Epilepsy Services of Southwest Florida

Epilepsy Services of Southwest Florida General Information Contact Information Nonprofit Primary Contact First Name Primary Contact Last Name Epilepsy Services of Southwest Florida Kevin Lindberg Address 848 1st Ave N Suite 220 Naples, FL 34102 Phone (941) 9535988 303 Organization E-mail klindberg@esswfl.org Web Site www.epilepsy-services.org Facebook http://www.facebook.com/epilepsyservices Twitter http://www.twitter.com/esswfl At A Glance Year of Incorporation 1995 Former Names Organization's type of tax exempt status Epilepsy Foundation of Southwest Florida, Inc. Public Supported Charity Organization EIN# 59-3281492 1

Statements & Search Criteria Mission To assist all uninsured adults diagnosed with epilepsy in the agency's eight county region to obtain medical, case management and prevention and education services so that they may overcome the problems associated with the disorder and to assist them in achieving independence, self sufficiency and their maximum potential. Background Epilepsy Services of Southwest Florida is a not-for-profit organization providing (i) medical, (ii) case management and (iii) prevention and education services to uninsured individuals who have epilepsy in an eight county area on the west coast of Florida. We are dedicated to the prevention and control of epilepsy and its consequences and to assisting people with epilepsy, as well as their families and other concerned individuals in overcoming the problems associated with the disorder. We help our patients work towards independence and self-sufficiency so that they may achieve their maximum potential. In the past two years we have served approximately 600 patients annually. We help our clients control their seizures by creating and regularly monitoring an individualized plan of care for each patient. With the help of local neurologists and other medical providers we hold regular clinics providing treatment and follow up. Each patient receives medical testing and care appropriate to their condition. These services have been shown to drastically improve their quality of life. We are able to provide these services because they are donated or provided at deeply discounted rates. For example, the cost of an initial evaluation by a neurologist in our program is $85 as opposed to $325 regularly (average). Similar rates prevail for other services such as lab tests, MRI's and EEG's. Most of our clients receive these services at no cost to them. By controlling the seizures of our clients we reduce the number of individuals who go to the emergency room for treatment which can cost the taxpayers $2,500-$5,000 or more per instance. In addition, our case management services focus on the whole individual. Each patient is assigned a specific case manager who assists them with medical or other social problems they may encounter as a result of epilepsy such as transportation, housing, employment, substance abuse and other issues. In the future we strive to continue to expand our services and increase the number of patients we treat. Needs Top five pressing needs: 1. Additional funding to pay for critical medical testing and services for uninsured adults with epilepsy and to hire additional staff to handle increased caseload. 2. Funding to hire regional development staff in order to identify and solicit funding resources in our eight county service area. 3. Three to five additional volunteer board members. 4. Volunteers to assist with a variety of activities throughout the organization in order to increase organizational efficiencies. 5. Long range strategic plan 2

CEO/Executive Director Statement The goal of the Epilepsy Services of Southwest Florida is to assist in the process of empowering our patients toward self -management in order to be able to lead as close to a normal life as possible. With appropriate and effective diagnosis and treatment we regularly experience this outcome. According to a recent report from the Institute of Medicine (IOM), epilepsy is the nation's fourth most common neurological disorder after migraine, stroke and Alzheimer's disease. Epilepsy is a complex spectrum of disorders that affects millions of people in a variety of ways and is characterized by unpredictable seizures that differ in type, cause and severity. Living with epilepsy is much more than just seizures. The disorder is often defined in practical terms such as challenges in school, uncertainties about social situations and employment, limitations on driving and questions about independent living. Preventing epilepsy is possible for some causes of the disorder. The IOM report states that progress has been made in developing new seizure medications and refining medical devices and surgical techniques to reduce or eliminate seizures for many individuals with epilepsy. However, referrals to specialized care are often delayed, and access to these treatments fall short, particularly for underserved populations. Epilepsy Services can provide these at-risk patients with medical, prescription and case management services at little to no cost. We are able to pay for these costs because we contract with local neurologists and other medical service providers to obtain the services at greatly reduced prices. Our doctors donate or substantially discount their services as do laboratories, medical suppliers and pharmaceutical companies.our program has helped people with epilepsy deal with these issues for 45 years. We provide critical medical attention including access to consultation with neurologists, diagnostic testing and assistance accessing medications to low income and uninsured individuals. Additionally, we offer case management, referrals to other community services and prevention and educational programs to the community at large. There are more people who could use our services if we could generate the additional resources needed to provide them. This is our focus moving forward. Areas Of Service Areas Served Areas Served ALL Geographic areas served in Collier County Our agency serves eight counties. Our Naples office serves clients from Collier, Glades and Hendry counties. Service Catergories Personal Social Services 3

Programs Programs Direct Client Services Description The Direct Client Services Program centers on medical treatment for the patient and helping the patient overcome the problems associated with epilepsy. When a patient is referred to us a case manager will conduct an intake interview to gather the patient's medical history and schedule an initial exam with a neurologist. The case manager will educate the patient about epilepsy, ways to manage seizures and epilepsy first aid. Generally the doctor will order certain tests such as an MRI, EEG and/or blood work and an individualized plan of care is prepared for the patient based on the test results. The patient will then attend clinics, have follow up appointments and further testing, as necessary. Meanwhile, the case manager may assist the patient with enrolling in Florida's Patient Assistance Program (which may allow them access to free or low cost medications) or work with other agencies to assist with other social or medical issues. Budget 335000 Long-Term Success Short-Term Success Examples of Long-Term Success Target Population 1 Target Population 2 We currently treat approximately 600 patients annually. While we are handling current demand for services we do not have the financial resources necessary for growth. Also, given population figures, epilepsy incidence rates in adults and the number of people without access to adequate health care, it is clear the number of people who could benefit from our programs is much higher. As shown by our short term success record, the services we provide patients involve drastically positive changes in their lives. A high percentage of those who access our services can maintain a level of control over their seizures and increase the prospect for leading normal lives. Long term it would desirable to create a level of awareness and financial stability so that all who could benefit from this program could have access to it. 95% of our patients reported no seizures requiring an emergency room visit. 90% of our patients reported that they feel better about themselves as a result of the Agency's services. 85% of our patients report that they are more independent in taking care of their needs. What we do works! Many times the patients treated by our agency can achieve independence and self-sufficiency previously unobtainable when not receiving medical treatment for the disorder. With treatment some patients can eliminate their seizures and obtain a driver's license, hold a job and accomplish many other daily tasks other people take for granted. By helping patients reduce or control their seizures, the Agency's services help many patients be more personally safe and comfortable in public situations. Other Named Groups Poor/Economically Disadvantaged, Indigent, General 4

Prevention and Education Program Description The prevention and education programs center on education of patients, their families, friends, employers, co-workers and the general public on epilepsy, seizure prevention and epilepsy first aid. The program encompasses many different forms of prevention and education activities from one-on-one meetings regarding the disorder and ways to prevent seizures to first aid and seizure recognition training sessions to bike helmet fitting events. A stigma is often associated with the disorder. Many times in public settings a seizure may be mistaken for mental illness or a drug-related incident. This leads many patients to feel uncomfortable and awkward in public and/or social settings and to be treated unfairly. Education of police, fire saftey, first responders, nurses and other officials and the general public can not only save lives but can go a long way to creating a positive outcome and interaction where lack of knowledge and fear may previously have prevailed. Budget 135000 Long-Term Success Short-Term Success Examples of Long-Term Success Target Population 1 Target Population 2 Ultimately we want 100% of our patients and their friends, family and coworkers to understand the disorder and know epilepsy first aid. We would like to provide training for all local emergency workers and officials as well as nurses on the disorder, seizure recognition and prevention and epilepsy first aid. The success of this program is less tangible than with our Direct Client Service Program, however, its importance is no less significant. 100% of those being educated should know what to do when someone is having a seizure and should know the characteristics of the disorder. The success for this program is linked to how many people are reached by it and provided education. When patients and/or their families come to us for counseling after receiving their first diagnosis of Epilepsy, they generally don't know much about the disorder. Many times they are scared or confused and have a hard time even understanding the medical terminology being given to them. For these people, gaining a basic understanding of the disorder and knowing how to perform first aid in the event of a seizure is extremely helpful and comforting. With help from the neurologists, many times they can learn how to control or manage their seizures. They can learn triggering factors and how to avoid certain situations which may cause them harm. This program also gives them a vehicle to educate those around them about the disorder. Friends and family may frequently find themselves needing to give first aid or communicate an issue regarding the disorder to an official or someone in the public. Education works for our patients and we are committed to providing it. Other Named Groups Other Named Groups 5

Impact Goals What are your organization's long-term strategic goals? The goal of the Epilepsy Services of Southwest Florida is to assist in the process of empowering our patients toward self -management in order to be able to lead as close to a normal life as possible. With appropriate and effective diagnosis and treatment we regularly experience this outcome. According to a recent report from the Institute of Medicine (IOM), epilepsy is the nation s fourth most common neurological disorder after migraine, stroke and Alzheimer s disease. Epilepsy is a complex spectrum of disorders that affects millions of people in a variety of ways and is characterized by unpredictable seizures that differ in type, cause and severity. Living with epilepsy is much more than just seizures. The disorder is often defined in practical terms such as challenges in school, uncertainties about social situations and employment, limitations on driving and questions about independent living. Preventing epilepsy is possible for some causes of the disorder. The IOM report states that progress has been made in developing new seizure medications and refining medical devices and surgical techniques to reduce or eliminate seizures for many individuals with epilepsy. However, referrals to specialized care are often delayed, and access to these treatments fall short, particularly for underserved populations. Epilepsy Services can provide these at-risk patients with medical, prescription and case management services at little to no cost. We are able to pay for these costs because we contract with local neurologists and other medical service providers to obtain the services at greatly reduced prices. Our doctors donate or substantially discount their services as do laboratories, medical suppliers and pharmaceutical companies.our program has helped people with epilepsy deal with these issues for over 45 years. We provide critical medical attention including access to consultation with neurologists, diagnostic testing and assistance accessing medications to low income and uninsured individuals. Additionally, we offer case management, referrals to other community services and prevention and educational programs to the community at large. There are more people who could use our services if we could generate the additional resources needed to provide them. This is our focus moving forw Strategies What are the major strategies you will do to accomplish your goals? The major priorities of Epilepsy Services of Southwest Florida are to: 1. Provide treatment in our eight county service area to the highest number of underserved adults with epilepsy as possible in order to gain and maintain their seizure control, as well as to gain the greatest degree possible of personal dignity and independence. 2. Strengthen the organization s financial base and infrastructure in order to improve the service delivery system. 3.Inspire commitment from staff, volunteers, financial supporters and vendors. Capabilities What are your organization s capabilities for doing this? Epilepsy Services of Southwest Florida has been operating in one form or another since the late 1960's. We currently have five full time employees including four case managers. We have three part-time employees. We have a highly skilled case manager working with our clients in Naples. We also have an office in Naples. The physicians from Collier Neurologic Specialists provide their services gratis and currently see about 60 clients from Collier County. We have volunteer board of director participation from Naples and Bonita Springs along with eight other board members representing our eight county service area. These volunteers provide organization oversight. The organization is part of the Florida Epilepsy Program of the State of Florida and is funded in part by the Florida Department of Health. The agency also receives funds from two United Way programs and seeks other individual and public support through grants and events. Twelve neurologist currently volunteer their services throughout the region. 6

Indicators What indicators do you use to measure progress? Epilepsy is the nation s fourth most common neurological disorder after migraine, stroke and Alzheimer s disease according to the Institute of Medicine. It is a complex spectrum of disorders affecting millions of people in a variety of ways and characterized by unpredictable seizures that differ in type, cause and severity. An estimated 2.2 million Americans have epilepsy with 150,000 new cases diagnosed each year. Seventy percent of Epilepsy Services clients will be successful in maintaining or reducing the number of seizures they experience. This will be monitored by asking the question at initial intake and again during the annual plan of care appointment. Eighty percent of clients will report that they are more independent in taking care of their needs. Seventy percent of clients will indicate a reduction in emergency room visits after one year in the program. Progress towards these outcomes are monitored by surveys given to clients at clinics as well as during their annual plan of care meetings. Survey tabulations show we are regularly meeting or exceeding these goals. The doctors and case managers can help clients control their seizures by creating and regularly monitoring an individualized plan of care. With the help of local neurologists and other medical providers we hold regular clinics providing treatment and follow up for clients. These services have been shown to drastically improve their quality of life. Further, by controlling the seizures of our clients we reduce the number of individuals who go to the hospital emergency room for treatment which they are most often unable to pay for. This can have a significant impact on the overall cost of health care. In addition, our case management services focus on the whole individual. This continuum of services has been shown to drastically improve the quality of life for people living with the daily uncertainty of seizures. Progress What have and haven t you accomplished so far? Prior to 2013 it was common for the agency to put potential clients on a waiting list when funding was not available. Since then we have accommodated in a timely fashion, any client eligible to the service. We have improved our infrastructure since then as well, mostly by moving all four regional offices into more appropriate and more efficient office space. We have selected and retained qualified and dedicated employees by offering a professional and empowering work environment. We have improved our governance by making sure all of our geographic regions were represented by board members. We have looked for volunteer board members who have a significant epilepsy connection. Our board members from Bonita Springs and Naples have both faced epilepsy challenges with family members. We continue to focus on diversifying our revenues so that we can build our reserves and offer competitive compensation to staff. We would like to have a director of development to improve our visibility and fund raising in Collier and Lee counties. 7

Board & Governance Board Chair Board Chair Arthur Jackman Board Members Name Affiliation Status Mr. Jay Abrams Insurance Agent Voting Ms. Julie Aranibar Volunteer Voting Dr. Lane Carlin Mr. Art Jackman Neurologist, Florida Neurology Group, P.A. State Attorney's Office - Felony Supervisor Voting Voting Ms. Jane Kelly Volunteer Voting Ms. Marilyn Kirchman RN Voting Mr. Matthew Sandburg Private Practice Attorney, Law Office of Matt Sandburg, P.A. Voting Ms. Cynthia Smith Merrill Lynch Voting Ms. Maria Vasconcelos Med Sol Voting Ms. Margaret Yurewitch Newsbank Voting Board Demographics - Ethnicity African American/Black 0 Asian American/Pacific Islander 0 Caucasian 10 Hispanic/Latino 0 Native American/American Indian 0 Board Demographics - Gender Male 4 Female 6 Unspecified 0 Governance Board Term Lengths 3 years Board Term Limits 0 Board Meeting Attendance % 0 Written Board Selection Criteria? Written Conflict of Interest Policy? Yes Yes Number of Full Board Meetings Annually 4 8

Management Executive Director/CEO Executive Director Kevin Lindberg Term Start July 2013 Email klindberg@esswfl.org Experience Mr. Lindberg has more than 30 years of not-for-profit management and leadership experience including executive director roles with The Wellness Community Southwest Florida and The Southwest Florida Chapter of the American Red Cross. Throughout his time with these organizations Mr. Lindberg has specialized in strategic planning and board development as well as fund development. He has led renovation and capital campaigns and managed diverse revenue sources from direct mail, grants, planned giving amd public funding to special events Staff Full Time Staff 5 Part Time Staff 3 Volunteers 15 Plans Organization has a Strategic Plan? Under Development 9

Financials Current Fiscal Year Fiscal Year 0 Projected Revenue $465,000.00 Projected Expenses $445,000.00 Detailed Financials Revenue and Expenses Fiscal Year 2016 2015 2014 Total Revenue $435,475 $550,178 $443,880 Total Expenses $461,266 $521,670 $521,229 Revenue Sources Fiscal Year 2016 2015 2014 Foundation and Corporation $89,922 $69,331 $74,472 Contributions Government Contributions $339,349 $474,342 $377,354 Federal -- -- -- State -- -- -- Local -- -- -- Unspecified $339,349 $474,342 $377,354 Individual Contributions $89,922 $69,331 $74,472 Indirect Public Support $0 $0 $0 Earned Revenue $0 $0 $0 Investment Income, Net of Losses $62 $1,803 $3,225 Membership Dues $0 $0 $0 Special Events $0 $0 $0 Revenue In-Kind $0 $0 $0 Other $0 $1,253 ($18,935) Expense Allocation Fiscal Year 2016 2015 2014 Program Expense $368,707 $421,215 $403,045 Administration Expense $67,105 $72,591 $91,084 Fundraising Expense $25,454 $27,864 $27,100 Payments to Affiliates -- -- -- Total Revenue/Total Expenses 0.94 1.05 0.85 Program Expense/Total Expenses 80% 81% 77% Fundraising Expense/Contributed Revenue 5% 5% 5% Assets and Liabilities Fiscal Year 2016 2015 2014 Total Assets $246,143 $273,393 $240,497 Current Assets $86,446 $104,931 $164,367 Long-Term Liabilities $0 $0 $0 Current Liabilities $34,896 $36,160 $32,741 Total Net Assets $211,247 $237,233 $207,756 Capital Campaign 10