This article was published almost two years ago, but definitely bears publication again.  We must protest to the allowance by the state of MCOs putting service choice on the back burner–even during this time of drastic change.  The MCOs are well financed and those that have been called to question can do a better job of finessing change processes so that their customers–the beneficiaries of the public system–are still served as deserving customers.  WE MUST CHALLENGE OUR MCOs and the State of North Carolina to treat system customers with the respect and service that citizen taxpayers are paying for!

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Once I heard a presentation by Dr. Sy Saeed, the Chief of Psychiatry at Eastern 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.)

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 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 or our Managed Care Organizations 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!

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GREAT TOOLS to CHECK OUT!

• Express Yourself!  Assessment of your self-determination

http://www.cmhsrp.uic.edu/download/sd-self-assessment.pdf

•  Raising Difficult Issues with Your Provider

http://www.cmhsrp.uic.edu/download/raisingissues.pdf

•   Personal Medicine Worksheet by Pat Deegan, PhD

http://www.dbsalliance.org/pdfs/conference/2008/CG1.pdf

Today I attended a meeting of a group of local advocates who are concerned that the future of our mental health, developmental disabilities, and substance abuse services must not go the way of the past and present. We talked about ensuring real service quality, about approaches to ensuring that the rights of clients are protected and that they are empowered through customer services and client rights processes. We talked about the need for these functions to be undertaken independently of providers or care managers.

Two things stood out in our conversation.  One is that Consumer and Family Advisory Committees must maintain a meaningful role in service development, management, and in setting and monitoring service outcomes.   And since according to many serving on these committees and on the State CFAC, local CFACs perform very differently and have different levels of input into the actions of their MCOs, it would seem that advocates should ask DHHS first to ensure that mental health management contractors have in their contracts a commitment to establish advisory committees made up of clients and family members and that all committees should be trained together to ensure that these committees are empowered, vocal, and interactive with their communities so they can help MCOs develop responsive systems.

The other idea was that we should ensure that there are separate ombudsmen who can follow up on customer concerns and rights issues. Some advocates have, for some time, felt that ‘consumer affairs’ offices should be contracted to separate agencies in order to maintain safety for the person registering a concern and in order to look at the issue with no bias except to work as an advocate and resolve issues in a way that helps a person feel empowered.  This means that taking an issue forward would not result in a set-back in recovery, but would actually enhance a person’s mental health because they have respectfully and gainfully participated in a problem-solving process.

I am sure that other communities have ideas about how to make their experiences with the system more productive and satisfying.  This is a great time for us to be talking about these things and sending our input to the Secretary’s office and to the office of the Director of DMHDDSAS.

Your input to NC CANSO and your advocacy to state leaders are much valued!