NDIS opens new possibilities for Damien

Back to blog5 months ago by Renee
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Two photos of young adult Damien using adapted gym equipment.
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Damien Schmidtchen, like many 22 year old men, is interested in working out to improve his strength and fitness. Unlike most young men his age, however, Damien was diagnosed with spastic quadriplegia, which made regular attendance at a gym seem like an impossibility.

When Damien transitioned to the National Disability Insurance Scheme (NDIS) at the end of September 2016, however, a range of new possibilities opened up. Damien was amongst the last to transition in his area. His Mum, Alison, recounted some of the difficulties of the NDIS process, saying that she felt the system “assumed we knew what we wanted” and that this was a challenge for their family.

It was when she first began investigating the NDIS transition that she came across Cerebral Palsy Alliance’s site in Scullin, ACT. Through this contact she met Client Services Consultant Andrea Gray, who provided assistance with navigating the NDIS system that Alison describes as being “worth its weight in gold”.

“Andrea has been great,” Alison says. “It was so helpful to have someone who just knows how the system works, and who can help us identify programs and services that are actually going to be of value.”

Alison’s engagement with Cerebral Palsy Alliance has also had other benefits. Damien has been accessing physiotherapy services and has just begun occupational therapy through Cerebral Palsy Alliance, and has been very pleased with the results so far. Alison found the integrated approach to therapies and programs refreshing, saying it was an entirely new experience to receive assistance that looked at the “whole picture” of Damien’s activities and needs. “As soon as we came in I thought, we’re in the right place.”

Damien and Alison agree that the highlight of transitioning into the NDIS with Cerebral Palsy Alliance support has definitely been the gym,. The funding made supported visits to the gym possible, but Alison was initially dubious. “When we first walked in, I looked at the equipment and thought this would be another disappointment – another thing which just didn’t fit.” With the help of Exercise Physiologist Erin Grocott, however, Damien was very soon coming to grips with the elliptical, cable rowing machine and bench press. “His eyes just lit up. It’s stunning. It’s just amazing.” 

Damien’s integrated program is designed to help him build and maintain strength on his left side, correct a growing postural bias related to his Cerebral Palsy and, most of all, provide him with his number one highlight for the week.

“It’s really great that there’s something both he and his support person can do. It’s more like he’s going to work out with his mate, than going out with his mum,” Alison said. “Every morning we get up and Damien asks if we’re going to the gym today. He’s really stoked with the whole thing.”

When asked about what advice she would give to anyone transitioning into the NDIS, Alison said the number one priority was to “have a plan”. She said that the range of services on offer was comprehensive but also bewildering. “We unwillingly participated in a sort of ‘think-tank’,” she said, “but it was definitely worth it.” This refers to a facilitated planning meeting which is provided as an option under the scheme. A funded facilitator helps families conduct planning and scoping discussions in order to choose package options in a goal-oriented manner. Her second piece of advice was to engage with someone like Cerebral Palsy Alliance. Alison said that they would have had great difficulty using the NDIS to its full potential without Andrea and Cerebral Palsy Alliance’s assistance.

The next step for Damien will be housing, according to Alison, and in this regard she has also been surprised and grateful for Andrea’s help.

According to Alison, Andrea has been instrumental in finding providers for group housing, and also for assistance with Damien’s personal care. Alison says this has been of great assistance in the operation of their family life, with staff coming to support Damien twice a week, an arrangement which fits ideally with their schedule. And as for the housing side of things, Alison admits to having been at her wit’s end until Andrea alerted her to some of the organisations and service providers associated with this area. “Who knew they existed?” Alison said.

Alison is concerned about what will happen when the allotted funding for Damien’s gym attendance runs out. They are already looking ahead to building their next package, and are confident that with Andrea’s support they will be able to continue taking advantage of the funding to facilitate Damien’s goals.

“I want Damien to be able to move out, so it’s like he’s sharing a house with his mates instead of living with his mum and dad. I also want him to be able to do some volunteer work and engage more with the community,” says Alison.

Damien already volunteers at the free public running event, parkrun, as a volunteer marshal, and his enjoyment of this experience has prompted them to look out for other opportunities to engage in similar activities. Alison says that Andrea and Cerebral Palsy Alliance will continue to be a big part of how they facilitate Damien’s life choices in future. Most of all, though, “Seeing Damien empowered makes everything better,” says Alison.

If you would like to find out how the Cerebral Palsy Alliance can help you navigate the NDIS, you can visit us at: www.cerebralpalsy.org.au/services/ndis/about-the-ndis/