PROJECT #3
The Epilepsy Independence Act
A Statewide Framework for Measuring and Advancing Independence Among New Yorkers Living with Epilepsy
OVERVIEW
Epilepsy is commonly understood through the lens of seizures, diagnosis, and medical treatment. Yet for many individuals, the consequences of epilepsy extend far beyond the management of seizures. The condition can affect whether a person can drive, maintain employment, attend school, travel independently, access healthcare, or participate fully in everyday life.
These effects are often highly individual. Two people with the same diagnosis and similar seizure histories may have very different abilities to work, travel, live independently, or participate in their communities.
The Epilepsy Independence Act would seek to address this gap by establishing a statewide framework to better understand, measure, and ultimately reduce the functional limitations associated with epilepsy.
PROBLEM
Existing approaches to epilepsy often focus on clinical measures such as seizure frequency, treatment, and medication. While these measures are essential, they do not necessarily describe what an individual is actually capable of doing in daily life.
A person may have relatively infrequent seizures yet be unable to drive and therefore face significant employment and transportation limitations. Another individual may experience more frequent seizures but retain the ability to work, attend school, and live independently.
This creates an important policy question:
How can we accurately measure the extent to which epilepsy limits an individual's ability to live independently and participate in society?
New York currently lacks a comprehensive statewide framework designed to answer that question.
PROPOSAL
The Epilepsy Independence Act would establish a statewide initiative to study the practical effects of epilepsy and develop a standardized method of measuring functional independence.
The initiative would bring together individuals living with epilepsy, healthcare professionals, researchers, economists, transportation and employment experts, and relevant state agencies.
Its work would examine areas including:
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Transportation and mobility
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Employment and workforce participation
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Education
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Healthcare access
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Financial impact
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Housing and independent living
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Social and community participation
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Ability to perform everyday activities independently
The initiative would ultimately seek to develop an Epilepsy Independence Index: a standardized metric that measures the degree to which epilepsy affects an individual's functional independence.
THE EPILEPSY INDEPENDENCE INDEX
The central objective of the Act would be to develop a metric that measures disability based on functional capacity rather than diagnosis alone.
Rather than asking only: "Does this person have epilepsy?"
or:
"How frequently does this person have seizures?"
The Index would seek to answer:
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"What is this person actually able to do independently?"
The Index could provide a standardized assessment of the practical limitations experienced by an individual while recognizing that epilepsy affects people differently.
Over time, such a measure could allow healthcare professionals, researchers, policymakers, and individuals with epilepsy to better quantify the condition's real-world impact.
GOAL
The ultimate goal of the Epilepsy Independence Act is to establish a reliable, evidence-based framework through which New York can:
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Measure the functional impact of epilepsy;
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Identify the barriers preventing individuals from living independently and participating fully in society;
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Develop policies capable of reducing those barriers; and
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Measure whether those policies actually improve independence.
The initiative would shift part of the public-policy conversation surrounding epilepsy from simply asking how seizures are treated to also asking how people living with epilepsy can maintain the greatest possible degree of independence.
A POTENTIAL MODEL FOR NEW YORK
New York has an opportunity to become a national leader in understanding epilepsy as not only a medical condition, but also a condition with significant implications for independence, workforce participation, transportation, education, and economic security.
The Epilepsy Independence Act would provide the foundation for that effort by creating a common framework for understanding the problem before prescribing a single solution.
The objective is ultimately simple: to accurately measure what epilepsy prevents people from doing, identify why those limitations exist, and develop policies that allow people living with epilepsy to do more of what they otherwise would be able to do.