Max is a 20 year old NDIS participant. He has epilepsy, glaucoma, vision impairment and an intellectual disability, caused by Sturge Weber Syndrome. He lives in Maclean in Northern NSW. His care is shared between his mum Veronica, who self manages his NDIS Plan, and a local family.
Self-managing Max’s NDIS Plan works well
Self-managing a NDIS Plan offers the greatest choice and control, but it may seem too hard for many participants and carers.
Veronica had already managed Max’s funding under the NSW Community Participation Program and decided to manage her son’s first NDIS Plan when it came through in May 2018.
“Setting everything up on the website and putting systems in place took time in the beginning, but now I’ve got everything working and it’s become a very smooth process” she says. “I have to say thanks to Social Futures Local Area Coordinator Susan for her help in getting us to where we are now.”
Max thrives on shared care
Veronica shares Max’s care with a host family. It began one weekend a month under Max’s earlier funding. NDIS funding means Max now shares his time between the two homes and he’s thriving. He doesn’t cope very well in shared accommodation.
“Caring for Max 24 hours a day is exhausting. I wouldn’t have been able to continue to care for him on my own. Max loves his host family. Deanna and Mick have six children of their own as well as grandkids. Max loves them all.”
Max’s host mum Deanna has looked after Max as a carer for 10 years. They have a large space in their home that is perfect for Max.
From care to community
Mick, Max’s host dad is a cricket coach. Max has become part of the cricket community and the club now provides opportunities for other children with disabilities.
Beyond daily care Deanna and Mick provide, NDIS also funds carers to engage Max in activities on most days, including exercise. They also help him to volunteer at a plant nursery and a nursing home. This is improving his communication and work skills.
“Max needs to be kept busy all day or he gets up to mischief,” Veronica says. “Targeted activities throughout the day keep him out of trouble and builds his social, emotional and physical wellbeing.”
Veronica says self-managing Max’s NDIS plan is “amazing”.
“We choose who works with him and the activities he does,” she says. “As well as Deanna and Mick, I employ five other carers and pay them Award wages and superannuation. It’s a lot of work but it is worth it.”
Veronica says the NDIS has been “life-changing” for her. She’s just returned from her first two-week holiday in 25 years and can now spend more time with her older daughter in Queensland.
“This has given me back some life and energy. In the long term I will be able to be the mainstay in Max’s life for a LOT longer. This is crucial to his happiness and wellbeing.” (Max’s mum and carer, Veronica)
Max’s NDIS supports have helped him:
- Boost his social and community participation
- Learn work and life skills to become more independent
- Have a life away from home
- Improve his health and wellbeing through regular exercise
Social Futures is a National Disability Insurance Scheme Partner in the Community.
Our Local Area Coordination services connect participants to the NDIS in regional New South Wales.
To contact your nearest LAC call 1800 522 679
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