Jones believes her grandson suffered a brain injury when he was run over in a driveway as an 18-month-old but the Accident Compensation Corporation (ACC) has refused to help on the basis that he had a pre-existing brain condition that was initially diagnosed as pachygyria, which causes intellectual disability and swallowing problems.
"He did have trouble swallowing but that was only after the accident and he never had any of the other symptoms," says Jones.
"Now a specialist says he does not have that and has a condition called schizencephaly but none of the experts seem to be able to agree on his condition and an MRI scan showed a lesion on his brain."
Maria Jones has spent years battling the system to get adequate education support for her grandson Razeal Bracken-Wall.
Photo/ Stuart Munro
Razeal has attended a total of five schools in Taupo and Whanganui but the schools could not manage his "meltdowns" and his tendency to run away when things became unmanageable for him.
"It was alright while a teacher was sitting beside me and helping me but it got too noisy and confusing," he says now.
Tawhero School in Whanganui was able to provide that one-on-one support for Razeal until Ongoing Resourcing Scheme (ORS) funding from the Ministry of Education proved insufficient to pay for the support.
He attended Tawhero for almost two years and that is the longest time he has spent at any school.
His grandmother says the problems with Razeal attending school are many and complex.
"There have been problems with his diagnosis which specialists have not been able to agree on and then there is the lack of understanding about his behaviour.
"His disability is invisible so people assume that he has a condition like ADHD (attention deficit hyperactivity disorder) or they say he has behavioural problems and I have been made to attend parenting courses.
"He just doesn't tick the right boxes."
If Razeal met ACC criteria he would qualify for a case worker who would work with his grandmother to determine the best care and education plan.
Whanganui Mayor Hamish McDouall says it has been "such a battle for Maria". Photo / Supplied
Whanganui Mayor Hamish McDouall was Jones' legal counsel when she first applied for ORS funding.
"Razeal keeps falling between the funding gaps and it has been such a battle for Maria," McDouall said.
"She is trying to take care of him and get the best education for him and she is constantly getting the run around."
She has a new lawyer now and is still battling ACC in court.
"According to their terminology, the injuries that Razeal sustained from the accident are now 'spent' and are not the cause of his current difficulties."
The education Razeal does receive now is delivered by two visiting teachers from Arahunga Special School which adds up to 7.5 hours each week and he has a "buddy" from Idea Services to take him out for activities for eight hours each week.
