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.

On Recovery: Work at DHHS

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.

The Governor’s Mental Health and Substance Use Task Force:
There has not been much news on the efforts of this Task Force. It is known that at least two persons with lived experience of mental illness and recovery applied to serve but were not selected.  Perhaps there are persons who live in recovery after substance use challenges are serving, but we do not recognize any names that we know.  (Whoops!  I now see that a liason between the group and the State CFAC is listed).   I admit that the only information I have to go on is that from the following web page: Readers should check out this page to see the Six Tasks for the group.
What should concern us?  There is no use of the word recovery or any concepts that relate to recovery or resilience in the list of the six tasks assigned to the group.  Yet so many of these tasks would yield a clearer scope of actions that would truly help in reducing crises if this exercise was being done through a lens of resilience and recovery.  

To advocate for inclusion of consumer input and a focus on recovery, please contact Sonya Brown, DHHS staff to one of the committees ( ) or Dr. John Santopietro(who spoke at our recovery conference last year and who chairs the adult services committee of the task force–email: ).  Also, copy your email to Courtney Cantrell at .  Tell them that it is misguided not to look at issues of high emergency department and justice system utilization without considering the need for developing a system that engages people and their potential to recover and ensuring we have supports for this in our communities.  Remind them that peer support is vital to reducing high intensity service needs!  Ask them to include written recommendations submitted by recovery advocates as they undertake their work, and send some!  THANKS!

Crisis Solutions Coalition:   To see a review of some of the initiatives that have come out of this initiative in the past couple of years, please check this web site:
The next meeting is to be December 14, and NC CANSO will be there!  Here is a note on the meeting focus:  Our first speakers will review the legislation, and associated requirements, which broadens the group of professionals who can perform first examinations in the involuntary commitment process.  Expanding our capacity effectively in this area is consistent with the development of our behavioral health urgent care centers and other crisis response initiatives across the state.  Then, our second guest speakers will discuss roles for certified peer support specialists throughout the crisis intervention continuum.  We expect both topics will benefit from your thoughtful discussion!  
Remember, you read about it here with NC CANSO!