village. Not many escaped the tragedy. I thought about the many mothers and fathers, sisters and brothers and extended family members who would feel that day forever. I also thought about Adam Lanza and what he needed that day in order not to kill his mother, students and teachers and himself.

I also listened to talk show hosts and listeners as they espoused their views on gun laws, mental illness, commitment and other related topics. One talk show host clearly said, “the problem is not guns, it’s the mentally ill we need to deal with.” I have been diagnosed with bipolar disorder since 1986 and after each shooting that involves a diagnosed person, the rhetoric ramps up. This time it is stronger and meaner toward those of us living with mental illness.
“The premise that we can predict or prevent violent acts is unsupported. Even in the case of severe mental illnesses, there is no special knowledge or ability to predict future behavior. The fact is people with mental health conditions are no more likely to be violent than is the general population.” (Dr. Wayne Lindstrom, MHA) “The truth is that nobody is able to predict behavior on the individual level. Psychologists and psychiatrists may be able to predict relative risks for groups, but that breaks down when we start looking at an individual person.”(Norman Hoffman, Phd.)

Actually, those with mental illness are eleven times more likely to be the recipient of violence than to commit violence. So, the next suggestion by many is that we need to commit more individuals with mental illness into locked wards and to force people into treatment. We can no longer go around locking up people because they act strangely, talk to themselves or have a mental illness. This is also financially impossible in our current environment. States have tried this. (Illinois lowered its standards to allow the commitment of virtually every person with schizophrenia and bipolar disorder.) There are not enough beds and do we want to return to the world of those with mentally illnesses peering out of state institution windows for a lifetime?

Rather than committing large groups of people and forcing people into treatment, it would be more humane and cost effective to dedicate adequate resources toward prevention, early intervention and recovery oriented services which have positive outcomes. We need to treat people as people and not as diagnoses. It is not about normalizing mental illness any more than normalizing cancer. We need to humanize it so that those living with a mental illness and their family members don’t become the scapegoats for every shooting in America.

SPECIAL NOTE:  This article is written and submitted by Bonnie Jo Schell, Chairperson of the Board of Directors for NC CANSO.

President Obama’s Plan to protect US children and communities from random and planned violence includes one alarming proposal. The President wants all loopholes closed from state and national lists that could keep guns out of dangerous hands—the hands of those diagnosed to be mentally ill. NY quickly passed legislation to force professionals to notify an agent of the state if they reasonably judged the patient as likely to harm herself or others, compromising patient-doctor confidentiality.

Keeping lists of people either receiving treatment or committed for danger to self or others or likelihood to functionally deteriorate is scapegoating the one out of every five Americans likely to need mental health treatment at some point in their lives. The List demonizes the “Other” as The Problem, in the same way that the rhetoric in the last election demonized 47% of our citizens receiving government benefits as being responsible for the high debt ceiling of the US. At least none of the mass murderers since Columbine were members of the 47%.

In scapegoating a person or relatively powerless group is made to bear the blame, is punished and stigmatized for wrongs that were not of his doing. The term comes from a goat let loose in the wilderness on Yom Kippur after the high priest symbolically laid the sins of the people of Israel on its head. (Lev 16:8-22.) In the U.S. we have scapegoated Communists and their sympathizers, Japanese-Americans, Gays, Roman Catholics, the Irish, African-Americans, people from Mexico or South America, and since the 9/11 attacks, people of Middle Eastern ancestry. The Inquisition tortured and burned people making suggestions of religious and social reform; The Holocaust gassed people charged with being a drain on the German economy: The lists of expendables included Gypsies, the Physically and Mentally Disabled, Inebriates, Homosexuals, and Jews—all “useless eaters.”
The Dangerous List would contain many false positives since the only sure way to get services is to say you feel like killing yourself or someone else. Every homeless person in the dead of winter knows that.
The Dangerous List is a rush to “do something” that is overly simplified and not sound:

• Neither experts in criminal law nor psychiatrists can accurately predict the next violent offenders.
• Individuals with suicidal ideation will be careful to not mention it to a therapist or doctor for fear of being put on The List. Whose suicide rates have increased at an alarming rate? Teenagers and senior men, usually not in treatment. There are twice as many suicides among mental health patients as homicides.
• The chances that the list would contain more than 1% of the 5% of persons with mental illness who commit violent acts while using alcohol is slim.
• In these days of mass access to information “in the public domain,” lists of persons with mental illness are bound to be misused. Will Community Colleges and/or Universities check their applicants against The List? Will veterans with PTSD be turned down for further education? Will Homeland Security use The List at airports?
• Those considered to have the personality disorder of being a sociopath without any empathy for others may never be on The List unless a parent puts them on when they kill animals as a child, store up grudges, blaming others, and are socially rejected from groups they wish to belong to.

Back in 1963 when I was diagnosed with schizophrenia, the doctor told my parents to be sure I never received help in the public system or had my psychiatric sessions submitted to a group or private insurance company or I would never be allowed to teach school in Georgia. I learned to pass as “normal.” I was fearful on every job that it would somehow be discovered that I lied in answering the old question: Have you now or in the past been diagnosed or told you have a mental illness? That question, along with birthdate, is gone now since it was a violation of the American with Disabilities Act.

I thought times had changed. Mental Illness is now known to be a condition from which at least 60% recover completely. Hollywood and country music stars, athletes and politicians, have been open about having depression or bipolar and addiction disorders. They get treatment, are interviewed on mindful, deliberate changes in their lives they are making, and they go back to work.
Personally I don’t object to persons who have been judicially committed as a danger to self or others being prohibited from owning a gun, but that prohibition should have time limits and not be for a lifetime.
In the US we keep a registry of those with Tuberculosis because of its extreme contagion and destruction. We keep lists of convicted pedophiles, but not all of those who may have thought about sexually molesting minors and mentioned that to a therapist. Even though a small percentage of persons with diabetes go into a coma and cause automobile or truck accidents, we don’t require doctors to turn in the names of those with Type I or II Diabetes. People with epilepsy in most states can have a driver’s license if they have gone three years without a seizure. We do not have a master list of households to which peace officers have been called for domestic violence or restraining order violations; that information only is revealed in the newspapers after a murder.

The last time I was seriously and dangerously suicidal, I made a daily contract with my doctor to live another day and to write poetry and call a friend every day until I began to feel better. If I had revealed my suicidal thoughts and the doctor had immediately reported me to authorities, I would not have gone back. Compiling a master Dangerous Persons List gives the state a false sense of protection and safety. Furthermore, it removes dignity and respect from a group of people who have not committed a crime.
It would make more sense to reduce the availability of weapons of mass destruction.

Bonnie Jo Schell
January 21, 2013

NC CANSO desires to see progressive change in  our state with regard to how our state-wide community respects and encourages us and our friends.   In recent years, North Carolina has talked about becoming oriented toward recovery in its mental health service system. This means as a state, there is a growing will to focus more on people’s strengths, possibilities, and growth rather than on deficits, with services aimed more at crisis and symptom management. Yet the fastest way to forge a path toward a recovery culture (because we simply are not there yet!) is to engage persons with the lived experience of having mental struggles, addiction, or even some kinds of intellectual or developmental disabilities in both challenging and supporting each other to live better! Yes, in the states where the recovery culture and real life outcomes show reduced crises and hospitalizations (especially re-hospitalization!) there is enlisted the strength, empowerment, and integrity of a strong peer support force!
In fact, in the state of New York (as just one example), many of its most productive services are peer-delivered–perhaps even from agencies that are peer-operated. The factor that has enhanced the growth of peer-services and innovation has been the willingness of several persons with their own recovery experiences to take risks on their own innovations all within a close span of years. It is some of these risk-takers whom this writer considers as mentors. But first, there was a strong culture of consumer empowerment and peer support that influenced these courageous innovations. Further, in that state the emphasis on a different paradigm of care has been so strong in part because a core of the service system has been the use of psychiatric rehabilitation as the backbone of the service array rather than the medically centered approach. And you cannot separate psychiatric rehabilitation (social and functional recovery) from peer support.
What does recovery look like? What does it feel like? What have been some of the road blocks against which people most often struggle? Are we satisfied with recovery or is there even a bigger picture? Without clarity on these, it is difficult for a system to have a true and vibrant vision of the recovery culture we so definitely need. And who can best lend that clarity but those who have walked the walk? These are not profound ideas, but somehow, our state obviously has not sufficiently valued them.
According to the North Carolina Peer Support Specialist Program http://pss-sowo.unc.edu/pssjobs there are currently 721 Certified Peer Support Specialists in our state already. Yet only a fraction of these individuals have found jobs yet (by the way, jobs are posted on the website given). Meanwhile, our state could solve many problems through qualified, dedicated professional peer support specialists.

For instance:
 We are about to undertake the in-reach into adult care homes across our state to ensure that citizens who wish to leave these settings are supported to do this safely and optimally, with growth and possibility being objectives for these efforts. We cannot do this well without peer transition specialists and the lens of hope through which they view life.
 High numbers of repeat re-hospitalizations could be minimized by peer bridgers who help with transition from hospital to the community.
 Homeless persons with disabilities would have a better chance at finding homes. Housing is more available than many think—but housing managers want assurance of Supported Housing programs which in other states are offered by peer specialists.
 Supported employment as a practice is a new objective for our state. Peer specialists can also be very effective employment specialists and network builders.
 Persons with mental illness or addiction with other chronic diagnoses can improve the quality and quantity of their years through a disease management approach with the support of Peer Wellness Coaches. A pilot of such a program is beginning in Winston Salem in October.
 Volunteer and paid roles for CPSS through peer centers and recovery education centers are community assets that must not be underestimated in our need to develop self-help and mutual support groups across the state.

The successful future of North Carolina’s response to persons with mental health challenges, addiction, and some other disabilities will depend on how truly we embrace mutual support and self-help in our communities.  NC CANSO knows peer support is the vehicle.

Note: This article was originally written spring 2012

Is your LME (local management entity) applying with the state to become a waiver manager (or an “MCO” or managed care organization)? The consider this: Through the years, how much “genuine welcome” (good terminolgy found in the original State Plan for Mental Health Reform) has been extended to the consumer community to ensure that the customer’s voice informs quality and progress in your local service system?

Has the LME been open, transparent, and engaging with its local consumer base, or is it more insulated in how it does its planning? Is your local CFAC well attended or is the turnover high? Does your CFAC invite consumers and other community stakeholders to share ideas or concerns on a comfortable level? Does your CFAC (Consumer and Family Advisory Committee) have legitimacy in your larger community and not just with the LME board?

Does your LME administration include asserted community opinion in its quality improvement planning? Is the service system planned well enough to prevent unnecessary hospitalization or crises, which can result in more trauma, stunting growth and recovery? And how empowered is the consumer affairs section of your LME? Does it have a strong voice within the administration? Is the office directed by a well-trained and knowledgable person who himself or herself understands first-hand the perspective of persons needing or using services by having learned from his or her own growth in spite of having a diagnosis? Welcoming consumer responsiveness is foundational to the quality and value of service administration.

These questions point out that successful waiver administration depends on the management style of the LME and on the continued, valued engagement with consumers and other stakeholders inthe communities it serves.

So what about your LME? And is DHHS looking at these elements? We surely hope so, because there is much at risk if we do not have a consumer-informed service system, especially when funds are ever-tightening! We as consumers believe that public dollars must buy VALUE. And we know value.

Change certainly takes patience, but alternately, progress requires patience, hard work, and collaboration. Stay tuned to learn how you can advocate locally and at the state level for changes that bring responsive innovation and solutions. Ω

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EXERCISES FOR EVERY MOOD (See Living Well section)

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The Consumer Voice is becoming stronger now, but not without much work and ongoing outreach across geography and across organizations! Yet this effort is not without reward–for who can better tell our own stories? Who can best enlighten decision-makers and communities about the true nature of our potential to recover or to attain more skill and growth? Who can best explain the positives and the negatives about living in a small facility–a world with glass walls and ceilings that often make recovery hard to envision and which actually creates disability among our peers? The problem is that North Carolina has hurt because we haven’t been involved, engaging others and telling our stories as citizens with valid experiences and to share our hopes!

We often let others define us. We have passively allowed ourselves to be viewed through flawed lenses, created by wrong assumptions in the uninformed minds of others in our communities. They do not know that people can and do recover, that people can contribute to their communities, that just because we have a psychiatric label does not make us less human, less valuable.

Sound extreme?  You be the judge.  Listen to this news clip from a mountain community in our state:   That perspective lives right here in our state–especially in those communities that have the most facilities for persons with disabilities–projecting to local folks that residents are ‘unsafe’ or unworthy to be in the community. You can see this video clip at this link: http://www.wlos.com/shared/news/top-stories/stories/wmya_vid_7291.shtml to get an idea of the assumptions and statements some North Carolinians will make even for public consumption!  ”Build a fence around them,” one interviewee recommends.

NC CANSO has been involved in many ways in advocacy around this issue of respecting life and law and ensuring that people are able to choose whether they live in a facility or in their own setting.  We advocate for the kinds of supports, housing, and services that will help them not to stagnate, but to grow and recover!  It costs less to the taxpayer to provide this than to put them in a “home” and it certainly costs less to an individual who wants to direct his life toward a different vision.  We hope other consumer advocates and consumer-supporters will raise their voices with us about this extremely important concern!  And if you have a friend who lives in an adult care home, be supportive:  reach out, offer him or her courage and strength as so much may suddenly be changing around that person in response to the Department of Justice or another federal agency who has been calling our state to comply with regard to the use of funds to house people in large settings.   Take that person for coffee and a visit and help him have a vision for his or her own growth–no matter where he or she chooses to live.

North Carolina may have pretty roads and trees and hills and art and beaches and mountains and venerable old neighborhoods and updated, upscaled downtowns (in some towns), but this isn’t truly what defines us as a state.  It is the character of our people.  And this is where the story becomes regrettable.

What we don’t seem to have is self-respect. That is, as a state, we don’t respect our own citizens enough to ensure that all are regarded and valued as people with rights, potential, and the care they need as citizens when they need help. And especially when people have mental illness from which so many more of them could actually recover than do, North Carolina shows a diminished regard for its own. Research suggests that between 20 and 25 percent of us has a mental illness, and with the lack of real parity in health care, our troubling economy and job losses and the disabling nature of the illness at times, citizens who will need help from the state at large come from all demographic backgrounds. Yes, these are our citizens and our neighbors!

But we do not fund sufficient services and we don’t fund the right kind of services.  Worst of all, we have warehoused almost 7,000 North Carolina citizens in facilities that had originally been meant for the “frail elderly.”  This means that within these settings, with VERY few exceptions, there have been no activities planned to promote rehabilitation and recovery.  No psychiatric rehabilitative services.  Poor medication management.  Contracts with psychiatrists who may not even live in the United States.  No private place for a resident to withdraw to (small rooms are shared, as well as ONE dresser in most settings). In at least one of our communities, town fathers tried to pass an ordinance that would prevent residents from being able to walk around in the town unless they had a staff person with them.  WHAT?  These settings are largely unregulated and have so few staff, that ordinance would have been a CRAZY idea, had not an attorney from the Governor’s Advocacy Council written a letter to the town manager  about the unlawfulness of this act!

Yes, this has gone on for years!

What defines North Carolina?  NC CANSO invites you to help re-define our state as one that lets go of old assumptions about persons with psychiatric or other disabilities.  Let’s become a home state that truly does welcome its citizens home and to live the life that living in a real home means.  Let’s look at our citizens in light of their possibilities and hopes instead of defining them according to assumed deficits.  Let’s stop limiting their rights as citizens.

As American citizens, we are to have certain inalienable rights.  In North Carolina, if we are to ensure that life, liberty, and the ability to pursue happiness is available to all, then we have some hard thinking and much shared work ahead as we dismantle unacceptable systems and replace them with services that actually cost less and allow people with disability with full citizenship and the right to grow healthier.