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!

Nothing About Us Without Us: System Changes Not Informed by System Users and Allies Will Fail

This week, the Strategic Plan for Improvement of Behavioral Health Services was released to the General Assembly.  It offers some clear data defining areas of system need and it focuses on bringing more accountability to system management.  But it does not go far enough to ensure that public dollars are purchasing value in the lives of those served through citizen tax dollars.  The following explains what is missing in this plan.


In order to effectively serve an identified group of citizens (“intended beneficiaries”) using public dollars, the use of these dollars and the assurance of quality results from their expenditure MUST be guided substantially by the beneficiaries and those who are their closest personal allies.  Simply put, if the development of a citizen-serving system of supports and services is not adequately informed by its users—its customers—then it will neither be efficient or effective.  Indeed, such a system  can actually worsen of the health status of those who were actually intended to benefit by the system.

This has happened in North Carolina.  We have in the past fifteen years worked hard at seeming without being, turning our state motto on its head!  In spite of multiple system reforms and constant instability, we are still hurting.  Readers can see excellent data in the recent Strategic Plan and in the report, The State of Mental Health in America , a state-by-state analysis of mental health and substance use care and access which shows North Carolina being in the bottom quarter across most reporting fields.  But data aside, our communities live this systemic ineffectiveness and inefficiency daily.   Citizens know this.  Leaders probably know this.  But it takes a bit of courage to reframe an overall objective and to share the mission and the effort with others—including those whom leaders may feel don’t really matter.

Political structures and the sequestering of decision making power to few top officials, elected and unelected, has created a very inefficient and ineffective superstructure for serving people with intellectual and developmental disabilities, with mental health challenges, and with substance use problems.  In fact, I know that many fine people who work for our Division of Mental Heatlh, Developmental Disabilities, and Substance Abuse Services wish for more community informed change but are not themselves empowered enough to help lead.  And I know many direct service providers who also are frustrated by the culture of service provision in our state—yet they feel they cannot act or speak to foster change or they risk losing their jobs.  We suffer from an outdated state-funded operational culture and we need to bring it to currency!

Consider that if the changes we make in our system are not motivated by the desire for good outcomes, then the things that motivate—profits, preservation of status quo, mere compliance, etc.–are actually toxic to having an efficient publicly funded system!  This is why the changes put forth in the State Strategic Plan for Improving Behavioral Health Services may indeed manifest as structural changes and may call for more fiscal accountability, but we may still miss the mark as far as human service results  are concerned.

Effective people-serving is best accomplished when the systemic driver is optimal outcomes and these outcomes are defined by the folks intended to benefit by these services.  In order to insure such outcomes, we would need for service system development, service delivery, and service quality improvement to be done with significant and continuous involvement of the people who use them, their families, and those who have first-hand experience with life improvement because they truly have learned what works!  (We pay for a lot of things that do not work!  And we are not paying for some that we know are working out in our communities.  Yet there are dollars existing through federal grants that could be used this way if our state administration would only allocate them to do so.  So will such innovations be sustainable?)  What we need is true, transformational change where we do not just “put new wine in old wineskins,” so to speak.  And we cannot have such change without the Voices of service users, ex-users, family members, well-motivated providers, and others at the local community level who would focus on real solutions!

The world is changing.  Internationally a strong and informed community of individuals–many having lived with mental ill-being, substance use history, or other disabilities–has shifted the paradigm on improving health and mental health of their fellows.  These changes started in other countries and have taken hold in several states in our country.  They are based in the belief that individuals with challenges have important understanding to offer that will enhance the systems created to help them.  Their agency is respected and their families are valued as important system informers, as well.  The deliberate, valued engagement of system users and allies to inform those systems has reduced hospital and other facility utilization, has greatly increased numbers of individual recovery and integration into community life, and has reduced the misunderstanding about the value of citizens with mental health and substance use challenges and developmental disabilities.  We should aim for no less than this, and we should insist upon a plan for real engagement of system users, families, and local community voices as an adjunct to the Strategic Plan for Improving Behavioral Health Services.