Remembering Senator Edward M. Kennedy

Former congressman and board chair of the Epilepsy Foundation, Tony Coelho, and Sandy Finucane, vice president of legal and government affairs, spoke to Kimberli Meadows for epilepsyUSA about the passing of Senator Kennedy and the legacy he leaves behing, especially for people with disabilities.

epilepsyUSA: What was Senator Kennedy’s contribution to our mission?

Tony Coelho: Senator Kennedy led the way—broke the waves— in making sure that all people were treated equally, especially those of us with disabilities. He had examples of people with disabilities in his family. His sister, obviously, but also with his children. His son had cancer and lost a leg; his daughter had cancer of the lungs; his youngest son struggled with a drug addiction problem. He understood what it’s like to live with a disability. He sponsored, pushed and made laws that made people with disabilities part of everyday life. If it weren’t for Senator Kennedy, we would never have had the Americans with Disabilities Act. He was the bridge between the Democrats and the Republicans in the Senate. He played a critical role for us and that’s something that we’ll always be grateful to him for.

epilepsyUSA: For young people with epilepsy who may be entering the work force and who really don’t know what Kennedy’s contribution has been, what would you say to them?

Tony Coelho: Senator Kennedy is the one who paved the way for everyone with disabilities, which includes those of us with epilepsy. He was a trailblazer for 30 years in all of the things that are so important to us regarding our equal rights. That includes health, housing, voting—everything that we do. He was so engaged in making sure that we shared the parts of life that everybody else shares.

epilepsyUSA: What does it mean, now that he’s gone, for health-care reform as it pertains to people with disabilities?

Tony Coelho: It’s been sad to watch in the last year, since his diagnosis with brain cancer, that he hasn’t been able to play as much of a role and, as a result of that, the legislation has suffered. He was the one that could have brought the Democrats and the Republicans together in the Senate, where the real problem is. His absence has been a real loss. The question is, now that he is gone, will some of those folks in the Senate want to do something in his memory to bring about something in health-care reform. When you don’t have the bridge, the glue, the individual who can get people to put aside partisanship and sit down and just talk about what is it that we’re trying to do; it makes it very difficult to accomplish things. Nobody can fill that void in the immediate future.

epilepsyUSA: What influence did Senator Kennedy have on the lives of people with disabilities?

Sandy Finucane: Senator Kennedy was an enormous figure in promoting the rights of people with disabilities, including the rights of people with epilepsy. He was remarkable for his work on insurance and health care coverage, which are very important issues that people with disabilities and family members of people with epilepsy face. For example, he was critical in getting the Americans with Disabilities Act passed in 1990. We also have to remember that Senator Kennedy was instrumental in passing the Family Medical Leave Act, which provided unpaid leave for people with severe disabilities and for family members to take care of a child with a disability.

He was part of the Civil Rights Restoration Act, which made sure that if you received federal funds in any way, the federal laws that protected your rights still governed you. Senator Kennedy was the leader on COBRA (Consolidated Omnibus Budget Reconciliation Act), the provision of the law that gives you the right to continue your health insurance by paying for it personally after you leave a place of employment. More recently, he worked on HIPAA, the Health Insurance Portability and Accountability Act, which ensures a person with a preexisting condition who meets the preexisting condition limitations in insurance, can continue their insurance if they go to a new provider. The list of all the areas in which he really promoted the health care interests of all Americans goes on and on, particularly for people with disabilities.

epilepsyUSA: What impact do you think his absence will have on health care reform as it pertains to people with disabilities?

Sandy Finucane: I hope that his legacy lives on and that people remember his refusal to give up. Obviously without his strength, finding a consensus and moving forward will be harder. However, I hope his legacy will spur other people in Congress and in the administration to continue to try and work towards what I think was his ultimate goal for the last 20 years, which is health insurance for all.

epilepsyUSA: What would you say to a young person with epilepsy who doesn’t know Senator Kennedy and what he’s done for our mission?

Sandy Finucane: Without Senator Kennedy, you would not have the protections of the ADA that you have today. You would not have as much health insurance protection as you have today, and you would not have family medical leave. All those things particularly affect people with epilepsy and the Epilepsy Foundation worked hard and advocated hard to pass those laws to promote the rights and interests of people with epilepsy. Without his leadership and his and his support, those things simply would not have happened.