When Ellen was three-years-old she caught a rare virus that spread to her brain, caused severe encephalitis, inflammation of the spine, cerebral palsy, seizures and stroke. The now 20-year-old is non-verbal and relies on around-the-clock care. Her speech pathologist and occupational therapist have guided Ellen’s mother through mealtimes, thickening her food and monitoring her choking risk, feeding tubes and mouth hygiene. But Ellen’s family are fighting to keep this crucial support, with the National Disability Insurance Agency saying it will not fund Oral Eating and Drinking Care Plans – including swallowing assessments – for people with intellectual and physical disability. Loading Replay Replay video Play video Play video “Oh my god, I was very shocked and heart-saddened,” Ms Vale said.

“We are stuffed without these specialists.” NSW disability advocates have warned people with disability who struggle to swallow will die unless the decision is reversed. Margaret Vale feeding her daughter Ellen Toby, 20. Ellen needs 24-hour care and is at risk of choking during meals. Mealtime management and swallowing assessments have long been the purview of disability support services. But the NDIA now say it's the health system's responsibility. “It goes against the fundamental principle of what the NDIS is trying to achieve,” Ellen’s pathologist Simone Fitzgerald said.

“The health system doesn’t have the resources or the capacity to deal with this demographic of people.” Lawyer and Senior Advocate at the NSW Council for Intellectual Disability Jim Simpson said the decision defied logic. Loading Dysphagia was the result of disability and functional impairments among this group of individuals, Mr Simpson said. “The NDIA are taking a very narrow view of their responsibilities and their argument is just wrong," he said.

“Families are very desperately worried about this. “A whole lot of people are going to die if this therapy is taken away or done inadequately. We’ve seen it before." People with intellectual disabilities were twice as likely to die potentially avoidable deaths than the general public in Australia, a 2017 study found. Adults with intellectual disability died on average 27 years earlier than other Australians (54 versus 81-years-old), a disparity comparable to the life expectancy gap between Australia and South Sudan. A recent NSW Ombudsman report found between 2002 and 2017, 65 per cent of disability services residents who died had swallowing difficulties.

Choking was a factor in the deaths of seven people in 2014-15 and four people 2016-17. Ten people died from choking in 2012-13 and nine in 2010-11, according to the report released in August. NSWCID senior advocate Jim Simpson said people with disability and swallowing problems will die if they cannot access appropriate specialist assessments. The Ombudsman concluded "dysphagia has significant and often fatal implications for the health of people with disability”. “It is critical that people with disability in residential care and elsewhere have timely access to skilled speech pathologists to obtain an accurate assessment of their swallowing function and clear recommendations.” The NDIA says swallowing difficulties and the risk of choking are health risks and are most appropriately handled by the health system, including a Medicare rebate item, referring to the Chronic Disease Management Plan, through which patients can access a maximum of five Medicare-subsidised allied health services – such as speech pathologists – a year.

But this was “flagrantly inadequate”, Mr Simpson said, for people with disability who needed ongoing care and often have complex chronic health problems. He said the health system was not equipped with the appropriate expertise to manage mealtime and swallowing assessments. The money previously allocated to disability services for the assessments has been mopped up by the NDIS and should be carried on by the scheme, he said. The NSWCID is urging the federal Minister for Families and Social Services Paul Fletcher and the Disability Reform Council to reinstate NDIS funding for the services. The NSW Minister for Disability Services Ray Williams said: "I am aware that some NDIS participants have experienced issues with supports for swallowing problems and recognise the impact this has on them and their carers."

Mr Williams said the NSW Government was leading work with its federal counterpart to "urgently resolve the issue". "While we work to resolve this issue, NSW health services will continue to assess, diagnose and provide acute treatment for adults or children with feeding or swallowing difficulties, including those that arise from disability." A spokesperson for Minister Fletcher said the NDIS was not intended to replace all services that states provide for people with disability. “All governments, in consultation with the NDIA, are working together to resolve interface issues between the NDIS and systems for health, mental health, child protection and family support, justice, specialist school transport and personal care in schools,” the spokesperson said.