Mum told it’s ‘easier to donate a kidney’ than to get support for autistic son

Monday, 6 May 2024

The mother of a 13-year-old with autism excluded after assaults was told it would be “easier to donate a kidney” than to get funding for his care.

Judith Taylor’s 13-year-old son William has autism.
He started high school this year but after only five weeks, William was excluded for assault.
His mum says the incident could have been avoided had he received funding from the Ministry of Education for targeted support at school.

Judith Taylor is exhausted. It’s been seven weeks since her autistic son was excluded from Heretaunga College following an assault on four staff members and two students.

The incident took place in early March, just five weeks after her son, who she wanted referred to by his middle name, William, started high school.

Judith Taylor said she was told by her local Ministry of Education office it would be “easier to donate a kidney” than to get the funding she was after.

The then 12-year-old pushed students, punched teachers, kicked doors, lifted a table and a computer monitor during a meltdown she believes was triggered by the noise and stress of moving classes without support.

Taylor says the incident could have been avoided had he received funding from the Ministry of Education for targeted support at school.

For almost two months now, the Upper Hutt woman has been trying to get funding for William in the hope he will be allowed back.

“I’m tired. I’ve been fighting this fight for weeks and I’m exhausted. I don’t know how to keep my head above water,” Taylor told Stuff.

At the age of 7, William was diagnosed with autism level one, ADHD combined type, sensory processing disorder, as well as anxiety and depression.

“But [William’s] intelligence and general functioning level has meant, despite his high-sensory and behavioural support needs, he has been declined long-term funding,” Taylor said.

Taylor said autistic children have an “amazing capacity to learn and contribute, they just need that behavioural support”.

Parents of autistic children have long reported a tough battle to get support for their children in schools.

Taylor said her local MOE office told her it would be “easier to donate a kidney” than to get the funding she was after.

The Ongoing Resourcing Scheme (ORS) provides the highest level of funding for disabled and high-needs students in New Zealand.

But, there is very specific criteria to meet, and generally only the children in the top 1% of high needs are funded.

“I don't begrudge those kids that funding at all. They do need that funding absolutely, and so the Intensive Wraparound Service (IWS) is what we were aiming for.”

IWS is a support programme for children aged 5-14 years old with highly complex and challenging behavioural and/or learning needs.

Taylor said the ministry took a “watch and wait approach which later became catastrophic”.

During the Wraparound process, a team of people who are relevant to the child, develop an individualised plan of care.

Taylor said it became evident towards the end of intermediate, there was “no way [William] was going to function in a mainstream high school without that [IWS] support”.

William had been involved in an assault midway through year 8, and was later stood down for aggression.

“The ministry gave interim response funding (IRF) to the school and they managed to fund a teacher aide for him for the last three weeks of the school year,” Taylor said.

But apart from IRF at times of crisis, Taylor said the ministry has never recognised William’s need for ongoing support

While William was transitioning between schools, Taylor was communicating with Heretaunga College about securing IWS funding.

Taylor said autistic children have the capacity to learn with the proper behavioural support but they were instead being “left to fall completely to the wayside”.

In a series of emails, the school said getting IWS would be a “long shot” and the ministry was unlikely to support the application “unless [he] had a terrible transition”.

“It was a watch and wait approach which later became catastrophic,” Taylor said.

When he started, William had a form teacher experienced in learning support needs and a teacher aide was around but not dedicated to him.

“He was having to move between classes with all the stress and the noise with no assistance and there was no behavioural management plan in place for him.”

William also had access to the learning support area, but couldn’t always detect when he needed help.

All of these factors contributed to the events which led to his exclusion on March 13, she said.

Heretaunga College caretaker principal John Russell said with no ministry funding for level one autism, ADHD, schools are under-resourced and struggling. (File photo)

“It was a classic meltdown where that pre-frontal cortex has gone offline and the brain is working fully on adrenaline,” Taylor said.

She said if someone had picked up on the signs, it may not have escalated.

“Don't get me wrong, it was a big incident and the suspension was fully justified.

“But, I absolutely think it could have been avoided had funding been able to be accessed at the appropriate point.”

Studies have shown autistic children in New Zealand are almost three times more likely to be stood down or suspended from school than children who aren't autistic.

Researchers found high-need funding was associated with reduced suspension rates among autistic students.

The exclusion from school had been tough for William who “desperately wants those social connections”.

“We’ve got a portion of people who, through the education system, could quite easily become perfectly functioning members of society living dignified lives,” Taylor said.

“But instead, we’re letting them fall completely to the wayside, leaving them to be picked up by the Ministry of Justice down the track.”

Heretaunga College caretaker principal John Russell couldn’t go into detail about William’s case but, having been a principal of three schools, he had dealt with this situation “a lot”.

“I know there is simply no ministry funding for level one autism, ADHD. It’s an impossible situation, totally under-resourced and schools are really struggling,” Russell said.

When asked what support was offered to those unable to secure funding, Russell said it was just what the school could do with its own resources.

“We have had a continual increase in need. . . but of course, the resource doesn't stretch any further. It's been a long-standing issue and schools are working pretty hard to try and provide for these kids,” he said.

Russell said sometimes a suspension was part of “putting the pressure back on the ministry, to front up and say, this simply can’t be managed without additional resource”.

“We’re all trying to work the system the best we can, but in the end, there’s a fixed budget. It’s not a needs-based budget, it’s a fixed budget.”

In a statement, Nancy Bell, MOE hautū (leader) Te Tai Runga (South), said IWS “is available when needs have been identified within criteria as highly complex and when local interventions and services have exhausted their resources”.

Students not eligible for ORS funding could apply for services from Resource Teachers of Learning and Behaviour, or from the ministry’s learning support specialists, Bell said.

Bell did not respond to claims about the difficulties securing the services she mentioned, or why IWS was not provided prior to William starting high school.

She said MOE staff have offered to assist the family with a learning support referral, and met with the school principal to discuss support for William.

William has now been at home longer than he attended high school.

He turned 13 in April.

“He'd wanted a full-on birthday party, but of course, he couldn't have it because he didn't have many people to invite… it's heartbreaking honestly,” Taylor said.

She is applying for IWS and enrolling William into distance education provider, Te Kura, but she hopes, with funding, William can return to Heretaunga College, in a dual enrolment with Te Kura.