”How’s That Working For Ya?” and Other Favorite Things from the 6th Annual One Community in Recovery Conference

Steve Miccio, a favorite presenter at the ‘Recovery Conference’ conference this year, has a favorite comment that he uses when he is trying to provoke thoughtful responses. It’s not really just a comment–it is kind of a challenge:  . . . “How’s that working for ya?” he says to his staff at the respite and hospital diversion houses and he uses it with policy makers and others.  I love the comment because it causes a listener to pause and evaluate whether an approach or action is yielding the results actually sought.  Steve, one of the early consumer turned providers in New York, shared about the role of peer specialists in responding to people in crisis, including the peer respite model.  He also shared a very engaging presentation on developing peer operated services, and interest of many here in North Carolina.  And in many of his instructional stories, he would tell about asking someone, “How’s that working for ya?”  It was kind of tongue-and-cheek, but it was also honestly intended.  I really liked it.

The Recovery Conference is a great place to come together each year to consider new ideas, to refuel, and to ask ourselves about our work together in our state–how’s this working for us?  And more to the point, what can we each do to have the best yields from our efforts, whether they are advocacy or service efforts or policy efforts?

This year, there were many participants from the Division of Mental Health, Developmental Disabilities, and Substance Abuse Services.  We had staff from other departments of DHHS as well!  There were staff there interested in crisis solutions, there were some there interested in promoting recovery through our current Transitions to Community Living initiative.  We hope they learned a lot, as many of us did, from the various presentations.

We also had a productive advocacy meeting on the first evening and decided on a couple of new ideas:  Invest in Recovery will be a new advocacy theme in our state and beyond, likely to be rallied through NC CANSO and the coalition, NC ROCs.  Furhter, we created a petition with space for personal input by conference attendees which we had signed by more than sixty people which will go to Representative Ellmers’ office as well as Representative Walter Jones’ office to ask that they not support the ‘Murphy Bill’ but support a better, broader based bill that would be characterized respect the rights of clients.

We appreciated an inspiring keynote by Phillip Valentine from Connecticut, who has helped to develop a state-wide approach to building recovery communities where people with substance use issues could go to connect, learn, grow, and focus on re-building a life, healing beyond abstinence.   So much of what he shared was relevant to recovery of all kinds, and the folks in the room who have recovered from substance use habits were excited to hear his encouragement.

Our keynote on the second day Lyn Legere, shared her remarkable story, her hope, and the fact of how much money is saved in public dollars when a person stops depending on ‘the system.’   She spoke of the role of employment in recovery and validated the work many are doing with supported employment   with our new definition.  Lyn will now be living in North Carolina, working with Cherene Caraco through Promise Resource Network.  Yeah!

Our conference is growing by each year!  Attendance continues to climb.  Look for information about 2015 by late summer and be sure to register!

Also, to learn more about this year’s conference, you can read here:  www.northcarolinahealthnews.org/2014/12/01/changing-the-paradigm-for-mental-health-care-in-north-carolina/


Peers, Peer Organizations Partnering with Managed Care Organizations

From The Key Assistance Report, published by the National Mental Health Consumers’ Self-Help Clearinghouse.
Increasingly, MCOs–which contract with state and county governments as well as individual employers to provide health care through public programs (Medicaid and Medicare) and commercial or private insurance–are hiring peers (individuals in recovery from from behavioral health conditions) in a variety of roles: from advisory to leadership, at state and national levels. The goal is to improve services, save money, and offer an important perspective that too often has been lost in health care delivery. At the same time, peer-run organizations are partnering with MCOs to provide important services on a larger scale. These partnerships can be very rewarding, experts say. To read more, check out this link!

Choice or Chance?
Are you making your choices or taking your chances with your supports and treatment?

Once I heard a presentation by Dr. Sy Saeed, the Chief of Psychiatry at East Carolina State University Medical School.  He was addressing advocates, system providers, administrators, and residents in training at the medical school.

He said, “Life for consumers should not be like a Bingo game.”

He was referring to the minimal role people have in determining what happened to them through the service system.  He was talking about the lack of respect for our own “agency” as people with psychiatric or other disabilities. 

“Agency means to use your own capacity, as a human being, to act and impose your actions onto the world and not just accept what happens to you.”  (Quote from Wikipedia definition of Human Agency.)


To understand how important choice is, we first have to come to terms with our own “agency.” That is, we are to be the actors in our own behalf.  We are to act on our right–no, our responsibility to choose for ourselves from the options available in our lives. 

Fancy words.  But the reality is that all to often, we yield our agency to others because in times when we have not been well, we have felt so ineffective and we have often given up not only on our own abilities, but on our own value! 

In North Carolina, it is time for us to become agents of change–that is, empowered agents of ourselves!  What does this mean?

  • We need to assert ourselves to become more informed before we make decisions. Uninformed consent is really not consent at all, but mere submission.   And submission doesn’t usually lend itself to a sense of growth or well-being. 

Are  you pleased with your provider?  You can ask for a change.  Do you have concerns?  You can address these with staff.  Are you being assigned several servcies from the same provider, yet you’d like to get some of your services from a second provider?  YOU HAVE THIS OPTION!  Even if your LME or your provider acts hesitant, these options are yours.  They will start responding more to us when we start stating our expectations of them–with respect due to them as people.

  • We need to ask questions of those who are to help us live better.  We mustn’t let our service providers or our doctors assume agency for us!  Remember, agency is a foundation to personal empowerment in our relationships.  Become and remain your own agent!

Does your psychiatrist truly hear what you are saying?  Does he or she give you medication that impairs your ability to function so much that it depresses you?  Have you ever made a list of questions or concerns that you can share with him or her?  Remember, you have the right to appropriate care.  Require it!                               

  • We need to establish clarity in our relationships with providers and others in our lives who may inadvertantly or deliberately threaten our sense of agency.  We must own our right to set boundaries and to define our role and our responsibility in these relationships.     

Do you feel your provider addresses you based on assumptions about you rather than on who you are and what you hope for?  Time to interrupt the conversation to establish realities about yourself, your experiences, and what your goals are.

There has been a bit of work done on the issues of shared decision-making in relationships and on how to shift the power so that it becomes equalized.  I hope you might find some of the links below helpful!

Most importantly, our services and our personal relationships will be much more rewarding and effective if we support each other to step forward into the future together!  We have nothing to lose, and everything to gain by leading our lives instead of subjecting ourselves to those who would try to lead them!



  • Express Yourself!  Assessment of your self-determination


  • Raising Difficult Issues with Your Provider
  •  Personal Medicine Worksheet by Pat Deegan, PhD


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!

TURNING UP THE HEAT!  Reinforcing OLMSTEAD as Law (originally posted mid-November)

Recently, the U.S. Department of Justice revisited Georgia’s response to the Olmstead ruling.  The Supreme Court decided in 1999 to reject Georgia’s attempt to appeal an earlier law which stated  that people should be permitted to live in the least restrictive setting possible unless they chose otherwise.  Georgia had hoped it could continue to retain people for long periods in state hospitals.  This way, the state would not have to use its resources to develop effective service systems out in communities that would prevent need for long-term institutionalization.

Like many other states  Georgia has been very slow in developing the system to reduce long-term inpatient care.  So the Justice Department has turned its attention back to Georgia.  As you will read in the following excerpt from an article posted by National Public Radio, North Carolina and other states have required federal attention related to breeches in the civil rights of consumers.  It will be good for us to learn from how our neighbors implement new requirements by the Justice Department.    Here are its new requirements:     1.)  Ending all admissions of people with developmental disabilities to the state hospitals by July 2011.   2.) Moving people with developmental disabilities out of hospitals to community settings by July 2015.   3.)  Establishing community services, including supported housing, for about 9,000 people with mental illness.  4.) Creating community support teams and crisis intervention teams to help people with developmental disabilities and mental illness avoid hospitalization.

Excerpt below.  To read full article, go to www.npr.org  

Enforcing A Previous Ruling                                                          NPR in Washington.                                                                                  The Justice Department action demonstrates broader enforcement of the Supreme Court’s landmark Olmstead decision from 1999. In the case, which originated in Georgia, the court ruled that unnecessary institutionalization of people with disabilities is a form of discrimination under the Americans With Disabilities Act.

Lewis Bossing, a senior staff attorney at the Bazelon Center for Mental Health Law, a Washington, D.C.-based advocacy organization for people with mental illness, said the “ground-breaking” settlement in Georgia capped a flurry of federal legal activity in disability cases during the past 18 months.

Indeed, Justice has filed briefs and joined Olmstead-related lawsuits in several states, including New York, North Carolina, Arkansas, California and Illinois. Over the past year and a half, Department of Justice attorneys:   1.) Filed a brief in support of North Carolina litigation seeking to keep two individuals with developmental disabilities in community settings. A proposed cutoff of funds jeopardized the housing for the two. Perez said in an April statement about the case, “We will not allow people with disabilities to be a casualty of the difficult economy.”   2.)  Filed a motion to intervene in a lawsuit in New York, seeking supported housing units for thousands of residents of “adult homes.”   3.) Filed briefs in existing lawsuits in Florida, Illinois and New Jersey against what the agency called “unnecessary institutionalization” of people with disabilities.

“We will continue to aggressively enforce the law, and we hope other states will follow Georgia’s example,” Perez said.

Bossing said the Justice Department, by spelling out an array of community services required to meet Olmstead criteria, “will make it more likely that states will change the way they do business with people with disabilities.”


Meeting with Division and Department Leadership Last Friday

In February of this year, a process for dialog was initiatied by consumer leaders and key staff from the Division of Mental Health, Developmental Disabilities, and Substance Abuse Services as well as leadership from the Department of Health and Human Services.  There was a regular meeting of these parties on Friday October 15th. 

In attendance were Dr. Beth Melcher, Assistant Secretary of Health and Human Services for Mental Health; Mr. Steve Jordan, the Director of the Division of MHDDSAS; Stuart Berde from the Customer Services and Advocacy Section at the Division and approximately ten consumer participants.  People attended from across the state, with some teleconferencing by phone.

The agenda addressed specifically the need to promote a recovery-focused service system, including the establishment of a free-standing peer support role that can be responsive, effective, and sufficiently reimbursed so that providers would dedicate themselves to using peer support services.  Currently, we are aware that many CABHB providers are not intending to use the service because it is not cost-efficient to them. 

North Carolina has submitted a service definition to the Center for Medicare and Medicaid (called “CMS”) hoping that the federal goverment will approve it for reimbursement with federal dollars.   NC’s first draft was sent back for futher work by CMS and has now been re-submitted for approval.  But at this point, those who understand the need and results of these services the best–people who themselves live with mental illness but understand the role of peers in supporting growth, progress, and making the right choices–feel they have had no meaningful input into defining the service. 

This is important because in states where systems are having results measured in terms of improved quality of life and fewer hospitalizations, the role of self-help and mutual support are integral to the service system.  Peer support is strong, and organized efforts of peer support networks have helped to enhance provider systems with a new culture of care.  The emphasis of provider agencies is not merely on managing symptoms with medications, but moves toward supporting a person’s progress in many areas of his life. 

The discussion helped to focus officials on the role that the reimbursement rate and other technical issues have on growing the use of peer support in North Carolina and therefore yielding the outcomes we all prefer.   It also reinforced the hopes of consumers that the new leadership will be dedicated to bringing currently known and studied practices into North Carolina that foster long-term life success in the lives of people with disabilities.

Dr. Melcher and Mr. Jordan were very attentive and engaging and seemed to value the input by various participantes.   Mr. Berde gave a report on his efforts to develop, with input from the consumer group, a formalized process for recruiting consumers (and family members) to serve on various work groups and committees within the Division.  His aim is to promote a more consumer-informed system.  He and some of his staff have been very dedicated to the value of consumer input into maximizing Division outreach and support through their section.

The Division web site will soon make available the form for advocates and self-advocates that they can submit if they want to help on work groups or committees.  It will also list upcoming workgroups as they develop so that more consumers can be among those who inform the changes in our public system. 

If you are interested in participating in the dialogs with these leaders, you can email me for more information.  The meetings are not limited just to mental health topics, though these have come to the fore lately because of CABHA and other influences.  The meetings aim to be open to all and transparent in their intent.  (Email lauriecoker@bellsouth.net ).

Friday October 22 Deadline for INPUT TO SAMHSA!

Following is a nationally-distributed note that focuses on specific consumer-proposed objectives and how to respond to them as well as to the initiative areas named by new Director Pam Hyde. 

From NYAPRS in New York You have only two more days (until October 22nd) to make your voice heard and help shape federal mental health policy!   The Substance Abuse and Mental Health Services Administration (SAMHSA) is the federal government’s lead body on mental health policy. Upon taking office, SAMHSA Administrator Pam Hyde issued a series of Strategic Priorities that included:  Prevention of Substance Abuse and Mental Illness; Trauma and Justice; Military families-Active, Guard, Reserve, and Veteran; Health Reform; Housing and Homelessness; Health Information Technology for Behavioral Health Providers;    Data, Outcomes, and Quality-Demonstrating Results; Public Awareness and Support

At numerous public forums, including a consumer roundtable with Ms. Hyde held at last year’s ACMHA conference and a recent public comment session at Alternatives 2010, groups have expressed serious concerns that some of the most important forces that have driven the field’s best innovations and advances are not sufficiently and explicitly listed as priorities. These include: Recovery Focus;  Primary Input from Consumers/Survivors; Employment; Self Help and Mutual Support; Peer run Services and Peer Specialists; Trauma-informed care; Cultural Competence and Diversity; Incorporate Holistic, Complementary Approaches; Support More Non-Drug Mental Health Alternatives

While Ms. Hyde has assured stakeholders that these issues should be integrated in all her 8 Priorities, many fear they will be left out, or added as an appendage and afterthought that could weaken all the hard won progress we have made over the past few decades.              Here’s an opportunity for you to underscore the importance of these ‘other’ priorities: SAMHSA is seeking comments by October 22 on its Strategic Initiatives Paper that “summarizes SAMHSA’s current and future environments and outlines a roadmap to improve health in America by reducing the impact of mental illnesses and substance abuse on the Nation’s communities.”

SAMHSA is actively soliciting comments and ideas from outside experts and the general public on all elements of the plan and suggestions for improving it.  The easiest way to add your input on the above missing priorities is to go to add your support to the following comments that push for:

Or add your own new comments!  People are encouraged “to leave their suggestions, read the comments others have provided and vote for those ideas that have the greatest merit. The public comment period on the plan will continue until Friday, October 22, 2010.”

Make Your Voice Heard Today!

Report Puts Issue Where It Can No Longer Be Denied!

Too many NC Citizens live in “Adult Care Homes”

The report produced by Disability Rights North Carolina entitled ”Trapped in a Fractured System,” it is a must-read for all advocates who have been concerned about citizens being placed, with no choice, in “adult care homes.”    Placement in these settings was the topic of a presentation at NC CANSO’s “Bright Ideas Forum” in June, and it touched a familiar “hot button” among participants.   For many of us have seen inside those facilities either as residents or visiting friends or simply as part of our advocacy efforts.  But not enough of us in North Carolina have truly accepted what has been happening to now nearly 6,500 of our fellow citizens.                                   
Recently, Disability Rights (DRNC) asked the US Department of Justice to investigate the placement of so many citizens in adult care homes, questioning the validity of these settings as “community settings” according to the federal ruling on the Olmsted case.  This is the ruling that guarantees that people should be able to live in the least restrictive environments with the rights of full citizens.  To learn more about the issue and the DRNC action, click this link http://www.disabilityrightsnc/pages/270/investigative-report-adult-care-homes/

Through the years, many advocates have questioned leaders in Raleigh about the legal legitimacy of these settings.  Also, some have asked about the use of Medicaid to pay for medical services in these institutions, which do not meet criteria for use of these funds.  Yet many of these facilities have done just that through the years.

One has to wonder why our legislators have for so many years protected the growth of this industry, restricting the rights of so many citizens.  People have eventually thrown up their hands about this, the political forces and the money involved are so powerful.

But we must not give up. North Carolina citizens must ensure the safety, rights, and independence of those who have disabilities, whether short-termed or longer in duration. We should support clarification in our state’s Olmsted plan that ensures the rights of people to live in our communities as full citizens and no less.  We should evaluate the actions of our legistators, monitor contribution patterns of those who may lobby for ongoing growth of the industry.  And finally, we must develop a system whose services foster recovery, independence, and growth.

NC CANSO is committed to promoting systemic solutions that improve the quality of life for our brothers and sisters who live with a psychiatric diagnosis, a developmental disability, or an addiction disorder.   We are glad that our leaders will now be focusing on this issue and stand ready to help in any way we can.

CHOICE issue, continued from Home . . .

The survey, which was addressed to people who use mental health or substance abuse services in the public system, reveals so far that while 90 % of its respondents highly value their right to choose their service providers, more than 35% of them state that they did not choose the services they currently receive (pre-CABHA changes), but that they were selected for them by their LME.  

This was already not a good sign.  But as we are beginning to hear from people across the state, we are learning that some people are telling their providers they do not want to be moved to another one.  Further, we know that at least one staff of a Local Management Entity (LME) has said that “if people can have quality, they don’t need choice.”

We beg pardon, but we should have both a right to choice AND to quality.  And unfortunately, if the provider system is trimmed to so few providers that there is not much competition and if clients are assigned to them anyway, how will we leverage quality out of our providers? 

We as consumers had thought since early in the mental health reform that choice and quality were what service divestiture was supposed to be all about!  It was to reduce conflicts of interests and develop a market where providers would have to compete based on the quality of their services!  (And oh, yes–let’s not forget that the Reform was also to be about saving money.)

Our survey still has a little more time for consumer participation.  We hope that while we await responses and develop our report for state leadership, the Department of Human Services will remember the human elements of human services.  Because without choice, we have less Voice in what happens to us.

State Investing to Expand Peer Support

The Division of Mental Health, Developmental Disabilities, and Substance Abuse Services (DMHDDSAS) recognizes the need for peer support as a service which promotes personal growth, problem-solving skills, and crisis reduction. However, it also recognizes that some provider agencies may resist using the service until there are fewer barriers to hiring sufficient numbers of qualified staff.

With this in mind, DMHDDSAS has developed a grant for training and integration of peer support in provider agencies.  This will be done in partnership with selected Local Management Entities.

To learn more about the project and the Request for Information regarding the training program, check out the September 16th announcement on the DMHDDSAS web site:  http://www.ncdhhs.gov/mhddsas/whatsnew-comprehensive.htm

NC CANSO applauds activities that promote the implementation of proven services like peer support.  Emphasizing services that depend on mutual engagement and sharing is one way to bring our service system up to date!