(c) 2018 NAMI (National Alliance on Mental Illness) Nassau County , FL Chapter
Self Directed Care (SDC)
Florida Self Directed Care Circuit 4 Program
Prepared by Nancy Fudge
Mental Health Advocate/Consultant/Participant SDC
The Florida Self Directed Care Program is a “Grassroots” initiative that began with a concept, was implemented and supported by Former Rep. Aaron Bean’s Legislation, and has changed the lives of those who have been and are presently enrolled in the program. It is a business model of care, based on self determination, choice and self direction. It’s medically based on recovery, and fiscally based on self determination. The program has an independent fiscal agent, independent brokers referred to as Life Coaches, and the participants use individual budgets which allow them to choose the services that best meets their recovery goals. All aspects of the program focus on building independence, maximizing wellness and quality of life. Also built into the program is accountability toward purchasing choices that result in positive outcomes. The program is predicated on not just providing another level of service options, but based on the principles of Self Directed Care that it would bring positive changes in the delivery and quality of services throughout the mental health system.
Below is a brief historic timeline of some of the events and advocacy that lead to the creation and continuation of Florida Self Directed Care Program:
In the fall of 1998 the Nassau Nami along with other advocates from District 4 began a 3 year grassroots advocacy planning process that would lead to legislation to create a new innovative program for adults diagnosed with a mental illness now known as the Florida SDC (Florida Self Directed Care) program.
In 1999 at a meeting with former Representative Crady from Nassau County, the grassroots advocates discussed the concept of a new type of delivery for mental health services known then as the “money follows the person.” Since Developmental Disabilities was using this method of providing services it was felt that this would be a better alternative than filing a class action Mental Health law suit. A task force was established and the planning for what would become the Florida Self Directed Care program began.
In 2000 the advocates made several trips to Tallahassee to meet with people in the Governors office, legislators, Administrators of the Substance Abuse Mental Health Program office, DCF Secretary Kearney and other budget and policy people.
Also in 2000 Representative Aaron Bean began working with the advocates to create a bill that would allow SDC to become a pilot project.
On February 22, 2001 the Taskforce agreed that it had sufficient information to make a decision to go forward with the SDC pilot known then as the AMHSDC (Adult Mental Health Self Directed Care). The name was changed to Florida Self Directed Care to allow for the expansion statewide in the future.
On April 16, 2001 the “Self Directed Care Taskforce Interim Report” requested by DCF Secretary Kearney was hand delivered to her.
On June 6, 2001 the Governor signed Rep Bean’s HB #421 co-sponsored by Senator Mitchell’s Senate bill #0682 which directed the CFS Department to develop and implement a pilot project to provide person directed and choice based mental health treatment and support services to certain adults who met the criteria for services.
October 2001 Secretary Kearney approved the final Taskforce report.
The first Self Directed Care Board was seated and we began working diligently on the implementation of the SDC pilot project.
Dr. Carolyn Russell was hired as the project Director in 2001 and completed her first task of compiling the business plan for the project and it was submitted to Secretary Kearney and approved on February 13, 2002.
Implementation of the project with its first participants began in 2002.
In 2003 the Florida SDC project received a national award from Eli Lily and Company, “Moving Lives Forward Reintegration Awards” in the category of social support. Attending the ceremony in Atlanta, Georgia was Harold Maio who submitted our program for the award and Nancy Fudge (Participant and Advocate of SDC) and Jo Heller (Advocate) accepted the award on behalf of the program and its participants.
In 2004 Rep. Aaron Bean sponsored House Bill #727 co-sponsored by Senator Webster’s Senate Bill # 2894 which created the “Florida Self Directed Care Act” concerning DCF redirecting mental health and vocational services. It also provided for a pilot program for family directed mental health treatment and support services for certain children based on the SDC program for adults. (This however has not been implemented to date.)
Also in 2004 Ms. Celeste Putnam-Tanzy then Deputy Secretary for Substance Abuse and Mental Health Services of DCF received a letter from the Substance Abuse Mental Health Services Administration (SAMHSA). It stated that our SDC program is serving as a model for the country as SAMHSA/CMHS (Center for Mental Health Services) planned for the implementation of the President’s New Freedom Commission Report which was released in 2003.
On June 30, July 1-2 2004, the Florida Self-Directed Care (Florida SDC) Program, the Institute for Health & Human Services at Florida State University, and the National Research and Training Center on Psychiatric Disability of the University of Illinois at Chicago held its first annual National Conference in Orlando, Florida. It was titled, “SDC Mental Wellness – A Journey of Self-determination & Choice through medical, educational, and legal partnerships.”
In 2005 Self Directed Care was expanded to include District 8 now referred to as Circuit 20. Their fiscal/managing entity is NAMI of Collier County.
2006 Letty Ballard with Department of Children and Families Program Office reviewed the Self Directed Care program in preparation for the 2007 formal evaluation required by the legislation. The Advocates continued their commitment to SDC by their persistence in seeking accountability and protection for the continuation of the program through working with legislators, administrators, participants, Council members and other interested stakeholders.
In January 2007 the Report on the Effectiveness of the Self-Directed Care Community Mental Health Treatment Program as required by S. 394.9084 F.S. was presented by the Department of Children and Families Mental Health Program Office Director, Dr. Roderick Hall.
In June 2008 “A Self Directed Care Model of Mental Health Recovery” was published by Judith A. Cook, Ph.D, Carolyn Russell, Ph.D, C.P.A., Dennis Grey, B.A., Jessica Jonikas, M.A. in the Economic Grand Rounds of Psychiatryonline.org. It is an evaluation of the Florida SDC program and its success.
In 2008 Representative Bean presented House Bill #7041 co-sponsored by Senator Webster’s Senate Bill #1290 that provided expansion of the program to all districts of Department of Children and Families. It also deleted the expiration date of the program. SDC became firmly established legislatively as an ongoing program.
April 2009 Walter Norris SDC Program Director for the Texas SDC research pilot for the University of Illinois in Chicago (UIC) visited Jacksonville and met with Circuit 4 Council members, advocates, participants, Life Coaches, SDC and DCF administrators. Nancy Fudge (Advocate and participant of SDC), Gene Costlow (now retired employee of Circuit 4 DCF SAMH office) and Dr. Carolyn Russell (our first SDC Program Director) were hired by UIC as consultants to the Texas project.
June 5, 2009 David Coyle, Senior Lecturer, Dept. Mental Health and Learning Disabilities, Faculty of Health & Social Care, University of Chester, United Kingdom (UK) visited Jacksonville. He met with SDC advocates, participants, Council members, life Coaches, SDC and DCF administrators to discuss implementing self directed care in the UK using protocol, research and evaluations from our model.
August 12 2009 an SDC Awards luncheon was held in Nassau County. SDC Council members, grassroots advocates, participants and three members of the Office of Program Policy Analysis and Government Accountability (OPPAGA) were present. After the luncheon we met at Rachel Sutton’s office and participants and advocates were interviewed by the OPPAGA staff. They were beginning their evaluation of the SDC program per the requirements of the 2008 legislation.
April 10, 2010 the OPPAGA Report was released. Recommendations for improvements were listed, most of them related to DCF technology and data collection.
July 25, 2010 Betty Holmes, one of our Life Coaches passed away suddenly. Her assistance to the participants and advocacy for the program were an example of the commitment that is necessary to contribute to the success of the program. The Cathedral Foundation set aside funds to begin a Betty Holmes Memorial. Betty is dearly missed by her family, participants, co-workers and friends. Life Coach Tom Belanger was voted among his co-workers to receive the first Betty Holmes Memorial Award for his work at a Luncheon held on January 27, 2011.
January 27, 2011, Cathedral Foundation, Inc. hosted the SDC First annual Celebration Luncheon to mark their first year as our fiscal/managing entity. It was held at the Crowne Plaza Hotel in Jacksonville.
2011 began a new era of planning for healthcare. Discussions ranged from privatization of healthcare, managing entities, universal healthcare, etc. The advocates began preparing for this new era by working towards ways to integrate self directed care into all of them. SDC is a business model which could easily adapt to any privatized plan, HMO such as Value Options (Texas SDC uses Value Options), or universal healthcare like the UK is working toward in their country.
Since 2002 we have had three Fiscal/Managing Entities for our SDC program: Florida State University, Community Rehab Center, (CRC), Renaissance Behavioral Health, Inc. (RBHI), and presently Cathedral Foundation, Inc. (CFI).
SDC has and continues to face challenges that have threatened its existence. Presently it has been about lack of funding and the state of the economy. However, the program was never meant to be based on new funding but rather a re-direction of the existing mental health dollars per the 2001, 2004 and 2008 Legislation, hence, the term “the money follows the person.” Unfortunately, that only happened in the first year.
Our SDC advocates have had to fight very hard to try and secure funding and support for the program. Since the beginning of the development of SDC they have met with #3 Governors, #6 Secretaries of DCF, numerous legislators, multiple rotating DCF staff, other counties, states, countries, academic partners, participants, SDC Council members, managing entities, HMO companies, and hundreds of interested stakeholders. Their only mission is to see SDC continue and to be expanded statewide so that every individual who meets the criteria and chooses to be a participant will have the same opportunities of self determination, choice and self direction.
As you can see the Florida Self Directed Care has quite a history and one that we can be very proud of. Having been the first program of its kind in the country in 2002, we set a precedent for other states and countries. We have sown the seeds of self determination, choice and self direction. Let our voices be the wind that continues to spread the seeds of wellness to every individual who is seeking a meaningful journey toward recovery. Our personal testimony as a participant in Self Directed Care is the true “Evidence” of its success.
As a grassroots advocate and participant of SDC I pray that your commitment to your personal wellness through Self Directed Care will create a reality of hope in knowing that your future rests in your abilities...not in the hopelessness of disability.
“Don’t buy a round trip ticket if your destination is recovery” nf