Q: I’ve heard many people with epilepsy have been rejected for support for the NDIS. Can you tell us more about this and how EQI can help?
EQI have had a number of contacts from people who have been deemed ineligible for the NDIS. Some of the reasons given are - that there was insufficient information provided, or the evidence did not state that the condition was life long, or the information provided mostly focused on confirming a diagnosis, rather than focusing on the functional impact of the condition.
The Access Request Form needs to be completed to access the scheme if you have not been receiving supports previously funded by the State or Commonwealth service.
Epilepsy is already considered a grey area under the NDIS, as the NDIA has clearly stated that the responsibilities of the mainstream services, such as health, education etc. need to remain the responsibility of these sectors, and that the NDIS cannot pick up any short falls, as this will risk the sustainability of the scheme.
Health practitioners must complete the form aligned to the functional impact that epilepsy (and any other disabilities) have on the person’s life, and not purely a confirmation of medical diagnosis. As per the Access Request Form, this is in the areas of mobility, self-care, self-management, learning, social interaction and communication.
To assist health practitioners to complete this form, Epilepsy Queensland have developed a document that is based on the Access Request Form, which includes prompts under each of these core areas. If you would like a copy of this, please do not hesitate to contact us. Another option is to spend time writing out the functional impact in each of these areas and having a health professional to review and sign off.
Q: Are people with epilepsy eligible for the NDIS.
Epilepsy is a very complex condition. With over 40 seizure types and 100 syndromes associated with it, the impact of the seizures and other effects can be varied and highly individualised. Epilepsy on its own is not an automatic condition under the NDIS.
Therefore, the Access Request Form and other evidence submitted, needs to provide as much information and evidence as possible about the functional impact of epilepsy on the person’s life. This may be from a range of sources, such as Neurologists, Paediatricians, Occupational Therapists, Speech Therapists, other allied health services, teachers etc.
Another consideration is if the person seeking access has another disability/condition that may be eligible under the scheme. There is a list of eligible conditions on the NDIS website. If this is the case, we suggest using this as the primary disability on the access request forms, with epilepsy as the secondary disability.
Q: Is epilepsy a disability?
EQI have engaged with many of our members on this topic, and understand that this is a very personal consideration. One of the features of whether a person considers epilepsy as a disability is the impact that the seizures have on the person’s life – this may also include the frequency, duration and severity. Some people with epilepsy consider it be a medical condition that requires treatment, and not disability at all.
From an NDIS perspective, it is acknowledged that epilepsy is a health condition, as people usually see the Neurologist and other health practitioners, have medications etc. These are the health sector responsibilities and will not be funded under the NDIS.
However, depending on the functional impact of the epilepsy, as well as a need to meet the other NDIS Access criteria, epilepsy is also a Neurological disorder. This terminology is used in various NDIS access documents.
Q: What do I need to do/provide to give me the best chance of getting NDIS support?
If you or your loved one was previously receiving State based or Commonwealth funded supports, it is likely that your information will be transferred from this department to the NDIA. Although the NDIA have been working to ensure this information is correct, in our experiences some of the information transferred is out of date. You may wish to phone the NDIA to clarify what information they have to ensure this is correct.
If you are seeking to access the NDIS and have not had funded supports in the past, the focus is on ensuring that you meet the eligibility criteria and that you seek comprehensive reports that refer to the functional impact of epilepsy (and any other disabilities). As noted above, EQI have comprehensive and easy to use documents that can help with this process.
Q: What NDIS supports do EQI provide?
EQI are committed to supporting people through all stages of their NDIS process. This includes resources and information in relation to the access and eligibility process; reviewing and providing comments on any documents prior to submission; pre-planning support, particularly in relation to wording of goals and considering what supports are needed; as well as epilepsy assessments – that is, identifying and recommending various epilepsy related assistive technologies designed to keep the person safe and enhance independence, such as monitoring equipment, anti-suffocation pillows etc.; staff training on Understanding Epilepsy and Administration of Midazolam and developing/updating epilepsy management plans.
Q: What sort of support should someone with epilepsy be seeking?
At a minimum, we recommend that people with epilepsy should be seeking three types of support, these are all covered under Improved Daily Living (within the NDIS plan),
- Epilepsy assessment to identify various assistive technologies to promote safety and independence, such as monitoring equipment, anti-suffocation pillows, adaptive equipment etc.
- Training for families/carers on Understanding Epilepsy and the Administration of Midazolam, and
- Updating/developing an epilepsy management plan.
However, the NDIS also enables greater opportunities for supports and services aligned to the persons identified goals, than has been the case in previous years. We encourage people to start to think big – what are the supports that you/your loved ones need to have a good life? This may include, assistance to meet new people, assistance to get out of the home, social activities/camps, help around the home, going back to study, finding a job etc.
Q: I’ve heard that the NDIS does not provide supports for carers, is this true?
The focus of the NDIS is on the person with the disability. However, a key focus of the NDIS is to maintain and strengthen informal (carers) support. The thinking is that if the person requiring support is now receiving support to meet their needs, there will be less of a demand on the carer, which may allow the carer to return to the workforce, enhance their social and wellbeing needs etc.
Supports that may provide (indirect) support for carers include:
- In-home or community support for the person requiring it
- Training for the carer on how to provide safe and effective supports aligned to disability
- Access to short-term accommodation (previously ‘respite’) for the person requiring support. This can be delivered flexibly, such as support in the home, support outside the home, camps etc. The focus of this is to develop life skills, including being away from home, engage in social and recreational activities etc.
Q: I’ve been rejected by the NDIS, what do I need to do now and how can EQI help?
If you have been rejected by the NDIS, please contact us, so we can talk you through your options. To consider the best next step, it is important to understand on what grounds the application was rejected, for example, not enough information, not stating that the condition is permanent etc. This information will be on the letter you received from the NDIA, or you may need to contact them for further clarity. From here, a more targeted response can be developed.
EQI have assisted many people through the appeals process.
Q: What else is EQI doing to educate the NDIS assessor and advocate for people with epilepsy?
Not only is EQI working hard to support people applying for the NDIS, EQI have and continue to proactively engage with the NDIA. This has been in relation to providing training to various NDIS staff on Understanding Epilepsy; liaising with NDIA about specific people and circumstances; providing the NDIA with comprehensive information about epilepsy and the NDIS. EQI are also heavily involved in various networks and meetings to promote and advocate for people with epilepsy.
We would love to hear about your experiences, whether they are positive or negative, as this is invaluable learning and no doubt will assist other people through their NDIS journey.
Q: What if I am not eligible for the NDIS, how can I get help?
If you are not eligible for the NDIS, but still require support, there are various other support services that may be accessed, such as the Aged Care Service, taxi subsidy cards, companion cards, Home and Community Services, just to name a few.
Please feel free to contact us on 1300 852 853 or firstname.lastname@example.org if you would like information on anything you have read here, or would like to chat about your NDIS journey - we are here to help.