Children with cleft lip and palate lack speech pathology

Australian children with cleft lip and palate are being forced to forego vital speech-language pathology services due to 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.

Each year in Australia, about 400 babies are born with the condition, in which the lip or palate, or both, fail to connect properly in early pregnancy, leaving a ‘cleft’ or opening.

Jack, who is now 10 years old, had his first corrective surgery when he was seven months old and has had multiple surgeries since. He has many more ahead of him.

Janeane Wolfe’s son Jack, who is now 10, pictured as a baby. (Supplied by Janeane Wolfe)

Even now, Jack struggles with his speech, and with each operation he’s had to learn different methods of making the same sounds, Ms Wolfe said.

“He definitely needs speech pathology,” she said.

“For someone who doesn’t know him, it can be really difficult to understand him, especially when he’s excited and animated.

“He gets teased because he doesn’t talk like everyone else.”

However, because speech therapy costs about $190 per session, Ms. Wolfe couldn’t afford it, Ms. Wolfe said.

“You weigh, you pay your mortgage, you put food on the table and you pay your bills. Or are you spending that money on something you really can’t afford?”

Until late last year, Jack was insured for some speech-language pathology sessions through the National Disability Insurance Scheme (NDIS), Ms Wolfe said.

However, this was canceled when his plan was reviewed.

“Funding just got taken away. They just said he didn’t need that anymore, he should have outgrown it,” Ms. Wolfe said.

“But it doesn’t just grow into a cleft child.

“All we want is for the government to give them a fair chance.”

A online petition A call for the federal government to include subsidized speech-language pathology sessions in Medicare’s cleft lip and palate program has attracted nearly 9,000 signatures so far.

The petition was started earlier this month by Victorian mother Jessica Beckman, whose three-year-old son Ethan has a cleft lip and palate.

Jessica Beckman's son Ethan.  Ms Beckman has started an online petition calling for subsidized speech pathology to be funded for children with cleft lip or palate.
Jessica Beckman’s son Ethan. Ms Beckman has started an online petition calling for subsidized speech pathology to be funded for children with cleft lip or palate. (Supplied: Jessica Beckman)

Ms Beckman said many parents have either been turned down or struggled for years to gain approval for speech therapy through the NDIS, which the program usually requires at least two different impairments to meet funding criteria.

“There are too many children who are developmentally delayed because they don’t have access to early intervention, leading to other mental anguish for our children and their families from being excluded from school and being bullied for not being able to speak properly” , she said.

Children with cleft lip and palate have access to five Medicare-subsidized speech pathology sessions per year under the Chronic Disease Management program, Ms. Beckman said, but in reality they often need 10 times that amount.

Tim Devlin is the membership coordinator for the NSW arm of advocacy group CleftPALS.

Mr Devlin has a four-year-old son, Josh, who has a cleft lip and palate.

Mr Devlin said his wife had struggled for two years to get NDIS funding for Josh’s speech-language pathology sessions, which had been a “massive paperwork and logistical nightmare”.

Josh pictured before and after his first surgery.
Josh pictured before and after his first surgery. (Supplied: Tim Devlin)

During that time, he estimated the cost of his son’s private speech therapy had totaled around $6400.

“We were fortunate that my wife wasn’t working when Josh was little, so she had the time to fight that, and she’s got a college degree so she can argue with the best of them about what’s needed,” he said.

“But if you don’t have the time, or you’re a single parent, or you’re not that good at arguing your case, you have very little chance of getting funded.”

Mr Devlin said there is an apparent need for subsidized speech pathology sessions for children with cleft lip and palate that is not being adequately met by Medicare or the NDIS.

He said the Medicare cleft and health care system, which currently only helps with dental and orthodontic expenses, could logically expand to include speech pathology.

A spokesman for Federal Health Secretary Greg Hunt said in a statement, “The Morrison government takes the responsibility of assisting people with cleft lip and palate very seriously, so our government supports people with cleft lip and palate through Medicare.”

A 2020 review of Medicare items for cleft lip and palate services by the Medicare Benefits Schedule Review Taskforce led to the decision to extend subsidized dental and orthodontic services to all patients starting in July next year, rather than phasing them out after 22 years cut of age, the statement said.

The spokesman said the Medicare Review Advisory Committee is reviewing the Medicare benefit plan to ensure it “remains timely and provides universal access to the best possible medical services.”

A spokesman for the National Disability Insurance Agency (NDIA) said in a statement that NDIS participants received “critical health care through the health and hospital system.”

“Speech therapy after cleft lip and palate surgery is considered a health responsibility,” the spokesman said.

“A child under the age of 6 may be enrolled in the scheme with developmental delays, although after the age of 6 it must be shown that the child is able to meet all the requirements … of the NDIS Act in order to continue gaining access to the scheme . ”

Contact reporter Emily McPherson at [email protected]

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