Policy brief: Cleft lip and/or palate (CL � P)
Summary of key messages:
• A cleft is an abnormal opening above the lip and into the roof of the mouth. Cleft lip
and/or palate (CL � P) includes cleft lip, cleft palate, cleft lip and palate and submucous
cleft palate. Clefts are usually surgically repaired early in life, yet functional impacts are
lifelong.
• Relevant to speech pathology, a CL � P can affect early feeding, speech, language,
cognition and literacy development, and have flow-on effects to many other areas of life.
If not treated, difficulties can persist into adulthood.
• Individuals born with cleft require ongoing multidisciplinary care in tertiary and
community settings. Speech pathologists are a key member of the multidisciplinary cleft
team across both tertiary and community settings. They assess, diagnose and treat
feeding, communication and literacy difficulties. Treatment can have a positive flow-on
effect to psychosocial wellbeing and quality of life.
• Cleft-related speech disorder is most common, where structural deficiencies lead to a
series of speech errors that affect an individual’s ability to be understood and effectively
engage in conversations. This can pose challenges when engaging in social activities
and building relationships.
• CL � P has also been associated with poor reading, cognition and academic
achievement in the school years.
• Ongoing impacts of CL � P, including speech disorder and facial differences, mean that
individuals with cleft are at increased risk for behavioural and social difficulties such as
anxiety and depression.
• Inconsistent and limiting interpretation of the NDIS eligibility criteria poses a significant
barrier for many individuals with CL � P receiving the vital therapies they require to
optimise their lifelong potential.
This briefing paper highlights the key issues relating to CL � P, the role of speech
pathologists and current challenges with NDIS access.
About speech pathologists and Speech Pathology Australia
Speech Pathology Australia is the national peak body for speech pathologists in Australia,
representing over 13,000 members. Speech pathologists are university-trained allied health
professionals who specialise in diagnosing and treating speech, language, communication
disorders and swallowing difficulties.
Communication problems encompass difficulties with speaking, hearing, listening,
understanding, reading, writing, using social communication skills, and using voice.
Communication problems in children and young people can arise from a range of conditions
and may be present from birth (e.g., Fetal Alcohol Spectrum Disorder, Down syndrome),
emerge during early childhood (e.g., Speech Sound Disorder, Developmental Language
Disorder), or be caused from an injury or development of disease (e.g., traumatic brain
injury, head or neck cancer).
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What is CL � P?
Orofacial clefts are one of the most common birth defects affecting the facial profile,
occurring in around one in 700 births worldwide [1, 2]. A cleft is an abnormal opening above
the lip (cleft lip) and into the roof of the mouth (cleft palate or submucous cleft palate). A
baby can be born with a cleft lip only, a cleft palate only or both a cleft lip and palate. Clefts
are surgically repaired with one or more operations, generally within the first 18 months of
life, however functional impacts can remain with an affected individual throughout their
lifetime.
The impact of CL � P
After initial surgical repair, individuals born with CL � P often require ongoing speech
pathology, surgical, dental, orthodontic, genetic, paediatric, hearing and psychological input
[3]. In addition to primary surgical repair, affected individuals often require further surgical
procedures (e.g., plastics, dental, ENT, orthognathic) at varying time points from pre-school
years through to adulthood. The stigma, difference (e.g., speech disorder and facial
difference), and negative impacts associated with CL � P have also been linked with
psychosocial burdens, such as behavioural and social difficulties, anxiety and depression [4,
5]. Consequently, a cleft can impose a significant ongoing burden on health, quality of life,
interpersonal relationships and socioeconomic participation, even after the cleft has been
surgically repaired [5].
Impacts of CL � P are experienced by individuals with both syndromic (i.e., cleft as part of a
known genetic syndrome) and non-syndromic (i.e., cleft occurring without an apparent
syndrome) forms. This document focuses on the impacts of an isolated cleft. Individuals with
syndromic clefts may also need additional supports depending on the nature and
characteristics of the given syndrome.
Relevant to speech pathology, a cleft can affect early feeding, speech, language, cognition
and literacy development. Feeding complications are present immediately after birth, where
an open palate restricts an infant’s ability to generate adequate intra-oral pressure for
effective sucking and swallowing [6]. Feeding challenges may also persist in the early years
after surgical repair, limiting a child’s ability to participate in daily activities, like meals with
family and friends. Treatment for feeding difficulties falls within the scope of speech
pathologists with additional training in CL � P and nurses in tertiary or community settings.
Despite early surgical repair, individuals born with CL � P commonly experience difficulties
with speech clarity. Structural deficiencies can lead to a series of speech characteristics
unique to cleft that affect an individual’s ability to be understood, making it difficult to express
their needs and wants or participate effectively in conversations [7]. This can pose
challenges with engaging in social activities and building and maintaining relationships.
Receptive and expressive language impairment is also found in children with CL � P [8, 9].
Difficulties can persist throughout the pre-school and school years, where cleft is associated
with poorer reading, spelling, cognition and academic achievement across all subject areas
[10]. Challenges with communication can persist through to adulthood, resulting in long-term
impacts on day-to-day life [11].
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The role of speech pathologists
Speech pathologists provide diagnostic and therapeutic support around feeding, speech,
language and literacy. They also advocate for affected individuals, to best support their
learning and daily activities, e.g., through education and multidisciplinary meetings. Speech
pathology is a key function within the multidisciplinary cleft team in both tertiary and
community settings. Speech pathologists conduct thorough assessments and establish
intervention goals in collaboration with individuals, their families and the wider care team.
Goals will facilitate effective participation in home, educational and community contexts and
vary depending on the individual’s age, needs, and available family supports. Speech
pathologists consider all aspects of an individual’s life, taking into account developmental
and anatomical changes that will occur alongside any planned surgical procedures related to
the cleft. Effective evidence-based treatments are available that have been shown to
improve functional outcomes related to communication, including psycho-social wellbeing,
activity and participation [12]. Speech therapy support can also mitigate psychosocial
burdens associated with speech disorder such as bullying and poorer self-perception [13].
CL � P and the NDIS
Speech Pathology Australia asserts that individuals with CL � P can meet both the early
childhood early intervention criteria, and the disability requirements to access the Scheme
for participants over 7 years of age. Without access to speech pathology supports, these
individuals risk missing critical windows for intervention, and delays may worsen effects on
their overall health and social participation as they grow older.
It is clear that speech pathology forms one discipline of many involved in the long-term care
of an individual born with CL � P. Though the primary cleft is usually repaired early in life,
associated physical, developmental and psychosocial impacts remain with an individual
throughout their lifetime. The level of need from a given discipline varies at different time
points, each playing an important role in an individual’s ability to execute daily activities and
effectively engage in society. However, the multidisciplinary nature of cleft care is
undisputed [14]. Many of the communication and literacy difficulties associated with CL � P
affect the function and participation of those affected in their community and therefore the
Association asserts these supports should meet the reasonable and necessary criteria to be
funded by the NDIS.
Access to the NDIS states that an applicant needs to demonstrate that their disability is
attributable to an impairment that is “intellectual, cognitive, neurological, sensory or physical”
(section 24(1)(a)). As described above, CL � P is a physical impairment often also
associated with intellectual, cognitive and neurological impacts. Further, Section 24 (1)(b) of
the NDIS Act states that the prospective participant's impairment/s are, or are likely to be,
permanent. For many individuals with CL � P, the physical, developmental and
psychological impacts of cleft will persist well beyond the first seven years of life [5, 11, 15].
Individuals with CL � P are likely to require support for their communication, literacy,
academic learning and social participation, in addition to associated mental health and
cognitive impacts. They therefore also meet the criteria of the NDIS Act Section 24(1) (c):
“the prospective participant's impairment/s result in substantially reduced functional capacity
to undertake, or psychosocial functioning in undertaking, one or more of the following
relevant activities: a) communication; b)social interaction; c) learning; d) mobility; e) selfcare; or f) self-management (section 24(1)(c))” (NDIS, 2019)
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For further information please contact Amy Fitzpatrick Senior Advisor Disability, on 03 9642 4899 or
by email on afitzpatrick@speechpathologyaustralia.org.au.

What an amazing policy brief thank you so much speech pathology Australia, this will be used in the senator inquiry when we get one.