North Carolina Consumer Advocacy, Networking, and Support Organization

 

ON VIOLENT PEOPLE:

Below are excerpts from staff at the New York Association of Psychiatric Rehabilitation Services, from the inroduction to an article on the issue of how to respond to the proliferation of violent (angry and disconnected) people.  For his full comment with some recommedations as well as for Laura Hayes’ article, “Anger Isn’t a Mental Illness.  Can We Treat It Anyway?” click here.

People who are violently angry are not mentally ill by our current standards.  Instead of treating them, we call them names, we avoid them. Can we do better than that?

One of the most challenging reasons that we lack a system for intervention, is the very nature of the problem. “Violent angry people do not go looking for help on their own. Because they live in a state of perpetually feeling under threat, they trust no one and do not seek out support.”

“Criminalizing emotional distress is not the goal. We should be seeking to heal the individual while protecting the public. This requires a response of compassion to those who frighten or anger us…..and that is no small thing.

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On the TRUEST Form of the Term,  RECOVERY COMMUNITY  here.

 

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Advocates and Legislators Challenge the Secretary:

CAPACITY, OUTCOMES, AND INCLUSION CRITICAL to System Improvement!  

Read more HERE.

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CARPE DIEM!    CARPE DIEM!
 
TOMORROW (27/18)2/ the Joint Behavioral Health Subcommittee of the legislative Oversight Committee on Health and Human Services will be hearing the presentation of the Strategic Plan for Improvement of Behavioral Health in NC.  We appreciate that the committee chairs are allowing time to hear public comment from stakeholders. 
 
The Plan is concerning in that it articulates some objectives for some systemic program change and objectives surrounding integrating care, but it misses two important issues without which we have the status quo perpetuating:
 
1)  System approaches are too narrowly informed, exclude consumer and family voices and those of other community members:  There is no discussion or mention of the inclusion of input by consumers, families, other caring and KNOWLEDGABLE stakeholders.  No reference to Consumer and Family Advisory Committees.  Without valuing input by people who KNOW the system and its products in the lived of beneficiaries, we are stuck with a “Ready–Fire–Aim” approach which has already plagued us for too long.  
 
2)  There is NO strategy for considering OR IMPROVING QUALITY:  There  is mention of our the state’s historically unsatisfactory capacity for effectively mining and reporting the most relevant data (again, no strategy discussed after having said that).  But there is no discussion on quality as measured in terms of the actual outcomes in system users’ lives.  Not comment on standards, measures, customer satisfaction, etc.  
 
Do we want this legislature to approve a plan aimed at lots of productivity of questionable quality and lots of dollars changing hand while individuals are ill-served?  THIS IS THE TIME FOR ADVOCACY THAT DISRUPTS THE STATUS QUO!   PLEASE JOIN US IN RALEIGH OR WRITE TO THE LEGISLATORS SERVING ON THE SUBCOMMITTEE.  
 
Thank you.

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NORTH CAROLINA SHOULD AIM FOR NO LESS THAN THIS FROM ITS MEDICAID REFORM EFFORT!   From New York, but could someday be from NC!   Or could it?  

“While I am sad to go, I am so bullish about our state’s collective future.  Delivery systems across our state are changing and health outcomes are measurably improved.  Organizations are working together as never before and as a result the system is really starting to work like a seamless, patient-centered delivery system focused on results.  I can’t wait to see what the future has in store for your collective work.  Know that I will be cheering you on as you show the world that collaborative, accountable care that meaningfully addresses the social determinants of health, improves health care outcomes as well as community health.” 

–Jason Helgerson, soon to be retiring Medicaid Director for the State of New York
(More Here)
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These Recommendations Can Impact State Strategic Plan Outcomes.  
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NOTHING ABOUT US WITHOUT US:  SYSTEM CHANGES NOT INFORMED BY SYSTEM USERS AND ALLIES WILL FAIL!

The Department of Health and Human Services has released its Strategic Plan for Improving Behavioral Health Services to the North Carolina Legislature, but it doesn’t go far enough!  Read more!_________________________________________________________

NEW SUBCOMMITTEE ON MENTAL HEALTH/SUBSTANCE USE/DEVELOPMENTAL DISABILITIES FAILED TO CONVENE AHEAD OF THE CURRENT SESSION.  BUT WHY?
OUR UNRESPONSIVE SYSTEM IS STRUGGLING AND MISUSING DOLLARS!  PLEASE HELP US ADVOCATE!  READ here !
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“We won’t have a citizen-worthy system unless citizen stakeholders–including those who have histories with these mental health, substance use, and developmental challenges, are engaged and included in ensuring that dollars are buying quality for the people served!”

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As we begin a new year, NC CANSO has had to ask itself what it has learned and what benefit has been gained for our peers in the previous year.  We must confess that this past year yielded little progress for our state.

It is not that we didn’t try and try very hard! But the barriers to our progress and to the “consumer movement” are undeniable in a time when the political scene promises very little action that impacts the lives of The People.  And for us in North Carolina, this will be the case because of national and state levels of government.  Because parties are contending for power while we who are less empowered live the unintended consequences of poorly led public programs, inattentive legislators, etc.

Now we must ask, where are our heroes, our champions?  And how can we unite voices across the state to articulate one clear message:  PEOPLE CAN AND DO RECOVER FROM MENTAL ILLNESS, SO WE DEMAND AN AGENDA FOR PROMOTING AND SUPPORTING RECOVERY FOR CITIZENS IN NORTH CAROLINA?

We need each other now more than ever.  And we need champions:  Champions at the Division of Mental Health, Developmental Disabilities and Substance Use Services and Champions in the Legislature.  We need Champions among our Medicaid officers and we certainly need them among our service providers!

It is our true hope–even our prayer–that light will shine into dark places in North Carolina this year and that in spite of all political wrangling we will see citizens rise up and call for us to stand in the light when it comes to serving those in such need.   Show some light and hope to people who are empowered to make the decisions that impact us so!   We simply must step out of the darkness and out of the shadows into the full light!  There is hope, power, and progress there! the light!

 

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Federal government says NC is shirking its agreement to help mentally ill people with housing and jobs.  Motion filed to have judge order action.  See article.

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FRUSTRATED!

“For years, consumer advocates have met with officials to urge them to support more consumer engagement in system change and more consumer input into vital issues that may be larger than system developments (such as recovery and rights).  State staff are generally friendly, but there are years of little or usually no follow up to our concerns.  The lack of responsiveness by staff when well-meaning individuals share concerns must make us wonder if we share the same values. Does the State honestly share the same hope for recovery that so many recovery advocates do?  Why, then, has it taken literally years of discussions and seeming dismissals of ideas with no communication with us?” . . .    READ NC CANSO’s LETTER TO  SECRETARY BRAJER AND OTHER LEADERS HERE!

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Time to Grow Together for Healing and Recovery!

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Bresson Quote on inclusion
PLEASE SIGN OUR PETITION!  
HELP US TELL RALEIGH THAT IT IS TIME
FOR OUR VOICES AND OUR SUPPORTS TO HELP
MAKE LIVES BETTER IN OUR STATE!
NC CANSO has created a CHANG.ORG petition to give state administrators the support and information that will empower them to implement practices of inclusion that ensure the role of the consumer voice while also supporting consumer operated services and support settings.  
This is urgent in this time that the system  is of necessity becoming much more industrialized and commercialized than what has ever been experienced in North Carolina!  
To see the petition, click HERE!

 

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Article Calls for Government Commitment to System Funding and More Engaging, Effective Services vs Outpatient Commitment
“In this environment, court mandates alone are unlikely to be embraced and acted upon by resource-strapped mental health providers. Meaningful changes in community mental health outcomes will require attention to the intensity and quality of care as well as to its patient centeredness and recovery orientation.”
Dr. Joseph P. Morrissey at the Sheps Center in Chapel Hill
Published in Psychiatric Services, a national online journal
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Mental Health in Politics:  Smokescreen  Surrounds a REAL National Crisis  
See articles HERE.  (Article one of two articles).
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Watching the Headlines!
This federal decision that North Carolina has and institutional bias and favors paying for custodial facility based care over supportive care in the community has brought light and hope to many of us as advocates!  See NC CANSO Responses to Published Opinions Resistant to the Department of Justice/North Carolina Settlement!  Click HERE to read!
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The Governor’s Task Force on Mental Health and Other State Updates
It is easy to lose track of the work going on at the State level that impacts our lives, our advocacy, and our work.  HERE are some updates.
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North Carolina’s “One Community in Recovery” Annual Conference NUMBER 7 was held in mid November, and as in previous years, each year just gets better than the ones before!  Nearly 200 people came from across the state to Clemmons, NC, just west of Winston-Salem, for fresh new understanding, to find friends who share the hope for recovery from mental health and substance use challenges, and just to celebrate together!  This year the planning committee was mindful of developing a conference that would appeal to recovery supporters from both the mental health and the substance use experience.  We feel we accomplished a good balance with the variety of keynote speakers and break-out session topics.  Below are some highlights from the three day event.  Read more HERE!

 

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National Coalition for Mental Health Recovery Responds to Murphy Bill Proposal

Read the Coalition’s press release HERE.

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ATTITUDE CHECK:  WHAT ABOUT VALUE?  See article here.

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NOW WE’RE REALLY COMING DOWN TO IT!

 . . . finally, American society is finally embracing the need for dollars to buy value in health care and mental healthcare. . . If the results in people’s lives are not positive changes in health and the quality of their lives, then they have been failed and the system will prove to be unsustainable.   We can no longer use public dollars to buy poor results . . . read more.

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ttps://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=NJQVMBSW782CG

 

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THINKING DEEPLY ABOUT SUICIDE   
We regret so much when people leave us so finally.  Yet often, when we consider people taking their own lives we tend to oversimplify the issues that may underlie such extreme and final decisions.  Read some provocative writing on the issue here.  Perhaps it is time that society rethinks how best to help people who are at risk of taking their lives.
‘EMOTIONAL CPR” TRAINING COMES TO NORTH CAROLINA!
. . . “Safety can mean control.  But internal safety is liberating and necessary for healing.”  What a gem of a statement, and most any person who has trodden a path to reclaim a meaningful life after having experienced a mental health emergency can understand this. This was stated by Leah Harris, Director of the National Coalition for Mental health Recovery and one of the trainers of the Emotional CPR class held last week in Raleigh.   Read MORE.
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On Advocacy  . . .  Light and Shadow
Advocacy is certainly not easy.  Those who have had experiences that have resulted in their being labeled as “mentally ill” or “addict” know how hard it is to speak truth to power.  And in almost any setting, we are the least empowered.  We know that in this culture, society is generally not “on our side.”    It seems we are always in doubt because our “conditions” are only made visible by behavior.  Yet we know that society is often not right or just, and that it certainly is not merciful, thought there are (thank God!) individual members who are.
So why do we take the big risks many of us take in order to advocate?  Because we know how different things can possibly be some day.  Yes, even that possibility fuels our hope–and hope is what absolutely drives us!   When I see people around me living more actively, more assertively, and moving ever forward toward a higher quality of life, that hope continues to grow!
The problem is that for us, there are two kinds of advocacy:  The advocacy that creates good things and the advocacy aimed at preventing or stopping the wrong actions of the more empowered people around us.  Lately, I have had to mind the balancing of the activities in both arenas, and what I am learning is that one has to be very strong in soul, spirit, and general health in order to keep up with doing both.  Why?  Because the dark so easily clouds the light.  The negative energy, so to speak, that comes from being with or trying to persuade people who do not share the values that are such a part of my being seeps into my soul.  It clouds (though it doesn’t actually diminish) my hope.  It makes me angry and cynical.   It’s hard to be creative when you are feeling this way.
I am resolved that the hope will not come from dark arenas and that my energy is best spent where I can be creative, encouraging on the most personal of levels, and supportive of my fellows–whoever they are.  I can raise concerns to knowledgeable and caring people whose trust has been earned, but most of my focus must stay on the creative and productive side where the productivity is measured in terms of good things happening in people’s lives.
I encourage any advocates  reading this to assess where and how you can best apply your energy as an advocate, or as a change agent at ANY level–even just helping friends who need support to make their own changes.  Because the bottom line is that this is what we all need most in our lives.  Support and validation.  And sometimes this comes faster, cleaner, and in the light of day when we share our hope and keep moving, avoiding the darkness which might be cast by others.
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Almost one month later:  LET US NOT FORGET!
While we are considering bills that threaten our civil rights (yes, much of what could happen with The Murphy Bill are issues of social justice) at the national and state levels (because we do have people pushing for stronger forced treatment laws in NC), only a month has passed since a young North Carolina citizen was murdered by a  law enforcement officer at close range.  Reportedly, the officer said, “I don’t have time for this.”  (This can only mean taking the time necessary to help a family whose son needed assistance getting to a hospital).  Young Keith Vidal, who was having symptoms of schizophrenia, weighed all of 90 pounds, had already been tazed and pinned down to the floor in the hallway of his own home by two officers.   The third officer, just having arrived on the scene, leaned right in between the other officers and shot him in the chest several times.  
My own son, now having left us almost five years ago by suicide, had a similar experience with police officers before.  They did not shoot him, but they beat him and tazed him and broke his arm in two places.  He was in the hospital in Oregon for two weeks.  He was only eighteen years old and victimized by SIX officers.  We don’t know why the police respond abusively all too frequently to people who are acting differently  because of the way their minds are working, but we know it must stop.  Because people who are acting differently because of mental disarray, influence of substances, or developmental issues are fully human.  They are not sub-human, and are due the rights of all citizens.  Innocent until proven guilty, due the assistance they need if they are in trouble.   Yet has stigma extended its ugly reach so far into society as to be the cause of abusive killing?  And what a harsh reality that so many officers are not held accountable for their own behavior after doing so much damage to or ending lives.
NC CANSO has begun advocacy on many fronts because we believe in the full citizenship of all people.  We are asking for non-police Mobile Crisis Response Teams or mental health crisis specialists to remain on call to be contacted by the community or by the police so that police can participate indirectly, but the actual face-to-face intervention is done by a “people whisperer,” as one of my friends says. 
We hope you will join us in our advocacy as we ask for the right services and training so that we have more “people whispering” going on–encouraging people to choose help toward recovery.  This is what we want and need–NOT forced outpatient treatment!s
Please stay tuned, and talk about this important issues with friends and colleagues.    We surely thank you.
 
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“It’s in recovery, Coker said, not institutionalization, that the state should be investing.”  (article by Taylor Sisk) NC CANSO urges caution about opening more hospitals before ensuring community services (see NC Health News) links http://www.northcarolinahealthnews.org/2013/08/02/advocates-offer-options-to-a-new-psychiatric-hospital/

http://www.northcarolinahealthnews.org/2013/08/01/advocates-ask-is-a-new-psychiatric-hospital-what-nc-needs/

person live a better life?), engagement (real, balanced relationships between service providers and service users), etc.  I have written about some of these changes on this blog site.

One thing we are excited about is the hiring by DHHS of Jessica Keith, North Carolina’s Special Advisor on the Americans with Disability Act.  She was brought in to oversee the implementation of the North Carolina-Department of Justice Settlement which has followed the investigation and findings by the DOJ of our state’s institutional bias with regard to responding to the needs of the community of persons with mental illness.  Jessica is very rights-oriented and has a personal philosophy that supports the strengths of people as the foundation to build upon rather than fencing them in because of their deficits or passivity.   It is a sign of responsibility by our state’s leadership to have found someone of Jessica’s savvy and conviction and brought her here to ensure lasting change!

Another big change in our state besides the DOJ initiative is that advocates, leadership, and a growing number of providers are ready to embrace the turning of this big ship from its former “medical” orientation  to one that aims to help people truly recover!  That is, we are currently focused on managing symptoms and on crisis care more than on helping people live a healthier life of growth where they can recover.  Now, between the mandates to contain costs of care and the moral call to help people live more independently and to find themselves outside of their illness, our state is starting to move in a new direction!  As consumer advocates, we are happy because we have been urging the state to take a clear step toward developing and agenda for a recovery oriented systems for the past two years!

DHHS is planning a one-day Recovery Summit, a working meeting to include staff from LME/Managed Care Organizations, many consumer advocates, and several other stakeholders to establish foundational concepts upon which to build recovery policy and next steps.  Because of the fixed amount of dollars for this, the attendance is limited (hopefully the Recovery Conference will be a good place for larger follow-through!).  The key presenter and leader of this discussion is Mr. Harvey Rosenthal, who opened many eyes about our convenient timing to move toward a recovery focus when he was with us in November at the annual Recovery Conference.

Other changes coming at us fast are related to financial resources in our state and the fact we have a new leadership.  As ‘consumers’ we should advocate for an efficient system for billing and authorizing services so that we don’t lose valuable service providers.  After all, a consumer’s choice of whom he/she has as a provider should be a state’s value, just as we value other things that make people appreciate full citizenship!

Keep checking us out for more news and thoughts.

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We Challenge Our State!

” . . . In North Carolina, if we are to ensure that life, liberty, and the ability to pursue happiness are 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 disabilities full citizenship and the right to grow healthier.”   Read more here!

Let us know what YOU think!  It’s important to us.  You can comment after the article when you click on the link.  

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ACRONYMS AND SHORTCUTS List

DHHS   North Carolina’s Department of Health and Human Services, the part of our goverment that is lead by the governor’s appointed Secretary of HHS (in our case, we have Secretary Cansler).  His office is tasked with directing the funding and services for health and safety needs.   Many of our most current interests relate to mental health, developmental disabilities, and substance abuse service needs.  However, the Secretary’s department must also work on ensuring primary health care needs, safe drinking water, clean restaurants, and many other areas.  SO, Secretary Cansler has developed a new role to help him in his effort toward mental health services in the last two years, the Assistant Secretary for Mental Health within DHHS.

DMH or DMHDDSAS North Carolina’s Division of Mental Health, Developmental Disabilities, and Substance Abuse Services, a subdivision of the state’s Department of Health and Human Services.

LME     “Local Management Entity”  A mental health care management organization charged with developing and overseeing an adequate local public service system that allows citizens ease of access to the appropriate services when they need them.  LMEs are to ensure service value (quality for the expenditure) and reduce the need for citizens to go to emergency settings by linking them to the right services early when people need them.

LOC     The Legislative Oversight Commitee on Mental Health, Developmental Disabilites, and Substance Abuse Services.

DMA     The Division of Medical Assistance, the division which is responsible for ensuring that persons eligible for medicaid have necessary services available across our state.  Also, DMA is responsible for ensuring that medicaid dollars are used responsibly.

8 thoughts on “North Carolina Consumer Advocacy, Networking, and Support Organization

  1. Quote (test): “Friends are relatives you make for yourself.” Eustache Deschamps

  2. Friends are God’s life preservers.

  3. I appreciate information about directions with Military Veteran because there is a gap in service from military to Veteran service. If not other than psychological reason for military discharge, the medical authorizations are not immediately within Veteran facilities. Post Gulf War and Post 911, the caseloads fell upon deaf ears in addition untrained service providers in the local communities, treatment facilities or prison system. What is the difference in the two decades?

    • Mr. Jeffery,
      Thank you so much for this comment and your question about why the response to individuals from the Gulf War is so different from our soldiers and ex-soldiers who need support today. The answer likely comes down to insufficient funding and insufficient planning and training. So many problems do come down to this. However, I am reaching out to one of our board members who does work with veterans and who may be able to assist you if you have not already tried all the resources available where you live. Can you please write to me to permit my sharing your email with a board member? Thanks for commenting and please pardon my own delay–we are at this point a voluntary organization and short on time we wish we had for our peers!

  4. Keep on, keepin’ on. Pause, Pray, Proceed.

    • Thanks for the encouragement, Carol. Lots to do, but pausing and praying will help us stay healthy as we respond to the needs of our community and advocate for more dignity and quality!

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