Cordeaux Heights parents John and Margaret Bilboe are concerned that patients with disabilities are falling through the cracks in the hospital system.
Mr Bilboe, whose son Darren has an intellectual disability, applauded the recent launch of the Illawarra Shoalhaven Local Health District's Disability Action Plan.
However, with many years experience of how easily "policies and protocols" can break down at busy hospital wards throughout the Illawarra and Sydney, the Bilboes have joined up with other parents of disabled children to ensure the plan is put into practice.
"We were at the launch of the Disability Action Plan and it's a great policy, but people with disabilities and their carers want to see it enacted - and now," Mr Bilboe said.
"It's all very well to have a personalised plan and a risk assessment carried out but if the policies are not being communicated from the managers to the floor staff, then issues can arise.
"We've had some harrowing experiences with Darren in hospitals over the years, and have heard similar stories from other parents, and it's time these things were followed through."
The couple's son Darren, 44, lives in a group home run by Ageing, Disability and Home Care (ADHC) and is frequently hospitalised due to severe epilepsy. An ADHC staff member accompanies Darren to hospital, but leaves once he's formally admitted to a ward.
"Hospital staff are usually great but they are not all trained to deal with patients with disabilities," Mr Bilboe said.
"Patients like Darren, who is like a two- or three-year-old who needs help showering, toileting and feeding, who tends to wander off and who typically answers 'yes' to any question.
"We get there as soon as we are notified but who will look out for him, who will speak for him, how will we have peace of mind if we are away - or dead? It's a worry for many ageing parents."
Mr Bilboe said he was alarmed by recent articles in the Mercury, covering industrial action by Wollongong Hospital wardspersons who have refused to "companion" patients who require supervision.
The Health Services Union is supporting the wardspersons, who claim they have been abused and attacked by some patients.
"Who's going to sit around and be with our son if he needs 24/7 support?
"It shouldn't be wardsmen who don't have the training or specialist knowledge," Mr Bilboe said.
Illawarra Shoalhaven Local Health District director of clinical governance Robert Farrugia said the action plan was developed with input from the community and stakeholders.
He said the district is working with local disability service providers to get a better understanding of the specific issues people with a disability face, and taking that back to staff in the hospitals to see how they can break down the barriers identified.