Epilepsy Services of SW Florida

Transcription

1 Epilepsy Services of SW Florida SUMMARY 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. Contact Information Primary Address th Street Bldg. I-2 Sarasota, FL Phone Website Facebook Epilepsyservices Twitter ESSWF General Information nprofit Former Names Epilepsy Foundation of Southwest Florida, Inc. Tax Exempt Status Epilepsy Services of SW Florida Public Supported Charity Incorporation Year 1995 State Charitable Solicitations Permit Mar 2018 State Registration Mar

2 BACKGROUND & NEEDS Impact Statement Top five accomplishments: 1. Serving over 560 patients in the agency's eight county region; 2. Exceeded Florida Department of Health requirements for client intake, community outreach, prevention and education activities. 3. Refurnished reception area and offices at Sarasota headquarters utilizing funds from a Selby Foundation grant. Top five goals: 1. Continue to implement strategic plan which identifies areas targeted for improvements and assigns staffing and deadlines for appropriate action steps. 2. Seek additional sources of funding and resources beyond Florida Department of Health funding in order to meet the needs of additional uninsured epilepsy patients. 3. Provide treatment to the greatest number of eligible clients possible in order to gain and maintain their seizure control and to gain the greatest degree possible of personal dignity and independence. 4. Continue focus on volunteer board development 5. Increase program awareness in Lee and Collier counties. Needs Statement 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. $25k and up 2. Funding to hire regional development staff in order to identify and solicit funding resources in our eight county service area. $60k 3. Two to three additional volunteer board members. 4. Office upgrades in Lee and Collier counties. $10k 5. Resources to improve our public communications and branding. $10k Background Statement 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 4 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. Similar discounts 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 has a much higher cost per patient than our services. Additionally each patient is assigned a 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 2

3 other issues. In the future we strive to continue to expand our services and increase the number of patients we treat. Statement from the Board Chair Statement from the CEO/Executive Director 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 forward. Areas Served FL- Charlotte FL- DeSoto FL- Lee FL- Manatee FL- Sarasota Our agency serves the following counties: Manatee, Sarasota, Charlotte, DeSoto, Lee, Hendry, Glades and Collier. Service Categories Primary Organization Type Human Services 3

4 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 $335, Category Program Linked to Organizational Strategy Population Served Short Term Success Long Term Success Program Success Monitoring Program Success Examples Human Services, General/Other People/Families of People with Health Conditions US Adults 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! 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 evidence by client surveys 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 be desirable to create a level of awareness and financial stability so that all who could benefit from this program could have access to it. We keep track of our results by having the patients complete written surveys at their doctor and clinic appointments (at least once a year). 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. 4

5 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 safety, 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 $135, Category Program Linked to Organizational Strategy Population Served Short Term Success Long Term Success Program Success Monitoring Human Services, General/Other People/Families of People with Health Conditions Unemployed, Underemployed, Dislocated Adults The success of this program is less tangible than with our Direct Client Service Program, however, its importance is no less significant. One hundred percent 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. 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 measured by surveys. Surveys are distributed to all people attending one-on-one or small group seminars.with large group programs or awareness activities where surveys are impractical, we measure success by the number of people spoken with, attending, or receiving materials. 5

6 Program Success Examples 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. Comments Program Comments by Organization 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.our program has helped people with epilepsy deal with these issues for 45 years. We provide critical medical attention to uninsured individuals. Additionally, we offer case management, referrals to other community services and prevention and educational programs to the community at large. Our current case load of patients is approximately 600. A quick look at the statistics available show that there is room to help many others. In a 2012 Institute of Medicine report it is estimated that 2.2 million people out of the US population of 313 million have epilepsy and approximately 150,000 new cases are diagnosed each year. Our service area including Sarasota, Manatee, Charlotte, Lee, De Soto, Hendry, Glades and Collier has a population of 1,031,206 people between the ages of 18 and 65 according to the most recent Census Bureau Report. Using the above US incidence rate of.7 percent it would follow that there would be more than 7200 people with epilepsy in our service area. Our program focuses on the uninsured. The census bureau s Economics and Statistics Administration estimated that 15.7 percent of the US population was uninsured. Using that figure you could estimate that in our service area there are approximately 1130 people who would qualify for our program more than double the number we now serve. In order for us to be able to address the segment of our population who would use our programs and services if they could, it will be necessary to significantly raise awareness and to raise additional funding to cover the cost of providing the services described above. 6

7 MANAGEMENT CEO/Executive Director CEO/Executive Director CEO Term Start July 2013 CEO Mr. Kevin Lindberg Experience Mr. Lindberg has more than 35 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. Former CEOs/Executive Directors Ms. Alison Haskins Jan Mar 2013 Manya Paru Apr June 2013 Staff & Volunteer Statistics Full Time Staff 5 Part Time Staff 3 Staff Retention Rate % 100 Professional Development Contractors 0 Volunteers 15 Management Reports to Board CEO/Executive Director Formal Evaluation Senior Management Formal Evaluation nmanagement Formal Evaluation Collaborations Our agency is a partner agency with United Way. We are a member of the Florida Epilepsy Alliance, Inc. which is a non-profit organization composed of state-wide epilepsy service providers. We also collaborate with the Florida Department of Health. Comments Management Comments by Organization Epilepsy Services of Southwest Florida welcomes the challenge of enhancing our ability to meet the needs of the increasing number of people facing epilepsy. To address emerging needs, we intend to engage 7

8 in more fundraising in order to secure unrestricted dollars, allowing us to address unmet needs. The unmet needs can range from having transportation funds available for our patients to get to medical appointments, to securing the participation of additional neurologists to treat our patients, to securing simple resources for staff to carry out their duties in a more effective and efficient manner. We recognize the importance of carrying out a fund development plan. 8

9 GOVERNANCE Board Chair Board Chair Mr. Matt Sandburg Esq. Company Affiliation Attorney Board Term July 2017 to June 2019 Board Chair Board Members Name Affiliation Status Mr. Jay Abrams Insurance Agent Voting Ms. Julie Aranibar Community Volunteer Voting Dr. Lane Carlin M.D. Mr. Art Jackman Esq. Neurologist, Florida Neurology Group, P.A. State Attorney's Office - Felony Supervisor Voting Voting Mrs. Jane Kelly Community Volunteer Voting Ms. Marilyn Kirchman RN Sarasota Memorial Hospital Voting Mr. Matthew Sandburg Esq. Private Practice Attorney, Law Office of Matt Sandburg, P.A. Voting Ms. Cynthia Smith Smith Wealth Management Voting Ms. Maria Vasconsuelos RN MedSol Voting Mrs. 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 Other 0 0 Board Demographics - Gender Male 4 Female 6 t Specified 0 Governance Board Term Lengths 3 Board Term Limits 99 9

10 Board Orientation Number of Full Board Meetings Annually 4 Board Meeting Attendance % 48 Board Self-Evaluation Written Board Selection Criteria Percentage of Board Making Monetary Contributions 80 Percentage of Board Making In-Kind Contributions 50 Constituency Includes Client Representation Standing Committees Executive Finance Comments Governance Comments by Organization We continue to work to strengthen our organizational governance policies. We continue to seek additional appropriate board members who can not only help us reach our goal of 100 percent board giving, but to help assure that we can provide our programs and services to all who are eligible and wish to take part. 10

11 FINANCIALS Current Financial Info Tax Year Begins 2017 Tax Year Ends 2018 Projected Revenue $476, Projected Expenses $459, Total Projected Revenue includes "in-kind" contributions/ donations Endowment Value $0.00 Spending Policy Percentage 0 Tax Credits Capital Campaign In a Capital Campaign Campaign Goal 0 Anticipate Campaign Within Next 5 Years? IRS Form 990s Form 990 Form Form Form 990 Audit/Financial Documents Audit Audit Audit Audit Solvency Short Term Solvency Fiscal Year Current Ratio: Current Assets/Current Liabilities

12 Long Term Solvency Fiscal Year Long-Term Liabilities/Total Assets 0% 0% 0% Historical Financial Review Revenue and Expenses Fiscal Year Total Revenue $478,153 $435,475 $550,178 Total Expenses $470,383 $461,266 $521,670 Revenue Sources Fiscal Year Foundation and Corporation $0 $0 $0 Contributions Government Contributions $396,145 $339,349 $474,342 Federal $0 $0 $0 State $0 $339,349 $474,342 Local $0 $0 $0 Unspecified $396,145 $0 $0 Individual Contributions $77,511 $89,922 $41,822 Indirect Public Support $0 $0 $27,509 Earned Revenue $0 $0 $0 Investment Income, Net of Losses $117 $62 $3,056 Membership Dues $0 $0 $0 Special Events $0 $0 $0 Revenue In-Kind $23,570 $14,465 $0 Other $4,380 $6,142 $3,449 Expense Allocation Fiscal Year Program Expense $369,669 $368,707 $421,215 Administration Expense $74,297 $67,105 $72,591 Fundraising Expense $26,417 $25,454 $27,864 Payments to Affiliates $0 $0 $0 Total Revenue/Total Expenses Program Expense/Total Expenses 79% 80% 81% Fundraising Expense/Contributed Revenue 6% 6% 5% Assets and Liabilities Fiscal Year Total Assets $280,437 $246,143 $273,393 Current Assets $266,824 $232,722 $251,340 Long-Term Liabilities $0 $0 $0 Current Liabilities $47,011 $34,896 $36,160 Total Net Assets $233,426 $211,247 $237,233 Top Funding Sources Fiscal Year Top Funding Source & Dollar Amount Government Grants - Unspecified $396,145 Second Highest Funding Source & Dollar Contributions, gifts, Amount grants $77,511 Third Highest Funding Source & Dollar Amount 12 Government Grants - State $339,349 Government Grants - State $474,342 Contributions, gifts, Contributions, gifts, grants $89,922 grants $41,822 Other Income $4,380 Other $6,142 United Way $27,509

13 Comments Financial Comments by Foundation Financial information taken from IRS Form 990 and audit documents. Individual contributions include foundation and corporate support. Federal return for 2011 reconciles with audited financial statement; however, for tax years 2009 and 2010 the nonprofit filed Form 990-EZ which does not include a reconciliation between the corporate books and tax return. 13

14 PLANS, POLICIES & LICENSES Plans Fundraising Plan Communication Plan Strategic Plan Management Succession Plan Continuity of Operations Plan Policies Organizational Policies and Procedures Written Conflict of Interest Policy ndiscrimination Policy Directors and Officers Insurance Policy Risk Management Policy Professional Liability Commercial General Liability Whistle Blower Policy Document Destruction Policy Affiliations Affiliation Year United Way Member Agency 0 Government Licenses Is your organization licensed by the Government? Planning & Policies Comments Planning & Policies Comments by Organization Planning & Policies Comments by Foundation Created Copyright