Calls to close cleft cost gap

A new campaign aims to help cleft children and their families cover the cost of the services, surgeries and therapies they need to develop critical communication skills.

Every year more than 400 babies are born with a cleft condition in Australia. Up to 75 per cent of these children will have a severe defect that requires significant surgery and intervention, including ongoing speech therapy.

But there are barriers to accessing that critical support, including prohibitive costs and lengthy public waitlists.

CleftPals Victoria is looking to change that with a new campaign aimed at getting politicians on board with their message. 

CleftPals is calling on the government to provide speech therapy services for cleft kids as part of the National Disability Insurance Scheme (NDIS) and subsidised on the Medicare cleft lip and palate Medicare scheme.

“We’re lobbying hard to get our voices heard and allow speech access for our cleft children,” said CleftPals Victoria committee president Bridie Roberts.

She said subsidising speech therapy would make a “world of difference”.

“We have concerns that children born with cleft lip and palates are being left behind. That’s because of the lack of affordable speech therapy. A lot of parents have to source speech therapy privately and the costs can range from $300 for a consultation and $190 a session. You can go to a GP and get five free sessions, but five sessions for a child is not enough. Speech is crucial for these children in order to communicate properly,” she said.

As a kindergarten teacher, Roberts has witnessed the benefits of speech therapy for children, on their communication ability and on their social wellbeing. She said many cleft children were bullied for their speech problems, and speech therapy could alleviate those issues by helping children learn how to form words from an early age.

Long waitlists for public health services are making it difficult for families to access the therapy, but private costs are out of reach for many.

Roberts’ daughter was born with a cleft lip and palate and has been through extensive surgery and speech therapy. Roberts said despite going through the public system, she had to pay out of pocket for many services.

Her daughter is now thriving, she said, and is proud of her cleft.

“If I can make a difference to help other families in my situation get access to speech therapy and raise confident children, I’d be so proud,” Roberts said.

CleftPals is currently working on emailing MPs in electorates to gain their support, and they have commenced a petition and Twitter account to gather public support for the cause too. They have also called on allied health professionals to share the petition with their networks and through Facebook and Instagram.

“We’re not going to stop, we’re going to fight really hard for our children’s voices to be heard,” Roberts said.