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 ).

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.