1. Collaborating with Your Local Cleft Team Cynthia Solot, MA, CCC/SLP The Childrens Hospital of Philadelphia The Childrens Hospital of Philadelphia Marilyn Cohen, BA; LSLP Cooper University Hospital

2. Purpose Introduction to the team approach Introduction to the team approach Provide a framework for interaction and collaboration with the local cleft team Provide a framework for interaction and collaboration with the local cleft team Discuss the ethical mandates for collaboration Discuss the ethical mandates for collaboration

3. ASHA Code of Ethics Individuals should provide services competently Individuals should provide services competently Individuals shall use every resource including referral…to ensure high quality service Individuals shall use every resource including referral…to ensure high quality service Recognize professional limitations Recognize professional limitations Seek consultation and referral when a clients care exceeds an SLPs competence beyond training and experience Seek consultation and referral when a clients care exceeds an SLPs competence beyond training and experience

4. ACPA Standards Evaluation and Treatment Parameters (ACPA, 1993, 2000) …For children with speech problems, reevaluations should take place as deemed necessary by members of interdisciplinary team in consultation with local care providers and …For children with speech problems, reevaluations should take place as deemed necessary by members of interdisciplinary team in consultation with local care providers and …when speech patterns are deviant, arrangements should be made for speech- language stimulation programs or remedial services …when speech patterns are deviant, arrangements should be made for speech- language stimulation programs or remedial services

5. Why a Cleft Team? Availability of multi-specialties to provide diagnostic information and treatment planning for a complex communication problem Availability of multi-specialties to provide diagnostic information and treatment planning for a complex communication problem Expertise of individuals dealing with the many sequelae associated with clefting Expertise of individuals dealing with the many sequelae associated with clefting A comprehensive approach to evaluation and management A comprehensive approach to evaluation and management

6. Sequelae of Clefts Poor feeding ability Poor feeding ability Otitis Media Otitis Media Conductive Hearing Impairment Conductive Hearing Impairment Deviations in vocal quality & resonance Deviations in vocal quality & resonance Developmental and compensatory articulation problems Developmental and compensatory articulation problems Increased incidence of language based learning disability and dyslexia Increased incidence of language based learning disability and dyslexia

7. Sequelae Continued Malalignment of teeth and jaws Malalignment of teeth and jaws Emotional social problems, family adaptation to the disorder and to issues related to appearance and learning delays Emotional social problems, family adaptation to the disorder and to issues related to appearance and learning delays Palatal insufficiency due to post operative fistulae and- or decreased palatal function Palatal insufficiency due to post operative fistulae and- or decreased palatal function Associated genetic syndromes Associated genetic syndromes

8. Management of Sequelae The Team Approach Core Team consisting of specialists from the following disciplines: Core Team consisting of specialists from the following disciplines: Plastic Surgery Plastic Surgery Otolaryngology Otolaryngology Nursing Nursing Pediatrics Pediatrics Genetics Genetics Speech Pathology Speech Pathology Audiology Audiology Pediatric Dentistry Pediatric Dentistry Orthodontics Orthodontics Psychology Psychology Social Work Social Work

9. Team Treatment & Evaluation Surgical management Surgical management Comprehensive evaluations on a regular basis that include the following: Comprehensive evaluations on a regular basis that include the following: Physical and developmental assessments Physical and developmental assessments Hearing evaluations Hearing evaluations Speech and language assessment Speech and language assessment Dento-facial development Dento-facial development Psycho-social adjustment Psycho-social adjustment

10. The Role of The Speech Pathologist Assessment of speech and language across the developmental continuum Assessment of speech and language across the developmental continuum Screening of receptive and expressive language development Screening of receptive and expressive language development Articulation profile Articulation profile Patterns of Articulation: conversational speech,Patterns of Articulation: conversational speech, Isolated phonemes and single words Motor speech skills Motor speech skills Overall intelligibility Overall intelligibility Stimulability Stimulability

11. Evaluations Continued Phonation Phonation Resonation Resonation Perceptual and Instrumentation Measures Perceptual and Instrumentation Measures NasendoscopyNasendoscopy VideofluroscopyVideofluroscopy NasometerNasometer Pressure FlowPressure Flow Nasal Air Emission Nasal Air Emission Oral Peripheral Examination Oral Peripheral Examination Feedback to Families Feedback to Families

12. Why Collaborative Care? Involves the professionals and family members who provide child focused care Involves the professionals and family members who provide child focused care Collaboration provides quality, comprehensive and efficient care Collaboration provides quality, comprehensive and efficient care Collaboration utilizes an inter-disciplinary approach to treatment and evaluation Collaboration utilizes an inter-disciplinary approach to treatment and evaluation Collaboration utilizes the expertise of the cleft team together with community based providers due to diverse geography Collaboration utilizes the expertise of the cleft team together with community based providers due to diverse geography

13. Goals of Collaboration Patient centered care Patient centered care Eliminates role confusion Eliminates role confusion Creates a team approach Creates a team approach Diminish hierarchy- create professional equity Diminish hierarchy- create professional equity Provides a continuum of care that includes the home, school, community and the Provides a continuum of care that includes the home, school, community and the cleft-craniofacial team

14. Mechanisms for Collaboration Written reports outlining treatment goals and progress Written reports outlining treatment goals and progress Therapist to team Therapist to team Team to therapist Team to therapist Phone reports and consultations Phone reports and consultations Direct observation Direct observation

15. Barriers to Collaboration Training & experience of community providers Training & experience of community providers The generalist verses the specialist The generalist verses the specialist Cultural/Environmental Differences Cultural/Environmental Differences Medical setting verses school setting Medical setting verses school setting Willingness/desire to collaborate Willingness/desire to collaborate

16. Models for Collaboration Using the Cleft Team Consultation for difficult diagnostic problems Consultation for difficult diagnostic problems An educational resource for the speech community An educational resource for the speech community Provision of evaluations that can not be accomplished in a community setting Provision of evaluations that can not be accomplished in a community setting Imaging studies Imaging studies Surgical-medical evaluation Surgical-medical evaluation Specialized speech evaluations Specialized speech evaluations

17. Models for Community Collaboration Speech therapy in a community setting Speech therapy in a community setting Consultation with community educational services such as child study teams, teachers, school psychologist and counselors Consultation with community educational services such as child study teams, teachers, school psychologist and counselors On going determination of progress and needs in a school or community environment On going determination of progress and needs in a school or community environment

18. Limitations to Services Economics Economics Medical need verses educational need Medical need verses educational need Geographics Geographics School: federal, state and educational guidelines School: federal, state and educational guidelines Hospital: 3 rd party payer contracts, staff limitations and budgetary constraints Hospital: 3 rd party payer contracts, staff limitations and budgetary constraints HIPPA guidelines HIPPA guidelines

19. Barriers to Care Economic: limitation of available financial resources Economic: limitation of available financial resources Parental: social, economic and emotional constraints Parental: social, economic and emotional constraints Parental buy in of treatment & evaluation recommendations Parental buy in of treatment & evaluation recommendations Physical, mental and emotional conditions of the child Physical, mental and emotional conditions of the child

20. Case Study I 5 year old boy 5 year old boy Bilateral repaired cleft lip and palate Bilateral repaired cleft lip and palate Hx. 3 years of oral-motor therapy in community setting Hx. 3 years of oral-motor therapy in community setting Speech characteristics Speech characteristics Consonant omissions, glottal stops & nasal substitutionsConsonant omissions, glottal stops & nasal substitutions Resonance is hypernasal with visible and audible nasal emission. Resonance is hypernasal with visible and audible nasal emission.

21. Recommendations for Collaboration Case 1 Evaluation or re-evaluation by a cleft palate team Evaluation or re-evaluation by a cleft palate team VP imaging studies recommended after development of sufficient consonant repertoire VP imaging studies recommended after development of sufficient consonant repertoire Communicate recommendations from team evaluation to both family and community based SLP Communicate recommendations from team evaluation to both family and community based SLP Return to community based SLP for articulation therapy to Return to community based SLP for articulation therapy to Stimulate consonant production Stimulate consonant production Eliminate compensatory articulation Eliminate compensatory articulation Develop a home program Develop a home program Provide periodic reports of patients progress to team Provide periodic reports of patients progress to team Especially regarding consonant productionEspecially regarding consonant production

22. Case Study II 7 year old girl in school based speech therapy. Not progressing. 7 year old girl in school based speech therapy. Not progressing. Audible nasal emission Audible nasal emission Hypernasality reported Hypernasality reported Normal language development Normal language development No overt cleft of the palate No overt cleft of the palate Referred to cleft team for further evaluation Referred to cleft team for further evaluation

23. Team Findings & Recommendations Case 2 No SMCP or other palatal anomaly No SMCP or other palatal anomaly Tonsils of normal size Tonsils of normal size Nasal emission on /s/ & /z/ both audible and visible Nasal emission on /s/ & /z/ both audible and visible Resonance perceptually WNL = Phoneme Specific VPI Resonance perceptually WNL = Phoneme Specific VPIRecommendations: 1. Trial school based speech therapy. SLPs share techniques 2. 6 month reevaluation to assess progress and need for visualization studies

24. Case Study III 3 year old boy 3 year old boy Late emergence of language Late emergence of language Unintelligible speech Unintelligible speech Five word vocabulary & reduced phonemic repertoire Five word vocabulary & reduced phonemic repertoire Hypernasality Hypernasality History of poor feeding as an infant History of poor feeding as an infant Behavior & attention difficulties noted Behavior & attention difficulties noted

25. Findings and Recommendations Case 3 Mild facial dysmorphia Mild facial dysmorphia SMCP and VPI SMCP and VPI Delayed receptive and expressive language on standardized testing Delayed receptive and expressive language on standardized testing Genetic and medical evaluations indicate a 22q11.2 deletion syndrome Genetic and medical evaluations indicate a 22q11.2 deletion syndromeRecommendations: 1. Pre-school placement 2. Collaboration with school 2. Intensive one to one speech-language therapy 3. Use of Total Communication 4. Develop speech sound repertoire and expressive vocabulary 5. Institute a home program

26. Summary Community and team are extensions of each other Community and team are extensions of each other Lines of communication are open Lines of communication are open Co-therapeutic model evolves Co-therapeutic model evolves Goals of treatment are collaborative and realistic Goals of treatment are collaborative and realistic Techniques are shared and serve as a gateway to both the medical model and an educational model Techniques are shared and serve as a gateway to both the medical model and an educational model