Whilst the NDIS is client focused, it is recognized that family and carers play a vital role in providing informal supports to people living with epilepsy and other disabilities. These supports often fill the gaps where formal services and or paid workers cannot provide. Therefore, where possible and with the participants’ permission (if the participant is an adult), family and carers should be included in the planning process. Their input is vital for helping the person accessing the NDIS to make decisions, set goals and comprehensively consider and participate in assessment of needs and future planning.
For many people transitioning to or entering the NDIS, the issue of supports for family and/or carers can be particularly confusing. Whilst the plan is focused on meeting the individual participants’ goals and support needs, these supports may directly or indirectly benefit family and/or carers.
• personal care to support an individual in their home or the community
• supports to assist people with disability to enjoy social and community interaction without relying solely on you
• assistance with tasks of daily living, including help to improve a person’s ability to do things
• supported employment services and help for people to move to work programs that prepare people with disability for work
• training related to the caring role that may enhance your ability to provide care.
Epilepsy specific examples of formal support that also support family or carers may include things like:
• A support worker to accompany the person with epilepsy on public transport, to appointments etc. to improve confidence and encourage independence
• Epilepsy specific training for family and carers to assist with responding to seizures
• Support or counselling for family members impacted by the unpredictability of seizures and their associated support needs
• Behavioural management training to assist with behavioural disturbance related to, or following seizures.
As with all aspects of NDIS, pre-planning is essential and this also applies to carers and/or family considerations. Prior to starting the planning process with NDIS, carers and/or family must take the time to consider what role they currently play and what they will do into the future. As an informal part of the planning process, the NDIA (National Disability Insurance Agency) may talk to family and/or carers to gain further information. Carers and family members may choose to write a Carer Statement to be considered by the NDIA at this time.
How to prepare a Carer Statement?
A Carers Statement should outline:
• The support currently provided by you
• How these supports impact on you and or your family
• What your support capabilities are currently and into the future
• Other responsibilities or life plans (job, other siblings etc.)
• And any other information that may be important for the planner to know.
Some example Carer statements can be found here:
To assist, a Carer Checklist has been developed and can be used to prompt you to consider all aspects of your caring role and ultimately help you to determine the most important information to include in your carer statement. This can be found here:
For those who live with or care for someone with epilepsy, there may be many day-to-day support needs. However, the episodic nature of seizures also means that some days these needs are greatly increased. Therefore, it is important to outline what a typical “good day” would look like, as well the acute impact that seizures have on family or carers.
For more information, contact:
Ph: (07) 3435 5000 or 1300 852 853 (outside Brisbane)
Or visit the Epilepsy Queensland Facebook page