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Help Us Keep John's Van

$3,834 of $60,000 goal

Raised by 54 people in 8 months
Created October 17, 2018
John Stewart NDIS Story

John is a 23yr old young man with Cerebral Palsy, Epilepsy (status epilepticus) & Severe Dysphagia (swallow impairment) and severe Scoliosis (curvature of the spine). John does not walk or talk. He has a wheelchair and communicates with his eyes, facial expression and sounds. He is totally dependent for all of his needs. John is fed by a feeding tube into his stomach.

John is generally a happy placid boy. He is intellectually approximately 6-10yrs of age. John understands what is being said if explained in basic plain English although it sometimes takes him a few minutes to respond to a request. John sometimes experiences anxiety when in an unfamiliar environment or approached by strangers and relies on his parents to reassure him and make him feel safe – Murray (Dad) is John’s primary carer.

Background/History

John is the adopted son of Murray and Sandi-Leigh. He was removed from his birth parents by DOCS and placed into care due to extensive physical abuse – 14 broken bones by the age of 2 months. John has been living with us since he was 11mths of age. Despite this beginning, we have taught John that he is important, valued and very much loved. We constantly remind him that he is a beautiful boy; clever boy; funny boy; gorgeous boy; cheeky boy etc. John responds to constant positive re-enforcement and encouragement. John’s favourite things include laying on the bed watching his DVD’s, shower time, going for drives, having story books read to him, playing time, having giggles and so much more.

Medical History:

As John entered his teenage years, (2006) he suddenly began to experience life threatening epilepsy seizures, (status epilepticus – lasting for hours) and was usually transferred by helicopter to a Brisbane Hospital within hours of arriving at the local emergency department. John would be put into a medical induced coma before being airlifted to Brisbane. We (his parents), would collect his specialised equipment and drive to Brisbane in our modified vehicle.

Modified Vehicle:

Since June 2015, we have been leasing a specifically modified vehicle that was purchased by our previous service organisation for John. We were initially paying $1200.00 per month which has since increased to $1400.00. Registration, insurance, maintenance service and fuel were all taken care of out of John’s (state) Community Participation Funding Package. 

NDIS Package:

Before we transferred to NDIS, we had a Community Participation package of approximately $65,000.00 which supported John’s needs. The approved NDIS package is in excess of $150,000.00 but we can no longer lease the modified vehicle due to NDIS rules and restrictions. We have been informed by the previous service organisation that they will be taking the modified Toyota Hiace within 10 days unless we continue to lease or purchase the vehicle. The payout figure given to us is $49,500.00, which we could easily afford from John’s NDIS package and still have plenty of money left for other support needs. In John’s NDIS package, he has only been allocated $1,750.00 for transport costs for the year. We requested a review of the transport/vehicle issue with NDIA and were informed that NDIS does not support the purchase or leasing of a modified vehicle as per their guidelines. We explained that on their web page, a car dealership in Sydney, Integrity Car Sales advertises that they are an NDIS provider who sells and/or leases modified vehicles to NDIS recipients (using their NDIS funding) and we have email dialogue with them confirming this. We were told that this is simply not true.

Access to Community:

John needs flexible personalised support to access community for a number of reasons. Apart from cerebral palsy, John has PTSD and suffers with anxiety when he feels unsafe. If he enters a noisy environment or feels unsafe, he can become very anxious which can trigger a life threatening seizure. He needs quick access to a safe environment where he can lay down and/or be driven home. His current modified vehicle provides this access as John feels safe in his familiar vehicle which has a mattress for him to lie down on.

Parents:

As primary carer, John’s father receives the Carer’s pension and John’s mother receives a Disability Support Pension. Because we are on Centrelink Benefits, we are unable to access a bank/credit union loan for a vehicle to care for John. Having access to a suitably modified vehicle is fundamental to John being able to access all supports (medical, therapeutic, social, emotional, and cultural) needed for his health and wellbeing specific to his disability. Without his own safe, personalised, modified vehicle, John’s current quality of life is severely threatened. Despite the declaration by NDIS that we will maintain the same outcomes prior to NDIS, we are worse off than before.
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Thank you so much to everyone who has supported our campaign, we appreciate it so much. It has bought us a bit more time to continue trying to raise enough money to keep John’s van. Just as well, as John has had two emergency trips to hospital including on Christmas eve, but luckily he was well enough the next day to come home for Christmas. We would appreciate you sharing this again through your networks. I would like to sincerely thank everyone who has contributed donations for John. I am overwhelmed by your kindness and generosity. As a member of the Stolen Generations I haven’t experienced much care or kindness in my life, so I am touched that friends and complete strangers are willing to support my son to keep his much needed modified van.
Since June 2015, we have had funding to lease a specifically modified vehicle that was purchased by our previous service organisation for John. He is currently having his support services transferred to the NDIS, and even though the approved NDIS package is in excess of $150,000 we can no longer lease the modified vehicle due to NDIS rules and restrictions.
Who Is John?
John is a young Aboriginal man of the Bundjalung Nation with severe Cerebral Palsy and is the adopted son of Murray Stewart and Sandi-Leigh Bell. He was removed from his birth parents by DOCS and placed into care due to extensive physical abuse – 14 broken bones before he was two months old. The doctors were surprised that John lived as his injuries were extremely severe. John has been living with us since he was 11mths of age, he is now 23.
John has Cerebral Palsy, Epilepsy (status epilepticus) & Severe Dysphagia (swallow impairment) and severe Scoliosis (curvature of the spine). John’s condition has severely limited his ability to do things that other kids/young people take for granted. For example, because John is totally tube fed he is unable to enjoy eating food or sweets or even a birthday cake. He has never been able to blow out candles on a birthday cake. He is unable to play with toys or hold a book or soft toy. Even though John understands what most people are saying, he is unable to respond with words or let us know if he is in pain. Even though John has these limitations and much more, he still has feelings, he can understand, he can think and he has a wonderful/wicked sense of humour!
Despite his traumatic start in life, John is now generally a happy boy having been raised in a caring and supportive environment with lots of humour. We have taught John that he is important, valued and very much loved. We constantly remind him that he is a beautiful boy; clever boy; funny boy; gorgeous boy; cheeky boy etc. John responds to constant positive re-enforcement and encouragement.
John’s favourite things include laying on the bed watching his DVD’s, shower time, going for drives with Murray, having story books read to him by Sandi, playing time, having giggles and so much more.
John responds best to routine. For example, he loves his morning shower and is used to having ENYA music playing on his stereo while Murray gives him his shower – music helps him relax. Approximately 1 hour after breakfast, John and Murray leave for their daily outing. This can include appointments, shopping, visit the library, a walk around town, a drive to the beach and/or a drive in the country. While walking around town, shopping or visiting the library, John enjoys interacting with people. He enjoys country drives because he loves nature. The beach fascinates John, especially when the waves crash on the sand and he loves to watch the seagulls and the dolphins. John usually has to be changed a few times while out and this is done in his van which has a mattress in it for John to lie down on. There are no public amenities for changing young adults like John. Sometimes Murray has to return to the van so that John can have a rest as he tires easily from sitting in the wheelchair. This loss of stamina is due to the effects of the seizures. Apart from having all his care needs met, and despite his limitations, John doesn’t complain or ask for much. It is so important that we keep his current modified vehicle because one of the few things that John enjoys is that he loves to go out for a drive every day in a familiar safe vehicle with relevant supports.
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$3,834 of $60,000 goal

Raised by 54 people in 8 months
Created October 17, 2018
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