Life Journey Through Autism: Navigating The Special .

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Life Journey through Autism:Navigating the Special Education SystemORGANIZATION FOR AUTISM RESEARCHNavigating the Special Education SystemB.indd 18/16/12 12:48 PM

Life Journey through Autism:Navigating the Special Education SystembyOrganization for Autism Research2000 N. 14th Street, Suite 710Arlington, VA 22201(866) 366-9710www.researchautism.org

This publication is designed to provide accurate and authoritative information concerning the subject matter covered. It is published with the understanding that theOrganization for Autism Research, Inc. is not engaged in the rendering of legal, medical, or professional services. If legal, medical, or other expert advice or assistance isrequired, the services of a competent professional should be sought.Copyright 2012 Organization for Autism Research, Inc. All rights reserved.No part of this work may be reproduced or transmitted in any form or by any means,electronic or mechanical, including photocopying and recording, or by any information storage or retrieval system, without prior written consent of the Organizationfor Autism Research, Inc., unless such copying is expressly permitted by Federalcopyright law. Address all inquiries to: Organization for Autism Research, Inc., 2000N. 14th Street, Suite 710, Arlington, VA 22201.www.researchautism.orgii

Dear Readers,From OAR’s inception in 2003, the organization has been committed to promotingpositive life outcomes for those living with autism through applied research, educationand awareness. Special education is a pivotal service for many children with autism.Navigating the Special Education System is intended to be a resource for families and careproviders. Ideally, this resource will enable families to access the educational servicesystem to the fullest extent, thereby promoting the best outcomes for their children.Special education provides educational support to eligible students with autismbetween the ages of 0 and 21. This broad age range encompasses remarkabledevelopmental changes for students, as well as significant opportunities to promotelearning and help students prepare to lead quality adult lives. Education professionalsmust coordinate and implement a comprehensive system so that special educationstudents can maximize the benefit of the services they receive. To do that well, parentsneed to be informed and actively engaged.This Guide provides logical support, helpful tips, and words of wisdom for parentswhose children with autism are eligible for or already enrolled in special education.It includes history and information about IDEA (the federal law that guides specialeducation), an overview of the Individualized Education Program (IEP) process, andkeys to being an effective advocate. Each of these topics is written in user-friendlylanguage, to provide families with meaningful information and support.Thank you for your interest in the Navigating the Special Education System Guide.Special education is intended to be a collaborative process that involves individualswith autism, their families, schools, and professionals all working together to ensurebest outcomes. By working alongside other members of the autism community, OARstrives to use research and information to make meaningful differences for people withautism and their families. Through collaboration, everyone benefits.Kind regards,Patricia Wright, Ph.D., MPHNational Director, Autism ServicesEaster SealsMember, OAR Scientific Counciliii

ORGANIZATION FOR AUTISM RESEARCHBoard of DirectorsJames M. SackChairmanGreat Falls, VAAnthony FerreraHillsborough, NJPeter Gerhardt, Ed.D.Chair, Scientific CouncilNew York, NYLori Lapin JonesVice ChairwomanGreat Neck, NYLisa HussmanEllicott City, MDGregory SmithTreasurerLorton, VAEdward H. SchwallieManasquan, NJWilliam DonlonHicksville, NYStaffMichael V. MaloneyExecutive DirectorBenjamin KaufmanDirector, Programs and Community OutreachCody WatersBusiness ManagerChelsea SteedDirector, RUN FOR AUTISMSean FlynnCoordinator, RUN FOR AUTISMAlexandra van WeesCoordinator, RUN FOR AUTISMiv

ORGANIZATION FOR AUTISM RESEARCHScientific CouncilOAR’s Scientific Council is comprised of leading autism and medical professionals servingas an expert information resource for all OAR matters concerning issues of research. In thatregard, the Council assists OAR’s Board of Directors in developing its research strategy,near-term priorities, and long-range research objectives. The Council also provides programguidance and oversight for OAR s research competition and plays a central role in ensuringthe highest quality reviews for prospective OAR research proposals.Peter F. Gerhardt, Ed.D.Founding ChairDirector of Education, Upper SchoolThe McCarton SchoolNew York, NYGerald P. Koocher, Ph.D.Professor and DeanSchool for Health StudiesSimmons CollegeBoston, MAShahla Ala i-Rosales, Ph.D., BCBAAssistant ProfessorDepartment of Behavior AnalysisUniversity of North TexasDenton, TXSuzanne Letso, MACo-founder and Chief Executive OfficerConnecticut Center for Child DevelopmentMilford, CTJonathan Campbell, Ph.D.ProfessorDepartment of Educational, School, andCounseling PsychologyUniversity of KentuckyLexington, KYGlen Dunlap, Ph.D.ProfessorDepartment of Child and Family StudiesUniversity of South FloridaTampa, FLMichael Fabrizio, MA, BCBAClinical Services DirectorFamilies for Effective Autism Treatment(FEAT) of WashingtonSeattle, WAJoanne Gerenser, Ph.D.Executive DirectorEden II ProgramsStaten Island, NYMichael Londner, M.D., MPH, MBAInova Health SystemsFalls Church, VAJames A. Mulick, Ph.D.ProfessorDepartment of Psychology,College of Social and Behavioral SciencesThe Ohio State UniversityColumbus, OHBrenda Myles, Ph.D.Ziggurat GroupDallas, TXSamuel L. Odom, Ph.D.Frank Porter Graham ChildDevelopment InstituteUniversity of North CarolinaChapel Hill, NCDaniel Openden, Ph.D., BCBA-DVice President & Clinical Services DirectorSouthwest Autism Research & Resource CenterPhoenix, AZ

Luke Tsai, M.D., FAACAPVisiting Professor of EducationSchool of Education and Human ServicesOakland UniversityRochester, MIMary Jane Weiss, Ph.D., BCBAProfessor of Education and Director ofPrograms in ABA and AutismEndicott CollegeBeverly, MAProfessor Emeritus of Psychiatry andPediatrics Research Scientist EmeritusUniversity of Michigan – Ann ArborPatricia Wright, Ph.D., MPHNational Director, Autism ServicesEaster Seals, Inc.Chicago, ILAnn Wagner, Ph.D.Chief, Neurodevelopmental DisordersDivision of Pediatric Translational Researchand Treatment DevelopmentNational Institutes of Mental HealthBethesda, MDvi

AcknowledgementsThe idea for Navigating the Special Education System came from Allison Gilmour, OAR’sDirector, Programs and Community Outreach, from August 2010 until July 2012. Shespearheaded this project from concept to final draft before departing for graduateschool. The publication is part of her legacy to OAR and the autism community. Itattests to the quality of her work, her passion for the subject, and most especially forthe children and families that benefit from special education services.Ms. Gilmour was assisted by Michelle Kuhn, a 2011 summer intern from GeorgeWashington University, whose diligent research contributed significantly to the informative appendices contained within the publication.Finally, this publication is made possible by generous support from OAR Board member Lisa Hussman and The Lisa Higgins-Hussman Foundation.OAR Project Team:Michael V. Maloney, Executive DirectorAllison Gilmour, Director, Programs and Community OutreachMichelle Kuhn, Project InternContributing Writers:Julie SwansonJulie AugeriIn addition to the members of the Board of Directors, Scientific Council, project team,and contributing writers, special thanks goes to the following people for their contributions to the content and editing of Navigating the Special Education System:Jane Barbin, Ph.D., BCBA-D; David DeThorne; Sharna Fitzgerald; MargueriteGardner; Deborah Hammer, BCBA; Kelly Heller; Shelly Huhtanen; CandanceJohnson; Jennifer Kim; Jessica Mazza; Robin Moyher, M.Ed., BCBA; TabithaRamminger, BCBA; Deborah Reed, MS; Charlotte Emery; and Evelyn F. Shaw, M. Ed.vii

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Table of ContentsPageINTRODUCTION.1Overview.1THE INDIVIDUALS WITH DISABILITIES EDUCATION ACT (IDEA).3A Brief Timeline of IDEA.3Overview of the Parts of ural LIZED EDUCATION PROGRAMS (IEP).11The IEP Team.12Components of an IEP.13Current sition.17Behavior Intervention Plan and Functional Behavior Assessment.17Placement.18General Education Setting.19Special Education Placement.19Self-Contained Educational Placement.20Out-of-District.20Which Educational Placement Is Right for My Child?.20Extended School Year.22IEP Addendums.22Consent.23504 Plans.235 Things to Remember About IEPs.24TIMELINE OF SERVICES.25Early Intervention Services (Ages 0–2).25Child Find.28Preschool Services (Ages 3–5).28ix

PageSchool Aged Children (Ages 6–21).29Transition (Ages 14–21).29Age of Majority.30ADVOCATING FOR YOUR CHILD.33Disagreeing with Your School District.34“Fair Weather” Advocating.35Other Tips for Advocating and Educating Yourself.3510 Steps for Disagreeing with Your School District.36OTHER CONSIDERATIONS.39Moving.39Moving to a New District.39Moving to a New State.39Special Considerations for Military Families.40Final Thoughts.42GLOSSARY.43COMMON ABBREVIATIONS.47APPENDICESAppendix A: IEP Meeting Notes.49Appendix B: Information for Meetings.51Appendix C: Related Services.59Appendix D: Writing IEP Goals.65Appendix E: IEP Goal Worksheet.71Appendix F: Organizing IEP Paperwork.73Appendix G: Common Accommodations.75Appendix H: Using a Functional Behavior Assessment.79Appendix I: Using an Advocate.83Appendix J: Contact Log.85Appendix K: State Resources.87Appendix L: Recommended Reading.91REFERENCES.93

IntroductionAs any parent of a child with autism knows, your life changes and you take on newroles after your child receives a diagnosis of autism. Ready or not, you are nowexpected to be an expert on interventions, support professionals, and special education. Suddenly, your concerns and worries are different from the parents aroundyou. While they may be concerned with the everyday path of education issues, youare left to determine your own path over the unfamiliar ground of special educationservices and learning how laws such as the Individuals with Disabilities EducationAct (IDEA) affect your child. Navigating the special education system is no easy task,but as an advocate for your child, and by extension other children with autism, thereis no task more important.OverviewThe fundamental intent of special education is to provide instruction to meet eachchild’s unique needs. Life Journey through Autism: Navigating the Special EducationSystem offers information, tools, and tips that will help you become an even moreeffective advocate for your child. Many state education departments offer pamphletswith specific information about the special education system in their state. What isdifferent about this Guide is its national perspective and specific focus on the needsof children with autism.Why write a guide about the special education system that is focused on autism?Simply stated, autism presents unique challenges. With 1 in every 88 children beingdiagnosed on the spectrum, more students with autism are attending public schoolthan ever before. Many teachers, administrators, and school support staff lack thebackground and training to meet the unique needs of students with autism. It falls tothe parents to make sure that their children’s challenges—whether with social interactions, communication, or behavior—are addressed with research-based interventionswithin the school setting. To assure this, parents must have a basic understanding ofspecial education services, their child’s rights, and their own.This Guide is designed as a resource for parents. Its purpose is to give each familythe information and tools needed to successfully navigate the education system any where in the country. More specifically, it offers: Background on special education in the United StatesAn understanding of the laws and regulations about special educationAn overview of the timeline of servicesA detailed explanation of Individualized Education Programs (IEPs)

Tips and techniques for being an effective advocateSources and links that will help you identify state specific resources and findmore in- depth informationLists and definitions of terms that are frequently used in school systemsLife Journey through Autism: Navigating the Special Education System

The Individuals withDisabilities Education Act (IDEA)IDEA is the framework of special education. While understanding a law of this natureand complexity may be daunting, it will help you understand your child’s rights andyour own, as well as the basis for special education. This will allow you to become abetter advocate for your child.In 1975, Congress passed the Education ofAll Handicapped Children Act (EAHCA)and reauthorized it in 1990 as the IndividualsIDEAwith Disabilities Education Act. In 2004, theYou can find the complete textIndividuals with Disabilities in Educationof IDEA and other resources atImprovement Act passed, though it is usuallyhttp://www.idea.ed.gov.still referred to as IDEA. This legislation is anextension of the civil rights movement and guarantees that all students with disabilities are provided a free and appropriate publiceducation (FAPE). It also requires that students with disabilities be placed in the leastrestrictive environment (LRE), where they can make progress toward achieving thegoals established in their Individualized Education Program (IEP). The overall goalof FAPE and LRE is for children with disabilities to be educated with children whoare not disabled whenever possible.This law dramatically changed educational opportunities for students with disabilities. In the 1970s, only one-fifth of children with disabilities went to school while therest stayed home or, sadly, were institutionalized. With the passage of EAHCA, moreA Brief Timeline of IDEA1975Education of All Handicapped Children Act (EAHCA) passed,mandating that students with disabilities receive public edu

Life Journey through Autism: Navigating the Special Education System . attests to the quality of her work, her passion for the subject, and most especially for the children and families that benefit from

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