Death concerns mum
The news of Otto Rapihana's death was enough to break Janine Alexander's heart.
Not that she knew him.
But the fact he'd died while locked in a burning house when he was supposed be looked after by a caregiver is an issue that hit close to home for her.
Mrs Alexander's son Steven has severe autism, like Otto, and needs round-the-clock care.
The 18-year-old needs to be surrounded by people who understand his condition but getting quality safe care for Auckland's growing adolescent autistic population is increasingly difficult because of a lack of available resources.
The Fire Service is unwilling to discuss the cause of the first that killed Otto calling it a "sensitive and complex" case.
Waitakere police are investigating the incident and considering if criminal charges are to be laid.
Otto, 20, and a 25-year-old man were being looked after on November 9 by a caregiver who had left the property to allegedly buy fish and chips when the fire started.
The other autistic man was able to escape with just burns but Otto was locked in the bathroom until it was too late.
How someone could leave the two high-needs youths by themselves is a question puzzling the wider community of Arohanui Special School which Otto attended.
Arohanui School principal James Le Marquand says there is a great deal of expertise needed to care for people with ASD or Autistic Spectrum Disorder.
"People need a level of expertise about what they're dealing with and back-up support - you can't just throw these positions to Joe Bloggs."
But Mr Le Marquand says parents are finding themselves increasingly isolated from specialist organisations which provide respite or residential care.
"The big organisations were once tasked with respite care but they've abdicated from that, organisations like Spectrum Care and the IHC," he says.
"Twenty years ago respite services were ongoing lifelong care and we'd have around 80 per cent of our students go into IHC care. Now it is 0.75 per cent. It's because our students with challenging behaviour cost a lot of money to support.
"Their motto is ‘In Our Community', but they're not in our community at all."
Mr Le Marquand says the lack of suitable care options available means tragedy is inevitable.
"If it wasn't a burning
house it could have been a student running in front of a car," he says.
Oaklynn Special School deputy principal Colleen Smith says it's a small group of people with complex needs that are going without.
"The families with the greatest needs are the ones without the help. If their needs weren't that challenging they wouldn't need the respite."
Mrs Alexander's Steven will no longer qualify for respite services from Spectrum Care when he turns 21 so she is now looking at care options.
But access to care for older ASD children is limited," she says.
"It's quite shocking. We've been told for Steven to meet the criteria for residential care he has to be assessed as a danger to the community or himself or have exhausted all other possible options.
"The time before he turns 21 is going to go fast and then what am I going to have to do? Sell up my business and stay at home. We and the school have worked really hard to get him to where he is.
"Parents don't have the support and organisations don't understand how difficult help is to access and how long it takes."
Mrs Alexander wants more help available on a regular basis and options for emergency situations.
"When there's nothing left and you're at the end of your tether there needs to be acute help.
"Right now you'll get someone over for a three-hour assessment, they'll go back to their managers and you might get some options six months later."
Spectrum Care provides respite support for children and young adults from 5 to 21 and has five beds in West Auckland catering for 26 children.
Chief executive Chris Harris agrees there needs to be more resources available for struggling parents.
"There isn't an autism emergency service available in New Zealand. In a mental health situation there are beds at a hospital but there's nothing for these families."
He says the organisation has to balance the different needs of children with intellectual disabilities and ASD.
"The problem in Auckland is there's a known high rate of autism and we're dealing with a bubble of teenagers coming through the system. Perhaps it's reasonable to say the level of available resources has not grown with the population."
IHC national communications manager says the organisation has been advocating the Health Ministry for more funding to deal with the ongoing issue.
Mr Le Marquand and Mrs Alexander hope through this tragedy changes will be made to help other families with ASD children in the future.
The students at Arohanui Special School have lost their king but not his legacy.
Otto Rapihana, who was so treasured at his school of 15 years, died while locked in a burning house in Glendene on Friday, November 9.
Principal James Le Marquand says the tragic loss has affected the students, staff and families at the school profoundly.
"He was an icon here. He was a king. Whenever we had a really big welcoming for a special guest he would always be sitting in the middle, every time. He was that sort of kid.
"When I went around the classes with Otto's photo explaining what had happened, they all understood.
"Most of them can't speak but they picked up on the sombreness and just that sense of sadness. You could see it on their faces."
Otto came to the school's Glendene satellite class when he was 5 with severe autism.
His condition meant that he couldn't communicate with speech and he had challenging behavioural issues, Mr Le Marquand says.
"But in many respects, his challenges helped define how the school worked to best meet the needs of the students.
"I don't think that he came to the school as a student, he came to us as a teacher."
Mr Le Marquand says Otto loved food and going for rides in the school vans.
Otto had a year left at the school, which takes students up to the age of 21.
- © Fairfax NZ News
Are you excited about next month's Royal visit?