NDIA under pressure after funding for ‘lifethreatening’ condition axed
Tanisha Flemming chokes up to a dozen times in a day. She’s a quiet, wickedly funny 19-year-old, her mum says, but her stomach is constantly sore from all the coughing and gasping.
“I’ve had my son have to hit her on the back while I’m trying to dislodge whatever it is that’s stuck in her throat from the front,” her mother, Bronwyn, said. “He just knows. He sees me run in to help Tanisha and he’s right there. He’s only 10.”
Tanisha, who lives in Port Macquarie with her mother and brother Harley was born with a rare genetic condition that means she has intellectual and physical disabilities as well as dysphagia.
She receives her meals through a tube for nutrition but also eats and drinks orally. “If I stop her from eating, it’s been explained to me … she will soon forget how to eat,” Bronwyn said. “It can be within a week.”
In September, the Flemmings lost NDIS funding for speech therapy to help with Tanisha’s swallowing after only six months of treatment, which her mother and her specialist say is vital to help keep her safe and give her a decent quality of life.
“Tanisha was not only speaking clearer, she was getting exercises for her muscles in her mouth and her throat,” Flemming told Guardian Australia. “We’ve been waiting for years and years and years for speech therapy and occupational therapy … then we thought that, once the NDIS took over, it would eliminate that queue. Now that’s been pulled out from under us as well.”
Ahead of a meeting between federal, state and territory ministers responsible for disability issues, advocates have highlighted Tanisha’s situation to demand the federal social services minister, Paul Fletcher, restore National Disability Insurance Scheme (NDIS) funding for swallowing therapy.
Some participants and some families such as the Flemmings only learned the funding was no longer available after renewing their NDIS plans.
Bronwyn said that, without therapy, she was more fearful her daughter would choke to death.
“It’s a life-threatening condition and I don’t think they have a right to take therapy from those who require it,” she said.
After the creation of the NDIS, swallowing therapy supports were briefly offered through NDIS plans until the National Disability Insurance Agency (NDIA) removed the funding in late 2017.
“In terms of history, [it’s been an] NDIS responsibility,” Jim Simpson, a senior advocate at the Council for Intellectual Disability, told Guardian Australia. “We are calling on them to perform that responsibility.”
Pip Cullen, the managing director of All Together Therapy and Tanisha’s occupational therapist, said staff were “highly concerned” for her because her swallowing needed to be closely monitored.
“Someone within the government needs to step up and look out for these vulnerable individuals,” Cullen said.
A Department of Social Services spokeswoman acknowledged “the importance of providing appropriate supports for people with dysphagia”.
She said all governments were “committed to resolving issues associated with oral eating and drinking supports and the associated roles and responsibilities related to dysphagia”.
“These issues are being worked through by the Disability Reform Council to find a resolution,” the spokeswoman said.
In a statement, the NSW minister for disability services, Ray Williams, told Guardian Australia that NSW Health “continues to assess, diagnose and provide acute treatment for people with feeding or swallowing difficulties, including those with disability”.
“As part of the implementation of the NDIS, the NSW government is leading work with the federal government to ensure that NDIS participants with feeding or swallowing difficulties receive appropriate supports,” he said.
The National Disability Insurance Agency was contacted for comment.