This paper researches epilepsy, independent living and the need for funding. We will assess the disability that is epilepsy, the history of the independent living movement, and the proposed program. We will learn about different methods to keep this diverse group of people together and increase their independence. Possible outcomes and follow up care will also be reviewed.
Keywords: Epilepsy, independence
Epilepsy is a serious and life-threatening condition that can take away a person’s independence (Shafer, 2017). Patient’s that suffer from epilepsy have recurrent, unprovoked seizures (NCIL, 2019). A person is diagnosed with epilepsy if they have two seizures that were unprovoked, meaning the seizures did not have a direct cause (Karis, 2018). This is important to note because the diagnosis of epilepsy does not indicate the cause of the seizures or severity (Karis, 2018). There are a variety of different seizures disorders with severity varying greatly on the individual patient (Sanders, 2019).
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Over three million people in the united states have epilepsy, yet one third of people with epilepsy live with uncontrollable seizures because of unsuccessful treatment (Karis, 2018). These people are right here in the community and they need our help! One is twenty-six will develop some form of epilepsy in their lifetime and often the seizures are paired with additional neurologic disorders (Sanders, 2017). The diagnosis of epilepsy greatly impacts the amount of independence a person has, the goal of this program is to improve quality of life by increasing the individual’s independence (Ritter, 2017).
Epilepsy is the fourth most common neurological disorder that affects people of any age (Sanders, 2017). It is highlighted with seizure episodes that affect how a person appears or acts for a short period time. Brain cells are affected by a surge of electricity and therefore cause seizures (Karis, 2018). A seizure is defined as a sudden surge of electrical activity that is cause by complex chemical changes (Karis, 2018). The majority of epilepsy cases are idiopathic while others are paired with separate neurological conditions, such as a brain injury (Shafer, 2017). Seizures can present in many forms such as convulsing or excessive blinking (Karis, 2018).
Epileptics are often left with severe symptoms that can limit their daily activities (Shafer, 2017). For example, patients with active seizures are not permitted to drive. This often leads to unemployment and limited independence (Ritter, 2017). Another obstacle that epileptics face is caring for themselves. While some patients with epilepsy are able to live alone and handle daily task, others are unable to be left alone due to the risk of injury (Karis, 2018). When surveying people in our community with epilepsy the question was asked, what is your quality of life and how can it be improved, the response was astonishing. Seventy five percent of epileptics state their independence has been affected by epilepsy (Karis, 2018).
The independent living movement is founded in the belief that people with disabilities regardless of the form, have a common history (Ritter, 2017). These individuals share a unique struggle and are the best experts on their own needs. The independent living model encompasses the philosophy that even with disabilities, a person should have control over their life (NCIL, 2019). Traditional opinions view disabilities as an impairment while the independent living model sees the problem differently. This model demonstrates the importance of the person, not the disability (NCIL, 2019). It’s important to focus on what the person can achieve rather than what they aren’t able to do (Ritter, 2017).
The program that I am proposing will benefit epileptics in our community. It would aid in increasing independence and overall quality of life by education. The need for this program can be illustrated in our own community. I have researched several ways to make this program effective and believe that the proposed program will be a success. The programs dynamic and methods will be described throughout this proposal.
The proposed program has been titled “Epilepsy Advocates” with the purpose of reaching out to citizens of the local community. As a health promotion agency our goal is to increase independence to individuals suffering from health issues. Epilepsy Advocates plans to do this by offering a variety of classes to the public. These classes have two major aspects, one being education and the second being action. All our classes will start of with a portion of education, helping the public understand what the monthly topic is and how it relates to epilepsy. This will help develop a deeper meaning through understanding, while sparking ideas in our consumers.
Our program plans on developing an inclusive environment for all those that attend. This means having a single leader for the classes with associate leaders from the community coming to assist and education with action. I, Shelby Laurence, have been voted the leader of this group by our local health promotional agency. I will be organizing classes, oversee marketing, and managing our budget. I am excited about starting Epilepsy Advocates right here in our community, together we can make a difference!
I have included a proposed budget for our program below. The budget includes marketing, supplies, staff, location, dietary needs, permits and scholarship.
Proposed budget, January 2020 to December 2020
Marketing: $2,000 annually
Supplies: $2,000 annually
Location: No expense
Dietary Needs: $2,500 annually
Permits: $1,000 annually
The relative cost of the Epilepsy Advocate Group is estimated to be one thousand united states dollars a month. This comes to a total of twelve thousand dollars yearly. This cost includes refreshments offered at the scheduled meetings and marketing expenses. The initial cost of paper and ink has been calculated into the proposed budget. This will allow paper products such as flyers and pamphlets to be distributed. These informational handouts will be essential to our program as our guest will be provided worksheets that can help them become more independent (Fisher, 2019).
Description of Budget
Marketing. Marketing for independent living groups has showed great success when utilized in the appropriate locations (NCIL, 2019). As this group is catering to citizens with epilepsy, we have partnered with the local Neurology offices to promote our program. Dr. Siefken has agreed to inform his clients about said program while encouraging attendance. Marketing at the local neurology office is one way we will market to our target group of those with seizures (Angalakuditi, 2016). Additional marketing will be expressed with advertisements in the local paper, The Coastal Courier. Upon meeting with The Coastal Courier’s Chief Editor, Cody Laurence, he has showed great interest in partnering with our program. Mr. Laurence has expressed his desire to provided advertisement spacing at a discounted cost due to the non-profit nature of our company.
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Supply expenses. Funding is required for this program in order to have adequate supplies. Supplies for our classes vary but include paper, pens, pencils and other needs that will help further educate. While most of these supplies are low cost, the price adds up when supplying over the length of a year. We anticipate an attendance of one hundred and fifty people for each class. This number does not include staff or guest speakers. We are excited about the potential growth of our program over time and look to serve all those that are willing to participate.
Staff and volunteer expenses. Volunteers will run this program and have already been acquired through local companies. This is a great opportunity for local students to obtain volunteer hours and give back to the community. Some of the agencies we have commitments from are Liberty Regional Medical Center, Liberty County Health Department, The City of Hinesville and Bradwell High School. We are excited to partner with these groups as we have the same goal of increasing independence of those with epilepsy.
Location expenses. The meetings will be at held at one location to ease any confusion that may occur with a changing location. The location will be at Liberty Regional Medical Center in Hinesville, Georgia as they have agreed to allow us to use their classroom for our events. We have also met with some staff that will be assisting with specialty work shops for the community’s benefits. Some of these will be explained further but include transportation, women’s health, and obtaining home health care.
Dietary expenses. As the local health agency here in Liberty County Georgia we want to promote a healthy diet. This can be done by providing healthy snacks and drinks during our classes. This is especially important to our target group as epilepsy activity is frequently affected by the patient’s diet (Shafer, 2017). We want to provide healthy food and teach our members that having a healthy diet can decrease the occurrence of seizures (Fisher, 2017). This will also improve the overall health our community, decreasing obesity and illnesses that come with being overweight.
Permit cost and need. Various permits are required in the state of Georgia with the purpose of protecting all those involved. We are required to obtain a permit with Liberty Regional Medical Center in order to hold the Epilepsy Advocates classes in their facility. The permit is one thousand dollars yearly and can be viewed as a money saving choice. While the initial cost of the permit can be high, we are saving money by utilizing Liberty Regional and forgoing monthly rent on a separate location. The additional funding that we will be saving can be seen further developing our group.
Scholarship. One goal of this program is to encourage people of all ages to learn. Education is vital to maintaining independence. Epilepsy advocates want to not only educate during our classes but provided a scholarship to a high school senior here in Liberty County. This scholarship availability will motivate high school seniors that have epilepsy to further their education. College can be intimating to most and even more so to students that have epilepsy. We want to help cover some of the expenses that are seen with the first year of college with our scholarship. Students can apply in the spring of 2020 and must have epilepsy or a close family member that suffers in order to be eligible for this grant.
Epilepsy Advocates Proposed Classes
Medication management. The program will have monthly class, starting January 2020. These classes will help epileptics in our community. One of the proposed classes is medication management. During this class the attendees will be informed about different types of antiepileptic drugs and associated side effects. We want to educate this diverse group of people about the different options available. Pharmaceutical sales representatives from McKesson will be present to answer any questions the group may have. This session will be broken down into two parts with the first-class assessing medications and the second review medication management.
Medication management is a strategy used to increase consumer compliance (Shafer, 2017). Compliance is important to any patient that is prescribed medication but increasingly important to people that have epilepsy. If a medication is missed or not taken regularly the chance of a seizure occurring is increased significantly (Shafer, 2017). The program wants to help patients create a dependable routine in their daily lives. Actives that will be involved in this class will include creating a schedule for each individual and decreasing the occurrence of missed doses. Patients will learn what to do if a medication dose is missed and how to treat any adverse side effects.
Transportation. Transportation for the disabled can be extremely hard to secure, even more so in people with active seizures. Patient are required to have a set seizure free period of time in order to obtain a driving license, this is to ensure driver and pedestrian safety (Shafer, 2017). Our plan is to educate the group on local DMV laws as these vary state to state. The group will learn the required forms and how to properly submit them to the assigned agencies. This will be beneficial to both the group and parents of children with epilepsy. We also want to hold a small workshop during this meeting that reviews transportation options. Options include bus tickets, taxis, and medical transportation; however, cost is often a concern of many. Discounted memberships may be available to the group through the City of Hinesville, only requiring an application for most cases. Ensuring reliable and safe means of transportation is important and needs to be addressed.
Women’s Health. Pregnancy can be challenging for women with epilepsy, this can carry into birth and post-partum. For this reason, Epilepsy Advocates will be holding a class, educating women with epilepsy what to expect during and after pregnancy. This portion of the program will also cover the increased risk of seizure activity during menstruation. I have contacted local obstetricians and mid wives that have agreed to volunteer their time to teach this class. They have prepared material that will aid in every stage of a woman’s life.
Sudden unexpected death in epilepsy. We will also be holding a class that goes over sudden unexpected death in epilepsy. This is referred to as SUDEP in the seizure community and is similar to SIDS (Sanders, 2017). SUDEP can affect a person with epilepsy at any stage of their lives (Sanders, 2017). During this special class we will go over the definition of SUDEP, prevention and questions that may be helpful to their neurologist. We want to hold this event for the community to high light the seriousness of epilepsy. During this event we will have paramedics from Liberty Regional Medical Center that will also teach first aid and CPR to our attendees.
Methods for Follow Up
Surveys. While the goal of the program is clear, increasing independence by education, it is important that we as a group are reaching our goal. Following up with our members will be vital to the success of Epilepsy Advocates. We want to better lives by education but does this work? We have developed a survey that will be taken anonymously at the end of each class. Surveying the attendees will help us gage the amount of help we are currently offering. Survey questions will be generic with a rating of one to ten. A response of ten will indicate that helpfulness of the class and one will express the extreme need for improvement.
Our members will be able to “grade” us on our effectiveness. The questions will vary from the overall quality of the program, amount of information provided, engagement level of the class and if the class has helped increase independence and better living. We will also include a space for additional comments that the members may want to include. This space can also be utilized as a request area, as attendees can list a specific topic they believe will help the overall program.
Consulting. We have partnered with Dr. Siefken at Hinesville Neurology Associates to be a guest speaker at designated events. He has also agreed to help with the overall function of this program by being a consulting agent. Together we believe that this program can change lives. In order to illustrate the success of Epilepsy Advocates and ensure we are meeting goals he will provide surveys at his office. These surveys will be anonymous and be made up of similar questions. We want to know how epileptics feel about their quality of life, what inhibits them, what could help and what they want in a program. This is helpful to us as a local health agency so that we can better provide for the community.
Independence should not be limited by a person’s disability but rather gaged by their ability to perform such tasks (Ritter, 2017). The citizens in our community should not be limited and this statement is the goal of our program. I believe the best way to obtain independence is by education. Often times patients do not know their rights, they don’t know that they have a say in their health care selections. The education our program has to offer is just the start. Members of our group can take this information to better the medical options they have available, in turn bettering their quality of life.
Each class has a different focus but shares the same common goal. The women’s health class illustrates the importance of medical treatment while pregnant, but also reveals that a healthy pregnancy for epileptics is possible. We are excited to offer classes such as these and can’t wait to add other classes that go over physical and occupational therapy. Physical limitations of epilepsy can greatly impact the amount of independence a person has. During these additional classes we will teach proper body mechanics and safe ways to live in their homes. Disability is not only physical but mental, as is epilepsy. The proposed program does a great job at highlighting this with education and action.
The potential success of Epilepsy Advocates is massive as educating our community on seizures and the possibility of independence is needed. The structure of this program has been outlined within this paper and I hope that you, as the funding agency, can now better visualize the good of this program. It is very likely that this program can not only save lives but increase the quality of life for those that suffer from this disorder. As the only local health promotion group in this community it is our job to educate the public about obtaining independence from their disability and making a difference.
- About Independent Living. (2019, May 30). Retrieved November 2019, from https://www.ncil.org/about/aboutil/.
- Angalakuditi, M. (2016, September). A comprehensive review of the literature on epilepsy in selected countries in emerging markets. Retrieved November 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3191871/.
- Fisher, R. (2017, September). Staying Safe. Retrieved November 2019, from https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe.
- Karis, J. P. (2018, June). Epilepsy. Retrieved November 2019, from http://www.ajnr.org/content/29/6/1222.
- Ritter, L. A., & Graham, D. H. (2017). Multicultural health, 2nd ed. Burlington, MA: Jones & Bartlett Learning.
- Sanders, C. (2017, August). Disability Resources. Retrieved November 2019, from https://www.epilepsy.com/living-epilepsy/legal-help/disability-resources.
- Shafer, P. O. (2017, August). Independent Living. Retrieved November 2019, from https://www.epilepsy.com/living-epilepsy/independent-living.
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