NDIA Accountability Project

This project is in DRAFT

Seizures (Epilepsy) Disability Snapshot

‹ PrevPage 1 of 14 · Source p. 285Next ›

Seizures (Epilepsy) Disability

Snapshot

SGP KP Publishing Exported on 2026-06-17

SGP KP Publishing - Seizures (Epilepsy) Disability Snapshot

Table of Contents

  • What is a seizure? Is it Epilepsy? … page number not provided in text but likely continues from previous section. –

Types of epileptic seizures … [page numbers]

Seizure triggers … [page numbers]

Stages of a seizure … [page numbers]

How are seizures managed? Can epilepsy be treated or cured? Language and terminology Enabling social and economic participation Families and carers What people who experience seizures want you to know How can I tailor a meeting to suit a participant who experiences seizures?

What can I do before the meeting?

What can I do during the meeting?

Helpful links Referencing

FOI 25/26-3216

SGP KP Publishing - Seizures (Epilepsy) Disability Snapshot

This Disability Snapshot Provides General Information About Seizures (Epilepsy)

Purpose And Distribution

The Disability Snapshot aims to provide an overview on epilepsy-related disabilities. The document specifically targets personnel from the National Disability Insurance Scheme’s Technical Advice & Practice Improvement Division but should not be distributed externally without permission.

#What\s (is\

End Stage

After the active part of a seizure. This marks the end-stage where effects from seizures are felt, called as ‘post-seizure’ lasting up-to several hours. Common symptoms:

  • Confusion;
  • Fatigue;
  • Headache;
  • Loss in bladder/bowel function;
  • Embarrassment;
  • Nausea;
  • Pain; And Weakness.

#How(s)are(seizures)managed?

An epilepsymanagementplaniscompletedbythepersonwithepilepsyand/ortheirdoctorandincludessubjectsoftheiarseizuretypes,seizureriggers,hownewwouldliketobesupportedduringseizuresandeveryproceduresthatshouldbefollowedduriagandaeseizure. Epilepsymanagemenplanshouldbeprovidedtocarers,supportproviders,educationanemploymentprovider,andreviewedeverymonthoreachmedicalreiewewithaneplpysspecialist(NDISQualitySafeguardsCommission,₹₹). Somepeoplelivingwithepilysrequireemergencyseizuemedicatstoporreduceactivityandpreventharmedeffects.Itisanimportantthaonoywhoaresponsibelforsadministeringemergencymediatinghastrainingsonethayfeelconfidentandcapableiftheneedaris.Othercommoneiplymangementstrategiesincludelifestyleandedietarychanges,seizuemonitorsoraeeizueralertdog.

#Can epilepsy be treated or cured?

There is no cure for epilepsy, but some childhood epilepsy syndromes are “outgrown”, and many persons become seizure-free through medication (Epilepsy Foundation, [year]).

Antiseize medicine serves as a primary therapy in treating epilepsy; approximately 70 percent who have been diagnosed exhibit controlled convulsions using these medicines.

Language and terminology

In all instances, use language which focuses on a person’s strengths and abilities.

| Fits, Attack or Turn | Seizures e.g The participant experienced seizure | Terms such fit attack are considered improper due their inaccuracies negative meaning E g word implies convulsive but not seizures are convulsions | |-|-| |The participant suffers epilepsy He victim Epilepsy seizures | Participant has diagnosis epilepsy he living epilepsy | Suffering victim imply someone unhappy victimised unwell People with epilepsy diagnoses able live fulfilling lives | |Epileptic when describing individual e Example: The participant an epileptic person | E G Person Living epilepsy participant Has epilepsy Diagnosis When describing people She experiences epilepti seizures | First language helps reduce stigma stereotypes recognises individuals experience outside of diagnosis disability However people living epilepsy may prefer identity-first language view epilepsy as important part Identity asking preference recommended | |Epilepsy sickness | Health condition medical condition neurological chronic condition Disability (where daily impacts cause significant decrease functional capacity for persons) | Non communicable condition is not sickness caught Everyone s experience vastly different both in presentation frequency other impacts from epilepsy diagnosis In some cases seizures associated can greatly affect ability do everyday activities creating disabling effect requiring specific supports. | |Anti-epileptic drugs Anticonvulsants Anti-seizure medication | Correct term describes medications help treat prevent seizures They don’t treatment epilepsy Also while people often associate seizures convalusions every involves convolutional seizure requires special support

FOI 25/26-3216

SGP KP Publishing - Seizures (Epilepsy) Disability Snapshot

Section: Enabling Social And Economic Participation

Safety is an important consideration for people experiencing seizures.

  • Epilepsy Management Plans (§EMP°)
  • Emergency Medication Management Plans «EMMP» These core tools must be available at education facilities, schools/workplaces, as well as formalized public spaces.(Source:§Epilepsy Australia,­ 2024). People with epilepsy can find employment through apprenticeships, traineeship programs or Australian Disability Enterprises(ADE). In some jobs there may exist a work health-and-safety requirement to inform employers about their condition; however certain professions do not allow individuals who have experienced epileptic fits such as pilots or commercial drivers. Individuals suffering from this medical issue might face societal stigma in both social and professional environments; stigma management strategies include educating communities on these conditions along with seeking out resources within community settings that provide support or self-management assistance.

Families and Carers

Families and caregivers offer varying degrees of assistance to individuals experiencing seizures, often actively participating in various types of support services. They typically possess comprehensive knowledge regarding necessary social integration activities that help participants achieve independence, such as joining local communities or engaging more independently within society; caregiving responsibilities associated with managing someone’s seizure disorder may significantly impact every caregiver differently; it is essential to communicate directly both between care recipients themselves alongwith their families concerning effects epilepsy has on each one’s life experiences.

#7 What people who experience seizures want you to know Not all seizures and no two people with epilepsy are the same - there is no one-size-fits-all treatment. Medication does not always work. About 1 in 3 people with epilepsy will not be able to get seizure control with medication. The terms ‘intractable, refractory or drug-resistant epilepsy’ may befused to describe apersons epilepsy whendoesntrespondtomedications(Epilepsy ActionAustralia, 2023).

Seizuresand/ormedicationcancausetfatigue,tirednessandanpain.Medicationforepilepsycan alsocauseothersideeffects,particularlyafterprolongeduse.

How can I tailor a meeting to suit a participant who experiences seizures?

What can I do before the meeting?

  • Ask if there are any accessibility requirements for the meeting.
  • Check if the meeting place meets the participant’s needs. For example, if the participant has known seizure triggers, ensure the meeting place is free of these.
  • Consider the time of day and duration of the meeting. Be familiar with the type of seizures the participant experiences and their individual needs where possible. Consider meeting duration noting fatigue may be experienced.
  • Provide as much information as possible about the purpose of the meeting ahead of time as they may need to discuss with their support person or gather information such as their most recent epilepsy management plan or refer to seizure logs.

FOI 25/26-3216

SGP KP Publishing - Seizures (Epilepsy) Disability Snapshot

  • Epilepsy Foundation
  • Epilepsy Action Australia

10 Referencing

Australian Institute of Health and Welfare, 2022, Epilepsy in Australia, Australian Institute of Health and Welfare, viewed 30 January 2025 Epilepsy in Australia, About - Australian Institute [Epilepsy Action Australia], What do you wish people knew about epilepsy?, Viewed February 3rd 2025 What Do You Wish People Knew About Epilepsy? - Epilepsy Action Australia [Epilspy Australia], Stay Informed About Epilepsy. [Epilepsy Foundation] (About Epilepsy | Epilepsy Foundation). [Epilepsy Foundation]. Psychogenic Non-Epileptic Seizures(PNES), Epilepsy Foundation.,Viewed March 20th 2025 Psychogenic Non epileptic seizures PNES | Epilepsy Foundation. NDIS Quality Safeguards Commission. Practice Elert Epilepsy management.Viewed Janurary 1st 2024 NDIS Quality And safeguards commission-Quality practice - Epilepsy Management NICE, 2022.Epilepsies in children young people and adults.Nice.viewed January 30 th ,Epilepsies Children Young People Adults [NICE], Transient loss of consciousness (‘blackouts’) over ‘in’ 16s NICE viewed on the same date.[Overview |Transient Loss Of Consciousness(‘Blackouts’) Over 16s| Guidance| Nice] Scottish Intercollegiate Guidelines Network(SIGN) . Epielsses In Children And Young People: Investigative Procedures And Managemen Edinburgh SIGN; (SIGN Publication No.) May 2021 Available From URL:[Http//WWW.SIGN.Ac.UK][Epilspy Foundation] Letter to The Honorable Bill Shorten not dated unpublished.