Advocacy 

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!

ACTION ALERT

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.