The University of Wollongong senior lecturer was among a crowd of people with a disability, their carers and advocates at a rally on Thursday to protest proposed funding cuts to these groups.

They’re concerned about the NSW Government’s plan to axe disability advocacy funding from July 2018 after the transition to the National Disability Insurance Scheme, which they say would force the closure of around 50 groups statewide.

The group held the rally at Unanderra railway station – the site of a long-running campaign for lifts to improve disabled access – to drive the point home.

Dr Dreyfus said the loss of these groups would be a ‘’disaster’’ for people with disabilities and their carers – and she would lose vital support on her ‘’interesting journey’’ with son Bodhi, 22.

‘’He can’t speak yet he wants to say a lot. You can’t take your eyes off him as he has no sense of danger or what’s appropriate in life,’’ she said. ‘’It’s really hard to explain the difficulty of life with Bodhi – he broke lots of things – our other kids toys, our books, our furniture and it was relentless.

‘’We didn’t know anyone else with a child like him and often times I needed to ask someone who might have useful knowledge to help us and the only place I could get any decent understanding and real answers from was CID – the Council for Intellectual Disabilities.’’

Five years ago for instance, the advocacy group helped her family when they decided it was time for Bodhi to enter a group home.

‘’We were barely coping from the 17 years of sleep deprivation and non-stop running after our gorgeous but very demanding son,’’ Dr Dreyfus said.

‘’However the government does not provide housing for under 18s, and we were told the only way we could get him into a group home was to make him homeless first.

‘’So we would have had to engineer a crisis by not picking him up from respite, or dropping him at the police station. We couldn’t do that so we contacted CID to get advice and advocacy, which enabled us to get Bodhi a place in the home.’’

Also at the rally was Mount Warrigal advocate Sharon Holz, who works for the Physical Disability Council of NSW. ‘’The aim is to empower people … to teach them how to speak up for the things they might need in life,’’ she said.

Kate Galloway, of Information on Disability and Education Awareness services, is also concerned about the future of advocacy. ‘’Our board is very determined not to charge our service users so without funding we won’t exist,’’ she said.

Illawarra Labor MPs Paul Scully and Sharon Bird also denounced the cuts to the region’s most vulnerable at Thursday’s rally.

‘’The government and Premier (Gladys Berejiklian) claim that compassion is at the heart of their decision making,’’ Wollongong MP Mr Scully said.

‘’But at the same time they’re reducing funding for advocates for disability, those who push for people with disabilities to have a better existence and easier access to things everyone else takes for granted.’’

Mr Scully said NSW Labor had committed to restore the $13 million in disability advocacy funding across the state if elected in 2019.

‘’This funding is vital – it’s not just about getting access to services and supports for individuals, it’s about advocacy for bigger issues,’’ he said.

‘’For instance the issue of lift access at Unanderra train station would not have remained on the agenda without the support of disability advocacy groups.’’

Cunningham MP Ms Bird said the loss of advocacy groups would hit rural and regional areas, including the Illawarra, hardest.

‘’The National Disability Insurance Scheme is an important change for people in determining their needs, and making sure those needs are addressed,’’ she said. ‘’However the thing it wasn’t designed to do was to fund advocacy groups – that should be done by state government.’’

However a Department of Family and Community Services spokeswoman said advocacy providers had received record funding to prepare for the reform.

‘’NSW has provided additional funding of $1.7 million to assist advocacy and information providers with meeting expected additional demand for their services during the transition period,’’ she said.

‘’NSW has also provided $1.5 million in supports to assist advocacy and information providers to be ready for the NDIS.

‘’We will continue to fund advocacy and peak groups that support people across the NSW community, including people with disability, to access mainstream services that will continue to be the responsibility of NSW such as health, mental health, housing and education.’’

The spokeswoman said the Commonwealth had responsibility for funding systemic advocacy under the new national model through the National Disability Advocacy Program.