On the Truest Form of the Term, Recovery Community

WE NEVER STOP learning and that is because the world around us keeps changing. In order to abide in it, we must, too. As a lead advocate, a peer specialist, and a systems thinker–even to consider community level solutions I am finding we must be backed up to walls formed by language. This makes local community efforts even tougher!

As a person who tends her own mental wellness and who has lost a son to the overuse of alcohol coupled with his own mental ill-being, I so much want to help bring our community together around solutions that can reduce suicides and accidental overdoses and crisis needs and improve people’s opportunities to choose health and personal growth! Yet I am finding that our communities are informed by trends that keep our suffering siloed.

Suffering is not in a silo, and mental suffering can look like something with a psychiatric label or with a substance use label.   But truly, our shared focus is on mental suffering, patterns of it, how our wills are involved and therefore our choices–AND the patterns of a community’s response to it.

So if we in our local community begin to form a “Recovery Community,” as it has become defined only as those with substance use histories and their allies, it is not enough. I have looked up the language. I have hoped to read fact that a recovery community is actually one that supports recovery of people with mental suffering or “dis-ease”  whether or not it is related to addiction.  But clearly, it is not.  Yet for years, I have had a broader perspective on what a recovery community is and who recovery allies are.  Am I just short sited, or far-sighted?  I would hope I can assume eventually communities will support recovery for all, and that society will learn that substance use is in its purest sense a response to mental pain, as is mental ill-being.  Both of these are biological, psychological, social/relational, and spiritual in nature.

Currently, opioid use is governing so much of what is being funded, what is being seen in our emergency departments, and what is becoming the center of so many local community efforts across our state. This is a good thing, but does in go far enough? If we focus so much on solutions that mostly meet the needs of opiate users without regard for their mental wellness otherwise, is it enough?

And what about the role of peer support in our communities? Across the state, do we have the breadth of experiences being attracted into peer support work so that a person who is comfortable understanding the needs and thinking of a person who has a substance use problem also understands how to support someone who may be having extreme mental states, even psychosis, without dismissing this as merely a symptom? Because it is not. Our mental experiences, including intoxication for alteration with substances, are so often how our tender minds respond to traumas that are simply mind-blowing. Research supports this.

So how do we stop separating our potential to recover a full and meaningful life after ill-being, including substance mis-use? It starts with a discussion, and it needs to start now, because otherwise we will have lopsided community responses funded and operating while some go without the support they deserve to reclaim a meaningful life.

AS for our local community in Winston-Salem, I would like to see and strive to have a formal Recovery Community.  However, I wonder what that work to form such a community would look like. Until all of our local citizens who suffer from mental ill-health--INCLUDING those whose dis-ease with life have led them to tragic opioid incidents–are valued as deserving our earnest support, then we cannot truly have a “recovery community” in its sincerest of meanings.



Lead Advocate Shares Analysis on Current Advocacy Issues

The following analysis is shared by Martha Brock, long-time advocate for better services in our state:


I have learned some things recently, as I attended the Legislative Oversight Committee on DHHS in December and January and the Medicaid Behavioral Health Subcommittee this past Wednesday, February 28.  I have the advantage of living in the City of Raleigh and being able to more easily meet and talk with (and listen to) legislators that are tasked with making the laws that affect DHHS beneficiaries.

See NC Health News web site and Rose Hoban’s story titled “Behavioral Health Plan Still Needs Refining” published this week.  I was one of three consumer disability advocates who addressed the Subcommittee and commented on The Behavioral Health Plan dated February 1, 2018.

Here some things I have learned.

  1. Dave Richard, Deputy Secretary of NC DHHS and leader of NC DMA, has an extremely tough and thankless role to play. The Cooper Administration is meeting resistance fueled both by policy differences and by the partisanship of legislators.  Sometimes it is hard to separate the two motivations so as to be able to come up with proposed compromise.
  2. We, as advocates, have to cease clinging to the MCO system now in place—and even to the current Consumer and Family Advisory Committee (CFAC) model. I prefer to discuss the concept of “inclusion” of ALL Stakeholders at all levels of governing:  both local and state.  This means as a new infrastructure is created after the federal authorities approve North Carolina’s plans for Transformation, we will have to urge continued roles for advisory bodies.  These should be modeled on the CFAC statute and to be included in statutes and rules.
  3. While the new advisory committees or Boards and Councils may be modeled on CFAC, we may have to advise NC DHHS on a different model or re-named system of advisory bodies for the state and local Managed Care system. These bodies will of necessity reflect the new realities of the newly implemented Medicaid and non-Medicaid delivery of services for DHHS beneficiaries.

Here are some issues for you and your CFAC to consider as Transformation moves quickly forward.

  1. What can you do as a CFAC memberor community advocate  as the NC General Assembly addresses Medicaid Transformation?  Who should you talk to as you advocate for improved services?
  •       Talk to your own representatives in the legislature in Raleigh while they are at home in your area or by phone.  If you do not know your legislators (in the State Senate and House of Representatives), go to ncleg.net and then to “Who Represents Me” tab.  It is important to look up their contact information and to note which committees they are on.  Look in particular for the DHHS Appropriations Committee members and those on the Legislative Oversight Committees on DHHS and on Medicaid.
  1. What are some of the key issues being looked at by the NCGA Committees, particularly the Legislative Oversight Committee (LOC) on DHHS and the LOC on Medicaid and its two disability focused Sub-Committees?
  •       First, the single best source of reporting on what is happening in Raleigh is NC Health News edited by Rose Haban(referenced above). There are other reporters including Richard Craver at the Winston-Salem Journal who write on MCO issues, but few who cover legislative activities.  Unfortunately political publications like the ones edited by John Hood or by NC Policy Watch are NOT addressing the important developments, as Transformation is discussed at the NCGA.  Nor are many associations or trade groups including the NC Assn. of County Commissioners.  com and their Capitol reporter, Laura Leslie, sometimes cover these issues.
  •       It is important to remember bigger is not always better. We need to continue to support a dual system of Medicaid Managed Care that supports smaller providers as well as the larger ones. How many of you recall CABHAs?  Those entities and the demands the model placed on small groups and solo providers put many out of business.  And, those providers are still gone, as reflected in pressures on workforce availability in NC.

We cannot have a successful model of care in North Carolina in two years, if one is put in place through trial and error.  As the plan Secretary Cohen submitted to the NC Legislature states, we need to learn from NC’s previous errors and from what has worked in other states.  It is essential that the plan put in place also reflects the experience and knowledge of those served by the old county system and the current LME-MCO system, and only through our assertive advocacy will that happen.


As Laurie Coker asked at the Sub-Committee meeting Wednesday, “How will quality be measured?”  Will consumers and family input be included NOW in the design stage ahead of full implementation and final federal approval?  Will the quality improvement processes be designed with our input and will measures include consumer and family survey instrument reports?  Will our opinions really matter?

What are your ideas on these or any other issues on Medicaid Transformation and on advocacy on the issues affecting us and our families?  Now is the time to raise these issues and speak up to your legislators and to the leadership of NC DHHS.

Advocates and Legislators Challenge the Secretary: Capacity, Outcomes, and Inclusion important to System Improvement

This week’s legislative meeting addressing the new Strategic Plan for Improving Behavioral Health Services was a lively one, with so many important issues brought up by legislators and advocates! We are moving toward a shared platform of seeking an appropriately staffed, user and family-informed system that focuses its dollars on outcomes in people’s lives! There was genuine concern from legislators who spoke about family members whose experiences had become their own experiences! And as advocates shared about the importance of Community Inclusion (recent presentation in Raleigh) becoming a characteristic of an effective system, legislators nodded support. THANK YOU to all who have been writing to or reaching out to their legislators, and THANK YOU to those advocates who spoke during Public Comment time!

See meeting details from NC Health News:



TOMORROW (2/27/18) 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, caring Advocate!

Absolute Inequity!

On page thirty-seven of the Strategic Plan for Improving Behavioral Health in North Carolina this document briefly addresses peer support. It states that “Peer Support can be an important component of substance use disorder treatment.”  It thens sets out describing the virtues of peer support.  However, it lacks some important substance and this omission sadly has charactarized a troubling and seemingly prevalent attitude among leaders of our state’s service system.
There is no language that suggests the plan values peer support as a crucial means for helping people with mental health challenges to recover!
Sadly, this statement parallels the history we have experienced in our state that resources that could be used to help our brothers and sisters with mental health challenges (funds, service development that promotes mental health recovery, mental health consumer orgazing), are being used otherwise.  We cannot even get funding for an active consumer networking organization–which is why NC CANSO has for nine years remained a network instead of an empowering organization reaching into communities and engaging our peers toward better lives.  But alternatively, mental health consumers in North Carolina do not have nearly the resources made available for empowering them.  Grants for operating local peer agencie.  Funds to seed other substance use recovery networks.  Toss us a bone!  We recover, too!
Or do the staff at the Divsion of MHDDSAS perhaps question that we can recover meaningful, contributing lives?  I have actually asked two individuals if it were possible that they do not feel enough of us recover to to invest in us!  I have received no answer Are they afraid to allow us to take on community responsibilities and support the growth of recovery-supporting outreach?
Resources are far more freely utilized for peer-operated efforts when people’s key “diagnosis” has been substance use. In fact, when two peer led community engaged agencies, both established by individuals with histories of mental ill-being, applied for a grant to open a first peer operated respite center, neither was selected.  (Please note, these groups had 60 letters of support between them! They have operated as peer support centers for years!)
Instead, strangely the grant was offered to a third agency–one historically created to serve predominantly those whose challenge was substance use.  It had been funded with grant dollars from the substance use budget.  This agency, which is directed by a fine individual who is innocent of these tactics, received training (board members said that the agency had not heard of peer respite–had not really known what it was) technical assistance, and a very lenient deadline for getting into a proper respite house site. And they received the funds–reportedly from the Mental Health Block Grant, and not from the Substance Abuse Prevention and Treatment Block Grant.
Go figure. Is there discrimination happening here? Is there equity?
Can the Division of Mental Health, Developmental Disabilities, and Sustance Use Treatment truly and honestly get behind the fact that people with mental health challenges (or I’ll use the dark phrase–Psychiatric Histories) can and DO recover? Do they not realize that often it is systems that disable us and oppress us and interrupt our growth and recovery? If current leaders don’t get this, then they need to go back to school for an update in their educationi:  that RECOVERY SHOULD BE THE EXPECTATION and not the happenstance exception!  Otherwise, we need well-educated, people-supporting leaders to replace them.   Please!

Helgerson’s Message Reminds Us There is HOPE even in the midst of Medicaid Reform!

Jason Helgerson has been hired by several states by now to lead major transformations in how states have utilized Medicaid.  His most recent stint was in New York where articulate mental health leaders/advocates for improved health and “behavioral” health outcomes have been very engaged in ensuring user-informed and practical system changes that would result in better outcomes in people’s lives.  Helgerson has announced his resignation after doing great work in New York and we want to share with you the letter he sent out to stakeholders across the state.  It is shared with us by Mr. Harvey Rosenthal, a person whose mental health history has informed his own excellent work for many years.  (Harvey is the Director of the New York Association of Psychiatric Rehabilitation Services.)   Mr. Helgerson, whose letter follows, has been the state’s Medicaid Director for several years now.

Dear Stakeholder Community:

 Happy Friday.  As you may have heard, I have decided to resign from my position effective April 6th.  It has been a tremendous honor to help lead New York’s effort to fundamentally transform Medicaid and health care.  Together we have made the world a better place through innovation and hard work.  While much has been accomplished there is still much left to do!  I want to make clear that my departure will have NO impact on this important mission.  The Department of Health and its leadership remains 100% committed to the causes of MRT, DSRIP and VBP. 

 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. 

 I wish you all the very best.

 Jason Helgerson,

NYS Medicaid Director

Fellow advocate, let us not expect any less here in our state than what New York has accomplished through its inclusive and collaborative effort!

Solutions the State Consumer and Family Advisory Committee Can Embrace

Complaints alone are not advocacy.  To be effective, we need to identify some potential solutions that can be offered to decision-makers.  In advocating for Ideas to strengthen inclusion of consumers and families in system development, oversight, and quality improvement, here are three ideas that perhaps our State Consumer and Family Advisory Committee and other advocates can consider as part of our advocacy strategy:

  • Recommend that actions are taken to ensure that the Consumer Policy Advisory is empowered to undertake functions as defined in the position posting from February 12, 2015:
    • “The selected candidate will work with LME-MCOs, applicable DHHS Divisions, county agencies, citizen groups, consumers, and consumer family members to guarantee that disability populations are adequately represented at all levels and in all phases of Department and Division efforts. The selected candidate will initiate and participate in system improvement and citizen involvement and ensure that the community-based system remains compliant with legal rights protections for recipients of supports and services.”  

If the functions described were supported to be done with optimal result, the Consumer Policy Advisor would definitely                   strengthen the position of the consumer and family voice at the Division of Mental Health.


  • Recommend that consumer and family inclusion are leveraged through MCO Contracts: Create language for the contract between MCOs and DHHS that ensures that consumers and families are engaged in an integral (integrated) way in advising MCO process, practices, culture.  Tie funding incentives to meaningful and measurable consumer engagement as is done in public health systems.


  • Recommend that the development of independent statewide consumer advocacy organizations be supported to 1) empower citizens toward recovery or personal goal advancement, 2)  facilitate collaboration with area and state CFACS to ensure more stakeholder engagement with these advisor bodies, and 3) foster shared visioning for system and service innovation and quality improvement.  Commitment to the effectiveness of these organizations should be shared between leadership of these organizations and Division leadership and liaisons.  The aim is to collaboratively shift system culture toward  participatory change/participant driven progress and family support.
    • Funds from community mental health and substance use block grants can be accessed for this.  Funds should be identified for individuals with intellectual and developmental disabilities.

WHAT other recommendations do YOU have in mind?  Please share them with us!