Note: This article was originally written spring 2012

Is your LME (local management entity) applying with the state to become a waiver manager (or an “MCO” or managed care organization)? The consider this: Through the years, how much “genuine welcome” (good terminolgy found in the original State Plan for Mental Health Reform) has been extended to the consumer community to ensure that the customer’s voice informs quality and progress in your local service system?

Has the LME been open, transparent, and engaging with its local consumer base, or is it more insulated in how it does its planning? Is your local CFAC well attended or is the turnover high? Does your CFAC invite consumers and other community stakeholders to share ideas or concerns on a comfortable level? Does your CFAC (Consumer and Family Advisory Committee) have legitimacy in your larger community and not just with the LME board?

Does your LME administration include asserted community opinion in its quality improvement planning? Is the service system planned well enough to prevent unnecessary hospitalization or crises, which can result in more trauma, stunting growth and recovery? And how empowered is the consumer affairs section of your LME? Does it have a strong voice within the administration? Is the office directed by a well-trained and knowledgable person who himself or herself understands first-hand the perspective of persons needing or using services by having learned from his or her own growth in spite of having a diagnosis? Welcoming consumer responsiveness is foundational to the quality and value of service administration.

These questions point out that successful waiver administration depends on the management style of the LME and on the continued, valued engagement with consumers and other stakeholders inthe communities it serves.

So what about your LME? And is DHHS looking at these elements? We surely hope so, because there is much at risk if we do not have a consumer-informed service system, especially when funds are ever-tightening! We as consumers believe that public dollars must buy VALUE. And we know value.

Change certainly takes patience, but alternately, progress requires patience, hard work, and collaboration. Stay tuned to learn how you can advocate locally and at the state level for changes that bring responsive innovation and solutions. Ω

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EXERCISES FOR EVERY MOOD (See Living Well section)

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The Consumer Voice is becoming stronger now, but not without much work and ongoing outreach across geography and across organizations! Yet this effort is not without reward–for who can better tell our own stories? Who can best enlighten decision-makers and communities about the true nature of our potential to recover or to attain more skill and growth? Who can best explain the positives and the negatives about living in a small facility–a world with glass walls and ceilings that often make recovery hard to envision and which actually creates disability among our peers? The problem is that North Carolina has hurt because we haven’t been involved, engaging others and telling our stories as citizens with valid experiences and to share our hopes!

We often let others define us. We have passively allowed ourselves to be viewed through flawed lenses, created by wrong assumptions in the uninformed minds of others in our communities. They do not know that people can and do recover, that people can contribute to their communities, that just because we have a psychiatric label does not make us less human, less valuable.

Sound extreme?  You be the judge.  Listen to this news clip from a mountain community in our state:   That perspective lives right here in our state–especially in those communities that have the most facilities for persons with disabilities–projecting to local folks that residents are ‘unsafe’ or unworthy to be in the community. You can see this video clip at this link: http://www.wlos.com/shared/news/top-stories/stories/wmya_vid_7291.shtml to get an idea of the assumptions and statements some North Carolinians will make even for public consumption!  “Build a fence around them,” one interviewee recommends.

NC CANSO has been involved in many ways in advocacy around this issue of respecting life and law and ensuring that people are able to choose whether they live in a facility or in their own setting.  We advocate for the kinds of supports, housing, and services that will help them not to stagnate, but to grow and recover!  It costs less to the taxpayer to provide this than to put them in a “home” and it certainly costs less to an individual who wants to direct his life toward a different vision.  We hope other consumer advocates and consumer-supporters will raise their voices with us about this extremely important concern!  And if you have a friend who lives in an adult care home, be supportive:  reach out, offer him or her courage and strength as so much may suddenly be changing around that person in response to the Department of Justice or another federal agency who has been calling our state to comply with regard to the use of funds to house people in large settings.   Take that person for coffee and a visit and help him have a vision for his or her own growth–no matter where he or she chooses to live.