Kempsey mother Margaret Vale is disappointed at the National Disability Insurance Agency’s (NDIA) decision to stop funding for Oral Eating and Drinking Care Plans for people with intellectual and physical disability, which will put her daughter Ellen Toby’s life at risk.
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The announcement is a disaster for Ellen, who contracted a rare virus which spread to her brain, caused severe encephalitis, inflammation of the spine, cerebral palsy, seizures and stroke when she was three-years-old.
The virus left the now 20-year-old, who is non-verbal, relying on full-time care.
Ellen suffers from dysphagia and is hand-fed every meal. Eating for Ellen is a timely and complicated process professionally designed to protect her from the constant risk of choking.
Mrs Vale claims it will be impossible to give Ellen the appropriate support to maintain a humane lifestyle if the NDIA follows through with their plan.
“It’s heart-wrenching and shattering, the care she receives now keeps Ellen in good health and spirits and if it was taken away then I don’t know how we would cope,” Mrs Vale told the Argus.
“Ellen’s life is in danger every time she eats.
“I am a working mother but I can’t afford the additional healthcare costs if the NDIA change their funding.”
The NDIA declared swallowing difficulties and the risk of choking are health risks and should be handled by the health system.
The decision will restrict Ellen to five Medicare-subsidised allied health services a year.
Mrs Vale fears under the new scheme, Ellen will lose more of her basic motor skills.
“I am scared she will lose her therapy and time with trained professionals,” Mrs Vale said.
“Without this, I believe she will lose more of her functions, it will worsen and that’s heartbreaking.”
Ellen currently receives treatment from professionals once a fortnight and Mrs Vale believes that isn’t enough, but if the new proposal is accepted it will drop further.
A recent report released by the NSW Ombudsman found 65 per cent of the disability services residents who died between the years of 2002 and 2017 had swallowing difficulties.
"Our reviews over the past 15 years have shown that 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 [as to action]," the report read.
Choking was a factor in the deaths of 30 people with intellectual and physical disabilities, since 2010.
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