Give our Kids a Voice

CleftPALS Crusades: Give Our Kids A Voice

November 8, 2007

CleftPALS Australia today announced their campaign to convince the government their children should be able to access and afford speech therapy. All active state members as well as Speech Pathology Australia support the campaign, named “Give Our Kids A Voice”.

The main aim of this campaign is to have speech therapy added to the Medicare Cleft Lip and Cleft Palate Scheme, which currently subsidises some of the additional dental and orthodontic treatments that children with a cleft palate are likely to endure. This scheme has been in place from many years and has been very successful in supporting the financial needs of these children and their families.

“CleftPALS beleives this support needs to be extended to include speech therapy, as this is also an important part of the treatment that these children require,” says Roslyn Currey, President, CleftPALS Australia.

“Children with speech and language disorders are at significantly increased risk of literacy difficulties, poor academic outcomes, social, emotional and behavioural difficulties, and ultimately reduced life choices.”

“It is imperative that we enable a system that prepares and equips our children for the social and educational demands of school life and beyond.”

CleftPALS deliberately chose this day to launch the Give Our Kids A Voice campaign, as it marks the beginning of National Cleft Awareness Week, and as part of the celebrations each state will host its own Give Our Kids A Voice activity, culminating in a loud song from the children.

NSW - Walkathon & family picnic, Nov 11th at 9.30am Shelley Beach, Cronulla WA – Walkathon & family picnic, Nov 11th at 9.00am Deep Water Point, Mt Pleasant Victoria – Rally and Sing-Along, Nov 18th at 1.30pm on the Parliament Steps, Melbourne Details of the other state activities are available on their websites.

Download the Petition form.

Download the Policy Discussion paper.

For further information about this campaign, please contact;

Tracey Law
CleftPALS Australia (Vic)
(03) 9591 0435
0408 882 038
tracey.law@bigpond.com

Roslyn Currey
CleftPALS Australia (NSW)
(02) 9294-8944
rcurrey@exemail.com.au

Neeva Stephen
CleftPALS Australia (WA)
(08) 9401 3920
keeva@iinet.net.au

Leanne Mitton
CleftPALS Australia (SA)
(08) 8381 9343
cleftpals_sa@chariot.net.au

Jonelle Ungerhoffer
CleftPALS Australia (Tas)
(03) 6382 3141
jungerho@bigpond.net.au

Additional Information about CleftPALS and this Campaign

“Give Our Kids A Voice”

  • Most children born with a Cleft Palate will require speech pathology (speech therapy)


  • Early assessment and intervention is critical to the success of speech therapy


  • The Public system is overloaded with patients waiting between 6 months and 2 years for treatment


  • The Private system is currently prohibitively expensive which makes it difficult for families to access


  • Effective speech skills are critical for language development and literacy


  • Poor Speech has a negative impact on self-esteem, confidence and social skills


  • Approximately 300 new families each year will seek speech pathology services for their child with a cleft


  • The infrastructure needed to support these children already exists in the Medicare Cleft Lip and Cleft Palate Scheme


CleftPALS - The Cleft Palate and Lip Society

provides feeding equipment for babies born with a cleft condition, and information and support to their families.

  • One in every 700 babies in Australia is born with a cleft making it one of the highest incidences of birth defect. In about one third of families there is a relative also born with a cleft. For the remainder there is no family history.


  • A cleft occurs when the lip and / or the palate fail to fuse.


  • A cleft lip is a split in the upper lip. The lip is formed when two tabs of skin unite from the sides of the face at around 4-6 weeks of gestation, and a failure to fuse results in a cleft lip.


  • A cleft palate is a split in the roof of the mouth, resulting in an opening between the mouth and the nose. Tissue grows in from the sides of the upper jaw and joins in the middle to form the roof of the mouth (palate), during the first two months of pregnancy. Failure to fuse results in a cleft of the palate.


  • Babies may be born with a cleft of the lip OR a cleft of the palate OR a cleft of the lip & palate.


  • The cleft can affect one side (uni-lateral) or both sides (bi-lateral) of the lip and / or palate.


  • Detection - many clefts are now being diagnosed by ultrasound. Those that are not detected this way will usually be diagnosed at or soon after birth.


  • Up to 28 years of treatment may be required by cleft patients.


  • Clefting is associated with over 250 syndromes. The most common is Robin sequence (Pierre Robin syndrome).


  • Feeding
    When a baby with a cleft is born there is usually feeding problems. Feeding problems can occur with any cleft type but more so when the cleft affects the palate. The severity of the cleft doesn’t necessarily determine the degree of difficulty with feeding. Babies born with a cleft of the lip only can usually be breastfed; it often requires positioning the baby in a way that the cleft is filled with breast so that a seal is created. A cleft of the palate interrupts normal suction, as a seal cannot be created. A baby with a cleft involving the palate or lip & palate requires special feeding.
    - Breastfeeding may be achieved (although not in the traditional sense) by expressing the milk into the baby's mouth and allowing the baby's jaws to "milk" the breast.
    - Expressing breast milk and feeding it through a bottle.
    - Formula fed through a bottle.
    - Special bottles and teats are usually required and CleftPALS has information on these.


  • Surgery to repair the cleft
    - a cleft lip is usually repaired between 0-6 months
    - a cleft palate is usually repaired between 6-12 months of age
    - different hospitals have different timing schedules
    - timing of repair can be dependant on many factors child baby’s growth / health / tissue growth / severity of the cleft hospital timing schedule / availability of beds and surgery time


  • Ear Problems
    The palate operates the opening and closing of the Eustachian tube (which drains fluid from the ears), so if you don't have a palate, this function does not occur. Many children with a cleft involving the palate have repeated ear infections and a condition called "Glue Ear". The constant fluid in the ears means many of these children don't hear properly. Grommets are often required to treat this problem, and will usually be inserted at the time of palate repair if required. Throughout early childhood grommets may be required repeatedly until the Eustachian tube matures and begins to function on its own.


  • Speech Problems
    Children who have had fluid on the ear resulting in hearing loss often have delayed speech. This combined with the fact that these children have been fed differently (meaning their jaw muscles are often not as well developed), and have a palate that may not function "normally" means some will need speech therapy. Some children with a cleft require no therapy at all, others require a little help with pronunciation, and others require intensive work and sometimes surgery to correct problems also.


  • Orthodontic Treatment
    A child with a cleft may have mis-shaped teeth, missing teeth, extra teeth, or a crooked arch, and may require orthodontic treatment (straightening of the teeth) at some stage. Where the cleft has affected the gum and hard palate, a bone graft may be required to create a spot for the teeth to come through. Every person with a cleft, whilst under the age of 22, is entitled to extra Medicare benefits for dental and orthodontic treatment.