Tenth Training Conference Empowers Grassroots Advocates

By Regina Reid
EpilepsyUSA staff
Posted: July 1, 2003

Close to 200 people from 30 states came to the nation's capital on behalf of their sons, daughters, mothers, clients, communities and their own futures, and shed tears of pride and disappointment as they shared their reasons for attending the 10th Public Policy Institute.

One woman's daughter became a neurologist after growing up with mom's seizures. Another young woman doesn't want to have children for fear that she'd pass the disorder on to them. An education coordinator for a local Epilepsy Foundation told of people who would rather stay home with the shades drawn than face the world with epilepsy. Another parent lamented the discrimination that her two children with epilepsy are subjected to.

This year's Public Policy Institute, held in Washington, D.C. April 6 through 9, unveiled many stories of living with epilepsy. It also empowered epilepsy advocates to tell those stories to their representatives in Congress to encourage them to support increased funding for epilepsy research and educational programs.

This year's PPI included a new component. On April 7, Epilepsy Foundation representatives from around the country attended a State Advocacy Day where they learned from experts how state budgets affect health care programs, particularly Medicaid, which many people with epilepsy rely on for health care.

With state budget deficits being at record highs, epilepsy advocates need to know how to respond to reductions in Medicaid that could compromise the care of people with epilepsy. The State Advocacy Day provided tactics for responding to the Medicaid crisis and preserving the long-term value of the program which responds to the needs of so many individuals with epilepsy.

Throughout the three-day meeting, PPI attendees learned techniques for growing local grassroots efforts and effective advocacy tactics to employ on Capitol Hill. They learned about key government institutions that offer new hope: the epilepsy program at the national Centers for Disease Control and Prevention, the National Institutes of Health and the Health Resources and Services Administration and prepared to petition their congressional representatives to support a $5 million increase in funding for the CDC epilepsy program, bringing the support level to $12.5 million, and an increase in NIH funding, which, through the National Institute of Neurological Disorders and Stroke, would increase to $1.65 billion.

They also prepared to call for a $3 million investment to create demonstration projects through the HRSA.

Jane Sung, legislative assistant for the office of Rep. Steny Hoyer (D-Md.), shared her insight with the group about how attendees could maximize their meetings with their member of Congress.

Also speaking to PPI participants was Matthew Schneider, managing director of the law firm Garvey, Schubert & Barer's Washington, D.C., office and chair of the Foundation's Legal and Government Affairs Committee.

"Your presence is 80 percent of the effort," said Schneider, also a member of the Foundation's board of directors. "You're going up versus professional lobbyists, but your stories will set you apart."

Schneider, whose wife and son have epilepsy, told attendees to assume they'd have very little time to make their case to their representative or his or her staffer.

"You may meet with your member or you may meet with a staffer," he said. "Don't let that throw you. Whoever you meet is important and can make a difference."

Linda Warner, immediate past chair of the Epilepsy Foundation board of directors, was the session facilitator.

"Know your value to your legislator," she said. "You represent his or her state and district, and so does your story."

Long-time friend of the Epilepsy Foundation, Rep. Neil Abercrombie (D-Hawaii), described his personal experience with epilepsy, mirroring the feelings of many in the room and hailing the commitment evidenced by their presence.

"Once epilepsy is in the picture," he said, "it takes over. You become infinitely aware that you are not in control."

Abercrombie stressed the importance of increased funding for epilepsy research and programs, and the importance of telling their stories on the Hill.

"More important than ever is your three-dimensional participation in this effort," he said. "The average member of Congress is not aware of epilepsy beyond the anecdotal at best. Go fight for epilepsy's share of the legislative dollar."

Alexandra Finucane, vice president for Legal and Government Affairs for the Epilepsy Foundation, and Andrew Imparato, president and CEO of the American Association of People with Disabilities, updated Institute attendees on the current situation affecting the Americans with Disabilities Act update session.

Imparato said that many people are being left out of the intended protections of the ADA and are either not having their employment discrimination cases heard in court or are not experiencing favorable outcomes in court hearings.

"The Constitution is being interpreted in a way that compromises the interests of people with disabilities," he said.

He listed ways for the coalition of groups like the Epilepsy Foundation to restore the ADA, including building a strong grassroots movement, making ADA interpretation an election issue and making the ADA a judicial nomination issue.

"We need to create friction when employers discriminate," he said, "whether or not ADA protection prevails in court."

In 95 percent of current cases, the person with epilepsy is not considered disabled under the ADA and has experienced either being fired or not hired at all.

"We have to build congressional support for the fact that the ADA is not covering people with epilepsy," Finucane said.

The day concluded with a discussion and role-playing session led by Christopher Kush, M.P.P., president of Soapbox Consulting and an experienced lobbying trainer.

"What works?" Kush asked about recruiting grassroots volunteers. He noted that one of the major fears of a new recruit is how to interact one on one with representatives. "What if they pick up the phone?" is likely a fear a new advocate will have when calling his or her member of Congress. Kush offered valuable tips on attracting and preparing others to become active epilepsy advocates:

• Commit to building a network one person at a time;
• Personally ask people to join;
• Give a clear set of expectations;
• Encourage individual stories;
• Provide background information and education for new members; and
• Act as a reliable conduit between advocates and the national office.

After a morning prep and message review on the last day of the Institute, attendees were off to meet with their members of congress on Capitol Hill. Visits to senators and representatives were the culmination of hours of training and preparation and an important opportunity for participants to educate their legislators on the needs of people with epilepsy.

The Public Policy Institute was sponsored by the American Epilepsy Society and Pfizer Inc.