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Hints and Tips for NDIS planning regarding epilepsy

Leonie Hogarth's picture
Wed, 2018-08-08 08:35 -- Leonie Hogarth
With many regions now live with the NDIS, and many others becoming live from July 2018, now is the perfect time to consider the information below as part of your pre-planning.  
At a minimum, we recommend that all people with epilepsy have the following items within their plan.  A suitably qualified and experienced team member from Epilepsy Queensland can provide these services: 
Capacity Building:  Improved Daily Living (Therapy Supports)
  • Epilepsy Needs Assessment  - Assessment of the person’s unique epilepsy related needs, particularly where the epilepsy is complex or unclear. This includes assessing the person’s ability to self-manage at home or in the community and identify safety and risk management support needs – such as monitoring equipment etc.;  (~4 hrs – depending on the complexity + travel) 
An outcome of the Epilepsy Assessment above, may be recommendations for the purchase of specific aids or equipment.  As some providers for this equipment may not be registered with the National Disability Insurance Agency (NDIA), you may need to consider this section of your plan being Self-managed or Plan Managed. For more information on this, please refer to or contact Leonie Hogarth at Epilepsy Queensland who can explain this further.  
  • Developing an Epilepsy Management Plan, +/- Midazolam Plan – documenting an individualized epilepsy management plan in an easy to understand format, that provides information on the type of seizures, how the seizures present, triggers for the seizures, and specific first aid and emergency management;  (~3hrs – depending on complexity and availability of information + travel) 
  • Training for families/carers and support staff – this is essential for the persons support team - this provides necessary information for families, carers and support staff in relation to identifying and responding to the persons needs and the safe administration of prescribed medications (~2x sessions per year – to manage staff turn over, at 2.5hrs p/session)
A few other tips that I have come across, that may be relevant to your pre-planning: 
  1. If your loved one would identify from any low-risk, low-cost assistive devices, such as modified utensils, non-slip mats, external continence aids (one off/short term supply of washable briefs; pads; bedding protectors etc.) - then these should be identified, and trigger the funding allocation for this in the plan - I think it is about $1500 now
  2. Some families choose to self-manage some parts of their plan – as it gives greater flexibility as to which providers you use, as they do not need to be registered with the NDIA.  A common area that people self-manage is the transport funding (if eligible) and the consumables – which incorporates incontinence aids – as it may be easier to purchase items when they are on sale at the local shops than through a service provider. 
We have a range of other factsheets and pre-planning workbooks, so if you would like additional information or support with your pre-planning, or any other stage of your NDIS journey – please do not hesitate to contact us on 07 3435 5000, we are here to help.