May 6, 2008 Features

Advancing Into the 21st Century: Care for Individuals with Cleft Palate or Craniofacial Differences

The decreased preparation of speech-language pathologists to provide services for individuals with cleft palate and/or lip is an increasing source of consternation as reflected by recent literature. Kuehn and Henne noted in 2003 that they found many practicing clinicians were unfamiliar with concepts and techniques involved in the care of a child with a craniofacial difference. Pannbacker reported in 2004 that care for children with cleft palate/lip was heterogeneous due to great variances in education at training institutions. Again, in 2006, Kuehn and colleagues noted SLPs' uncertainty about the challenge of treating a child with a cleft palate, while proposing remedies that could be accessible to the post-graduate clinician.

One of the greatest challenges in caring for children with cleft palate/lip is enabling the community clinician to provide excellent care for the child born with a cleft. Many cleft team clinicians may have that expertise, but they largely function as diagnosticians at tertiary medical care centers. Treatment is typically carried out in the community and the schools. Models for collaborative care must be examined and developed, so that expertise can be shared in a way that facilitates optimal treatment practices in the school and community.

The first cleft-palate team was set up in 1938 in Lancaster, Pennsylvania. In the middle and later half of the 20th century, research in the field of cleft palate/lip and care of the individual with cleft palate and/or lip received some emphasis in training for SLPs and audiologists. As years progressed, the scope of practice for SLPs expanded dramatically, and the training programs expanded curricula accordingly. As a result, cleft lip and palate became more and more of a footnote in training for SLPs. The care of the individual with cleft palate/lip requires synthesis of knowledge and skills in the areas of anatomy, physiology, phonetics, and articulation, and although that synthesis could benefit the problem-solving skills of the SLP in other areas of the profession, fewer and fewer training programs offer dedicated course work in the area of cleft palate.

A cycle began in the late 20th century, in which fewer programs began offering dedicated course work in cleft lip and palate. Because the cleft palate teams are located in tertiary medical centers, the number of training programs affiliated with a cleft team is small, offering fewer opportunities for doctoral students to pursue research in cleft palate/lip. Fewer doctoral students in this area resulted in fewer dedicated courses offered by seasoned researchers and clinicians and less-abundant published literature in the area by SLPs. Jerry Moon, in the editor's annual summary statement for the Cleft Palate-Craniofacial Journal, recently stated that more manuscripts are submitted to the journal from outside the United States than from within. Preparation of the student clinician is diminished, and fewer resources are available to the individual with cleft palate/lip and the clinicians who serve them.

Anne Plummer Bedwinek researched preparation of the school SLP in the area of cleft palate for her 2007 doctoral dissertation. She found that 45% of practicing clinicians from a random national sample had taken a dedicated course in cleft palate during training and 55% had some cleft palate education as part of another course. Only 15% reported any related practicum experience, and only 19% reported using a pertinent continuing education program. However, 72% reported providing services for at least one child with a cleft.

In her survey, Bedwinek asked the respondents to identify the information they thought most helpful for treating children with clefts. The top five "very helpful" topics identified were:

  • Specific speech treatment techniques—71%
  • Treatment of articulation disorders related to velopharyngeal dysfunction—59%
  • Assessment of articulation disorders related to velopharyngeal dysfunction—57%
  • Language problems of children with repaired cleft lip/plate—56%
  • Treatment of resonance disorders—55%

Information about high-tech instrumental assessment techniques was identified by Bediwnek's respondents as being "least helpful."

In 2006 Linda Vallino-Napoli and colleagues reported that two-thirds of the graduate training programs surveyed earlier offered a dedicated course on cleft palate and other orofacial disorders, while one-third folded some pertinent information into another course or courses. It was in that same year that ASHA adopted the knowledge and skills acquisition (KASA) guidelines that pair "voice" and "resonance" in a single course work/practicum category. The pairing, which is in many respects quite logical, has the unfortunate consequence of reinforcing the tendency to fold cleft palate into a voice disorder course, where it may receive only nominal attention, or where it may be taught by a superb academician with little or no actual experience in cleft palate-related articulation disorder.

The published literature from major cleft palate teams suggests that the prevalence of resonance disorder requiring surgical or prosthetic management varies between 20%-30%. However, several studies from major centers suggest that the prevalence of articulation disorder in individuals with cleft palate ranges from 50%-75%, and the articulation disorder of the child with cleft palate may be quite different from the sound system disorders that may be seen in children without a cleft palate.

Treating Articulation and Resonance

Resonance disorder does not respond to traditional speech treatment techniques. Articulation disorders cannot be treated with prosthetics or surgery. It is the articulation disorder that requires the skill and expertise of the SLP in treatment. It is the articulation disorder that may not be addressed in a voice disorder class, and the interaction of the articulation disorder in the context of, or as it mimics resonance disorder, may not be addressed in a childhood phonology class. It is the articulation disorder that the school or early childhood SLP is called upon to address. The practicing school clinicians surveyed in Bedwinek's research reflected these circumstances when they reported that information on specific speech treatment techniques and on articulation disorders related to velopharyngeal dysfunction were their greatest areas of need.

ASHA Special Interest Division 5, Speech Science and Orofacial Disorders, is working to address these needs in several ways. The division's education committee developed a traveling poster presentation that has been displayed at several ASHA Schools Conferences and at a number of state association meetings. The electronic communication committee has produced a live Web forum on cleft palate care and will continue to develop further products.

Division 5 established a formal relationship with the American Cleft Palate and Craniofacial Association (ACPA) in 2004 to facilitate cooperative offerings and programs to continually improve care for individuals with cleft palate and other craniofacial differences. ACPA and Division 5 jointly sponsor a five-hour, reasonably priced continuing education program on care for the child with cleft palate/lip that takes place each spring in a different region of the country. Further collaboration is planned for development of Web resources, mentored training experiences, cooperative research opportunities for doctoral students, and research funding.

Caring for a child with a craniofacial difference requires collaboration between the SLP and audiologist members of the cleft palate or craniofacial team and the community clinician. This cooperation requires understanding of the differences in practice cultures, a willingness to share information and power, and a full understanding of ethical responsibilities to seek guidance and information for areas outside of our individual expertise.

The ACPA education committee, which includes a number of ASHA members, is continually developing its core curriculum, a guide for all professional training programs to use in the development of cleft palate-craniofacial course work. The core curriculum is available online.

These cooperative ventures will become increasingly important in the coming decades as the medical care for children with craniofacial differences advances. New information is becoming available through genetic and epigenetic research, improved surgical techniques and theories, assistive hearing technology advances, and especially through the use of new and improved imaging technologies, which inform and shape our thinking in all these areas.

  Respondent Ratings of Future Sources of Information  [PDF]

Lynn Marty Grames, an SLP at St. Louis Children's Hospital and its Cleft Palate and Craniofacial Institute, is coordinator of ASHA's Special Interest Division 5, Speech Science and Orofacial Disorders, and a member of the American Cleft Palate and Craniofacial Association. Contact her at lynnmg@bjc.org. 

cite as: Grames, L. M. (2008, May 06). Advancing Into the 21st Century: Care for Individuals with Cleft Palate or Craniofacial Differences. The ASHA Leader.

Facts About Cleft Lip and Palate

  • Incidence in the Unites States: approximately 1 in 700 live births
  • Number of babies born with cleft lip and palate in the United States: more than 5,000 per year 
  • Percentage requiring speech-language treatment: 50%-75%, from various sources 
  • Percentage requiring treatment for resonance disorder: 25%-38%, from various sources 
  • Percentage with middle ear disease/conductive hearing loss in infancy: 95%-97%, from various sources 
  • Number of SLPs who are members of ACPA: 387 (2006)
  • Number of SLPs who are members of ASHA Division 5, Speech Science and Orofacial Disorders: 615 (2007) 
  • Number of SLPs who are ASHA members: 122,762 (2006) 
  • Percentage of SLPs reporting they feel "not competent" to treat children with cleft lip/palate: 44.1%  


The Early Years of Cleft Palate Work

Orthodontist Herbert K. Cooper realized in 1938 that his patients with cleft palate and/or cleft lip had multifaceted issues requiring the expertise of many professionals. He set up the first cleft palate team, based in Lancaster, Pennsylvania. Speech-language pathology was in the neonatal stage of development then, as the American Academy of Speech Correction (later to become ASHA) had existed for only 13 years. The formation of the Lancaster Cleft Palate team predated establishment of the ASHA National Office by 20 years.

In 1943, the Pennsylvania Department of Health-Dental Division offered a short course on obturator construction for dentists, taught by Cloyd Harkins and Herbert Koepp-Baker. From this course, a professional association of individuals caring for persons with cleft palate/lip was born. The organization was initially called the American Academy of Cleft Prosthesis. Like ASHA, it would evolve and grow, and has been known for many years as the American Cleft Palate-Craniofacial Association (ACPA). ACPA is truly a multidisciplinary organization, with more than 30 professions represented in its membership. Speech-language pathology and audiology are among the most prominent of the professions represented, with at least one council position to be held by an SLP at any given time. Traditionally, at least one executive officer position is held by an SLP as well, and as of this writing, three of the officers are from the field of speech-language pathology.

The histories of ASHA and ACPA include the names of prominent SLPs serving in the leadership of both organizations. Herbert Koepp-Baker, Jack Matthews, and D. C. Spriestersbach served as presidents of both organizations in the middle decades of the 20th century. Other prominent SLPs including Eugene T. McDonald, Betty Jane McWilliams, Kenneth Bzoch, Hughlett Morris, Ralph Shelton, and Betty Jane Phillips were well-known to members of both organizations.



American Cleft Palate and Craniofacial Association

  • An international non-profit medical society of health care professionals who treat and/or perform research on birth defects of the head and face
  • 2500 members, representing more than 30 disciplines in 50 countries
  • The official publication of ACPA is the bi-monthly Cleft Palate-Craniofacial Journal.
  • The affiliated Cleft Palate Foundation provides information to affected individuals and their families and seeks to educate the public about facial difference.
  • Many Speech Pathology members of ACPA are also members of ASHA Special Interest Division 5: Speech Science and Orofacial Disorders.
  • ACPA and ASHA Division 5 have had a cooperative relationship since 2004.
  • Web address: http://www.acpa-cpf.org/   


References

Bedwinek, A. P. (2007). An analysis of needs: School speech-language pathologists and children born with cleft lip/palate. Doctoral dissertation, Union University.

Kuehn, D. P., Kummer, A. W., D’Antonio, L. L., & Karnell, M. P. (2006). Cleft palate and speech: Three models of focused education. Perspectives, 16(2), 17–21.

Kuehn, D. P., & Moller, K. T. (2000). Speech and language issues in the cleft palate population: The state of the art. Cleft Palate-Craniofacial Journal, 37(4), 348.

Vallino-Napoli, L. D., Lass, N. J., Bunnell, H. T., & Pannbacker, M. (April 2006). Academic and clinical training in cleft palate. Poster presented at the annual meeting of the American Cleft Palate-Craniofacial Association, Vancouver, British Columbia, Canada.



Focus on Divisions

Division 5, Speech Science and Orofacial Disorders, focuses on multiple study issues including normal speech anatomy and physiology, craniofacial anomalies, and related structural disorders. Find out more about Division 5.  

  

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