Judy Harper was shocked when doctors first asked her to agree to not resuscitate her friend with Down syndrome, as she fought for life in the intensive care unit of a NSW hospital.
"I was furious, I had to keep fighting really hard for them to understand her condition," Ms Harper, the legal guardian of 48-year-old woman, Chris, says.
Physicians at the regional hospital only started paying attention once a specialist nurse attached to the NSW Ageing, Disability and Home Care (ADHC) department spoke to them.
"I suppose they took her more seriously and she was able to navigate and consult with them better so we could get Chris the right treatment," Ms Harper said.
The nurse has been treating Chris through a specialist ADHC service for the past 15 years.
But her role will come to an end in June 2018 as the service loses funding due to the implementation of the National Disability Insurance Scheme.
It's one of many unique health services likely to shut as the NSW government relinquishes funding responsibilities to the Commonwealth during the transition.
Ms Harper, who also sits on the board of the Council of Intellectual Disability NSW, fears many disabled people could die unnecessarily as the scheme is rolled out.
"Hospitals are rarely equipped to adequately meet the needs of people with disabilities and this is where these specialist access services come in, especially in regional areas," the south coast resident told AAP.
"We're also in big danger of losing all that expertise these clinicians gain having worked in the system for such a long time," she said.
Ms Harper will raise her concerns at the Forum to End Deadly Disability Discrimination at NSW Parliament on Friday, to be attended by Disability Services Minister Ray Williams and opposition spokeswoman Sophie Cotsis.
The forum will be presented with UNSW research released earlier this year which found people with an intellectual disability were twice as likely to suffer a potentially avoidable death compared to the general population.
The sector was thrown into the spotlight this week after Newcastle-based NGO disability service, Lifestyle Solutions, was put under review by the NSW Ombudsman following revelations of deaths and alleged abuse and neglect of disabled people in its care.
