Understanding Epilepsy: Facts, History, and Support

Epilepsy is a brain condition that causes people to have seizures. There are many different types of seizures, and each person’s experience with epilepsy can be different. Today, doctors have better ways to treat epilepsy, and there are more resources to help families. Even though some people still don’t understand epilepsy, support and awareness are growing.

A Brief Overview

  • Epilepsy is a brain condition that affects people in different ways and can cause different types of seizures.
  • People with epilepsy may also have other health conditions, like Autism, depression, ADHD, learning disabilities, or migraines.
  • In the past, people with epilepsy were often kept away from others because of fear and misunderstanding.
  • New medicines like Phenobarbital and Dilantin have helped many people control their seizures and live more normal lives.
  • Parents and caregivers help children with epilepsy, get the help they need at school and with doctors.
  • Special epilepsy centers give full care, including tests, support, and sometimes surgery.

Introduction

Epilepsy is a brain condition that causes people to have seizures. There are many different types of seizures, and each person’s experience with epilepsy can be different. Today, doctors have better ways to treat epilepsy, and there are more resources to help families. Even though some people still don’t understand epilepsy, support and awareness are growing.

Understanding Epilepsy

Epilepsy is a neurological disease and a spectrum disorder.  A person diagnosed with epilepsy is at a higher risk of having a seizure. A seizure occurs when there is a sudden, temporary burst of electrical activity in the brain that changes or disrupts the messages to the brain cells. The electrical bursts result in involuntary changes in body movement or function, sensation, behavior, and possible loss of consciousness/awareness of surroundings.

As technology has become more advanced, the medical community has discovered that there are many distinct types of epilepsy and different causes. Each person diagnosed with epilepsy has a unique experience. Epilepsy includes many types of seizures, grouped into three main categories based on where abnormal electrical activity occurs in the brain. The most common seizures are:

  • Tonic-clonic seizure: A tonic-clonic seizure causes loss of consciousness and violent muscle contractions.
  • Absence seizure: An absence seizure causes brief losses of consciousness and looks like a person is staring into space.
  • Focal aware seizure: During a focal aware seizure, the person is alert and aware that the seizure is occurring. The person may feel tingling sensations or have body movements that they cannot control. Previously called, simple partial seizure.
  • Tonic seizure: In a tonic seizure the muscles contract making the arms and legs very rigid. The seizures usually occur at night when the person is sleeping.
  • Myoclonic seizure: A myoclonic seizure is a brief shock-like jerk of a muscle or muscle group. The person may not even realize it has occurred.
  • Atonic seizure: Atonic seizures cause the muscles to go limp. Sometimes the person’s eyes may droop, and their heads will nod forward. If a person is standing up, and all their muscles go limp, they will fall.

In addition to the variations in seizures, epilepsy has other common health conditions linked to the diagnosis of epilepsy. Young children diagnosed with epilepsy are now automatically evaluated for autism, as research has shown a connection between the two conditions. Depression is the most common co-occurring health condition with epilepsy. Other health conditions commonly linked to epilepsy include ADHD, Learning Challenges, Anxiety, Mood Disorders and Migraines.

A Look Back: The History of Epilepsy Treatment in the U.S.

In the 1940s, people with epilepsy were often treated very differently than they are today. At that time, people with epilepsy were called “victims.” Back then, many families kept their loved ones with epilepsy at home and away from others because they were afraid of how people would react to seizures.

Doctors sometimes sent people with epilepsy to live in special communities, often on farms. These places were made to be safe and self-sufficient. People grew their own food, and workers helped with cooking and cleaning to prevent injuries during seizures. But these communities also kept people with epilepsy separated from the rest of society.

Things started to change when new anticonvulsant medicines, like Phenobarbital and Dilantin, were discovered. These drugs helped many people control their seizures and return to living at home. Both drugs are still in use today. Even with treatment, it was still hard for people with epilepsy to find jobs because of fear and misunderstanding.

By the 1960s, most of the special communities had closed. While treatment improved, people with epilepsy still faced stigma. Today, there is more awareness and support, but work continues to make sure everyone with epilepsy is treated fairly.

Advocacy in Action – From National Organizations to Parent -Led movements

Many years ago, several epilepsy organizations across the United States recognized the need to work together to better support individuals living with epilepsy. Groups like the National Association to Control Epilepsy, American Epilepsy League, and the National Epilepsy League each had their own ideas about how to organize and share responsibilities. It took more than 20 years of discussion and collaboration before they successfully united to form a single national organization: the Epilepsy Foundation.

Today, the Epilepsy Foundation plays a leading role in supporting people with epilepsy and their families. It offers reliable information about epilepsy and seizures, connects families to local support groups and resources, and advocates for better care and services. The Foundation also funds research to improve treatments and works closely with local chapters to ensure families can access help in their own communities.

In its early years, the Foundation was led mostly by medical researchers focused on developing treatments. Over time, it expanded to include the voices of families, caregivers, and community advocates. This broader involvement helped shape the Foundation’s mission and made it more responsive to the needs of those it serves.

In 1998, Susan Axelrod and a small group of parents started CURE Epilepsy to support research aimed at finding a cure for epilepsy, motivated by their experiences with treatment-resistant seizures in their children. CURE stands for Citizens United for Research in Epilepsy, and it is the only nonprofit organization solely dedicated to funding research to find a cure by supporting innovative science that targets the root causes of epilepsy.

Educational Advocacy for Children with Epilepsy

Parents and family caregivers of children with epilepsy often play a key role in ensuring their child receives the support they need at school. Because epilepsy can affect learning, attention, memory, and behavior, especially when seizures are frequent or medications cause side effects, educational advocacy is essential.

Working with schools to develop individualized plans that support their child’s learning and safety, families may advocate for:

  • Section 504 Plans: These provide accommodation such as extra time on tests, rest breaks, or permission to carry and take medication at school.
  • Individualized Education Programs (IEPs): For students whose epilepsy significantly impacts learning, an IEP outlines specialized instruction and services tailored to their needs.
  • Medical Action Plans: Parents collaborate with school staff to create emergency plans that explain how to recognize and respond to their child’s seizures.

Modern Treatments and Family Support

Today, children with epilepsy can get care at special medical centers called pediatric epilepsy centers. These centers focus on both the child and their family. They are designed to help children who still have seizures after trying two different medicines for at least three months.

Some of the services these centers may offer include:

  • A place to stay for longer testing and care
  • Support from social workers for both the child and family
  • Help from other doctors and therapists who work with the child
  • Neurosurgery, if it might help reduce or stop seizures

In Washington State, some examples of these centers are:

Families can also get help outside of the hospital. For example, PAVE provides information, resources, and parents for parents and individuals with disabilities in Washington State. If your infant or toddler has just been diagnosed with epilepsy, they may be eligible for early intervention services. PAVE provides an article, Early Intervention: How to Access Services for Children Birth to 3 in Washington, to support families in understanding the steps to get started, what services are available, and how to advocate for their child’s needs. Students and their families can contact PAVE for personalized support and training with IEPs, 504 plans, and medical action plans by completing the online help request form.

Parents can also join online support groups specifically for parents of children with epilepsy, or be matched with another parent who has been through a similar experience through the Parent-to-Parent program. If you are a family living in Pierce County, PAVE offers family support activities, information, and referrals through the Pierce Parent to Parent Program.

Final Thoughts

Understanding and awareness of epilepsy has come a long way over the years. Thanks to better medicine, more knowledge, and strong support from families and organizations, people with epilepsy can live full and active lives. There are still some challenges, like helping others understand what epilepsy is and making sure everyone gets the care they need. But with continued support and awareness, the future looks brighter for people living with epilepsy.

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Disability History Month Provides Opportunities for Reflection

A Brief Overview

  • Disability History and Awareness Month (RCW 28A.230.158) takes place during October to increase awareness, respect, and acceptance for people with disabilities, and to bring a greater sense of pride to people with disabilities.
  • State law requires public schools to promote educational activities that provide instruction, awareness, and understanding of disability history and people with disabilities.
  • The Office of Superintendent of Public Instruction (OSPI) provides a list of resources and educational opportunities for recognizing and celebrating Disability History and Awareness.
  • The Office of the Educational Ombuds (OEO), in collaboration with Rooted in Rights, created a teaching resource: One Out of Five: Disability History and Pride Project.
  • This article highlights some key laws and legal actions that have impacted school access for students with disabilities in Washington State and nationally. Scroll down for a visual version of our timeline.

Full Article

Disability History and Awareness Month in October provides an opportunity for policy makers, teachers, families and people throughout communities to reflect on the disability rights movement. Equity and access are protected by law, yet there is still work to be done to ensure that laws are upheld and that everyone has fair access to opportunities.

Parent Centers like PAVE participate in making sure that families and individuals understand disability rights and how history has impacted current protections and the language of disability rights. Following is a timeline of key actions at the state and federal level.

Please note that this article is an overview and does not include every law or legal action involved in the long and complicated history of disability rights.

1954​: Brown versus Topeka Board of Education​

  • Separate but Equal was outlawed, and Equal Educational Opportunities became a right of all citizens. ​

1964​: Civil Rights Act​

  • Prohibited state and local governments from denying access to public facilities, establishing equality as a legal right and discrimination as illegal.  
  • Desegregated public schools and authorized the U.S. Attorney General to file lawsuits for suspected violations. ​
  • Established that agencies could lose federal funding for breaking the law.

1971: Washington guarantees special education rights

In 1971, the small but fierce Education for All Committee — Evelyn Chapman, Katie Dolan, Janet Taggart, Cecile Lindquist — worked with two law students to craft and advocate for passage of legislation (House Bill 90) to mandate public education for all children with disabilities age 3–21. HB 90 became Chapter 66 of the Laws of 1971, entitled Educational Opportunities for Handicapped Children, generally referred to as the Education for All Act. Washington’s special education law is now codified at RCW 28A.155

1972: Key precedents are established in other states

  1. P.A.R.C. v. Commonwealth of Pennsylvania*
    • Established Free Public Education for all students.
  2. Mills versus Board of Education of DC
    • Established accessible, free and suitable education for all children of school age, regardless of disability or impairment

In Pennsylvania parents led a class action suit that established that all children, regardless of their skill level, have a right to go to school for free. A few months later, a Washington, DC, court ruled that education should be free and accessible and “suitable.” These two cases set up the country to formalize the right of any student with a disability to a Free Appropriate Public Education (FAPE), which is the language of today’s law.

*Note: PAVE recognizes that past terms have led to stigma; using person-first language is our priority. To learn more about how individuals with intellectual disabilities earned education rights through these landmark cases, refer to Disability Justice.

1973: The Rehabilitation Act

The rights of a person with a disability to get the help they need in order to be successful in school and at work–and to access to any public place or program–was firmly established by the federal Rehabilitation Act of 1973, which is still an active law upheld by the Office for Civil Rights. Part of it, Section 504, defines disability as any impairment that significantly impacts a major life activity. When a student in school meets that criteria because of a physical or mental condition, the school is bound by this law to provide what a student needs to access their right to a Free Appropriate Public Education (FAPE).

1975: The Education for All Handicapped Children Act

  • Required public schools to provide equal access to free educational programming
  • Provided for evaluation, a specific educational plan and parent input
  • Declared that special education should emulate as closely as possible the educational experiences of non-disabled students
  • Contained a provision for education in the Least Restrictive Environment (LRE)
  • Provided dispute resolution procedures

The Act was the first federal law that was specific to the education of children with disabilities. The law used the word “emulate” to indicate that students with disabilities had the right to a school experience that would look as much like a typical student’s program as possible. The additional requirement for education in the Least Restrictive Environment (LRE) further motivated schools to work harder to include students of many abilities in general education classrooms. This 1975 law also set up specific guidance for parents to take action if they disagree with the school. Parents are informed about their rights through the Procedural Safeguards that are provided at IEP and other official meetings.

1979: PAVE began as one of the country’s first six parent centers

Pierce County was among six locations across the country to receive training in Special Education rights. Thirty Washington parents got trained about Special Education law in 1979. The goal was for those parents to share information throughout the state. To help this movement, a clearinghouse named Closer Look provided intense training for these pioneering parents about the laws. Closer Look evolved in the National Information Center for Children and Youth with Disabilities (NICHCY), and much of that work has been updated and preserved by the Center for Parent Information and Resources (CPIR), the current technical assistance center for PAVE and other parent centers across the country. CPIR provides free information to professionals and parents through ParentCenterHub.org.

1981: Federal waiver program enables more children to get help at home

The federal government created a system through Medicaid to provide a new way to care for children and adults with disabilities in their homes. The new system provided a financial mechanism called a “waiver” to pay for in-home care. Once the first state Medicaid agency applied for and received a waiver from the federal government, other states began to apply. As a result, thousands of children who in the past might have lived in hospitals or state institutions now live at home. PAVE’s Family to Family Health Information Center is part of a nationwide Family Voices community that helps families understand and apply for these waivers and manage other aspects of care for their loved ones with disabilities and complex medical needs.

1988: Washington State recognizes the capacity of all persons

The Washington legislature passed RCW 71A.10.015 to recognize “the capacity of all persons, including those with developmental disabilities, to be personally and socially productive.

“The legislature further recognizes the state’s obligation to provide aid to persons with developmental disabilities through a uniform, coordinated system of services to enable them to achieve a greater measure of independence and fulfillment and to enjoy all rights and privileges under the Constitution and laws of the United States and the state of Washington.”

1990: Americans with Disabilities Act (ADA)

  • Prohibits disability discrimination by federal and state government, including schools
  • Applies to all schools, workplaces—any space, public or private, that provides goods or services to the public
  • Covers people of all ages, including those who are discriminated against because they are perceived to have a disability, even if they don’t have one

Understood.org provides materials specifically designed for parents to provide basic understanding about ADA protections in schools. Included are printable fact sheets and instructions for filing formal complaints with various public agencies. Many ADA protections mirror those provided through Section 504 of the Rehabilitation Act of 1973. Key concepts in both are equity and access. The ADA and Section 504 protect a person throughout the lifespan. The Office for Civil Rights provides guidance for students with disabilities as they plan for higher education.

1990: Individuals with Disabilities Education Act (IDEA)

  • All children with disabilities get a Free Appropriate Public Education (FAPE)to be ready for further education, jobs and life! 
  • The rights of children with disabilities and their parents are protected. 
  • The law requires schools to assess a child’s program, to make sure it’s working, and the child is benefiting. 

When Congress passed the Individuals with Disabilities Act in 1990, the acronym FAPE (Free Appropriate Public Education) came into being. Now FAPE is key to this entitlement law. Entitlement means that a child with unique needs gets those needs served on an individual basis, not based on a system or program that’s already built and available.

The federal law drives how states design their own special education policies and procedures, which in our state are part of the Washington Administrative Codes (WACs). Title 34, Part 104, is the non-discrimination federal statute under the Office for Civil Rights Department of Education, and in Washington State rules for the provision of special education are in chapter 392-172A of the WAC. 

1992: Rehabilitation Act Amendments

Amendments to the 1973 Act put the abilities and choices of persons with a disability first and challenge the services system and the greater community to support individuals to work, live, and participate in the community. The Amendments are guided by the presumption of ability. A person with a disability, regardless of the severity of the disability, can achieve employment and other rehabilitation goals, if the appropriate services and supports are made available. The primary responsibilities of the vocational rehabilitation system are described:

  • Assist the individual with a disability to make informed choices about potential employment outcomes that result in integration and inclusion in the community.
  • Develop an individualized rehabilitation program with the full participation of the person with a disability.
  • Match the needs and interests reflected in the individualized programs with appropriate services and supports.
  • Proactively foster cooperative working relationships with other agencies and programs, including local education authorities, to unify the service system.
  • Emphasize the quality of services and the accountability that service representatives have to honor the dignity. participation, and growth of persons with disabilities as their employment interests develop over time.

2000: Settlegoode v. Portland Public Schools

  • Appropriate staff training is an important aspect of FAPE.
  • School staff have the right to advocate for children without retaliation.
  • The lawsuit was filed by a former special education PE teacher who was fired after highlighting errors in IEP implementation.

2004: IDEA Amendments

IDEA was amended by the Individuals with Disabilities Education Improvement Act of 2004. Several provisions aligned IDEA with the 2001 No Child Left Behind Act. Here are a few examples of updates:

  • IDEIA authorized 15 states to implement 3-year IEPs on a trial basis when parents continually agree. 
  • Drawing on the report of the President’s Commission on Excellence in Special Education, the law revised the requirements for evaluating children with learning disabilities.
  • More concrete provisions relating to discipline of special education students were added. These are influencing current work to revise disciplinary standards in Washington State.
  • Students are entitled to education in regular classrooms, with needed supplementary aides and services, “to the maximum extent appropriate” under the principle of Least Restrictive Environment (LRE)

2008: Washington schools are required to celebrate disability history each October

In passing a law to establish Disability History and Awareness Month (RCW 28A.230.158), the legislature determined that: “annually recognizing disability history throughout our entire public educational system, from kindergarten through grade twelve and at our colleges and universities, during the month of October will help to increase awareness and understanding of the contributions that people with disabilities in our state, nation, and the world have made to our society. The legislature further finds that recognizing disability history will increase respect and promote acceptance and inclusion of people with disabilities. The legislature further finds that recognizing disability history will inspire students with disabilities to feel a greater sense of pride, reduce harassment and bullying, and help keep students with disabilities in school.”

2012 Employment First in Washington State

The Washington legislature passed Senate Bill 6384 for Employment First requirements for clients 21 and older within the Developmental Disabilities Administration (DDA). In accordance with the new law, “The program should emphasize support for the clients so that they are able to participate in activities that integrate them into their community and support independent living and skills.”

The legislation:

  • Supports employment as the first choice for adults of working age
  • Incorporates the right to transition to a community access program after nine months in an employment service
  • Clarifies that a client receive only one service option at a time (employment or community access).

A DDA Policy Document describes history that led to passage of the legislation and rules for implementation.

2013: Doug C. v Hawaii

  • Parents must be included in the IEP process.
  • The lawsuit was filed in behalf of a parent who was not included in a school meeting at which key IEP decisions were made.

2015: Every Student Succeeds Act (ESSA)

  • Reauthorizes 50-year-old Elementary and Secondary Education Act (ESEA), the nation’s national education law.
  • Provides all children in the United States the right to a free public education “to ensure that every child achieves.”
  • Advances equity by upholding critical protections for America’s disadvantaged and high-need students.
  • Requires—for the first time—that all students in America be taught to high academic standards that will prepare them to succeed in college and careers.
  • Ensures that vital information is provided to educators, families, students, and communities through annual statewide assessments that measure student progress toward high standards.
  • Encourages evidence-based interventions.
  • Sustains and expands access to high-quality preschool.
  • Maintains accountability in low-performing schools, where groups of students are not making progress and where graduation rates are low.

2017: Endrew F versus Douglas County School District

  • The Supreme Court issued a unanimous decision that under the IDEA a school must offer an IEP reasonably calculated to enable a child to make progress, in light of the child’s circumstances of disability.
  • The “de minimis standard” is overruled; trivial progress isn’t enough.
  • Grade-level standards are prioritized.
  • Parent participation is emphasized

The Endrew F case is still being discussed by a variety of agencies, and many professionals from groups that oversee educational process are calling on parents to hold schools accountable to these new standards. Writing for the court, Chief Justice John G. Roberts said that trivial progress would no longer meet the standard of FAPE and that the IDEA aims for grade level advancement for children with disabilities who can be educated in the regular classroom. A child making trivial progress, he said, would be tantamount to “sitting idly … awaiting the time when they were old enough to drop out.”

The above information is shown below as an infographic. You can click on the image and access the PDF of the same:

Infographic of the Disability Rights Timeline. Visit wapave.org and type disability History on the search bar to read the article and receive accessible information included  in this infographic

View this infographic in PDF form