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.

Collaborating to Impact Policy!

One thing about Spring is that it brings new energy to a growing group of people across North Carolina who want to bring our system to currency in its focus.   We seek a public system that produces real life outcomes, experienced by service users as strengths-based support of their self-determination AND self-responsibility so they can own their own choices and value them a in important part of their path to reclaim lives that are meaningful and growing! 

In 2014, NC CANSO worked with many others to develop North Carolinians for Recovery Oriented Care (NC ROCs) which aims to influence state and MCO level policies so that we actually have a the right type and quality of services that help people to recover, no longer focusing more on a medical approach and mere symptom reduction with plenty of hospital beds, but a mind-body-social-spiritual one.  Because this is what it takes to minimize crises and hospitalization and to help people develop their own lives that are not defined by a diagnosis!   Also, this March the planning committee of the One Community in Recovery Conference offered in the autumn will be meeting to get things rolling again for another outstanding conference!

COLLABORATING FOR ADVOCACY!  A Petition developed:  Participants with NC ROCS share a concern about proposed federal legislation HB 3717, “The Murphy Bill” about which we have already written on this site.  It reduces civil liberties of persons with symptoms in favor of forced treatment, proposing hostile engagement rather than the welcoming and respectful engagement that underpins service that help people to recover.  It also greatly reduces funding to protection and advocacy agencies like our own Disability Rights NC, our state’s Protection and Advocacy System, which has intervened to ensure the rights of our peers in adult care homes are respected, for instance, and which does believe in supporting recovery.  The bill also returns more funding to medically based approaches and threatens the viability of psychiatric rehabilitation models by shifting away from recovery and back to a crisis and symptom management approach.    If you share our concern, you can go to the NC ROCs google website, to view the NC ROCs petition statement on this bill (NC CANSO contributed to the document) as well as a link to a NC based petition to oppose this bill.  PLEASE CONTRIBUTE YOUR SUPPORT TO FIGHTING THIS BILL unless it is greatly revised or dropped.