Johnny emerges into the light

When Johnny finished school in Bathurst last year, it was as if a door had slammed shut on the outside world – literally.

“Johnny would get up at any time of the day and just start gaming,” says mum Margaret. “Door shut, lights off, blind drawn, resenting any interference in his private world.”

“Now, since getting his First Plan, Johnny’s life has turned around and he actually looks forward to getting out of the house – thanks to the National Disability Insurance Scheme (NDIS).”

Johnny was born with Velo Cardio Facial Syndrome (VCFS), which is caused by a malformation in chromosome 22. It causes noticeable changes in a person’s facial structure, such as broader nose bridges and more widely spaced eyes, and can also cause cleft palates although this did not happen in Johnny’s case.

However, there were other associated conditions including a defective heart, a disconnected left lung artery and a mild intellectual disability. Johnny had a complete heart reconstruction when he was 11 months old from which he has made a complete recovery, but it has affected his growth.

“Johnny is on the autism spectrum so he takes everything literally, so for example if you ask him to jump on the scales he will literally jump on the scales! But he has a great sense of humour,” says Margaret. “He’s very good with computers and IT as well.” “Having said that, he is a bit isolated socially and he’s never really had any friends through school. He gets along OK with his brothers but not much beyond that.”

Despite all, Johnny learnt to read and write and finished Year 12 in the Life Skills stream at Bathurst High School. The school organised his application to join the National Disability Insurance Scheme as part of his assessment for transition to work funding, and his acceptance letter came through at the end of 2017.

Margaret admits to feeling very worried about Johnny at that point: “It was a struggle and a fight to get Johnny to come out of his room – I couldn’t get Johnny to see there was a life outside his computer. “When I went for my pre-planning session with our Local Area Coordinator Jo, Johnny was very reluctant to come with me but he stuck it out and answered the questions.”

Johnny’s plan came through at the end of January 2018 and with his support funding in place Margaret was able to book him in with local disability service provider Viva.

“He didn’t want to go at first but gradually he’s built up a good rapport with his support workers,” she says. “Now he’s there five days a week and does all sorts of activities like boxing, one-on-one basketball, going out for milkshakes, taking cooking lessons, shopping for food, engaging in PCYC activities and undertaking travel training.

“Last Wednesday Johnny had an appointment and wasn’t going to attend Viva that day, but the appointment got cancelled and Johnny chose to go to Viva instead of having a day on his computer. He has made such huge progress.”

Margaret hopes that if one day Johnny chooses to move out of home, he will have the skills to live independently with support. “He is making progress but slowly. Socially he is a lot better. He finds it hard to do more than one thing at a time which makes things like learning how to drive difficult, and he still has to build his confidence to even apply for work.

“However, I can breathe again knowing he is on the right track.”

“Johnny would get up at any time of the day and just start gaming,” says mum Margaret. “Door shut, lights off, blind drawn, resenting any interference in his private world.”

“Now, since getting his First Plan, Johnny’s life has turned around and he actually looks forward to getting out of the house – thanks to the National Disability Insurance Scheme (NDIS).”

Johnny was born with Velo Cardio Facial Syndrome (VCFS), which is caused by a malformation in chromosome 22. It causes noticeable changes in a person’s facial structure, such as broader nose bridges and more widely spaced eyes, and can also cause cleft palates although this did not happen in Johnny’s case.

However, there were other associated conditions including a defective heart, a disconnected left lung artery and a mild intellectual disability. Johnny had a complete heart reconstruction when he was 11 months old from which he has made a complete recovery, but it has affected his growth.

“Johnny is on the autism spectrum so he takes everything literally, so for example if you ask him to jump on the scales he will literally jump on the scales! But he has a great sense of humour,” says Margaret. “He’s very good with computers and IT as well.”

“Having said that, he is a bit isolated socially and he’s never really had any friends through school. He gets along OK with his brothers but not much beyond that.”

Despite all, Johnny learnt to read and write and finished Year 12 in the Life Skills stream at Bathurst High School. The school organised his application to join the National Disability Insurance Scheme as part of his assessment for transition to work funding, and his acceptance letter came through at the end of 2017.

Margaret admits to feeling very worried about Johnny at that point: “It was a struggle and a fight to get Johnny to come out of his room – I couldn’t get Johnny to see there was a life outside his computer.

“When I went for my pre-planning session with our Local Area Coordinator Jo, Johnny was very reluctant to come with me but he stuck it out and answered the questions.”

Johnny’s plan came through at the end of January 2018 and with his support funding in place Margaret was able to book him in with local disability service provider Viva.

“He didn’t want to go at first but gradually he’s built up a good rapport with his support workers,” she says. “Now he’s there five days a week and does all sorts of activities like boxing, one-on-one basketball, going out for milkshakes, taking cooking lessons, shopping for food, engaging in PCYC activities and undertaking travel training.

“Last Wednesday Johnny had an appointment and wasn’t going to attend Viva that day, but the appointment got cancelled and Johnny chose to go to Viva instead of having a day on his computer. He has made such huge progress.”

Margaret hopes that if one day Johnny chooses to move out of home, he will have the skills to live independently with support.

“He is making progress but slowly. Socially he is a lot better. He finds it hard to do more than one thing at a time which makes things like learning how to drive difficult, and he still has to build his confidence to even apply for work.

“However, I can breathe again knowing he is on the right track.”

“Now he’s there five days a week and does all sorts of activities like boxing, one-on-one basketball, going out for milkshakes, taking cooking lessons, shopping for food, engaging in PCYC activities and undertaking travel training.”

Margaret

Johnny's mum

Johnny’s NDIS supports have helped him:

  • Increase his self-confidence
  • Improve his social ability
  • Spend time outside his home in the community
  • Build his independent living skills

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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