Kate Galloway was only 31 when she was diagnosed with early onset macular degeneration.
It wasn’t easy for her to come to grips with the disease which leads to low vision and blindness, but information and support from an advocacy group helped her through.
A decade on, Ms Galloway is providing similar support to people with all types of disabilities, their parents and carers, as the Illawarra co-ordinator of IDEAS.
However IDEAS (Information on Disability Education and Awareness Services) and other disability advocacy groups are facing a bleak future with state government funding set to run out by July.
Ms Galloway said around 50 groups could close after the transition to the National Disability Insurance Scheme (NDIS) is complete.
“The NSW is cutting funding to advocacy organisations – and it’s not something that can be added into an NDIS package,” she said.
“Groups like IDEAS will be forced to either start charging people, find alternative funding, or even close.”
Ms Galloway said IDEAS, which operates nationally, supported people with a disability to make informed decisions through the provision of specialised information and resources.
It was a vital service, particularly in regional areas like the Illawarra where people struggled to access the information and services they needed.
“The loss of IDEAS for the community would be devastating,” she said.
“Currently we are the only independent disability information service that does not charge users or organisations a fee.
“IDEAS empowers its customers to gain choice and control … and it also empowers its employees by believing in us, and providing us with a work environment that is supportive and full of opportunity.”
Ms Galloway said personal experience had taught her the value of such advice and experience.
“I went through a grieving process when I was diagnosed with early onset macular degeneration – a condition that usually affects much older people,” she said.
“I thought that I’d have to stop working, that I’d never finish my degree in information services, that I’d have to give up reading. It was very depressing.
“But then I contacted Vision Australia – and they showed me how much help there was available for people with disability.
“That’s why advocacy and support is so important.”
Ms Galloway said IDEAS was part of the NSW Disability Advocacy Alliance which was running the Stand By Me campaign to fight for funding.
IDEAS has also launched its own petition against the changes, which gained more than 2000 signatures in the last week alone.
However NSW Disability Services Minister Ray Williams said advocacu providers had received funding to prepare for the reform.
“We recognise the transition to the NDIS is a period of change for people with disability and disability service providers,” he said.
“That is why the Commonwealth will provide around $130 million each year to connect people with disability to support services.
“The funding is on top of the $10.6 million the NSW Government has provided for advocacy services during the transition to the full scheme.”