Audrey Rapihana knew her severely autistic son Otto needed one-on-one care.
Sometimes the 20-year-old's needs were so great two people were required to take care of him.
But when his caregiver "dumped him" two months ago without explanation, Rapihana found herself in a desperate situation.
The situation ended with Otto's death inside a locked house that caught fire two weeks ago, while his caregiver was allegedly out buying takeaways. Police are investigating the caregiver's actions before the fire, which also left another young autistic man with severe burns.
Rapihana is left considering the circumstances that led her to put Otto in the respite care of the caregiver, when she knew her son needed one-on-one care and that the caregiver was already looking after another autistic man.
"It was a desperate situation, we were in a position of trying to find solutions. My cry now is for families like mine that suffer at the hands of inadequate support.
"There's a lot of families out there that are not getting the help they need and if they are, it's like ours, it's not in a professional environment.
She said there was no funding for the care Otto needed. "I want [the Government] to institute the right mechanisms."
Her son was briefly in the care of charitable trust Spectrum Care, which let him go because it could not get enough funding to cater for his needs, she said.
Arohanui Special School principal James Le Marquand knows the situation too well. Otto was a pupil at Arohanui at the time of his death.
"Audrey never had any organisation that was giving her the respite support, that was working under some strict guidelines and with trained people," he said.
The Herald on Sunday contacted the Ministry of Health but was told no one was available to comment before the paper's deadline.
Rapihana said Care Group had hired the caregiver as an independent contractor.