Australian children with cleft lip and cleft palate are being forced to go without vital speech pathology services because of a lack of government funding, parents say.
Victorian nurse Janeane Wolfe, from Geelong, was 20 weeks pregnant with her son Jack when she was told he had a cleft lip and palate.
Every year in Australia, about 400 babies are born with the condition, where the lip, or the roof of the mouth, or both, doesn't join properly in early pregnancy, leaving a "cleft" or opening.
Jack, who is now 10 years old, had his first corrective surgery at the age of seven months, and has had multiple operations since. He has many more to come.
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Even now, Jack has trouble with his speech and, with each operation, he needed to learn different ways to make the same sounds, Ms Wolfe said.
"He absolutely desperately needs speech pathology," she said.
"From someone else who doesn't know him, he can be really quite challenging to understand, especially when he gets excited and animated.
"He gets picked on because he doesn't speak the same as everybody else."
However, with speech therapy costing around $190 a session, it was something Ms Wolfe said she could not afford.
"You're weighing up, do you pay your mortgage, put food on the table and pay your bills. Or do you spend this money on something that you really can't afford?"
Up until the end of last year, Jack was covered for some speech pathology sessions through the National Disability Insurance Scheme (NDIS), Ms Wolfe said.
However, this was cut off when his plan was reviewed.
"The funding just got taken away. They were just saying he doesn't need this anymore, he should have grown out of it," Ms Wolfe said.
"But a cleft child doesn't just grow out of this.
"All we want is for the government to give them a fair go."
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An online petition calling on the Federal Government to include subsidised speech pathology sessions in Medicare's Cleft Lip and Cleft Palate Scheme, has so far attracted almost 9,000 signatures.
The petition was started earlier this month by Victorian mum Jessica Beckman, whose three-year-old son Ethan has a cleft lip and palate.
Ms Beckman said many parents were either rejected or struggled for years to get approval for speech therapy through the NDIS, with the scheme usually requiring at least two different impairments to meet funding criteria.
"There are too many children suffering from developmental delays from not having access to early intervention, which leads on to other mental anguish for our children and their families from being excluded and bullied at school for not being able to talk properly," she said.
Children with cleft lip and palate can access five Medicare-subsidised speech pathology sessions a year under the Chronic Disease Management scheme, Ms Beckman said, however, in reality, they often needed ten times that amount.
Tim Devlin is the membership coordinator for the NSW branch of the advocacy group CleftPALS.
Mr Devlin has a four-year-old son, Josh, who has a cleft lip and palate.
For two years, Mr Devlin said, his wife had been fighting to get NDIS funding for Josh's speech pathology sessions in what had been a "massive paperwork logistical nightmare".
During that time he estimated his son's private speech pathology costs had added up to around $6400.
"We were fortunate that my wife wasn't working when Josh was little so she had the time to fight it and she's university educated so she can argue with the best of them, which is what's needed," he said.
"But if you haven't got time, or you're single mom or you're not as proficient in arguing your case, then you'd have very little chance of getting funded."
Mr Devlin said there was an obvious need for speech pathology sessions to be subsidised for children with cleft lip and palate, which was not being adequately met by either Medicare or the NDIS.
He said the Medicare cleft and health scheme, which currently only assists with dental and orthodontic costs, could logically be expanded to include speech pathology.
A spokesperson for Federal Health Minister Greg Hunt said in a statement: "The Morrison Government takes the task of supporting those with cleft lip and palates very seriously, that is why our Government provides support through Medicare for people for cleft lip and palate treatment."
A review of the Medicare items provided for cleft lip and palate services by the Medicare Benefits Schedule Review Taskforce in 2020 led to a decision to extend the subsidised dental and orthodontic services to all patients from July next year, rather than it cutting off at 22 years of age, the statement said.
The spokesperson said the Medicare Review Advisory Committee reviews the Medicare Benefits Schedule to ensure that it remains "contemporary and provides universal access to the best medical services possible".
A spokesperson for the National Disability Insurance Agency (NDIA) spokesperson said in a statement NDIS participants received "critical health care through the health and hospital system".
"Speech therapy following cleft lip and cleft palate surgery is considered a health responsibility," the spokesperson said.
"A child under 6 years of age may enter the scheme with developmental delay, though after the age of 6, there must be evidence that the child is able to meet all requirements … of the NDIS Act in order to continue to access the scheme."
Contact reporter Emily McPherson at em********@******om.au.
