Executive Summary

The Epilepsy Foundation of Michigan mailed its 2001 Needs Assessment Questionnaire in December to 1,984 people in Michigan, who had contacted us within the past year. We received 214 completed questionnaires. Those questionnaires were compiled and analyzed to create this report. The purpose of this Needs Assessment was to learn more about the problems faced by people with epilepsy and their families who live in Michigan, and how effectively the Epilepsy Foundation's services are addressing these problems. The Foundation will use this report to prioritize current services and aid in the development of new services. Also, the report will be helpful to others involved in serving people with epilepsy or shaping policies that affect them.

Approximately one to two percent of people in the U.S. have epilepsy. For about 50% of these individuals, a regimen of daily medication results in the elimination of seizure activity and a life with few limitations. However, for the remainder, epilepsy can have a significant and negative impact on the quality of life, independence, and the ability to achieve one's goals. Seizures persist despite treatment making employment opportunities and transportation difficult to find, and their emotional well being suffers.

The societal and personal toll of this too often overlooked disorder cannot be ignored. Our 2001 Needs Assessment reinforces the findings of similar surveys conducted in 1995 and 1998, and it sheds new light on the prevalence of social and emotional problems associated with epilepsy. Depression, low confidence/self-esteem, and increased seizure activity due to stress were all among the five most prevalent problems of the 27 listed on the questionnaire, with each being reported by over 72% of respondents.

Employment and transportation problems were rated as having the greatest impact among those affected, with between 55 and 69% of affected respondents rating these problems as "big" or "very big." Difficulty controlling seizures, side effects from medications, and public misunderstanding were also ranked among the top problems, with over 64% of respondents reporting each.

All of our statistics are supported by written comments from the respondents. Their comments illustrate in greater detail the nature of the problems, and the impact they have on the lives of people with epilepsy.

Medication, the most widely used treatment for epilepsy, still leaves much to be desired in terms of cost and effectiveness. Over 96% of respondents are taking at least one anti-epileptic medication, and 54% are taking more than one. These medications come at an average out-of-pocket cost of $98 a month. Despite the cost, only 27% of respondents have complete seizure control, and 17% have uncontrollable seizures. In addition, 75% of respondents cite medication side effects as a problem. Lack of seizure control and the presence of additional disabilities were two factors that significantly increased the perceived impact of many problems associated with epilepsy.

When it comes to employment and income, people with epilepsy continue to lag behind the general population. Among respondents of working age, 32% were unemployed, as compared to the general population in Michigan, for whom the unemployment rate has fluctuated between three and six percent over the past year. Furthermore 35% of respondents with epilepsy who are employed full- or part-time earn less than $10,000 per year, as compared to only 15% of employed U.S. residents between the ages of 18 and 65 (Current Population Study, 2000).

This Needs Assessment is all for naught, however, if agencies and policy makers do not act accordingly to address the needs that it so clearly illustrates. The following public policy recommendations, if implemented, will help to create an environment in which people with epilepsy can thrive.

The Epilepsy Foundation Public Policy Recommendations:

Treatment

• Health care policies that ensure access to appropriate and affordable health care including medication, for all children and adults with epilepsy, without restrictions or unnecessary delays.
• Increased funding for research into medications and other treatments that will provide reliable seizure control with fewer side effects. The goal is no seizures, no side effects.

Transportation

• The establishment and maintenance of well-coordinated, accessible, and affordable regional public transit and paratransit systems.
• Revising driver's licensing laws so that people who have seizures that do not impair consciousness or occur only while sleeping are not unnecessarily restricted.

Employment

• Programs that provide additional financial supports and services to enable those seeking employment to either work at home or obtain transportation to and from work sites.
• Active enforcement and promotion of laws that prohibit discrimination and require accommodation in the workplace.

Public Awareness

• Public awareness campaigns that promote understanding and dispel myths about epilepsy, particularly among employers, school staff, health and human service professionals, and police officers.

The Epilepsy Foundation is committed to expanding its public awareness efforts while equipping individuals with epilepsy and their families with the knowledge, and skills needed to manage epilepsy and succeed. Without a positive outlook, however, success may seem unattainable to many; therefore, the Foundation will also tend to the emotional barriers that epilepsy can create. Together, these steps will lead to a future where all people with epilepsy have the tools, and the opportunity to reach their goals.

A Call to Action: Meeting the Needs of People with Epilepsy in Michigan provides a summary of the 2001 Needs Assessment and other information. To view this report, click here. You will need the free Adobe Acrobat Reader to open this document.

A detailed report of the 2001 Needs Assessment itself can be obtained by contacting the Director of Education at (800) 377-6226 ext. 302.