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