Media release: Tanisha Flemming is the only person in the world with a genetic condition so rare, it doesn’t even have a name. Her mother Bronwyn calls it ‘Tanisha Flemming Syndrome’. A duplication of chromosome 5q and a deletion of 18p have left the 19-year-old from Port Macquarie with intellectual and physical disability.
As part of her disorder Tanisha has Oral Motor Dysphagia, meaning she struggles to swallow her food and is at risk of choking every time she eats a meal. This condition is degenerative and will get worse over time.
Bronwyn was relieved when the NDIS plan initially allowed for a speech therapist and an occupational therapist once a fortnight to help with Tanisha’s swallowing. As a result Tanisha was choking much less and her swallowing muscles were strengthening.
However, when Tanisha received her second NDIS plan in September, the swallowing therapies had been removed. As a result Tanisha has started choking again. She needs to be elevated all the time so her food doesn’t come back up her throat. Without her regular therapy, Tanisha’s swallowing muscles have weakened, her fine motor skills and gross motor skills are less responsive and she has a significantly greater risk of choking.
“It is life threatening and Tanisha now needs family or support workers with her all the time. She needs 24/7 care because of the choking,” her mother Bronwyn says.
This drastic change to her most recent NDIS plan was not discussed with Bronwyn. There was no contact from the person who made the decision to remove swallowing therapy, and they don’t even know who put the plan together.
Jim Simpson, Council for Intellectual Disability (CID) Senior Advocate says “Right around Australia, State disability services provided swallowing therapy and so did the NDIS until late 2017.”
“Swallowing therapy is vital to keep people with disability safe from choking and death and allow them to get out of the house and live the lives they choose. The NDIS has the moral and legal responsibility – as well as the budget – to continue this vital funding.”
CID has been pressing the issue with the NDIA and Families and Social Services Minister Paul Fletcher and they have been talking to the States about it for many months. The issue remains unresolved. It is unacceptable that people may even die while governments talk.
See also www.nswcid.org.au/HardtoSwallow.
Published 6 December 2018
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