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I’m a carer and I need a break…


The right wording

Ensure respite support is built into the first NDIS plan. If respite was in place before the NDIS, it is important to document who was providing respite, for how long, and the reason it was needed. This will ensure respite continues.

Most people know the word ‘respite’. In the NDIS world, using other words like ‘short term accommodation and assistance’, ‘assist with self-care overnight’ and assistance in living arrangements, will make the request more specific.

It’s all about evidence

You can ask your NDIS support coordinator to attend the planning meeting. it is most important to have evidence why you are requiring respite. this can come from an occupational therapist, GP, specialist etc. Also, attaching a personal statement from you will assist. The 2018 NDIS price guide states that participants can receive 24-hour care for up to 14 days at a time. the key for respite is the supporting evidence from the doctor; does it fit with the NDIS as being reasonable and necessary? Also, it depends on your caring role and the level of care you provide as an informal support. Another important aspect of your caring role is to attend a range of activities to assist you to maintain your caring role that relate to you as a carer. these forms of support are “capacity building” activities.

When writing your carer’s statement, ensure you highlight that you are caring for someone full-time and require support because of behaviours, on-going  medical  support supervision,  poor  sleep  patterns etc. Please refer to My Life with HD NDIS series – Pre-planning work- book page Carer statement.

Please contact me at Huntington’s NSW ACT for a copy or download it from the button below.

Who can assist you

My advice is to start seeing your GP on a regular basis if not doing so already. The NDIS will look at your role as the informal support person, and they need to know what that looks like from your perspective. You can ask your doctor to write a letter to support your claim for the need for respite and the reasons why.

If the needs of the participant have changed, then it is important to submit a change of circumstance form along with a request for an unscheduled plan review. Your support coordinator can assist with these two forms.

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