How State Block Grant Funding Changed
the Life of One Consumer in South Carolina

 

My name is Katherine Roberts, and I am a self-identified consumer employee with the South Carolina Department of Mental Health (SCDMH).  State Block Grant funding received by the Department’s Office of Consumer Affairs enabled me to accept a job doing the kind of work I wanted to do, get off disability, and to become a full-time employee. 

I began working with the SCDMH in 1998.  As a part-time employee, my office was located outside of the agency’s central administration building.  I was housed at one of the local State Hospital campuses.  I was paid for three hours a day, leaving little time to become “vested” in Departmental activities beyond coordinating the Consumer-to-Consumer Evaluation Team program (CCET): a consumer run program evaluation project.  My hourly wage was kept low so as to not jeopardize my disability benefits.  Without adequate health insurance, I would not be able to work.

 In May 2001, a grant proposal was submitted to the State Planning Council to expand the CCET efforts as a consumer service initiative.  Without the award, the program would not have been able to expand, and my life would not have taken another giant leap forward. The changes that occurred in my life since then have been phenomenal.  I am a full time employee no longer needing to rely on disability payments to ensure adequate health insurance.  I co-own my home.  My office was moved from the hospital to the central administration building, allowing me the opportunity to participate and become involved with the agency at many different levels including such committees and work groups as:

SCDMH Consumer Affairs Coordinators;
            SCDMH Nutritional Services Division Committee;
           
SCDMH Individual Placement and Support Steering Committee;
            SCDMH Clinical Coordination of Care Committee;
           
SCDMH Outcomes Committee;
            SCDMH Institutional Review Board;
            Community Mental Health Centers Standards Manual Revision Workgroup;
            Community Mental Health Centers Program Definitions Workgroup;
                SCDMH Consumer Involvement Research Workgroup.

 I attained membership in the American College of Mental Health Administration and made the following national presentations on consumer involvement in evaluation at the South Carolina Department of Mental Health:

2003 National Conference on Mental Health Statistics
Title: Consumer Involvement in Evaluating a Recovery-based Systems Change
Initiative.  Co-presenter with Vicki Cousins
   
2002 National Conference on Mental Health Statistics
Title: Planning to Disseminate Best Practices in South Carolina, Database Mental Health Policy.  Co-presenter with Vicki Cousins and Kitty Hepfer
   
2000 University of South Florida, 7th Annual Conference on Behavioral Healthcare Evaluation.
Title: Consumer-Centered Outcomes Initiatives: South Carolina’s Choice of Model.

In addition to the impact the grant award had on me and my program, State Block Grant funding has helped to provide 25 mental health consumers part-time temporary employment to work as CCET evaluators.  This funding has also provided meaningful and valuable employment opportunities, as well as a paycheck to consumer evaluators.  These team members serve as role models for each consumer and staff member they come into contact with, regardless of whether that person chooses to participate in the CCET survey process.  The willingness to publicly disclose their mental illness and triumphs associated with recovery goes a long way in dispelling the stigma of mental illness and proves that treatment works by going back to work. 

With expanded funding in addition to conducting the CCET community-based and in-patient surveys, I have participated in the development of and conducted surveys for the SCDMH Division of Nutritional Services, the Center for Innovation in Public Mental Health’s Individual Placement and Support grant, needs assessment for housing and the development and validity testing of a Recovery survey instrument.  The Team has also conducted face-to-face interviews for both the SCDMH Trauma Initiative and a Mental Health Statistical Improvement Project (MHSIP) grant.  The Consumer-to-Consumer Evaluation Team has completed over 3,000 face-to-face interviews.  We have formed partnerships with advocacy organizations, providing data collected on peer support needs. The State Director of Mental Health, George Gintoli, required that all centers and hospitals that engage the consumer evaluation team for surveys submit a one page written summary and a written plan of correction to him within three months of receiving the final consumer evaluation team report.

This is a long way from where I started in 1982.  I entered college at the age of 19, hoping to become an anthropologist.  By the time I was 22, I had the anthropology degree, as well as one in history.   By 25, I had acquired a master’s degree in Public Health.  I thought I had the world by the tail, and all the insecurities and dark feelings that had lingered in shadows while I was growing up would finally go away.  Little did I realize that things have a way of coming back to bite you.  I never thought that a major portion of my early adult years would be spent trying to survive mental illness.

            I had barely made it through graduate school when I realized that the sadness I had always experienced was becoming unmanageable.  I was 26 years old, working at a state agency as an HIV/AIDS health educator and in serious trouble.  I reached out for help - maybe I should have done that a lot sooner.  My depression was way beyond my control, and I was admitted to a hospital for psychiatric evaluation.  To make a long story short, before I was 28 I had lost my apartment and moved home with my parents, had to resign from my job – losing my benefits in the process, experienced four additional inpatient admissions for mental illness, applied for disability and lost my sense of adultness, dignity and hope.  I truly believed that having any semblance of normal adult life was over, and I would forever remain an “adult-child” dreaming of the life that could have been.  I wouldn’t be able to hold a job, I was told this was too stressful.  I would have to either live with my parents or, better yet, in a community residential care home.  I could expect to live out my days attending various types of day programs.  I would have to accept life for what it was - I became a person with a serious and persistent mental illness.

Most of those predictions came true except for the acceptance part.  I had no problem accepting I had a mental illness, but what I did not accept was that somehow things could not be “fixed” or “controlled” to the point where I could rejoin the adult world.  If that were true, then I did not want to remain on this earth.  For me, living a life dependent on family and mental health professionals and collecting disability payments was simply not worth it.  Fortunately, at the day hospital program I was attending (my third and now fifteenth inpatient admissions) someone saw some hope for me that I couldn’t find for myself.  I was placed in a DBT (Dialectical Behavior Therapy) program, and slowly my life began to turn around.

After about a year in DBT, I remember sitting in the canteen/waiting room of my local mental health center when I saw a small flyer.  It read something like “Have a College Degree and Want to Work?”  I took it, read it and was hopeful and terrified at the same time.  I had spent a lot of energy learning new skills to manage my emotions, but I still didn’t really have a life – at least not one that I wanted.  This flyer offered me the possibility of returning to the adult world, the working world, and one where I could actually use my education.  Don’t get me wrong.  All jobs are valuable; but I really wanted to work in the fields and arenas that suited my training and education.  I did not spend all that time in college and graduate school (not to mention the energy, time, and work in recovery) to enter into one of the 4-F jobs (food, flowers, filing and filth) that are often reserved for mental health clients.  I hung onto the flyer for a while.  What if I went back to work and got sick again?  What was I going to say about my long absence from the job market: “Oh, I have spent the last eight years in and out of psychiatric hospitals; but I am better now.  Do you want to hire me?” Eventually, I called the number on the flyer.  It turned out to be a support and mentoring group.

 Through that group, I found my first job, a job that didn’t work out; but I survived the experience and moved on.  It was during that first job that I met my future employer, Vicki Cousins, Director of the Office of Consumer Affairs at the South Carolina Department of Mental Health.  Not long after leaving my previous position, I was doing volunteer work at the Mental Health Association in South Carolina when I got a call from Vicki, asking me to participate in a  training for what was then called the Customer Satisfaction Team, CST.  I completed the training in February 1998, and volunteered to do some surveying to field-test a satisfaction instrument in late spring of that year.  By the fall of 1998, I had been hired as a part-time, temporary employee to implement phase three of CST project - the deployment of a CST Team.  The project name was changed from Customer Satisfaction Teams to Consumer-to-Consumer Evaluation Team (CCET), to more accurately reflect what we do.  The CCET is an entirely consumer-run evaluation and survey process, using self-identified recipients of mental health services to gather various types of outcome data from people served by the South Carolina Department of Mental Health.

To bring this story to a close, my recovery is ever evolving - ever changing. At times my success depended on luck - being in the right place at the right time - but usually it is dependent on hard work, family support, making the most of opportunities, taking risks and holding on to the belief that somehow things could be “fixed.”  

 

Katherine M. Roberts, MPH
Coordinator, Consumer-to-Consumer Evaluation Team
Office of Consumer Affairs,
Center for Innovation in Public Mental Health
South Carolina Department of Mental Health, Suite 308
P.O. Box 485 - 2414 Bull Street - Columbia, South Carolina 29202
Phone: (803) 898-8304            Fax: (803) 898-8590

KMR50@co.dmh.state.sc.us

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