Griffin and Amy

Imagine a teenage boy sitting in a chair at school, hardly moving, from 7.30 am to 4 pm. No standing up or walking short distances is allowed, not even to go to the toilet. This is what Griffin was expected to do − to stay in his wheelchair all day.

It’s been a battle for his parents to convince his school and the education department that this restriction is wrong.

Griffin, like most teenage boys, loves music and sport. He plays wheelchair sports and enjoys listening to the school band. He is non-verbal, but does communicate. He was looking forward to continuing his mainstream education in high school, but his mother Amy told the Royal Commission the struggle to access ‘basic requirements’ has been ‘relentless’.

Griffin’s two local high schools couldn’t take him. One was at capacity and the other lacked accessible toilets and parking. The ramp to the main school building was also challenging.

Griffin’s parents contacted the education department and the minister to ‘assist Griffin in accessing his right to education’.

While his parents waited for the government to respond, they enrolled Griffin in a local private high school. Amy said the school provided ‘a wonderful team of staff supports’, but there are ‘serious shortfalls’.

Like all teenagers, Griffin is growing quickly and he needs weight-bearing movement to build his muscles.

At home Griffin uses a standing frame and walker. At school there is no standing frame and no support for Griffin to use his walker. This means on school days Griffin is confined to his wheelchair for eight and a half hours. His doctor says this has ‘significantly impacted his function’.

Griffin does not even get the opportunity to walk and use his muscles when using the bathroom. Ideally he would use his walker to walk to the toilet, then a hoist would lift him into place. The school expected the NDIA to fund this equipment but the NDIA said it was the school’s responsibility.

So, instead, staff take Griffin to the toilet and hoist him onto the change table for a few minutes.

Griffin uses aids to assist bladder function, but he is bowel continent. He has a continence plan ‘which clearly indicates addressing signs of [Griffin] “holding on” and then offering him the opportunity to communicate his need for the toilet’. Too often staff miss Griffin’s non-verbal cues.

This happened recently at a school assembly. Griffin was enjoying listening to the band. Later, a support person said they did notice ‘sweat appear on his upper lip’ and thought he may have had a temperature. Griffin ‘became increasingly clammy and then soiled himself’.

Amy came to the school with clean clothes. Staff had done ‘an excellent job cleaning Griffin (and protecting his dignity and morale)’ but his chair smelled. This prevented him from attending more classes.

Amy told the Royal Commission part of the problem is Griffin’s ‘grossly inadequate’ NDIS plan.

Another factor is the failure of schools to recognise that every student has the right to a mainstream education. Amy said the school principal and leadership team have been ‘distant and dismissive’ of her family’s requests for assistance. The government response, too, has been inadequate.

Amy finds this offensive and expects them to ‘get set up’ quickly. She knows several students with disabilities in mainstream primary school. ‘These issues require resolution for other … students who will rightly be expecting their place in class.’

Eventually one of the local state schools advised they were refitting the toilets. Amy says this, together with the school’s efforts to welcome Griffin, are steps in the right direction. However, the extent of Griffin’s battles leave Amy with ‘little hope for future students with disabilities’.