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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 1, 1993.To be eligible for services, children must be under 3 years of age and have aconfirmed disability or established developmental delay in one or more of thefollowing areas of development: physical, cognitive, communication, socialemotional, and adaptive development.The Early Intervention Program offers a variety of therapeutic and supportservices to infants and toddlers with disabilities and their families that includefamily education and counseling, home visits, and parent support groups; specialinstruction; speech pathology and audiology; occupational therapy; physicaltherapy; psychological services; service coordination; nursing services; nutritionservices; social work services; vision services; and assistive technology devicesand services.Major provisions of the New York State Public Health Law that govern theEarly Intervention Program require: Local administration of the program by an Early Intervention Official (EIO)designated by the chief elected official of each of the 57 counties and NewYork City. The EIO is responsible for ensuring that eligible children andtheir families receive the services included in the Individualized FamilyService Plan (IFSP) that is developed for the child and family.NYSDOH Report of the Recommendations: Motor Disorders xv

PREFACE Identification and referral of children at risk or suspected of disability byprimary referral sources (including physicians and other health careproviders). Periodic developmental screening and tracking of at-risk children. Provision of service coordination services to eligible children and theirfamilies. A multidisciplinary evaluation of children referred to the program, at nocost to families, to determine eligibility. Individualized Family Service Plans (IFSP) for eligible children and theirfamilies. Provision of early intervention services as specified in the IFSP at no cost tothe family. Delivery of services in natural settings in the community where peers aretypically found to the maximum extent appropriate.The mission of the Early Intervention Program is to identify and evaluate, asearly as possible, those infants and toddlers whose healthy development iscompromised and provide for appropriate intervention to improve child andfamily development. The program goals are to: Support parents in meeting their responsibilities to nurture and to enhancetheir child(ren)’s development. Create opportunities for full participation of children with disabilities andtheir families in their communities by ensuring services are delivered innatural environments to the maximum extent appropriate. Ensure early intervention services are coordinated with the full array ofearly childhood health and mental health, educational, social, and othercommunity-based services needed by and provided to children and theirfamilies. Enhance child development and functional outcomes and improve familylife through delivery of effective, outcome-based, high-quality earlyintervention services. Ensure early intervention services complement the child’s medical home byinvolving primary and specialty health care providers in supporting familyparticipation in early intervention services.xvi NYSDOH Report of the Recommendations: Motor Disorders

PREFACE Ensure equity of access, quality, consistency, and accountability in theservice system by ensuring clear lines of public supervision, responsibility,and authority for the provision of early intervention services to eligiblechildren and their families.New York State Public Health Law designates the Department of Health as thelead agency for this statewide program. As the lead agency, the NYSDOH isresponsible for the overall supervision and administration of the EarlyIntervention Program. Responsibilities include: Implementing statewide policies, procedures, and programmatic andreimbursement regulations. Implementing a comprehensive public awareness and child-find system. Approving, compiling, and disseminating lists of approved servicecoordinators, evaluators, and service providers. Providing training and technical assistance to municipalities and serviceproviders to enable them to identify, locate, and evaluate eligible children;develop individualized family service plans; ensure the appropriateprovision of early intervention services; and promote the development ofnew services where there is a demonstrated need. Safeguarding parent and child rights under the Early Intervention Program. Establishing and maintaining an Early Intervention Coordinating Council toadvise and assist the department in program implementation.NYSDOH Report of the Recommendations: Motor Disorders xvii

Early Intervention Policy Throughout the document, informationabout relevant Early Intervention Program policy is presented in boxes with this symbol.NYSDOH Report of the Recommendations: Motor Disorders xviii

CLINICAL PRACTICE GUIDELINEREPORT OF THERECOMMENDATIONSMOTOR DISORDERSASSESSMENT AND INTERVENTIONFORYOUNG CHILDREN (AGE 0-3 YEARS)NYSDOH Report of the Recommendations: Motor Disorders xix

This Clinical Practice Guideline: Report of the Recommendationspresents the full text of all the recommendations plus an abbreviateddescription of the methodolog y and evidence used to develop therecommendations.The full text of all the r ecommendations plus a description of themethodology and evidence used to develop the recommendations canbe found in the Clinical Practice Guideline: The Guideline TechnicalReport.An abbreviated version of the b ackground information and guidelinerecommendations can b e found in the Clinical Practice Guideline:Quick Reference Guide.xx NYSDOH Report of the Recommendations: Motor Disorders

CHAPTER I: INTRODUCTIONNYSDOH Report of the Recommendations: Motor Disorders 1

CHAPTER I: INTRODUCTIONPURPOSE OF THIS CLINICAL PRACTICE GUIDELINEThis Report of the Recommendations guideline is based on the Clinical PracticeGuideline Technical Report that was developed by an independent,multidisciplinary panel of clinicians and parents convened by the New YorkState Department of Health. The development of this and other guidelines forthe statewide Early Intervention Program was sponsored by the New York StateDepartment of Health as part of its mission to make a positive contribution tothe quality of care for children with disabilities.These clinical practice guidelines are intended to provide parents, professionals,and others with recommendations about “best practice” based on consensusopinion of the panel and scientific evidence about the efficacy of variousassessment and intervention options for young children who have a motordisorder.The key elements of the guideline development approach include: Ensuring multidisciplinary representation Developing a guideline that is valid, objective, and credible Using a process that includes a combination of systematic review of theavailable scientific literature and expert clinical opinionThis guideline represents the guideline panel’s concerted attempt to find andinterpret the available scientific evidence in a systematic and unbiased fashion.It is hoped that by using an evidence-based approach, the guideline provides aset of recommendations that reflect current best practices and will lead tooptimal outcomes for children and their families.Providers and families are encouraged to use this guideline, recognizing that the careprovided should always be tailored to the individual. Not all of the recommendationswill be appropriate for use in all circumstances. The decisions to adopt any particularrecommendation must be made by the family and the practitioner in light of availableresources and circumstances presented by individual child(ren) and their families.REASONS FOR DEVELOPING THIS GUIDELINEThe goals of developing a clinical practice guideline for young children whohave a motor disorder are to: Help children and their families learn about appropriate and effectiveservices Provide an education and information resource for professionals2 NYSDOH Report of the Recommendations: Motor Disorders

CHAPTER I: INTRODUCTION Promote consistency in service delivery Facilitate productive communication among professionals Facilitate quality improvement in early intervention services Indicate where more research is neededDEFINITION OF MOTOR DISORDERSFor this guideline, the discussion of motor disorders will be limited to: Developmental motor disorders (motor delays that are part of a globaldevelopmental delay, motor delays that can arise from hypotonia, and mildneuromotor dysfunction), and Static central nervous system disorders, specifically, cerebral palsyBecause of the need to focus the scope of the guideline, conditions such as spinabifida, juvenile rheumatoid arthritis, and neuromuscular disorders such asmuscular dystrophy or spinal muscular atrophy are not included as part of eitherthe general background discussion or the recommendations.Early Intervention Policy In New York State, children with diagnosedconditions that are highly likely to affect development, such as cerebral palsy, are eligiblefor early intervention services. Children with motor delays may be eligible for the EarlyIntervention Program if these delays are consistent with the State definition ofdevelopmental delay.SCOPE OF THE GUIDELINEThis clinical practice guideline provides recommendations about best practicesfor assessment and intervention for young children who have a motor disorder.The primary topics of the recommendations in this guideline are: Motor disorders in children under three years of age Identification, developmental surveillance, and intervention for youngchildren at risk for motor disorders Assessment and intervention for young children who have a motor disorderNYSDOH Report of the Recommendations: Motor Disorders 3

CHAPTER I: INTRODUCTIONDEFINITION OF OTHER IMPORTANT TERMSDefinitions are given below for some important terms as they are used in thisguideline:The entire proces

Onondaga Community College Auburn, New York Diane deRoos, MS, CCC-SLP E. John Gavras Center . Visiting Nursing Association of Staten Island Staten Island, New York Sarah Schoen, MA, OTR . Parent Representative Pearl River, New York Margaret Turk, MD Physical Medicine and Rehabilitation SUNY Health Science Center Syracuse, New York . NYSDOH .