"Before the NDIS I didn’t know how his life would change, but it is changing now.”
Anthony, aged 9, is an independent, active boy. He loves spending time with his three brothers and his parents. Anthony was approved to receive funding under the National Disability Insurance Scheme (NDIS) as a resident of South Australia. Not long after, the family moved to the eastern suburbs of Melbourne.
Soo Young was able to have her first NDIS planning meeting over the phone in Melbourne with her NDIS planner. She made sure she was well prepared before the meeting so she wasn’t nervous.
“(In my NDIS planning meeting), I wrote the things which I wanted for Anthony… the planner was very understanding, they listened.”
Soo Young articulated that she wanted to self-manage her son’s NDIS plan. In April 2016 his first plan was finalised and his funds allocated.
The first challenge Soo Young faced was to find NDIS services in the eastern suburbs of Melbourne – a new community for their family and an area where the NDIS has not yet rolled out.
“It was a hard time, I didn’t know what to do… I picked four organisations to call and lifeAssist was the ones who understood what I needed.”
Soo Young spoke to lifeAssist Connections & Outcomes Consultant, Gayle Green.
lifeAssist Disability Solutions staff are experienced in understanding the needs of NDIS clients. Gayle was a part of lifeAssist’s team operating in the Barwon NDIS trial site, where lifeAssist has assisted NDIS clients to achieve their goals since 2014.
Anthony’s NDIS plan included 30 hours of Support Coordination. Gayle and the staff at lifeAssist are experienced in providing Support Coordination to NDIS participants like Anthony.
One of Soo Young’s goals is to have Gayle help build her capacity so she is better equipped to coordinate services, recreational interests and self-manage Anthony’s NDIS plan.
“Gayle (takes on) the role of a bridge… she is in the middle, she talks to the support workers and she listens to me… I try my best to search for support, but I miss things. Gayle knows what to look for.”
“Try to find a support coordinator. They will give you lots of information and options. I can ask, and they know, otherwise I am researching alone.”
Because Soo Young manages Anthony’s plan, she is able to choose the service providers and coordinate the supports she wants, completing complex tasks with Gayle’s assistance and advice.
A huge task was getting Anthony’s new walking frame, with coordination between Soo Young, the NDIS, Anthony’s physio, State Wide Equipment Program (the supplier of the frame). This frame is custom made, helping with his mobility.
Before the NDIS, Soo Young was Anthony’s primary carer, while being a mother for four boys which created a stressful situation.
“It was a struggle, (even though) I had lots of people supporting me... I can see the change in Anthony’s life… before the NDIS I didn’t know how his life would change, but it is changing now.”
Now, support workers are able to come into the house and assist Anthony. Soo Young is able to spend more time with her other sons. Having support workers in the home was a big adjustment to make, but one Anthony has made well.
“He is more confident because he talks to the support workers and goes with them into the community. Before he used to be a shy boy, but now he likes talking. He always relied on me to assist him each day... He now plays sports just like his brothers….. he goes to music therapy. Going to camps and joining scouts is the next goal.”
Soo Young has advice for those entering into the NDIS. Firstly, it is helpful to ask for support coordination to be included in your NDIS plan because it takes a lot of stress away and helps to work alongside an organisation experienced in disability services.
“Don’t worry. Just knock on all the doors and ask questions. If you do nothing you won’t get any answers. It is hard because (the NDIS) is all-new, but everyone will try to help you.... Think of the good things, not the bad things… (the NDIS) is all different, but you’re a parent and you know (your child) the best.”