RUN Supports The Epilepsy Association of Utah (EAU): Student Advocacy Groups Oppose Utah Bill HB75
Please contact your legislators http://le.utah.gov/
FOR IMMEDIATE RELEASE
Student Advocacy Groups Oppose Utah Bill HB75
SALT LAKE CITY January 16, 2016 – Epilepsy Association of Utah, Hope 4 Children with Epilepsy, Utah Kids Foundation, Utah RARE, and Rare and Undiagnosed Network jointly announce our opposition to HB75 Epilepsy Training in Public Schools with its current language.
While we support the effort to address the critical issue of rescue medication in Utah schools, HB75 falls short in many areas. The bill does not truly address the ignoring of the doctor-guided and federally mandated 504 Health Care Plan, which ensures the ADA student’s right to an education in the least restrictive environment. Throughout the collaborative Individualized Education Plan (IEP) process, the 504 Health Care Plan is put in place with input from qualified school personnel, medical professionals and the student’s guardian.
HB75 would institute the Intranasal Midazolam Authorization Form. We believe this document may be considered contrary to the Federal Individuals with Disabilities Education Act (IDEA), as the Health Care Plan on record would effectively be ignored.
Only ONE rescue medication is included in HB75: Intranasal Midazolam. This medication is prescribed for about 49% of students with epilepsy, leaving the remaining 51% of the student population with seizures no recourse to receive their emergency medication. We believe this would be a discriminatory practice in that some children with epilepsy would be supplied emergency support and others would not.
We also believe this bill perpetuates the stigma that epilepsy rescue medications are unsafe, when in fact caregivers with little to no medical training routinely administer them. HB75 lowers the standard of care for students with epilepsy by neglecting the needs of the ADA student, and compromising their safety, while trivializing their right to an education.
Although HB75 DOES allow for the delegation of medication to trained personnel, which we applaud, the practical application falls short by limiting input from the parent or physician. As has been experienced with the 2006 S.B. 8 Care of Students with Diabetes in School, staffs routinely fail to implement the law, forcing students with diabetes into homeschool situations and emergency room visits.
HB75 goes against the very core of morality and common sense in servicing the student in an emergency situation.
Signed
Epilepsy Association Of Utah Hope 4 Children with Epilepsy Utah Kids Foundation
Board of Directors Co-Founders Board of Directors
Utah Rare Rare Undiagnosed Network
Executive Committee Advisory Board
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ABOUT THE EPILEPSY ASSOCIATION OF UTAH
Founded in 1973, The Epilepsy Association of Utah is a 501(c)(3) charity dedicated to enhancing the quality of life for all individuals living with Epilepsy and seizure disorders. 1 in 26 people will develop Epilepsy at some time in their lives leading to over 100,000 people in Utah alone. Epilepsy is the 4th most common neurological disorder in the US after migraine,stroke and Alzheimer’s. The Epilepsy Association of Utah offers a public education program, statewide support groups, personal and professional advocacy, college scholarships, art exhibits, educational conferences, summer camp and more. Visit http://epilepsyut.org for additional information.
ABOUT HOPE 4 CHILDREN WITH EPILEPSY
We are parents of children with severe forms of epilepsy. Most have multiple types of seizures every day, varying in intensity and length from seconds to hours. The seizures take a toll on the children’s over-all health, ability to function, and quality of life. These children also have 10 times increased risk for sudden death. We actively advocate for the medical needs of children and adults with epilepsy. Visit http://hope4childrenwithepilepsy.com.
ABOUT UTAH KIDS FOUNDATION
Utah Kids Foundation’s mission is to support all special needs families in Utah by sharing information about doctors and resources in our community, facilitate the legal exchange of spare supplies, and to provide comfort and support when our children are inpatient. Currently serving nearly 2,000 families, we are now adding advocacy and providing inclusion in community events. Visit http://utahkidsfoundation.com/ for more information.
ABOUT UTAH RARE
Utah Rare is a coalition of rare disease stakeholders formed to organize Utah’s recognition of Rare Disease Day. For more information, please visit http://utahrare.org.
ABOUT RARE UNDIAGNOSED NETWORK
RUN stands for Rare & Undiagnosed Network. We’re a group of advocates, patients, families, researchers, and healthcare providers who share the same mission and vision: to bring genome sequencing into clinical practice to help undiagnosed patients better understand these conditions – and to join together as we improve the lives for all those affected. Visit http://rareundiagnosed.org/ for more information.