My experience as a carer accessing the National Disability Insurance Scheme (NDIS)

Posted on 14 October 2015 by Jayne Crouch

This week is Carers Week, recognising and celebrating the contribution unpaid carers make across Australia.

As the roll-out of the National Disability Insurance Scheme (NDIS) approaches, many carers across the country are working with their children, partners or families to prepare and make the most of the new scheme. Jayne shares her experience as a carer accessing the NDIS for two of her children and her husband.

The NDIS has made a huge difference for my family, however not without a lot of planning, preparation and work.

Two of my five children receive support funded by the NDIS as does my husband, who receives funded support after a stroke.  

We live in the Barwon region and were able to access the NDIS from July 2013. Planning and preparation for the NDIS takes a lot of work to make sure individual needs are met in the planning process.

Although it took a lot of work to get the right plans for my children and husband, it has been well worth the effort!

Before the NDIS, the funding environment felt as though people with disability were forced to take the crumbs dropped from other people’s tables, and more than that, that they should be grateful for what they received.

Now it feels like not only are people with disability invited to eat at the table, there are so many options to choose from; the challenge now is that there is no ‘menu’ to limit your choices.

With choices now being so open, it’s really important that people with disability, their families and support networks start to think about all the supports they receive and what’s important to them for their future. It helped my family members to identify their goals, work out the supports needed on a day-to-day basis as well as on a longer term, and also to do some homework around where supports can be purchased.

This NDIS has made a huge difference for my family, especially for my daughter. She had been attending day programs for some time, and while she went happily each day, the programs offered did not always meet her needs.  

When it was time to plan daytime activities for my daughter, I spoke to her day program provider and suggested that she would be better matched to volunteer work with children.  The provider said my daughter would need one-on-one support for such an activity. So I approached the National Disability Insurance Agency (NDIA) and included the hours of support my daughter would need to do some volunteering in a revised plan.  

After some negotiations, my daughter now volunteers at a local childcare centre one day a week and is supported to prepare snacks, set and pack-up activities and assist the centre to run their programs with children.

We’ve since had to find an alternate provider to support my daughter, as her previous provider felt that the more flexible support approach requested couldn’t be accommodated within their program. However that is part of the beauty of the NDIS – having the power to make the best choices and decisions for every individual.   

My son, who has autism, has very different needs. His NDIS plan focuses on getting involved in the community, through taking part in netball competitions and going on ‘adventures’ with the male staff that he has selected and calls his ‘mentors’.  My son now has a better quality of life and outlook, as well as more opportunities to go out with people other than family members.

In the past, my son had trouble coping with support that didn’t meet his needs, which led to behaviours that impacted on his relationship with his father.  The NDIS has supported both of them through tailored supports to build a more functional relationship based on communication rather than conflict.

My main message for carers supporting their family to transition to the NDIS is to spend time planning and preparing. Take the time to work out what supports are currently received, and what supports would be needed for longer term goals, and together you can plan effectively for the future.  

Learn more about the NDIS

Author profile:

Jayne CrouchJayne Crouch is a mother of five from the Barwon region in Victoria who is a carer three family members who receive support from the National Disability Insurance Scheme (NDIS) - her daughter who has Down Syndrome, her son who lives with Autism and her husband who has recently suffered a stroke. Jayne speaks from the heart about her personal experiences with disability and navigating the NDIS.  Jayne describes her main job as being the household manager. When she is not managing the household, Jayne shares her family’s story through public speaking.

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