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.
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.
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.
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.
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.
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.