HTH-N.Fudge

Navigating the Road to Recovery
by
Nancy Fudge
Participant of the Florida SDC Program
Nancy_Fudge@FloridaSDC.info
nfudge1@juno.com
Presentation for the Institute of Medicine
Workshop on “Crossing the Quality Chasm” -
An Adaptation to Mental & Substance Use Disorders

I’m honored to be here today. I couldn’t help thinking, “I’m just one person with another familiar story. How could I make a difference?” Then I remembered something I had read by Anita Roddick in Guidepost. She said, “If you think you are too small to make a difference, you have never been in bed with a mosquito!” So I’m here today to participate in making a difference in the quality of healthcare.

I had experienced depression as far back as childhood. For many years I just assumed it was from having grown up witnessing domestic violence and substance abuse. My life also included sexual and physical abuse. I often asked myself, was it an environmental situation that left me feeling like a victim or was it a gradual onset of an illness that made me more vulnerable?

When I was 18 my mother died. After experiencing several suicide attempts in my early twenties and an involuntary placement in St. Louis, Missouri, I was still unaware of what was happening to me. That was the moment I became aware that I was no longer in control of my life. I had been incorrectly diagnosed, subjected to ECT (Electro-Convulsive Treatment) after being medicated to coerce my signature on the consent form, over-medicated and left with the irreversible symptoms of tardive dyskinesia. I spent the next 29 years living my life by other people’s standards and expectations.

Society didn’t want to discuss mental illness, and my family lived in denial and grew weary of an illness they couldn’t fix. Finally in 1986 I was diagnosed with Bipolar II Disorder. I was so elated that my illness had a name! The joy was short lived. My whole life became defined by my illness

In 1988 I was served with divorce papers the day I was to be discharged from inpatient treatment; treatment that finally was successful. That day I gained a sense of hope for the future and lost it all at the same time. My home, my three beautiful children, my 15 ½ years of marriage...gone. I had been a stay-at-home mom involved in community, school and cultural activities with my children. I was left with no marketable job skills, transportation or a home. Under those circumstances I was not able to have physical custody of my children. It was also evident that I’d been judged not on my history with my family, but that just having a mental illness could put my children at risk. There were no services offered at that time to help me transition to a new life. I never knew there was a mental health system or that I was entitled to any human rights protection, so once again I succumbed to the role of victim. This tragic time in my life triggered severe symptoms of my illness and once again I tried to end my life. Contrary to what most people believe it is not the easy way out. There is a huge battle that goes in your mind and it’s usually about what would be best for everyone else. It isn’t a selfish act but rather a self-less act. I’d decided that I would no longer taint my children’s life with a mother diagnosed with a mental illness. My life had become so meaningless, that on April 9, 1989, I overdosed in a place I had sought protection and treatment many times...a psychiatric unit in a hospital. I was not expected to live. I learned from that tragic experience that survival does not lie solely in the hands of the physicians. Even in a coma my unconscious will to survive along with the fact that God wasn’t finished with me yet, gave me a miraculous second chance.

“Self Direction - Individuality in Action”

In the past, recovery was not a word that was used when referring to mental health. Stabilization was the highest expected outcome with compliance being the only means to achieve it. My own road to recovery has been filled with potholes and detours that confused my sense of direction. In the past, I had no compass. My journey to nowhere continued year after year. As I look back on that particular ride, I realize I wasn’t even in the driver’s seat. I had settled for being a passive passenger.

My own care was directed by others. It was difficult trying to be responsible for my recovery when I lacked the tools and self-direction to move forward. In the past, the only thing I was the center of was “attention” when my unmanaged symptoms created a crisis.

At a meeting in 2000, my life was changed forever. This was the day that Self-Directed Care (SDC) would no longer just be a concept. It became a mission to develop and implement a new continuum of care based on recovery through choice, self-direction and self-determination. When I made the commitment to advocate for this program I had no idea that I would be able to be a participant. During this process I discovered an astonishing fact about myself. The more I focused on the word “recovery” the more self-confident I became. I’d stepped outside my box of stabilization and began actively participating in regaining control of my life.

On November 23, 2002 I completed my enrollment and first recovery plan as a participant of the FloridaSDC program. My first recovery plan was difficult. I’d never had to think beyond being compliant with someone else’s plan for me. As I began to fill out my assessment plan I was confronted with many domains: Physical Environment, Educational or Vocational Supports and Services, Social Supports, Leisure and Recreation, Physical Health/Medical Needs, Financial Supports and Other Resources. For the first time in my life I was able to view myself as a whole person. After completing my assessment I began setting realistic goals toward my recovery. I had three long term goals on my first recovery plan:

Goal #1 Enroll in a writing course - I had taken an aptitude test from the LongRidge Writing Group based in Connecticut several years ago and was accepted, however I wasn’t able to pay for the tuition. I directed this opportunity to explore my writing abilities. It’s been empowering to work with a professional from my home, with the option to receive 4 college credits and the possibility of future earned income. I will be completing this course in the fall and will be submitting an article for publication. This service was paid directly to the LongRidge Writing Group by FloridaSDC. This goal increased my self-confidence and awakened a personal area of self-determination that had been dormant for years.

Goal #2 Become more computer literate - At the end of my 1^st quarter I was able to enroll in a computer course at a nearby public elementary school through the Adult Education Department. FloridaSDC paid the fee to the Clay County School Board. I received a certificate of completion and plan to continue to take future courses. This goal provided an educational opportunity in comprehension and meaningful skills in computer applications. I have used this knowledge in preparing writing assignments, advocacy, research and daily living skills such as budgeting, online banking, etc.

Goal #3 Buy a used piano - This goal was a perfect example of how a meaningful resource for recovery does not always require money from an outside funding source. A piano for $50 was found by a friend who paid a portion of it as a gift, and another group of friends from a drop-in center delivered it. I provided lunch and a small monetary amount to everyone one for their part in helping me achieve this goal. We celebrated with music and singing that day. Later that week I received a phone call from someone who wanted to return our family piano from years ago. I now had two pianos! I discovered that a church was in need of a piano and was happy to provide them with one. I even wrote a story about this event and submitted it as one of my writing lessons. This goal provided networking skills, an opportunity for leisure and recreation, a creative outlet for writing and an opportunity to participate in a charitable way in my community.

My time line for accomplishing these goals was 1 to 2 years. What an amazing surprise to discover that I had completed all three goals by the end of my first quarter in the FloridaSDC program.

At this time, I receive all my traditional clinical services from our Community Mental Health Center. For instance, I see the psychiatrist for medication and follow-ups, a clinical therapist for periodic individual counseling and attend a women’s therapeutic group. I don’t need a case manager, but I do have access to a recovery coach or quality advocate through Florida SDC. They don’t manage my care but assist me in self-directing my recovery upon my request such as locating a specific resource, filling out forms etc. I chose to continue receiving my clinical services from our Community Mental Health Center because together we have developed a trusting, open and cooperative relationship with each other. If I have a concern or grievance I know I will be listened to and included in the process of resolving it. I am encouraged by their support of self-determination, and acknowledgement of their important role in getting people ready for self-directed care. Self directed care does not eliminate, divide or separate the need for mental health providers. It creates opportunities to achieve independence through responsible choices, and fosters healthy relationships between an individual and their providers. The most empowering asset a provider can possess is their ability and commitment to believe in the potential of the people they serve. That statement is critical to the process of recovery and it is worthy of repeating...The most empowering asset a provider can possess is their ability and commitment to believe in the potential of the people they serve.

Thanks to Tom Nerney with the Center for Self Determination, I have a better understanding of the meaning of quality. In the past, quality was just an adjective that described a service or something tangible. I’ve learned that satisfaction doesn’t always guarantee quality. While satisfaction is important to me, it is the quality of the service that provides me with opportunities to move forward. I created the acronym STOP as a tool to help me be more aware of the quality in the choices I make. “S” for safe, (does it provide protection from harm and is it in a safe environment?) “T” for trust, (does it provide a foundation for trust?) “O” for opportunities, (does it provide additional opportunities to advance my recovery?) “P” for promote (does it promote self direction, self determination and choice?)

One of the greatest challenges for me was in making changes, learning to think, believe in myself and the choices I’d be making. FloridaSDC has enhanced my life by encouraging me to focus on my abilities and create a recovery plan specific to my individual needs. It increased my self-esteem and motivated my self-determination. I no longer fear making decisions, but look forward to the results of my choices whether they are immediate successes or valuable lessons with consequences. In the area of time management, I have been able to prioritize and receive services that accommodate my schedule. One challenging aspect of my recovery plan is budgeting. I receive a quarterly budget where I am responsible for choosing effective services, comparison shop, identify the domain each service will be under, the number of times I will need that service and the positive expected outcome from receiving it. Although budgeting is viewed as a daily life skill, particularly for those of us who live on limited incomes, it is a necessity for planning the access of effective services for recovery. I take pride in my ability to accept responsibility for the consequences and successes of my choices, while the freedom to incorporate my spiritual life as an integral part of my recovery completes my wholeness. For me, recovery has been the discovery of my potential and my responsible limits.

This unique program of recovery became a reality and a success because it was a grass roots effort, we were listened to, and because the advocacy, development and implementation were driven by individuals whose choice was for recovery. The intent of FloridaSDC is to create a place for individuals to graduate to another level of recovery. This in turn would provide more openings for people whose choice would be for more assisted care while reducing the cycle of crisis. The current system serves a very important role of assisting people to the point of being ready for self-directed care.

Representative Aaron Bean, Dr. Carolyn Russell, the Director of our program and Jo Heller, Chairwoman of our Advisory Board have demonstrated through their dedication, hard work, persistence and support that there is no such thing as an irremovable obstacle.

The most important experience for me in our FloridaSDC program can be summed up in one word...Freedom. Self-directed care is the freedom to have a voice; to have choice; to see positively; to “live with” not “suffer from” mental illness; to view failures as events not people; to not be defined by illness; to choose a path of recovery specific to my needs; to reclaim and restore my life with quality, dignity, a meaningful purpose and direction toward the future. From my perspective, life isn’t about “being” it’s about “becoming”...becoming all you’re destined to be.

Since 1990 I have served on numerous boards and committees for the purpose of advocacy and the protection of rights for persons diagnosed with mental illnesses. My present focus is on the successful continuation and expansion of the FloridaSDC program.

Self directed care came just in time for me. I had just worn out my last pair of boots. You know...the ones with the long straps that everyone tells you to pull yourself up with. I’ve yet to find that pity pot everyone was so sure I was sitting on. What I did discover is a new shoe that fits, and the only place I need to sit is in the driver’s seat! On my continued journey of recovery I won’t be hard to find. I’ll be wearing my self- determination, trimmed in self-confidence, adorned with hope. Is it expensive? No...But the smile is priceless.

Appendix : Questions Concerning Self Directed Care

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