Family says Penny will be left 'floundering again' without DeafBlind Hub

Miss Nielsen has attended the Community Disability Alliance Hunter's (CDAH) DeafBlind Hub for the past two years.

But the program will be forced to end without federal funding, after missing out on the latest round of NDIS grants.

Her parents take the two-hour plus drive each way from Gloucester on a fortnightly basis to attend the Newcastle hub which they say has been invaluable.

Without the DeafBlind Hub, there is no one for Miss Nielsen to talk to, her father Paul Nielsen said.

"It will mean she will no longer have any interaction with her peers, and no conversation," he said. "They've been a fantastic help for us."

Miss Nielsen's loss of sight started to accelerate a couple of years ago, Mr Nielsen said, after growing up with reasonable daytime sight and using sign language to communicate.

The next step, as her eyesight diminished, was to use a communication book, writing questions in red and answers in black.

"But it got to the stage where she couldn't read, so we had just no way of communicating," Mr Nielsen said.

"We got a speech therapist to try and help and she came and spent some time with us but she said it was outside her area of expertise."

They were given CDAH's contact details and have been attending the hub ever since.

"Penny really shines having contact with other deaf and blind people, to know she is not alone, and it's just been a game changer for us," Mr Nielsen said.

And they have met "some amazing people", Miss Nielsen's mother, Claire Nielsen said.

"If they close down, we'll be floundering again," Mrs Nielsen said.

"Penny just has no other contact," Mr Nielsen said. "She attends a day program but nobody there signs, let alone tactile signing, a couple of them try to do some finger spelling but otherwise it's just led by the hand and it's very, very difficult. It's very isolating."

The fortnightly sessions have become more valuable than ever because there are things Miss Nielsen, who also lives with an intellectual disability, used to enjoy that she can no longer do, such as reading, colouring in, and find-a-word puzzles.

The program's funding will come to an end on June 30 after it missed out on federal funding.

It was not named among the recipients of the $90 million Individual Capacity Building competitive grant round decided by a delegate of the Department of Social Services.

CDAH is continuing to lobby for funding among with many other disability service providers left out of the latest round of NDIS funding.

CDAH's Deaf Blind Connect program, which has run for four years, brings together members of the deaf blind community with trained tactile interpreters.

It involves hours of preparation coordinating with house managers, access workers, support staff, and individuals.

CDAH chief executive officer Andrew Vodic said the organisation had fielded many inquiries from affected members of the community.

"CDAH is very thankful for the support from the Hunter community and particularly from individuals and families affected by the recent decision by the Department of Social Services not to fund the DeafBlind Hub or our Community Connections programs," Mr Vodic said.

"Although we have not received any word from the federal government, we are very hopeful that at least some level of funding will be made available to support these groups into the future.

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 majority of the residents of those places, people living with complex, 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.

A joint press release from the Minister for the National Disability Insurance Scheme of Australia Bill Shorten and the Minister for Social Services Amanda Rishworth issued last week (June 5) hinted at more funding to come, but so far have provided no clarity over what that will mean for existing services.

A review of the NDIS made recommendations regarding support for people with disability to access the information they need to engage with local mainstream, foundational, and NDIS supports, a category which takes in the Deaf Blind Connect.

The government is yet to respond to the review which it says will come later this year.