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07 3435 5000  or

1300 852 853 (Regional Qld)

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Information for Service Providers and LAC’s

Are you supporting someone with Epilepsy to prepare for the NDIS? 
Some people with epilepsy have told us that they do not identify as having a disability, and therefore, believe they are not eligible for supports under the National Disability Insurance Scheme (NDIS). 
 
You may be eligible for the NDIS if you meet the eligibility requirements available on the NDIA website.  You need to evidence the impact that epilepsy has on your/your loved ones life.  
 
There are many sources of support that a person with epilepsy may access – including, support from family and friends, mainstream services – such as through the health and education system, and now, another option is support from the NDIS.   
 
Accessing the NDIS
To access support through the NDIS, a person with epilepsy will need to be eligible as assessed against the NDIS Access Checklist and subsequently complete the Access Request Form. 
 
All potential NDIS participants are required to complete Part A: General Information for the person accessing the NDIS and Part B:  Diagnosis of Conditions.    
 
Whilst many people recognize that epilepsy can have a profound impact on an individual’s ability to function on a daily basis and actively engage in community and mainstream services, it is not currently recognized as a condition that allows for a streamlined process when entering the scheme. Therefore, potential NDIS participants will be required to complete Part C, providing evidence of the impact of the condition.
 
The required documentation and evidence requirements for Part B and Part C can be found on the NDIA website at: https://www.ndis.gov.au/people-with-disability/access-requirements/compl....  
 
Preparing for the NDIS Planning Meeting 
Your role in supporting a person  prepare for their NDIS Planning Meeting, is vital in ensuring that the person can clearly articulate their support needs, including, their needs in relation to epilepsy. 
 
Below, is a list of the types of supports and services that people with epilepsy should be seeking in their NDIS plan.  
 
Epilepsy Queensland consider these supports to be “reasonable and necessary” to people who have epilepsy and require support across various areas of their life to enhance their independence and be active, and contributing members of their community.    
 
Epilepsy Related Needs Example of Goal Suggested areas where this may fit into the NDIS Plan?
Development of an Epilepsy Management Plan

Improve safety which will  enable me to access a range of supports and services and therefore enhance my health and wellbeing.  

Capacity Building 
Improved Daily Living
Development of the Epilepsy Emergency Management Plan. 

 

This is only relevant to people who require the Emergency Administration of Midazolam 

Improve safety which will  enable me to access a range of supports and services and therefore enhance my health and wellbeing.  
Capacity Building 
Improved Daily Living
Aids and equipment designed to keep people with epilepsy safe and develop their independence – e.g. protective headgear, monitoring equipment, cooling devices, seizure dogs, seizure mats, falls detection devices, medication dispensing aids  To have suitable equipment and aids that assist me to live safely and enhance my independence and inclusion 
Capacity Building 
Improved Daily Living
Aids for everyday living – this may be in relation to mobility, personal care or continence – e.g. wheelie walker, shower chair, handrails   To have suitable equipment and aids that assist me to live safely, enhance my independence and engage in social and mainstream activities of my choice 
Capacity Building Supports
Improved Daily Living 
 
Core Supports 
Continence
Assistance with daily life (supports) 
 
House modifications to improve safety and enhance independence e.g. air conditioning (some people’s seizures are triggered by heat), shatter proof glass, outward opening doors, doors unlocked from the outside etc.  My home environment is safe and enables me to be independent / enhance independence 
Capital Supports 
Home modifications
 
Access social groups and activities, which incorporates sharing lived experiences with people with epilepsy  
Meet new people by accessing social groups in the community, with the potential to engage with other people with epilepsy 
 
A person’s goal may also extend to be an active participant in a social group, such as host, organizer etc.  
Capacity Building
Increased Social and Community (Skill development) 
 
Core Supports 
Assistance with Social and Community Participation 
 
Therapy supports to  increase independence and facilitate functional improvement through adjustment, adaption and building capacity to participate in the broader community 
 
To access therapies to support global developmental delays and help manage behaviours
To increase independence and inclusion by engaging with a variety of therapies, 
This may be in relation to: 
- Memory 
- Cognitive impairment 
- Managing stress/anxiety 
- Movement 
- Communication 
- Developmental delay 
- Behavior support and management 
- Confidence 
Capacity Building 
Improved Daily Living 
e.g. Therapy Services from an OT, Speech therapist, Psychologist etc. 
 
Capacity Building 
Improved Relationships 
e.g. Behaviour Support including social skills development, managing emotions etc.  
 
Training for family, carers or other people supporting the individual  To improve the knowledge, skills and confidence of people providing informal and formal supports to me in order to understand the type of epilepsy that I have, my triggers, what it looks like before, during and after my seizures, and how to keep me safe. 
Capacity Building 
Improved Daily Living 
Support to maintain the capacity of family/carers to provide informal supports.  
This was previously referred to as respite.   
To increase my confidence and independence by attending various social activities (day and overnight) without my parents and learning to adjust to different social settings
Core Supports 
Assistance with Daily Living 
 
Short term Accommodation and Assistance 
NDIS Price Guide – Vic, NSW, Qld, Tas – valid 

Whilst the above goals relate specifically to the supports required to manage the person’s epilepsy and enhance their quality of life, below are a list of other suggested goals,that relate more holistically to the person’s life.   

 
As a general guide, we suggest you support the person to think broadly about their life and about their goals, incorporating: 
 
• Health and wellbeing 
• Identity and values, 
• Doing things and going places that the person enjoys, including transport considerations, 
• Trying new things,  
• Meeting new people and making new friends, 
• Having a valued status in the community – e.g. work, volunteer, study, friendships, connections with others 
• Developing and maintaining independence and safety 
• Use of assistive technology that will enhance independence, safety and lifestyle 
 
This is not an exhaustive list, however, provides some examples to think about, as they relate to the person you are supporting to develop their NDIS plan.  
 
Examples relevant to children: 
• To attend school/social/sporting activities independently  
• To attend sleep overs with friends and family 
• To sleep independently and safely 
• To play safely in the playground with other kids
• To try a new hobby  
 
Examples relevant to adults: 
• To maintain my home and garden
• To find and maintain a job or volunteer work
• To move out of home, or to live independently
• To access social opportunities or try a new hobby
• To develop my skills in managing my lifestyle e.g. completing various forms, organizing appointments /events etc. 
• To learn how to manage my own finances
• To learn how to manage my NDIS funding and supports
 
Epilepsy Queensland is committed to supporting people as they transition to the NDIS.  If you have any questions in relation to eligibility, epilepsy related needs or services, please do not hesitate to contact us at: ndis@epilepsyqueensland.com.au or 07 3435 5000 or 1300 852 853 if outside Brisbane.