Epilepsy Foundation New England is committed to protecting the rights of people with epilepsy and ensuring that they have access to needed services. We do this by helping individuals and also by advocating with community leaders and policymakers.
Individual Advocacy – If you believe your rights have been violated or you have a conflict regarding employment, school, healthcare, public benefits, or any other area, we can help. Our staff will intervene to resolve conflicts when possible and refer you to legal resources when necessary.
Public Policy Advocacy – The Foundation advocates for public policies that positively impact the lives of people with epilepsy. We work collaboratively with legislators, government agencies and the Governor’s office to implement laws and policies that promote programs to benefit people with epilepsy, provide access to all needed treatment and care, and effectively eliminate discrimination. We empower citizens to become more involved in the legislative process through advocacy activities at the state and federal level.
Click on the above links to access additional information regarding advocacy services, advocacy training, how to get involved in advocacy work!
Dear Maine Epilepsy Advocate,
WE NEED YOUR HELP TO ASSURE STUDENTS WITH EPILEPSY GET NEEDED MEDICATIONS
Please contact members of Maine Committee on Education and Cultural Affairs and ask them to support Representative Justin Chenette’s(District 15) ( D-Saco) legislation LD 1491. The bill is scheduled for its first public hearing before the Education and Cultural Affairs Committee next Monday, January 11th, at 10:00 AM at the State House in Augusta.
The bill, titled "An Act To Allow Trained, Non-Medical Employees in Schools to Administer Emergency Medications", would permit trained, non-medical personnel to administer FDA approved seizure rescue medications and, in turn, ensure students access to the full range of school and related experiences.
If they don’t hear from us how important this bill is, chances are it won’t move forward.
The message is simple: PLEASE CALL OR E-MAIL THE COMMITTEE MEMBERS LISTED BELOW BEFORE NEXT MONDAY AND ASK THEM TO, “PLEASE SUPPORT LD 1491 An Act To Allow Trained, Nonmedical Employees in Schools To Administer Emergency Rescue Medications”.
Their contact information is: (It may be easiest and less time to cut and paste the message send one e-mail to the Chairs and cc the rest of the members. Sharing your personal story of epilepsy is always helpful too)
NAME Telephone e-mail address
Senator Brian Langley, Chair 207-667-0625 Brian.Langley@legislature.maine.gov
Senator Peter Edgecomb 207-496-3188 Peter.Edgecomb@legislature.maine.gov
Senator Rebecca Millett 207-415-3903 Rebecca.Millett@legislature.maine.gov
Representative Victoria Kornfield, Chair 207- 947-7224 Victoria.Kornfield@legislature.maine.gov
Representative Matthea Daughtry 207-370-9871 Mattie.Daughtry@legislature.maine.gov
Representative Richard Farnsworth 207-874-6399 Richard.Farnsworth@legislature.maine.gov
Representative Brian Hubbell 207- 288-3947 Brian.Hubbell@legislature.maine.gov
Representative Joyce Maker 207-454-2327 Joyce.Maker@legislature.maine.gov
Representative Michael McClellan 207-655-4438 Michael.McClellan@legislature.maine.gov
Representative Teresa Pierce 207- 415-8631 Teresa.Pierce@legislature.maine.gov
Representative Matthew Pouliot 207- 441-9418 Matthew.Pouliot@legislature.maine.gov
Representative Paul Stearns 207- 876-3242 Paul.Stearns@legislature.maine.gov
Representative Ryan Tipping-Spitz 207- 866-4333 Tipping-Spitz@legislature.maine.gov
BACKGROUND INFORMATION: In spite of advances in the diagnosis and treatment of epilepsy, some children with epilepsy are susceptible to prolonged seizures known as status epilepticus (SE) and require access to life-saving emergency medication such as Diastat® (diazepam rectal gel). Seizure emergencies can cause death and disability. These seizures can have devastating consequences for children, including brain injury and death. The Epilepsy Foundation New England is aware of many instances of children in Maine schools being denied access to physician prescribed life saving medications that is used to stop their prolonged seizures.
We feel such legislation is necessary to assure children access to their medication as well as to clarify what appears to oftentimes be inaccurate, confusing and/or contradictory interpretation of current laws and regulations pertaining to delegation of medication administration in Maine schools.
Appropriate emergency intervention is extremely time-sensitive, as current medical definitions consider 10 minutes as the amount of time after which uninterrupted seizure activity would be considered status epilepticus. Utilizing 911 is not an adequate response as there is no guarantee that an ambulance will arrive within the necessary time frame to limit negative health outcomes and Diastat is not usually stocked in ambulances. Currently, if calling 911 is the response, separate, and individual, arrangements would have to be made with local EMS providers on a case by case basis for a child to receive diastat.
Diastat is a safe rescue medication for SE: The standard out-of-hospital medication treatment of prolonged seizures is Diastat AcuDial, a rectally administered, pre-dosed preparation of diazepam gel. This medication is FDA-approved and was designed to be administered by people without medical training, such as parents, teachers and other caregivers. Diastat® is a safe and effective treatment, even when administered by individuals without medical knowledge.