I’m a carer and I need a break…

WORDS GISELLE BEAUMONT

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.

0 0
Share on facebook
Share on twitter
Share on pinterest
Share on email

Search for more articles

Audience

Topics

RESULTS FILTERED BY:

A Caregiver’s Handbook for Advanced-Stage Huntington Disease – Pollard, J. (ed.) 1999

The aim of this book is to familiarise carers with Huntington's disease, so that they can recognise its symptoms and know what to expect as it progresses.
It also includes general principles of care and tips that other carers have found useful.

Isolation tips and support for young people and their families 

WORDS AMY HALE
As everything changes around us day by day, in ways most of us have never experienced before, we are feeling a lot of uncertainty – in our own lives, for our families, friends and for the world in general. In a situation like this, both the known and the unknown can cause increased levels of worry and stress, especially for those in families affected by Huntington’s disease who are already coping with a lot.
Access our Youth Connection counselling services.

Global Connections for Huntington’s NSW ACT

WORDS LEWIS KAPLAN
I had the privilege of attending the EHA conference in Bucharest, Romania in October 2019.
Here's a few stand-out presentations and posters and Q&A with John Eden, CEO of the Scottish Huntington’s Association.

Coping with self-isolation for People with Huntington’s disease

Huntington’s disease can be challenging on a good day, therefore preparing for self-isolation and being informed on the best ways to cope during this difficult and confusing time is very important. Below, are some tips on coping with COVID-19 isolation for people with Huntington’s disease.

Coping well and finding resilience

WORDS AMY HALE
Dealing with life’s challenges as a young person can be difficult. School, work, relationships, friendships and family usually provide more than enough to cope with, put the extra challenges HD brings on top of all of this and it’s no wonder kids and young people affected by HD have a much harder path to navigate.

Travel Assistance

Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS) is a NSW Government scheme that provides financial assistance towards travel and accommodation costs if a patient needs to travel long distances for health or medical treatment that is not available locally.

Welcome to our new website!

Please bear with us while we iron out the last minute wrinkles! If you have any feedback about our new site, please fill out the form below.