Cuts in epilepsy programs would be 'stab in the heart,' clients say

Wednesday, July 21, 2010

Tears well up in Michelle Lefrere’s eyes as she talks about all the people she worries will go without services if Springfield’s 32-year-old Epilepsy Resource Center closes as planned in late July, the victim of state budget cuts.

“It’s just a stab in the heart,” said Lefrere, 40, a Jerome resident who works full time as a corporate office administrator and was one of the center’s first clients when she was diagnosed with epilepsy at age 9.

She called on Gov. Pat Quinn to “do the right thing” and “get this changed.

“Otherwise, it will be like turning back the clock to 1977, when they didn’t have anything in Springfield for people with epilepsy,” Lefrere said.

The Epilepsy Resource Center, part of Sparc, 232 Bruns Lane, stands to lose all of its state funding — $110,000 a year — in Quinn’s preliminary fiscal 2011 budget plan.

Advocates say a scheduled $1 million cut in state funds for epilepsy programs statewide would cripple those programs’ counseling, medical and educational services, leading to more deaths, unemployment, emergency room visits and squandered lives.

Patients would have few other options, advocates said.

“In a state budget of $60 billion-plus, to not find $1 million for epilepsy is a crime,” said Phil Gattone, executive director of the Epilepsy Foundation of Greater Chicago. “We are literally changing lives every day. Zeroing us out will be devastating. That’s cutting bone.”

Cuts not yet final

More than 130,000 people in Illinois have epilepsy, a medical condition that can cause a variety of seizures. It is the most common neurological condition in children and the third most common in adults, after Alzheimer disease and stroke.

The $1 million in state funds goes to not-for-profit groups in Springfield, Chicago, Belleville and Rockford that annually reach more than 2,600 people statewide with case-management and case-coordination services and 18,500 people through school and community education programs.

The $1 million cut is part of $28 million in reductions to a variety of programs — not just epilepsy — that are being considered by the Illinois Department of Human Services. The cuts would affect services for which the state doesn’t receive at least some federal matching funds through Medicaid, DHS spokesman Tom Green said.

The $28 million in Human Services cuts, including the $1 million for epilepsy programs, are not yet final, but decisions by the Quinn administration on final funding levels are expected by about Aug. 1, Green said.

Quinn recently announced $1.4 billion in budget reductions and is considering $900 million more.

Gattone’s organization receives $450,000 — almost half of its budget — from the state each year. He said he plans to lay off about a dozen of his 17 employees if the cut remains in place.

The state money doesn’t pay for doctors, but his group operates medical clinics in the Chicago area to provide medical services for people with epilepsy regardless of their ability to pay.

The clinics, which help patients control their seizures, would be eliminated by the cut, and numerous support groups no longer would meet, Gattone said.

200-plus served locally

In Springfield, two employees of the Epilepsy Resource Center, including director Linda LoBue, would lose their jobs. Almost all of the center’s functions would cease except for federally funded job-placement services, which are provided by two Sparc employees who also serve adults dealing with other disabilities.

The center, which can be reached at (800) 800-6401, closed for seven weeks last year until state funding was restored, LoBue said.

“I don’t know if we have that much hope now,” she said.

The center opened in 1978 has received state funding since 1980. More than 200 people from a 35-county area in central Illinois are served each year — 40 percent of them new each year.

Some attend support groups. Some receive advice on how to find the best medical care if they live in an area without doctors specializing in epilepsy.

Workers from the center advocate for children to receive the right special-education services and educate teachers about epilepsy.

“Epilepsy can impact a lot of parts of people’s lives,” LoBue said. “They’re often told by people what they can’t do.”

Center is ‘all we have’

Bridgette Baker, 41, a Springfield resident and the mother of an 11-year-old boy who was diagnosed with epilepsy a year ago, said the center has provided “a wealth of information.”

Baker said she met parents of other children with epilepsy through the resource center, and a center employee is scheduled to provide education about epilepsy to her son’s new middle school teachers in August.

Baker now worries that the training session for Mathew Baker’s teachers won’t take place.

“Families need to know there is someone there to help them,” Baker said. “Epilepsy is a disability like anything else. The resource center is all we have.”

Lefrere’s epilepsy isn’t controlled to the point that she can drive, but she said the center’s support groups and other encouragement from the staff helped her graduate from Lincoln Land Community College in 1992 with an associate’s degree in micro data processing.

When she was first diagnosed, the center helped her parents find a better specialist who adjusted the anti-seizure medicine she was taking. Now she is a volunteer organizer of the center’s annual awareness-raising walk, which is scheduled for Oct. 9 in Springfield’s Washington Park.

The walk won’t take place if the budget cut stands.

Lefrere, who also runs a pet-sitting business out of her home, said she has called Quinn’s office asking that the cut be rescinded.

“There’s still a window of opportunity,” she said.
“If I wouldn’t have had the resource center when I was young, I wouldn’t have turned out as well-adjusted as I am now,” Lefrere said.


*Epilepsy is a disorder of the brain that can cause seizures and affects one in every 100 American children.

*An estimated 130,000 or more Illinoisans have epilepsy, including 14,000 in the 35-county region served by Springfield’s Epilepsy Resource Center. The region includes Springfield, Decatur, Champaign-Urbana and Bloomington-Normal.

*A 2000 report estimated epilepsy costs the U.S. more than $16.6 billion a year in health care costs and unemployment.

*Almost 3 million people in the United States have some form of epilepsy. Thirty percent are younger than 18.

*In 70 percent of epilepsy cases, there is no known cause. In the remaining 30 percent, the causes include brain tumors or stroke, head trauma, lead poisoning, substance abuse, infections and maternal injuries.

Source: The Epilepsy Foundation