My son Ethan is affected by cleft and palate. Not having a palate makes speech, language and communication difficult and this affects his development and behaviour. This affects me because speech pathology services are not free and families pay more than $190 per private session, most families cannot afford this on a regular base the child is the one who suffers. 

The Cleft Palate and Lip Society (CleftPALS) was established to provide support, reassurance, and knowledge to parents and their families of a child born with cleft condition. Branch groups exist in NSW, Queensland, and Victoria (supporting families in Victoria, South Australia and Tasmania). CleftPals is a not-for-profit charity that is supported by a small and dedicated volunteer committee. Our aim is to support the families through the emotional and physical journey of having a cleft, from infancy all the way through to adulthood. This is the time to help.

We are lobbying for speech pathology services to be included into the already existing Medicare Cleft Scheme.

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. The child and the family suffers by only having 5 Medicare-subsidised speech pathology sessions a year under the Chronic Disease Management scheme, when in reality what they really need in those early intervention years is something like 50 sessions a year.

Advocacy is a big role that cleftpals Victoria plays in the community. To do this we need passionate people to keep fighting for all the rights and needs of the cleft community. 

From 2019 till now we have been pursing inclusion of speech services under Medicare for cleft-affected people through federal government. We have been in discussions with Dept of Health and federal MP. Some that have been in support and had meeting with are Ged Kearney, Mike Freelander, Kate Thwaite, Jordon steel, Aaron Violi, we are still working with federal MP to gain access to speech in the cleft lip and palate Medicare scheme. 

During this time, we have been working together with Speech Pathology Australia on building awareness on speech needs of cleft-affected people with government relevant decision-makers. 

We play an important part in being the voice of the community and fighting for the right and needs of cleft affected people when they can.  not.