Jeanne A. Carpenter Epilepsy Legal Defense Fund: Advocacy for Children with Epilepsy

1. Jeanne A. Carpenter Epilepsy Legal Defense Fund: Advocacy for Children with Epilepsy

2. Fund Mission & Operations • Mission of Jeanne A. Carpenter Epilepsy Legal Defense Fund: Protect the civil rights of people with epilepsy by promoting education, advocacy and access to legal services – and working to change laws and policies that are discriminatory: • Provides consumers legal guidance (about 125 requests/monthly), but not legal representation • Provides referrals to network of cooperating attorneys – who have agreed to provide up to three hours of free legal help

3. Mission Continued • Supports attorneys to promote good case outcomes – for instance, we provide research help, referrals to experts, medical information, and in cases of major significance, we file friend of the court briefs • Maintains a clearinghouse of information related to the rights of people with epilepsy and tracks progress of cases nationwide • Supports affiliate advocacy efforts with their clients • See www.epilepsylegal.org for details on LDF

4. Requesting Legal Help • Families may seek legal guidance and/or attorney referrals through: • www.epilepsylegal.org (legal info/attorney referrals) • 1-800-332-1000

5. Priority Issues • Employment discrimination – e.g., police and firefighters disqualified because of seizures • Improper use of force by police/criminal prosecution • Administration of medication and provision of other accommodations in school and child care

6. Educational Rights -- IDEA • Individuals with Disabilities Education Act (IDEA) mandates free appropriate public education for kids with disabilities • Students with epilepsy having trouble making educational progress are entitled to special education– specially designed instruction to meet child’s unique needs • Frequent seizures or medication side effects may cause regression, difficulty with concentration or cognitive issues • Individualized education plan: sets out specifically designed instruction and measurable goals with related services (counseling, health, etc.) • School must assess functional, academic and developmental issues • Parents may request second evaluation at school’s expense

7. Education Rights – Section 504 • Student whose epilepsy does not interfere with learning is entitled to accommodations under Section 504 of the Rehabilitation Act • Should establish “504 Plan” -- outlines services that are needed to allow student to benefit, for instance: • Medication administration/trained staff • Include seizure action plan • Supervision of student • Dietary restrictions • Modified schedule, extra time for work/exams • Rest period post-seizure • Communication log – home and school • Education of peers about seizures • See Foundation’s Education Manual for model Section 504 plan and seizure action plan

8. Access to Emergency Medication • Section 504 and IDEA require health services • Major issue re DiastatAcuDial (brand name) – rectally administered valium • FDA approved for use – by caregivers without medical training – for cluster seizures and prolonged seizures, which may cause brain damage/death • State restrictions on which school staff (RN/unlicensed staff) may administer varies • Other prescribed medications include nasally administered midazolam(Versed) – prescribed off label (may be more effective/better tolerated than Diastat) • Schools must ensure it is given, whether by RN or other staff; cannot rely on 911 • Parents should provide the school with an emergency seizure treatment plan (see education manual for model)

9. Child Care • Programs are covered by the Americans with Disabilities Act or Section 504 (parochial providers only covered if getting federal funds) • May not exclude child with epilepsy based on condition alone or assumptions about care • Programs much modify rules – such as a restrictive medication administration policy – to afford children with epilepsy (and other disabilities) an equal opportunity to participate

10. Child Care Continued • Must provide services comparable to those provided other kids – e.g., • First aid for seizures • Allow rest after seizure • Special diet • Medication (e.g., Diastat and other emergency meds)

11. Defense Fund Accomplishments • Access to emergency medication in child care and school • Model policy developed with largest U.S. child care provider – Knowledge Universe (operates KinderCare and Knowledge Beginnings, etc.) • Litigation settlement with second largest child care provider – Learning Care Group (operates Tutor Time, La Petit Academy, etc.). Foundation was a plaintiff in case • Dept of Justice recently filed case against IL recreational program for adults and children with disabilities; the Defense Fund is working with Department on other cases • Assisted in drafting of state laws that ensure access to emergency medication in schools

12. Resources • www.epilepsylegal.org– see Legal Info Center: • Manual on Legal Rights in School and Child Care • Education and Day Care Advocating for Your Child (brochure – can be ordered from on-line store at www.epilepsyfoundation.org) • Fact sheets • Department of Justice Guidance on Child Care and the ADA -- http://www.ada.gov/childq%26a.htm