Illinois
Illinois does something almost no other state does: it puts no number on how long you have to be seizure-free before you can drive.
The problem is that a rule with no number is a rule with no floor, and also no ceiling. What you get depends on your doctor's letter and the Secretary of State's Medical Advisory Board.
On schools, Illinois was ahead of almost everyone, then something changed.
Representation
Tammy Duckworth, U.S. Senator (R-IL) | (202) 224-2854
Richard Durbin, U.S. Senator (R-IL) | (202) 224-2152
Go Here To Find Your Congressional Representative
Driving Laws
Under 92 Ill. Admin. Code § 1030.10, an applicant with epilepsy will be granted a license if they submit a doctor's statement certifying that they can safely operate an automobile. There is no specific seizure-free period written into the rule.
The process runs through the Secretary of State's Medical Advisory Board. A Board member reviews and makes a recommendation; the recommendation goes to the Chairperson, who makes the final determination on suspension, revocation, or denial.
Each time you submit a medical report, you also sign a medical agreement: you agree to stay under your physician's care and follow treatment, and you authorize your physician to report any change in your condition that would impair your ability to drive safely.
Drivers in Illinois must report conditions that may cause unconsciousness or otherwise impair driving to the Secretary of State's office.
School Laws
The Seizure Smart School Act (HB 1475) passed in July 2019 and took effect in July 2020. It is codified at 105 ILCS 150. Illinois was one of the first four states in the country to pass this kind of law — alongside Kentucky, Indiana, and Texas — before the Epilepsy Foundation took the model nationally.
If your school isn't complying: put the request in writing, ask for a Seizure Action Plan on file, ask which staff have completed training, and get names and dates. If the district stalls, Section 504 and IDEA are federal and they're stronger than any state statute.
Support
Epilepsy Foundation of Greater Chicago, now operating as Epilepsy Chicago, serves 44 counties where roughly 140,000 people live with epilepsy. Their group schedule is genuinely extensive — multiple weekly adult groups, an 18-to-24 young adult group, a 55-and-older group, monthly evening and weekend options, plus mental health counseling, case management, Family Camp Retreat, Kids & Teens Club, and adult member outings. Spanish-language services and events are available.
Epilepsy Foundation of Greater Southern Illinois, founded in 1977, serves the lower 34 counties. Social support groups, intensive case management, an emergency seizure medication program, medical liaison and transportation services with area neurologists and epileptologists, residential services, and Camp Roehr.
Illinois Epilepsy Support and Resources covers Central and Northwest Illinois and is open to anyone of any age with epilepsy or a seizure disorder in its service area — peer support, caregiver support, benefits and insurance navigation, vocational support, and help accessing counseling.
Epilepsy Care
If your seizures aren't controlled after 12 months with a general neurologist — or after two medications have failed — national guidelines say you should be at a Level 3 or Level 4 center. Most people who meet that bar were never told it existed.
Check out the NAEC to find a Level 3 or4 Epilepsy Center near you.
Confirmed NAEC Level 4 centers include:
Northwestern Memorial Hospital, Chicago — Level 4
Rush University Medical Center, downtown Chicago — Level 4 adult. Rush was the first place in Illinois, and one of only a few in the country, to offer ketogenic diet therapy for adults with epilepsy, and runs a specialty pharmacy that handles all patients' anti-seizure medications in-house.
Additional Level 3 and Level 4 centers, including pediatric programs, operate in the Chicago area and downstate. If you're outside Chicagoland, check the directory before you assume you have to drive to the city.
Use the comments section to connect with others, add additional resources for Illinois, and/or review the resources listed above. This is your community!