2011 Government Affairs Statement
2011 GOVERNMENT AFFAIRS STATEMENT
Nearly three million children and adults in the United States have epilepsy. Epilepsy is defined as an enduring predisposition to seizures after having at least one seizure and can develop at any stage of life; children and the elderly are particularly affected. Epilepsy can result from a variety of causes including head trauma, brain tumor, stroke, infection, neurodegenerative disorders -- including Alzheimer’s disease, genetic predisposition, and poisoning. Often no cause is identified. The effects of epilepsy vary widely from individual to individual and often create medical, economic and social hardship. Epilepsy and seizures can affect anyone from any age, ethnic background, or gender -- everyone is at risk of developing seizures or epilepsy.
We, the members of the Epilepsy Foundation’s Board of Directors, the Professional Advisory Board, staff and network of affiliate organizations, are committed on behalf of people with epilepsy, their family members and caregivers to an effective advocacy program. Our goal is to ensure the coverage and access to essential services, the protection of the rights of individuals with disabilities, and the promotion of research into treatments, better understanding of causes, consequences, and outcomes, and ultimately, cures for all the epilepsies. Within these broad goals, we dedicate ourselves to a Government Advocacy Program that addresses the following legislative and regulatory issues.
Budget and Appropriations
- Advocate for federal funding for epilepsy research and public health education programs within the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA) -- including the implementation of government programs and activities to educate health care providers, caregivers, and community agencies about epilepsy and the creation of health care access systems to improve the diagnosis and treatment of the condition for families in medically underserved communities.
- Support increased funding levels for epilepsy research and programs at the National Institutes of Health (NIH), the Department of Defense (DoD), the Veterans Administration (VA), and the U. S. Department of Labor.
- Support increased funding for programs affectingpeople with epilepsy, including those authorized by the following laws: the Workforce Investment Act Amendments of 1998, the Social Security Act, the Rehabilitation Act Amendments of 1998, Individuals with Disabilities Education Act, the Developmental Disabilities Act; the Lifespan Respite Care Act, the Mental Health Parity Act, and the Children’s Health Act of 2000.
- Support increased funding for the Food and Drug Administration.
- Support sound fiscal policies for the nation that maintain critically needed benefits for people with disabilities and chronic health conditions.
- Support implementation of the ADA and the ADA Amendments Act of 2008.
- Promote civil rights laws that ensure protections for people with epilepsy including those contained in the Americans with Disabilities Act, the Family Medical Leave Act and the Rehabilitation Act of 1973.
- Support full implementation of federal hate crimes statute. Support inclusion of epilepsy education and training in federal justice department and law enforcement implementation of hate crimes and anti-bullying laws.
- Support anti-bullying legislation.
- Help ensure the full rights and accessibility of people with disabilities to voting, accessible voting places and machines, and address concerns surrounding photo ID requirements for those who do not have driver licenses.
- Support nominees to the federal courts who understand disability rights, and support legislation that improves the effectiveness of our Federal courts.
- Support legislation that opposes the use of restraints and seclusion for children in school. Work to inform teachers and first responders about the dangers of using restraints, seclusion, and other forms of abuse against people with epilepsy.
- Support efforts to educate first responders about seizures and epilepsy; support legislation directed at local, state and federal programs to protect individuals from unnecessary restraints or other measures that endanger an individual’s health or safety.
Disability/Social Security Benefits
- Promote Social Security policy that removes barriers to returning to work, improve the disability determination process and preserve entitlements and benefits.
- Support the recognition of epilepsy as a related consequence of service connected brain injury, and protect the access for veterans with military service connected epilepsy and seizures to disability benefits and services for their condition.
- Support the rights of children with epilepsy and seizures to full inclusion in all educational activities and programs whether or not they need such auxiliary services such as access to medication and treatment in order to safely participate in such educational activities.
- Support parents in their right to be members of their children’s IEP team.
- Support inclusion of epilepsy education in the United States Department of Education national teacher certification standards.
- Support legislation that opposes the use of restraints and seclusion in school settings.
- Support the reauthorization of the Workforce Investment Act and the Vocational Rehabilitation Act to ensure that the needs of people with epilepsy are being met. Include vendors with disabilities as a hiring preference within the federal government minority contractor preference program.
- Support employment policies that implement the goals of the ADA and the ADA Amendments Act.
- Promote the use of the federal government’s purchasing power to increase the employment of people with disabilities in the private sector; dramatically increase the number of people with disabilities employed by the federal government; and change federal policies that keep people with disabilities from full employment.
Epilepsy Medication and Treatment Issues
- Promote policies that protect access to all epilepsy medications and treatments. Support policies consistent with the Foundation’s policies on drug formularies and mandatory substitution laws.
- Support policies encouraging pediatric studies of new drugs and the inclusion of women in clinical trials.
- Encourage the federal agencies that oversee access to medication and treatment for epilepsy to research and analyze the issue of bioequivalence among different manufacturers’ versions of the same therapeutic product, and to ensure such medications are safely interchangeable for the individual with chronic seizures.
- Work with other national agencies and professional organizations providing psychiatric care to promote comprehensive care of patients with epilepsy and co-morbid psychiatric disorders.
- Support expanded epilepsy research efforts at the National Institutes of Health, National Institute of Neurological Disorders and Stroke and all agencies that may impact epilepsy, including the National Institute for Nursing Research, the National Institute of Child Health and Human Development, and the coordination of research findings and programs related to epilepsy and the brain within the NIH.
- Promote research on traumatic brain injury and epilepsy conducted through the VA Epilepsy Centers of Excellence.
- Expand epilepsy research in psychosocial, mental health, behavioral, cost of care, prevention, women's health, aging and other underserved populations.
- Support research within federal agencies such as DoD and the VA on epilepsy and seizures as a result of traumatic brain injury including the VA Epilepsy Centers of Excellence.
- Support government policies that ensure the adequate protection of people in clinical trials and work to require that all clinical trials be posted on www.clinicaltrials.gov, including those whose outcomes may be adverse. Promote open access to research information produced with funding from the federal government.
- Support affiliate efforts to change their state laws or regulations to more closely conform to the Foundation, the American Epilepsy Society and the American Academy of Neurology consensus model law.
- Advocate for improvements to the United States Department of Transportation regulations on commercial driving.
- The Foundation supports a universal health care system that ensures availability, portability, and access to appropriate and affordable health care for all children and adults with epilepsy, including easy access to specialty care and all available treatments.
- Promote and implement the new provisions contained in the Affordable Care Share information with Foundation affiliates and the broad network of people living with epilepsy about how the new provisions affect people with epilepsy.
- Ensure that people with epilepsy are protected by all state and federal laws designed to ensure nondiscriminatory access to insurance and health benefits.
- Oppose efforts to reform Medicaid that limit adequate coverage for patient services or restrict the scope of services.
- Support efforts to implement the CLASS program contained in the Affordable Care Act.
- Support efforts to create electronic medical information systems that protect the individual’s privacy, allow for individual access, and promote the portability of records and information.
- Advocate for improved patient care and treatment by increasing the number and availability of specialists in the field.
- Encourage government policies which strengthen the ability of voluntary, nonprofit organizations to provide essential services. This includes the continued preferential treatment for nonprofit postal rates; tax policies that encourage charitable giving; and fair policies overseeing lobbying activities. Support government policies that promote the transparency and accountability of voluntary organizations, without adding undue burdens to or violating individual constitutional rights.
- Oppose efforts to limit nonprofit advocacy.
Family and Community Support
- Support legislative and regulatory efforts to promote respite care programs, family support programs and caregivers programs
- Support legislation that increases wages and benefits for direct support professionals.
- Promote and encourage public awareness campaigns about epilepsy and seizures through federal and state agencies.
- Support laws, regulations and programs that promote use of helmets, sports safety equipment, seatbelts and speed limits to prevent head injury.
These activities define the current areas of interest of the Legal and Government Affairs Committee and the Government Affairs Department staff. Within these parameters, and subject to the restrictions and definitions of the Tax Reform Act of 1976, the Foundation will work to promote federal government activities beneficial to persons with epilepsy. As unanticipated issues arise which require prompt action by the Foundation, the Chair, President and Chief Executive Officer and Chair(s) of the Legal and Government Affairs Committee (in consultation with the Executive Committee when possible) will act in accordance with the established goals, objectives and policies of the Epilepsy Foundation. The Board of Directors shall be advised of such actions at the earliest possible time.