CLINICAL PRACTICE GUIDELINE
CLINICAL PRACTICE GUIDELINEREPORT OF THERECOMMENDATIONSMOTOR DISORDERSASSESSMENT AND INTERVENTIONFORYOUNG CHILDREN (AGE 0-3 YEARS)SPONSORED BYNEW YORK STATE DEPARTMENT OF HEALTHDIVISION OF FAMILY HEALTHBUREAU OF EARLY INTERVENTIONThis guideline was developed by an indepe ndent panel of pr ofessionals and parentssponsored by the New York State Department of Health. The recommendations presentedin this document have been dev eloped by the panel and do not necessarily represent theposition of the Department of Health.
GUIDELINE ORDERING INFORMATIONOrdering information for New York State residents: The guideline publications areavailable free of charge to New York State residents.To order, contact:PublicationsNew York State Department of Health, P.O. Box 2000, Albany, New York 12220Fax: (518) 486-2361Ordering information for non-New York State residents: A small fee will be chargedto cover printing and administrative costs for orders placed by nonresidents of New YorkState and for multiple copies requested by other than those above.To order, contact:Health Education ServicesP.O. Box 7126, Albany, New York 12224www.hes.orgMasterCard and Visa accepted via telephone: (518) 439-7286.Publication Titles1.Clinical Practice Guideline: The Guideline Technical Report.Motor Disorders, Assessment and Intervention for Young Children(Age 0-3 Years). 8½" x 11", 422 pages. Publication No. 4963. 20061a. Evidence Tables – Assessment and Intervention. 8½" x 11", 70 pages. PublicationNo. 4975. 20062.Clinical Practice Guideline: Report of the Recommendations.Motor Disorders, Assessment and Intervention for Young Children(Age 0-3 Years). 5½" x 8½", 322 pages. Publication No. 4962. 20063.Clinical Practice Guideline: Quick Reference Guide.Motor Disorders, Assessment and Intervention for Young Children(Age 0-3 Years). 5½" x 8½", 170 pages. Publication No. 4961. 20064.Clinical Practice Guidelines on Compact Disc: Includes – Guideline TechnicalReport, Report of the Recommendations, and Quick Reference Guide, Publication No.4964. 2006For permission to reprint or use any of the contents of this guideline, or for moreinformation about the NYS Early Intervention Program, contact:NYS Department of HealthBureau of Early InterventionCorning Tower Building, Room 287, Empire State Plaza, Albany, New York 12237-0660Tel (518) community/infants children/early intervention/index.htm
The New York State Depar tment of Health gratefully acknowledgesthe contributions of individu als who have participated as guidelinepanel members and peer rev iewers for the development of thisclinical practice guideline. Their insights and expertise have beenessential to the development and credibility of the guidelinerecommendations.The New York State De partment of Health Bureauof EarlyIntervention especially appreciates the advice and assistance of theNew York State EarlyIntervention Coordinating Council andClinical Practice Guidelines Project Steering Committee on allaspects of this important effort to improve the quality of earlyintervention services for young children who have a motor d isorderand their families.The contents of the guideline were developed under a grant from the U.S.Department of Education. However, the contents do not necessarily representthe policy of the Department of Education, and endorsement by the federalgovernment should not be assumed.
The New York State Early Intervention Program does not discriminate on thebasis of handicap in admission, or access to, or treatment or employment in itsprogram and activities.If you feel you have been discriminated against in admission, or access to, ortreatment or employment in the New York State Early Intervention Program, youmay, in addition to all other rights and remedies, contact: Director, Bureau ofEarly Intervention, New York State Department of Health, Room 287, CorningTower Building, Empire State Plaza, Albany, NY 12237-0660.
Table of ContentsMotor DisordersAssessment and Intervention for Young Children (Age 0-3 Years)Preface .xiiiWhy the Bureau of Early Intervention Is Developing Guidelines . xivChapter I: Introduction .1Purpose of This Clinical Practice Guideline. 2Reasons for Developing This Guideline . 2Definition of Motor Disorders. 3Scope of the Guideline. 3Definition of Other Important Terms . 4The Importance of Using Scientific Evidence to Help Shape Practice. 5Overview of the Methods Used to Evaluate the Evidence . 6Strength of Evidence Ratings. 7Using Scientific Evidence as the Basis for Clinical Decision Making . 8Peer Review, Guideline Versions, and Periodic Revision . 10Chapter II: Background Information.13What Is Motor Development?. 14What Is Typical Motor Development? . 15What Are Some of the Important Components of Motor Development? . 16How Do Prematurity and Other Health Conditions Impact Motor Development?. 18What Is a Motor Disorder? . 20How Common Are Motor Disorders and Cerebral Palsy? . 22What Do We Know About the Causes of Motor Disorders? . 23What Is the Impact on the Child and Family of Having a Motor Disorder?. 24Do Some Children Outgrow Motor Disorders? . 25Chapter III: Assessment.27General Approach for the Identification and Assessment of Young Children WhoHave a Motor Disorder. 29Identifying Young Children Who Have a Motor Disorder . 34Assessing Young Children Who Have a Motor Disorder . 56NYSDOH Report of the Recommendations: Motor Disorders v
TABLE OF CONTENTSOral-Motor Assessment for Feeding and Swallowing. 66Assessing Other Developmental Domains for Young Children Who Have a Motor Disorder. 78Assessing the General Health Status of Young Children Who Have a Motor Disorder . 87Considerations for Working With the Family . 91Chapter IV: Intervention.103General Approach to Interventions for Young Children Who Have a Motor Disorder . 104Motor Therapy Approaches and Techniques . 131Assistive Technology and Adaptive Devices . 145Oral-Motor Feeding and Swallowing Interventions . 155Approaches for Spasticity Management. 161Orthopedic Management and Surgery . 169Interventions for Associated Health Conditions. 177Other Intervention Approaches for Young Children Who Have a Motor Disorder . 178Appendix A:Methodology Tables .185Appendix B:Summary of Evidence .195Appendix C:Developmental Assessment Tests .211Appendix D:Early Intervention Program Information.241Appendix E:Classification of Cerebral Palsy.257Appendix F:Additional Resources.263Appendix G:Peer Reviewers .267Bibliography.273Subject Index.297vi NYSDOH Report of the Recommendations: Motor Disorders
TABLE OF CONTENTSList of TablesTable 1:Developmental Motor Milestones . 15Table 2:Risk Factors for Motor Disorders. 41Table 3:Clinical Clues of a Possible Motor Disorder. 42Table 4:Developmental Motor Milestones . 49Table 5:Milestones Relevant to Normal Feeding. 69Table 6:Clinical Clues of a Possible Feeding Problem . 70Table 7:Questions to be Considered in the Feeding History. 71Table 8:Components of an Initial Oral-Motor Assessment. 73Table 9:Instrumental Assessments for Abnormal Swallowing . 77Table 10: Common Associated Conditions in Children With Cerebral Palsy. 89Table 11: Questions to Ask When Selecting Interventions .120Table 12: Important Components of Developmental Supportive Care .126Table 13: Basic Exercise Definitions.133NYSDOH Report of the Recommendations: Motor Disorders vii
Motor DisordersClinical Practice Guideline Development PanelBrian Rogers, MDGuideline Panel ChairmanDevelopmental PediatricianRobert Warner Rehabilitation CenterBuffalo, New YorkHarvey Bennett, MDPediatric NeurologistS.S. Lamm Institute of Child Neurologyand Developmental MedicineBrooklyn, New YorkSusan Breznak-Honeychurch, BA, PTNew Directions Child andFamily CenterFredonia, New YorkJayne Calabro, PhD, PTSt. Francis HospitalWest Park, New YorkJudy Connor Tarver, MEdOnondaga Community CollegeAuburn, New YorkDiane deRoos, MS, CCC-SLPE. John Gavras CenterAuburn, New YorkDelia Gorga, OTR, PhD, FAOTADepartment of Rehabilitation MedicineNew York-Presbyterian HospitalNew York, New YorkGail Landsman, PhDParent RepresentativeAnthropology DepartmentSUNY at AlbanyAlbany, New YorkLinda Mancz, MA, CCC-SLP, MBAUnited Cerebral Palsy Association ofNassau County, Inc.Roosevelt, New YorkZenobia MannParent RepresentativeBrooklyn, New YorkBarbara Mykytyn, MSParent RepresentativeWest Oneonta, New YorkJanine Pollack, PhDPsychologistS.S. Lamm Institute of Child Neurologyand Developmental MedicineBrooklyn, New YorkJudith Scannapieco, RNVisiting Nursing Associationof Staten IslandStaten Island, New YorkSarah Schoen, MA, OTRRose F. Kennedy CenterBronx, New YorkRichard Schwend, MDOrthopedic SurgeonChildren’s Hospital of BuffaloBuffalo, New YorkMargaret ThompsonParent RepresentativePearl River, New YorkMargaret Turk, MDPhysical Medicine and RehabilitationSUNY Health Science CenterSyracuse, New Yorkviii NYSDOH Report of the Recommendations: Motor Disorders
Motor DisordersThe following Project Staff participated in the development of the Clinical Practice Guidelines.Attribution is based on their status at the time the Guidelines were being developed.Project StaffProject DirectorProVantage Health ServicesDemie Lyons, RN, PNPLincoln, MassachusettsMethodologist/Director of ResearchJohn P. Holland, MD, MPHSeattle, WashingtonSenior Research AssociateMary M. Webster, MA, CphilSeattle, WashingtonResearch AssociatesProVantage Health ServicesBeth Martin, MLISAnnmarie Walsh, MATKathleen T. Wilsack, MS EdCarole Holland, MASeattle, WashingtonInstitute for Basic Research inDevelopmental DisabilitiesTiffany Perkins, MSTopic AdvisorMichael Guralnick, PhDUniversity of WashingtonSeattle, WashingtonTopic ConsultantMary E. Reese, MDDevelopmental PediatricianBuffalo, New YorkCopy EditorProVantage Health ServicesPatricia Sollner, PhDMeeting FacilitatorRani FindlayNew York, New YorkIllustrationsDarisse A. Pacquette, CMIDocument SupportProVantage Health ServicesGail BrodieKara Le TreizeXiaoyan (Chris) LinDepartment of Health – Bureau of Early InterventionContributing StaffGuideline Project DirectorDonna M. Noyes, PhDDirector, Policy & Clinical ServicesGuideline Panel StaffBrenda Knudson Chouffi, MSEarly Intervention SpecialistDirector, Division of Family HealthBarbara L. McTagueGuideline ProductionAndrea Juris, LCSWEarly Intervention SpecialistPatti RyanResearch AssociateJeff Simon, MSEarly Intervention SpecialistNicholas Teresi, MAPublic Health EducatorLaurel Vay, MSEarly Intervention SpecialistNYSDOH Report of the Recommendations: Motor Disorders ix
ForewordProviding an optimal program of early intervention for young children withdevelopmental disabilities and their families requires knowledge of reliable andcurrent information on research and practice. However, analyzing researchstudies and determining their relevance to practice can be a perplexing task,even for the professional. Differing methodologies and a variety of conceptualframeworks often make it difficult to judge the quality of the research and todiscern outcome patterns that can—and should—influence practice.Despite the fact that this is a difficult task, practice guidelines based on asophisticated and rigorous analysis of the extant research literature can conveyessential information for the design and implementation of optimal earlyintervention programs. Young children at risk for, or who have established,motor disorders, pose an unusually complex set of problems with regard to bothassessment and intervention. Interdisciplinary involvement and the differingperspectives that can result make it even more essential that proper practiceguidelines be developed. The Clinical Practice Guideline for Motor Disordershas been the result of a sophisticated and methodologically sound approach toaccurately gather and summarize information based on the available evidence.This Guideline is of extraordinary value to practitioners from all relevantdisciplines, and to parents, administrators, and others interested in the health andwell-being of young children with motor disorders.MICHAEL J. GURALNICK, PhDUniversity of WashingtonNYSDOH Report of the Recommendations: Motor Disorders xi
PREFACENYSDOH Report of the Recommendations: Motor Disorders xiii
PREFACEWHY THE BUREAU OF EARLY INTERVENTION ISDEVELOPING GUIDELINESIn 1996, a multiyear effort was initiated by the New York State Department ofHealth (NYSDOH) to develop clinical practice guidelines to support the effortsof the statewide Early Intervention Program. As lead agency for the EarlyIntervention Program in New York State, the NYSDOH is committed toensuring that the Early Intervention Program provides consistent, high quality,cost-effective, and appropriate services that result in measurable outcomes foreligible children and their families.This guideline is a tool to help ensure that infants and young children withdisabilities receive early intervention services consistent with their individualneeds, resources, priorities, and the concerns of their families.The guideline is intended to help families, service providers, and public officialsby offering recommendations based on scientific evidence and expert clinicalopinion on effective practices for the following: Early identification of children at risk or suspected of having a disabilitythrough routine developmental surveillance and screening targeted toidentify specific disabilities. Provision of multidisciplinary evaluations and assessments that result inreliable information about a child’s developmental strengths and needs and,when possible, a diagnosis. The determination of effective intervention strategies and reachingagreement on the frequency, intensity, and duration of early interventionservices that will lead to positive outcomes for children and families. The measurement of outcomes achieved.The impact of clinical practice guidelines for the Early Intervention Programwill depend on their credibility with families, service providers, and publicofficials. To ensure a credible product, an evidence-based, multidisciplinaryconsensus panel approach was used. The methodology for these guidelines wasestablished by the Agency for Healthcare Research and Quality (AHRQ),formerly the Agency for Healthcare Policy and Research (AHCPR). Thismethodology was selected because it is a well-tested, effective, and scientificapproach to guideline development.xiv NYSDOH Report of the Recommendations: Motor Disorders
PREFACEThe NYSDOH has worked closely with the State Early InterventionCoordinating Council throughout the guideline development process. A statelevel steering committee was also established to advise the department on thisinitiative. A national advisory group of experts in early intervention has beenavailable to the Department to review and to provide feedback on themethodology and the guideline. Their efforts have been crucial to the successfuldevelopment of this guideline.Overview of the Early Intervention ProgramThe New York State Early Intervention Program is part of the national EarlyIntervention Program for infants and toddlers with disabilities and their families,first created by Congress in 1986 under the Individuals with DisabilitiesEducation Act (IDEA). IDEA is also the federal law that ensures all children andyouth ages 3 to 21 years with disabilities the right to a free appropriate publiceducation. In New York State, the Early Intervention Program is established inArticle 25 of the Public Health Law and has been in effect since July
Clinical Practice Guideline: Quick Reference Guide. Motor Disorders, Assessment and Intervention for Young Children (Age 0-3 Years). 5½" x 8½", 170 pages. Publication No. 4961. 2006 4. Clinical Practice Guidelines on Compact Disc: Includes – Guideline Technical Report, Report of the Recommendations, and Quick Reference Guide, Publication No.
This clinical practice guideline is based on the best available scientific evidence for the key questions as determined by the GDG. This means that our clinical practice guideline is not intended to replace the professional judgment of clinicians, but should help to inform clinical decision-making in particular clinical circumstances.
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