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.
Judy Harper, member of the Board of Council of Intellectual Disability NSW, is advocating on behalf of many specialised disability services.
The passion had arisen in Judy after Intensive care doctors at a NSW Hospital requested a 'Do Not Resuscitate' on her patient and friend, 48-year old Chris. Chris has struggled with Down syndrome for her entire life, and Judy was willing to put in her own fight to ensure that Chris could live.
"I was furious, I had to keep fighting really hard for them to understand her condition," Ms Harper, Chris' legal guardian, says.
It only became more apparent to the Doctors of Chris' exact condition when a specialist disability nurse associated with the NSW Ageing, Disability and Home Care department spoke to them.
"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 be in attendance at the Forum to End Deadly Disability Discrimination at NSW Parliament on Friday. Also 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.
After the researchers recoded deaths previously attributed to an individual’s disability to reveal the underlying cause of death, they found 38% of the deaths in adults with ID were potentially avoidable, compared to 17% in the comparison group.