The National Disability Insurance Scheme (NDIS) provides support and funding for Australians who have a permanent and significant disability or developmental delay. The NDIS looks beyond immediate needs and focus on what is required across a person’s lifetime.
The National Disability Insurance Agency (NDIA) is responsible for administering the NDIS.
The NDIS has three main focus areas:
- Permanent and significant disability: A permanent disability means your disability is likely to be lifelong. A considerable disability substantially impacts your ability to complete everyday activities.
- Support and services: Assistance or products that help a person in their daily life to participate in the community and reach their goals.
- Early intervention: Providing support to a person, either a child or an adult, as early as possible to reduce the impact of a disability or developmental delay and to build their skills and independence.
What does the NDIS fund?
The NDIS provides ongoing funding for all reasonable and necessary disability equipment, care, and support services. The NDIS sets out guidelines to assist in determining what can be funded.
Reasonable and necessary supports are different for each person, but they must:
- Be related to the person’s disability
- Represent value for money
- Not include day-to-day living costs that are not associated with a person’s disability support needs
- Be likely to be beneficial and effective for the person
- Considers informal support given to the person by family, carers, and the community
Funded NDIS services for epilepsy
Epilepsy support that the NDIS may fund includes:
- Assistance to link to mainstream support to enable a person with epilepsy the ability to complete an Epilepsy Management Plan (EMP) or Emergency Medication Management Plan (EMMP).
- Support worker seizure monitoring (or by a nurse in some circumstances).
- Support worker training to implement an EMP, EMMP, and ketogenic diet plan.
- Support worker to implement a ketogenic diet plan (food shopping or meal preparation).
- Assistive technology for seizure monitoring (for example, wearable seizure devices, bed night-time sensors, video-based sleep activity monitors, and personal alarms).
NDIS eligibility and epilepsy
The NDIS can provide people with disability with information and connections to services in their communities, such as doctors, sporting clubs, support groups, libraries, and schools. Some people living with epilepsy may be eligible to receive NDIS support, either because of the impact of their epilepsy alone or because they also live with another disability.
People living with epilepsy may be eligible for NDIS if they:
- Are under 65 years of age
- Live in Australia and have Australian citizenship, a permanent visa or a protected special category visa (SCV)
- Need support with a permanent and significant disability
- Use special equipment because of a permanent and significant disability
- Need some help immediately to reduce future needs
Check the NDIS website to determine whether you meet the eligibility requirements by going through the NDIS checklist.
Applying for the NDIS
If you think that you might be eligible and would like to apply: you can either:
- Call the National Disability Insurance Agency (NDIA) on 1800 800 110 and ask to make a verbal request.
- Complete and submit the Access Request Form and send it by email: NAT@ndis.gov.au. If you need help applying, contact your Local Area Coordination (LAC) or National Disability Insurance Agency (NDIA) office.
If you have a child under 7, an early childhood partner can provide advice on access to support and apply for the NDIS.
As part of the application process, you will be asked:
- To confirm your identity and authority to act on someone’s behalf
- Questions to see if you meet the NDIS access requirements: age, residence, and disability.
- Questions about providing consent to enter the NDIS and seeking information from third parties.
Completing a Carer’s Statement when applying for NDIS is extremely important. A Carer Statement should be part of your NDIS application process. It will help the NDIS understand the carer’s role in supporting the person with epilepsy.
The are no specific NDIS guidelines on how to write a Carer Statement. Some important information you may want to include is:
- How does their epilepsy impact their daily life
- The goals of the person with epilepsy
- What kind of support does the carer assist with
- Other types of support family and friends provide
- The needs a person with epilepsy is currently seeking
- Any additional helpful information the NDIS requires to assess eligibility
Planning for NDIS
Understand your epilepsy needs
Before meeting with your NDIA Planner or LAC, it is a good idea to start thinking about your or your child’s needs, goals, and aspirations. This is a chance to discuss how living with epilepsy and other disabilities affects your day-to-day living. Consider the impact on family, living arrangements, social activities, studies, work, and well-being.
Ring the National Epilepsy Support Service and discuss the following steps and the support to consider for you or your child’s plan.
Meet with an NDIS planner
Discuss the goals/activities/tasks you want to pursue during the planning meeting with your NDIA planner or LAC.
Approving your plan and managing your support
The NDIA planner or LAC will talk to you about how long it will take to approve your NDIS plan. The NDIA must approve your NDIS plan initially. Once approved, your early NDIA planner or LAC will give it to you in person or mail a paper copy to your preferred address.
It is now up to you to choose what supports and services you need to pursue your goals, who provides them, and when and where they are delivered. When you have an approved NDIS plan, you need to understand the different budgets, who can help you start using your plan, and how your plan is managed. You can learn more about your NDIS plan by visiting the NDIS website.
To access more information about the NDIS decision appeal, click here.
Review your NDIS plan
Your NDIS plan is usually valid for 12 months, with a start and end date. Usually, an NDIA planner or LAC will contact you six weeks before the plan ends to discuss a review. If you are still waiting to hear from the NDIS, you can also phone 1800 800 110.
Your plan review is an opportunity to reflect on your last 12 months and what you have achieved. You can also request a review within 12 months if there have been significant changes in your circumstances.
Epilepsy Foundation and NDIS services
The Epilepsy Foundation is a registered NDIS provider delivering services for people with epilepsy. Suppose you are already receiving support through the Epilepsy Foundation. In that case, ensuring these are included in your NDIS plan is a good idea.
Alternatively, if you are in the beginning stages and planning for the NDIS, consider including Epilepsy Foundation services and support as part of your NDIS Plan. Depending on your circumstances, we may be unable to provide you with services for free. Still, if it’s included in your NDIS Plan, this will cover the cost of support and services we provide.
The National Epilepsy Support Service (NESS) is available Mon-Sat 9:00 am – 7:00 am (AEST) to provide support and information across Australia. Phone: 1300 761 487. Email: firstname.lastname@example.org
The information provided on this page is for information purposes only. Visit the NDIS website for more details.
NDIA Community Engagement and Communications, Aaron Byrne prepared and presented the following webinar.