Published On: 27 November 2020Categories: NDIS, Stories
Connor Exner is passionate about experiencing live music, going on road trips with his family, swimming in his pool at home and watching movies at the drive-in.
The 17-year-old Thornlands local — who has Angelman syndrome, epilepsy, a severe sleep disorder and complex communication needs requiring 24/7 care — is continuing his journey of developing his confidence, independence and social skills with National Disability Insurance Scheme (NDIS) supports.
Mum, Fiona Lawton, said Connor was relying on informal supports to provide for his daily needs and activities prior to accessing the NDIS three years ago.
“So when the NDIS came along, it was quite literally a ‘game changer’ for us,” she said.
“Connor is now able to be supported in the home with a small tribe of support workers; having a regular team makes life the best for Connor.”
Connor now has regular exercise physiotherapy and works out with the help of a support worker in their home gym.
A speech therapist also provides assistance with PODD (Pragmatic Organisation Dynamic Display) and Proloquo2Go, a communication application, which helps the teenager to communicate.
“We were able to get Connor set up with a more appropriate language system and a range of paper-based and electronic supports,” Fiona said.
“We also did some training with Connor’s support workers on how to be effective communication partners.”
To help Connor self-regulate emotionally, and become more confident in the community, he also began working with a Positive Behaviour Support specialist, helping him with visual schedules and planning, enabling him to better exercise choice and control over his daily activities.
“Connor has also increased his social inclusion, doing things like inclusive kayaking, going to the theatre with his support worker, day trips to the beach, and attending a regular youth group.
“He is still working on being calm in the community. Occasionally it can get overwhelming for him.”
Fiona, who is also National President of Angelman Syndrome Association Australia, admits Connor’s life has changed significantly as he has grown in confidence and self-esteem over the past year.
“This was important as he has also been navigating changes associated with his epilepsy, transitioning as he gets older, dealing with growth spurts, and of course the profound disruption associated with COVID-19.
“We are also preparing for the post-school transition phase in the next year. We will be re-imagining his life with him and creating amazing opportunities for his continued development and life-long learning.
“Connor’s long-term goal is to live independently in his own home with the people he chooses.”
Connor received assistance to apply for and implement his NDIS funding from Carers Queensland’s NDIS Local Area Coordination Partner in the Community Program for the Brisbane region.
Fiona said they had a great experience with their Local Area Coordinator (LAC), Sharon, who listened to Connor’s story and their family’s journey.
“Sharon helped us to articulate meaningful goals for Connor both short-term and a longer-term vision,” she said.
“We had done a lot of preparation for Connor’s first planning meeting, and Sharon respected our voice in the process, and the importance to Connor of self-determination and choice and control.”
Carers Queensland can support you to find out more about the NDIS, to apply for funding and to help you get started with the NDIS.
If you have a disability but are not eligible for the NDIS, Carers Queensland can help you identify and link to options for support in your community.