NDIA Accountability Project

Policy brief: Cleft lip and/or palate (CL  P)

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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 pathology professionals 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), imerge 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).

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].

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, asociated 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) self- care; or f) self-management (section 24(1)(c))” (NDIS, 2019)

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References

For further information please contact Amy Fitzpatrick Senior Advisor Disability,

References

  1. Lo, J.Y., et al., Description of total population hospital admissions for cleft lip and/or palate in Australia. BMC Oral Health, 2015. 15: p. 156.
  2. Bell, J.C., et al., Descriptive epidemiology of cleft lip and cleft palate in Western Australia. Birth Defects Res A Clin Mol Teratol, 2013. 97(2): p. 101-8.
  3. Lewis, C.W., et al., The Primary Care Pediatrician and the Care of Children With Cleft Lip and/or Cleft Palate. Pediatrics, 2017. 139(5).
  4. Nicholls, W., et al., Adult-specific life outcomes of cleft lip and palate in a Western Australian cohort. Cleft Palate Craniofac J, 2018. 55(10): p. 1419-1429.
  5. Ardouin, K., M. Hotton, and N.M. Stock, Interpersonal Relationship Experiences in Adults Born With Cleft Lip and/or Palate: A Whole of Life Survey in the United Kingdom. Cleft Palate Craniofac J, 2021. 58(11): p. 1412-1421.
  6. Boyce, J.O., et al., ABM Clinical Protocol #17: Guidelines for Breastfeeding Infants with Cleft Lip, Cleft Palate, or Cleft Lip and Palate-Revised 2019. Breastfeed Med, 2019. 14(7): p. 437-444.
  7. Sell, D., et al., The Cleft Care UK study. Part 4: perceptual speech outcomes. Orthod Craniofac Res, 2015. 18(Suppl. 2): p. 36-46.
  8. Hardin-Jones, M. and K. Chapman, Early lexical characteristics of toddlers with cleft lip and palate. Cleft Palate-Craniofacial Journal, 2014. 51(6): p. 622-631.
  9. Bell, J.C., et al., School performance for children with cleft lip and palate: a population-based study. Child: Care, Health and Development, 2017. 43(2): p. 222-231.
  10. Grewal, S.S., et al., Educational Attainment of Children Born with Unilateral Cleft Lip and Palate in the United Kingdom. Cleft Palate Craniofac J, 2021. 58(5): p. 587-596.
  11. Morén, S., et al., Speech in Adults Treated for Unilateral Cleft Lip and Palate: Long-Term Follow-Up After One- or Two-stage Palate Repair. The Cleft Palate-Craniofacial Journal, 2017. 54(6): p. 639-649.
  12. Lane, H., S. Harding, and Y. Wren, A systematic review of early speech interventions for children with cleft palate. Int J Lang Commun Disord, 2021.
  13. Jones, A., A.M. Plumb, and M.J. Sandage, Social Media as a Platform for Cyberbullying of Individuals With Craniofacial Anomalies: A Preliminary Survey. Language, Speech, and Hearing Services in Schools, 2021. 52(3): p. 840-855.
  14. Cassinelli, A., et al., National Health Care Network for children with oral clefts: organization, functioning, and preliminary outcomes. Arch Argent Pediatr, 2018. 116(1): p. e26-e33.
  15. Nicholls, W., et al., The Psychosocial Impact of Cleft in a Western Australian Cohort Across 3 Age Groups. The Cleft Palate-Craniofacial Journal, 2019. 56(2): p. 210-221.
  16. National Disability Insurance Scheme (2019). Access to the NDIS - The disability requirements. Retrieved from https://www.ndis.gov.au/about-us/operational-guidelines/access-ndis-operational-guide-line/access-ndis-disability-requirements