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.

Ron Manderscheid Says It Best . . .

From an article written last August titled, “THE ISSUE IS GUN CONTROL”

“Last Thursday, Representative Tim Murphy (R-Pa.) asserted that we have a “failed mental health system.” He should have said we have a “failed Congress for not addressing gun control.” He was using last Wednesday’s Virginia shootings to promote passage of his own mental health bill, which has serious, if not fatal, deficiencies.

“We need to question Murphy’s logic and motivation very closely. Persons with mental health conditions, just like all individuals, deserve dignity and respect; they should not become the whipping boys for the unwillingness or inability of the Congress to pass national gun control legislation. Neither should the mental health system.

“As many of us have stated repeatedly in broadly diverse venues, the vast, vast majority of people who shoot others are not mentally ill. They may have malicious agendas, and they may be violent and angry, but they are not mentally ill. To assert otherwise simply is incorrect: Violence must not be confused with mental illness. This mislabeling inappropriately assaults the dignity and promotes the stigmatization of those who actually do have mental illness.”


Dr. Ron Manderscheid is one of the most brilliant thinkers on mental health systems I have met.  I have read his work for years, learning about his when he was working with SAMHSA.  He writes about the need to develop recovery-focused services and systems, about the role peers can plan in mental health and in integrated health care systems, about how we should be thinking about all the changes coming so fast to our system, about the civil rights of citizens who deserve better treatment access and approaches instead of forced outpatient care . . . I could go on.

He is brainy.  He is the Director of the National Association of County Behavioral Health and Developmental Disabilities Directors.  He is a leader of the College of Behavioral Health Leadership whose annual summit is a think tank where people from across the country who work in many capacities as well as people who have recovered from severe mental health challenges work hard to collaborate for solutions.  This group recently fostered research on peer support compensation but publishes other very timely reports in our field.  He loves research and quotes it easily when making his points in presentation.   Besides all this, he teaches at Johns Hopkins University!

Dr. Manderscheid is a scholar of the things that matter so much to us who wish to see our fellow citizens offered services that help them heal from their mental health challenges.  Yet he is not all brains.  He uses his knowledge with heart.  He seems to lay out paths with his knowledge to consumer leaders across states, to hospital administrators, to policy makers, to so many in this extremely diverse network of advocate-workers.  He is trusted and respected as a comrade whose values are what weave us all together.

To read the rest of this well-reasoned article on the issue of gun violence and mental health politics, check THIS out.

Don’t Give Up on People in Adult Care Homes!

An opinion article in the Raleigh News and Observer, “Community Housing for the Mentally Ill Still Scarce” (December 7) begins with a statement that the Department of Justice/North Carolina agreement requires that people living in adult care homes be moved into independent housing in the community. This is simply not true. In fact, the entire “in-reach” process is generally done by specifically trained Peer Specialists who themselves have once struggled with serious mental health challenges but who have since recovered meaningful lives by living actively to manage their health. Their efforts are aimed at engaging people in these facilities in order to offer them the information, the support, and as necessary, the advocacy they may need to help them find a different home in a community—IF they wish to relocate.

In fact, many people are so disabled by the very passive lifestyle North Carolina has allowed to develop in these places that they are afraid of the world beyond the parking lots. They have less resilience and may lose initiative toward growth and change. Many years before this settlement between the federal and our state government, community members tried to give input to rules developed by the Department of Health and Human Services so these places could offer more support health and growth, yet our attempts were neglected.

Perhaps readers do not realize that we are not talking about assisted living in the usual sense of the word where there are Activity Directors, van drivers for non-medical outings, and medical oversight. No holistic approach here, and insufficient medical care! Under-qualified staff are given just a few hours training before they are tasked with dosing medications to patients. And very few of these settings have ensured that staff have training in responding to mental health related needs.

I once visited an adult care home in Yadkinville (and have been in many since). This “home” had 190 beds and, while our policies had once assumed these settings would be for the “frail elderly” I saw very few of these. There were, in fact, young people in their 20s, 30s, and 40’s as the majority of the population. They were very eager to talk and have company, and I could not imagine why they were in such a setting that snuffs hope, does not cultivate engagement, does not offer exposure to new interests, etc. I could only think of two things: 1) these individuals are seen as without hope for a more meaningful life and therefore exhausted families and under-resourced systems have resigned themselves (and these residents) to this lifestyle in the name of safety and 2) this unregulated industry must have continued to grow because somebody else’s (or several somebodies’) interests are involved.

I am a person who has a psychiatric diagnosis. I spend much of my week with people who hope for more value in their lives in spite of their diagnoses. Through a locally operated peer center, they are connecting, learning self-help skills, recovering their own lives and may well be on their way to employment and more! (Many of us with psychiatric diagnoses do get well enough to work and contribute!) Yet many of these have also had families that were eventually exhausted by them and others who gave up on them.

I encourage readers not to give up on us. We do have the capacity to grow, to heal enough from the trauma that has often been a triggering event in our lives that we can become courageous and learn how to manage our lives so that we stay healthier! And I encourage communities to support recovery in the lives of as many of their citizens as possible! Don’t hide us away, and don’t take away our hope, our sense of person.

I am one who looks forward to North Carolina continuing to focus the rights and the full humanity of citizens with mental health challneges. Each individual should have the right to be welcomed back into our communities if they should choose to come, and we should welcome them with hope and expectation, because communities can offer far more than pills to help people regain dignity and well-being.

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!

Advocates Take a Stand to Prevent Discrimination in Community Colleges

Community colleges have served as a pathway to recovery in the lives of some North Carolina citizens. The local academic settings provide for more supportive interactions between student and educators as well as among a diverse population of students. And because they are more affordable to many, they have become by default the best setting for a person whose life has been interrupted or has been difficult because of experiencing a disabling or potentially disabling condition. However, we learned recently that our state’s community college leadership have been considering rule changes that would allow a college not to admit a person based on subjective information or perception.  This was done, it is said, in response to the shootings at Virginia Tech two years ago. 

So advocates began contacting each other and the press regarding the rule language.  It turns out that Disability Rights North Carolina knew about this and responded with their own letter in November, but now the issue is hot and live (the community college board voted about this on Friday, January 21st), and several organizations, including NAMI NC, NC Mental Hope, and NC CANSO have also written and shared their letters.

If the Rules Review committee for the community college board does not reconsider, we will need to move this for the attention of the legislature.  We’ll keep you posted!