NC CANSO’s Letter to the Secretary Brajer: Time to Invest in Recovery Through Peer Activity

Dear Secretary Brajer, Interim Director Vogler, Consumer Policy Advisor Ken Schuesselin, Susan Robinson and other leaders:

NC CANSO (North Carolina Consumer Advocacy, Networking, and Support Organization) is a consumer-operated non-profit organization that has been active in our state since August of 2009.  With its limited resources, we have continued to advocate, educate, and developed a vocal network of persons who have lived with consequence of mental ill-being and/or with co-occurring substance use problems.   We move forward on the principle of hopefulness because we know that so many of our fellow North Carolinians—even with severe life struggles or symptoms—can have better lives because of mutual support through peers and other factors, some of which are strengths of our mental health system.

Needs Not Captured by the State                                                                                                     The Board of Directors of NC CANSO is concerned that so few resources are dedicated to developing easily accessible, multi-functioning peer led efforts.  This includes an active, engaged state-wide peer organization that empowers others to recover and contribute to their communities.   This state-wide organization should be engaged with and supportive of the development of peer operated support centers across our state that are “safety nets” to our safety nets, offering supports not reimbursable by Medicaid but essential to the community while helping people to reclaim a social life, gaining self-help guidance and support through easily accessed centers.

Other states have funded such state wide organizations as well as such peer operated supports for many years and find them as a real complement to the formal system of services.  Peer support centers impact individual participants, the local community, and the larger mental health system.  This is evident in the noted reduction of hospitalizations among peer center participants when assessed annually.

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?

Our state must address the disparity between the planning and implementation culture of our public human services system and the recovery culture which has continued to grow out in our communities—often outside of the public system.  Certainly, this requires allocation of funding toward new activity, and the one source especially made available to our state for funding such efforts is the Community Mental Health Block Grant.  In fact, in other states, (Georgia, Tennessee, Ohio, e.g.) much of what we discuss here are funded with the MHGB.

The Mental Health Block Grant in North Carolina                                                                  About five years ago, a group of consumer advocates who met regularly with the Division of Mental Health about system issues—a routine that should now be resurrected—inquired about how the Block Grant was used because we felt that new solutions could be funded with some of those dollars.  To our dismay, we learned that 88 per cent of the block grant was giving to the MCOs and 12 percent was used for other specific initiatives.  We were not satisfied with this fact then, and would be far less so now, if those numbers have not changed.  This is because while the system is still very focused on the medical model as the driving approach to services, we need Block Grant dollars to support the less clinical, more psycho-socially oriented supports to recovery, such as peer-operated services.

But additionally, we know that the MCOs under waiver management have put aside enough funds to draw on to serve the underserved through the provider system.  We trust that someone in the state will ensure that they do use these funds accordingly for client care rather than investing them to grow more money.  Anyway, we must challenge the state to put more funding toward progress-yielding solutions instead of putting more dollars toward less effective yields.

But our biggest motivation for the years of advocacy about block grant utilization is that the Federal Government has intended for these dollars to be utilized in ways that promote rehabilitation and functional recovery to the point that there is less utilization of hospitals and other facility based settings.  (United States Code Title 42, Chapter 6A, Subchapter XVII Part B.  See section on criteria for grant on page 1101 of this link:  https://www.gpo.gov/fdsys/pkg/USCODE-2010-title42/pdf/USCODE-2010-title42-chap6A-subchapXVII-partB.pdf )  Can we really make the case that the current service array and how they are managed and administered is resulting in decreasing inpatient and facility care?  Articles in the past two years suggest we need new assets applied to our problems, and we feel that the Block Grant is on source for funding some of these solutions!

The language of the above section addresses service or support needs where peers can serve and can bring expertise to bear which will have improved outcomes while costing less.  The citizens of our state deserve this!  They can bring the hope-based, strengths-oriented philosophy while also utilizing rehabilitative technique and mutuality to support progress in individual lives.  Peer specialists serve well to link their peers to other resources that may be true assets at lower cost to the system—saving costs in the long run.

A Partnership for Progress:  State Leaders and Consumer/Peer Leaders                Additionally, in the states where state-wide peer organizations and consumer operated services are flourishing, it is because of the partnering relationship between state administrations and the lead consumer organizations.  It is evident, given the demise of the past consumer organization, that there has not been the collaboration around ideas, efforts, and outcomes of the organization’s work.  There has apparently been insufficient mutual accountability between the organization and state staff, which would be required for a strong state organization to help lead peers to improved health and mental health.  The absence of such collaboration calls system culture to question.

We cannot improve our shared system without a culture shift toward consumer inclusion and recovery as defined by outcomes.  An enlivened, supported consumer movement is imperative for this to happen!   We must work together to make recovery happen!  Lip service cheapens what this word really means to individuals and their communities!  The peer community wants to work with the state, not tiptoe around and murmur or just dream.  We must engage each other toward shared goals and there must be financial and shared social support before we can truly move toward being a system that focuses on recovery for the citizens of North Carolina.

The efforts of people with personal understanding of illness and how to get well cannot be underestimated as our state seeks to preserve a person-centered foundation during a time when the system is becoming more commercial and industrial.  The industry voice in our state is louder than ever while the stakeholders to be served or those who are their peers and families and who wish to support them are weaker than before.  People are finding themselves feeling even more powerless against such big bureaucracies and even have a difficult time accessing the help they need from such large and often technology-based systems.

Our Ask                                                                                                                                                      We are aware that North Carolina is to submit its MHBG Application in September, and that it has asked for a reiteration of the previous year’s funding objectives.   We ask you to consider that in light of our changing system, the growth of the peer movement, and the need to empower people not just to have symptoms treated but to find wellness and recovery—the application should be altered.

We request that you:

  • Propose to fund a state-wide peer organization with a budget of $190,000.00 or more (I can supply bare bones numbers) with the plan to issue an RFA to include specific objectives and measurable outcomes to be reported. We have already supplied helpful information on objectives and outcomes to Dr. Vogler and other lead staff.
  • Propose the funding of five peer-operated support centers (peer support centers) at $95,000.00 each (I can supply budget information). We currently have several with no sustaining funding but great outcomes.  We can begin with them, because a shortage of peer support volunteers is threatening sustainability.  Foundations wish to help but will not until someone else is a sustaining funder.  We can have a training network as these five refine their operations and show competency in financial management.  Vogler retained a copy of a budget prepared for operating a peer support center recently.

Please, empower us to empower YOU to help our system better serve our communities!

Sincerely,

Laurie Coker, Director of NC CANSO

Ed Rothstein, Board Chair and the Board of Directors of NC CANSO

Emotional CPR: A Better Approach to Responding to People in Distress or Crisis

“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.  This class was sponsored by the Division of Mental Health and class participants were peer specialists–members of ACT  teams, supported employment teams, and IN-reach specialists–all of whom are working hard to implement the recovery-oriented services and transition processes called for by the settlement between North Carolina and the U.S. Department of Justice.

Emotional CPR was developed bout six years ago by the National Coalition on Mental Health Recovery.  The developers are themselves people who have experienced how communities and systems react to a person having a personal crisis.  They have recovered from mental health challenges and hope to make the world a better, safer place for people having such difficulties.  As trainer Oryx Cohen from the National Empowerment Center said, “We are trying to reform how we respond to people in crisis.”  It’s about time someone is!

Emotional CPR is trauma-informed and promotes true, trust-based connection between individuals.  It empowers a person in distress or crisis as he shares his/her circumstances in this safe dialogue.  It helps, through dialogue, to move a person to a place of hopefulness and focus where he or she can develop a solution–no matter how small–that turns the crisis into a step in a forward-moving direction.

What probably excites me the most about E-CPR is that it is a strong tool for impacting the thought and practice culture regarding response to people needing urgent intervention.     This is important, because how we interact with and care for a person experiencing extreme moods or other unusual experiences has tremendous consequences.  By focusing on negatives, exerting our authority, and addressing a person’s circumstances based only on present symptoms, we can shut a person down or further frighten him so that he shifts into an altogether different mental reality that keeps him from connecting to others around him.   Conversely, by focusing on creating a real dialogue with the person, we remove fear and promote empowerment and safety so that an individual can again call on his own resilience!   How natural is that?  This is what Emotional CPR is all about.  Helping a person get re-grounded and re-integrated through the process of safe and caring personal dialogue.

The acronym CPR stands for three things:

Connecting:  Based on concepts of mutual support, connecting means becoming completely present, listening with focused attention, being “in the moment” with the distressed person so that the priority is respectfully engaging him or her, sharing the risk involved and sharing the power in the relationship so that the person feels safe and not intimidated.  Connection is the medium out of which all other parts of the dialogue grow, so it is maintained throughout the dialogue and does not  slip into superficiality.

EmPOWERment:  Empowerment happens when we help a person find his own power and to exercise it in his life, even in the midst of a strong trial!  The experience of an emotional crisis can be a time when a person realizes he or she is actually more capable than he/she’d previously thought.  This realization enables a person to shift from distress and inaction to passion and power!  (This is SO true, and something crisis workers and others should consider and build upon, potentially preventing crises in the future!)  It is through this empowerment process that a person starts seeing how they can navigate of out crisis and back toward stability.  As this happens, a person finds that hope and potential are revitalized.

Revitalization:  During the dialogue, as a person embraces the sense of safety, mutuality, and empowerment from the discussion, this revitalization comes in the form of  re-connection:  with self, with others–moving back into functioning in community.  It is kind of a re-integration of the true person minus all the fear, helplessness, hopelessness that can sometimes fragment us.  During this process, it is as if the person who had once been distressed has an “ah-ha” moment.  You can see hope, promise, and peace in measures that empower him to move toward wellness.

The Division of Mental Health, and especially Ms. Emily Cohen and Ms. Stacy Smith, are to be commended for their forward-thinking arrangement of this training.  The classmates hope to continue their own part of system transformation through dialogue and through our own mutual support!

Before we all parted, trainer and developer Will Hall said, “This is a room full of people who have the courage to truly BE with people, often people who are pushed aside by the rest of society.”

We are excited to share that North Carolina actually has two people who are apprenticing to become trainers already.  Chad Cagle and Reid Smithdeal are preparing to be able to offer the training here in our state, too.  These guys both live in the western part of the state and had taken part in a training in Asheville last year.  So hopefully we’ll see Emotional CPR take root in our state, creating better results in people’s lives and minimizing the numbers going to  Emergency Departments.

The twenty-two people who participated all agreed they had never experienced the kind of training this approach called for, and it left us all rejuvenated about why we do what we do.  Because we are all people and life is not always easy–with or without a diagnosis!

 

 

Recovery Conference Inspires Unity, Optimism in Face of Adversity

This year’s “One Community in Recovery” conference on November 14 and 15 was the best of the four that have been held.  First, let me say that for many, the title of the conference has begged the question, “Recovery from what?”  Because anyone living in North Carolina and who cares about the lives of people with mental illness knows there is a lot our collective community has to recover from and on many levels.  And then there is the future.

The future of our public mental health system rests more and more on the shoulders of people outside of Raleigh who can unite and give solid messages to those making decisions in Raleigh AND in our local systems and communities.  Never has advocacy from people who have lived experience with mental illness yet who have recovered, people who use services, family members, people who provide services, and people who administer them been more important.  This advocacy must be different in nature because it is based in shared understanding of issues from all the various perspectives above.  This shared understanding impacts ideas and strategy.  It also means that advocacy must become working advocacy, and not just spoken ideas.   That is, advocates of all backgrounds need to be in many important discussions that are taking place related to managed care, the DOJ/NC settlement, health care integration, etc.  There is simply too much at risk for people to remain passive.  Too many things just won’t work right if we, including all reading this article, do not get involved in all the ways we can.  North Carolina must put aside its past and come of age.  It is time for participatory change, whereby all impacted by new forces come to the tables where changes are planned and decisions are made!

I think the “recovery conference,” as the recent event is commonly called, brought many of its participants to the realization that these times are our most urgent but that together, we could help shape communities and systems that focus on people’s strengths and potential, thereby fostering growth and recovery!  I think that we saw that enough people with diverse perspectives share the same vision and are willing to exert new effort toward a different future that we may be finally reaching a tipping point in North Carolina.  If our minds are bent on helping people to grow and recover rather than on maintaining people within the scope of minimized symptom array, this will impact our state’s culture, no doubt.  For by focusing on a people with hope and respecting their possibilities, we have simply elevated their humanity.  What a culture shift that would be!

Topics that Reflect Recovery Movement in North Carolina  

The conference opened with an exciting and practical challenge by Harvey Rosenthal from the New York Association of Psychiatric Rehabilitation Services.  Rosenthal has been aware of the systemic changes in North Carolina for some time, and he is keenly aware of the new requirements of the Health Care Reform.  Further, New York’s own Olmsted-related challenges in the past three or four years are similar to our recent involvement by the Department of Justice because of North Carolina’s historic institutional bias.  This having been said, Rosenthal articulately pointed out how North Carolina was in the middle of the “perfect storm” that will result our state’s best opportunity to design a system based on desired outcomes of recovery and personal empowerment.  IF WE ADVOCATE.  He also pointed to how the development of more distinctly defined peer roles in the system and the heavier utilization of peer support in various capacities can be one of the strongest characteristics of the system of the near future.  He even spoke to the important role of consumer operated services in an effective, efficient mental health system.  Again, WE MUST ADVOCATE!

The second keynote presenter was Lori Ashcraft, one of the co-founders of the Recovery Opportunity Center in Phoenix, Arizona (Recovery Innovations is associated with this, if you are familiar with R.I.)  She spoke of the role of adversity in developing personal resilience and leading to growth and recovery.  She shared her own personal story of recovery and spoke of how the services approach of her company grew out of taking risks on relationships with people, seeing their strengths in spite of the adversities in their lives and focusing on their personal hopes and desires as keys to helping them recover.

Listening to attendees of the conference, I heard so many reflections on things learned from both Rosenthal and Ashcraft, as if the timing of our state’s need and the messages by these speakers could not have been better.  I am so glad these two joined us all in Winston-Salem this year.  But I cannot minimize the information shared by our in-state presenters who were consumers, providers, LME/MCO staff, and others who just care.   If I had more space, I’d love to list some of these very timely topics that were presented!  I realized that so many of us have grown in our thinking about recovery, about person-directed lifestyle and services, about the need for more fully informed and active advocacy, and about the role of peer support.  In fact, during a consumer advocacy caucus during the evening of the first day, a big focus became how to elevate and define peer support so that it becomes a characteristic service in many places in our public system.  There will be more peers involved in systems advocacy, soon, and if providers and others affirm these peers in their knowledge and advocacy, we can help strengthen the system in ways that will benefit all the system’s participants!

I hope you will look for information about the recovery conference as it comes out next year!  There will be more happening, more need to get together then than even now!  Look on our web site for information as it comes available but put it in your mental calendar as you consider education possibilities for 2013.  We need for you to be there, too!