My son Ethan is affected by cleft and palate. Not having a palate makes speech, language and communication difficult, as this affects his development and behaviour. This affects me because speech pathology services are not free and NDIS is very difficult and time consuming. Families pay more then $190 per private session, most families can not 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. We are also asking for the cleft palate condition to be recognised as a lifelong disability under NDIS. 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. NDIS is also failing cleft-affected families by not allowing all families in to this scheme. 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 they really need in those early intervention years is something like 50 sessions a year.