'Out of sight': People with disability abandoned while 'no one's watching'

The Hunter's deaf blind community have woken up to the devastating news that the Deaf Blind Connect run by the peer-led Community Disability Alliance Hunter (CDAH), has missed out on federal funding.

Those people have fallen through the cracks, and no one's watching, says CDAH chief executive officer Andrew Vodic.

"It means we won't be able to do some of the most valuable work that we do and work that has undoubtedly become a necessity due to the closure of the large residential centres in NSW," Mr Vodic said.

"People will now have little or no connection to the community."

There are only two trained tactile interpreters in the Hunter, and they're not in group homes, he said.

"Which means that you spend 13 out of 14 days a fortnight sitting at home with no actual communication, people basically shoving medication at you and pushing you and moving you around without talking to you," Mr Vodic said.

"And the only time you get any communication is when you come here."

CDAH's Deaf Blind Connect program, which has run for four years, brought those people together with trained tactile interpreters, which involved hours of preparation coordinating with house managers, access workers, support staff, and individuals.

Many travelled large distances to attend, Mr Vodic said, including one man who regularly navigates a 12 hour trip, a woman from Sydney who travels five hours each way, and a 42-year-old woman brought to attend by her parents who travel three hours each way.

The organisation will take a 65 per cent hit with the lost funding, and leave people who are 'out of sight' in the lurch, Mr Vodic said.

The Hunter is in a unique position because of the closure of three large residential centres in the region: Stockton, Kanangra and Tomaree. The residents of those places, people living complex, and high-support needs, are now living in supported independent living, either in group homes or on their own, but still have no one they can communicate with and so "are no better off", Mr Vodic said.

Their National Disability Insurance Scheme funding covers paid supports but for the majority of the deaf blind community, those professionals, or more often than not untrained personnel, are unable to communicate with them, he said.

It was through CDAH that the deaf blind community learned what COVID-19 was, as well as other issues of critical importance, such as the referendum.

The loss of funding also meant the jobs of those supporting the community were now on the line, while the federal government continues talks with state governments about where the funding for anything outside of individual packages, now known as 'foundational funding', will come from.

"It's very easy to make decisions that affect people's lives when you just remove yourself from it and turn it into a process, and I don't believe there's been any real and genuine consultation between the Department of Social Services and the NDIA (National Disability Insurance Agency)," Mr Vodic said.

Without the Deaf Blind Connect, the Royal Disability Commission would never have heard the voices of people living with that dual sensory loss. The Commission came to Newcastle to hear from them during a two-day closed hearing advocated for and organised by CDAH.

The stories that were shared included from people who had been written off as having an intellectual disability while living in residential centres when that was not the case.

"We've been around for ten years, we know what we do works, and we've become specialised in working with those groups who are most marginalised, people living in SIL (Supported Independent Living) and the deaf blind community."

CDAH is not the only organisation writing to the Minister Bill Shorten and the NDIA after missing out on funding. In Western Australia, organisations say they have received $5 million of the $90 million allocated over three years.

The department has been contacted for comment.